I haven't posted in a while. I supposed it's like donating blood, the cancer doesn't impact me on a daily basis, so my need to post is not as great. It might also be that I have integrated my experience more. I realize going to doctors on a regular basis is just part of my life. But it's still an important one and in writing this, I feel like I'm connecting with friends. It makes me feel good.
I have applied to participate in the patient panel at the cancer center. It's a volunteer panel that reviews and recommends processes to the center. My article on using the internet was published in Coping this month and I had another article accepted for publication in June. A friend is starting a non-profit to provide colon screening for people who can't afford it and I will be on the board. I'm also supporting the American Cancer Society again this year in lobbying for increased health coverage at the state level. I did not finish the Reclaiming class offered for cancer survivors. I found that there wasn't the time to go indepth on issues in a way I could really work on them.
My health is fine. Had my routine pap smear and yearly physical and all is normal.
Wednesday, November 28, 2007
Donating Blood
http://www.cancer.org/docroot/ETO/content/ETO_1_4x_Donation_by_Cancer_Survivors.asp?sitearea=ETO - is an American Cancer Society webpage that discusses the guidelines and risks of donating blood and organs. For blood, "the American Red Cross guidelines allow people who have had cancer to donate if the cancer were treated with surgery or radiation at least 5 years ago and there has been no recurrence." For organ donations, "under select circumstances there may be an acceptable risk in using organs from donors who have had certain types of cancer." This doesn't impact my daily life, but it sets me apart. It makes me realize I'm not like everyone else.
Tuesday, October 16, 2007
All Clear!
I had my 3-month oncology appointment. My CEA marker was low, an indication that I am cancer free. A friend who had a clean colonoscopy and CT and PET scan, has a high and increasing CEA. (People can have colon cancer with a low CEA - meaning the marker is not indicative of cancer for them, but current knowledge is that a high CEA means cancer is present.) In my friend's situation, the high CEA might mean that the cancer is there, but the symptoms are sub clinical. Continued monitoring will be needed. It brings me back to that place of being afraid of relapse. I guess that is something that is just always with you.
Sunday, October 14, 2007
Reclaiming Oneself
A six week, group therapy session has started for cancer survivors. The first session was yesterday. The woman facilitating the group is good. She has a soft voice and is good at keeping the group going and interested. At first, I thought I would get bored, but the 2.5 hours passed quickly. Today we introduced ourselves and gave our cancer history. Several people were colon cancer survivors. Several were dealing with relapse and it was scary for all of us.
Job Remorse
Prior to cancer, I was conflictive about what I wanted in a job. I would often think about going back to school. During chemo, I wanted my life to be "normal" and took a parttime job. By the end of chemo, I was very tired and dropped the position. I have not worked since. My activities have become focused on the cancer. I applied for a job on Craig's List and in a few weeks found a position, well almost. The offer process got quite confused, such as being given an offer that wasn't signed or a verbal description of benefits which was not correct. I was conflictive about working fulltime and the process didn't help. It didn't bring out the best in my potential manager, either, so in the end there wasn't a match. More on their end, than mine, as I had settled into thinking I would start and if it didn't work out, I could quit. Not a good way to approach a new adventure, but that's where I was. It was good to interview and talk with people that were focused on something other than health and cancer. Now that it's not going to happen, I feel whistful that it didn't work out, yet I don't have the energy to apply for something else. I
I'm about half way through the memoir writing class and I enjoy it. I think being successful in writing a book is a combination of having a story that is compelling to someone, as well as being reasonably well-written. I don't think one has to be a great writer. From the class, I look forward each week to some people's work. The writing needs to be at a certain level, but its really the story that is being shared that connects me.
I'm about half way through the memoir writing class and I enjoy it. I think being successful in writing a book is a combination of having a story that is compelling to someone, as well as being reasonably well-written. I don't think one has to be a great writer. From the class, I look forward each week to some people's work. The writing needs to be at a certain level, but its really the story that is being shared that connects me.
Survivorship Conference
On Saturday, September 29, went to a survivorship conference, but just getting around to posting now. There seems to be an increase emphasis on helping post-chemo/cancer survivors. One session I attended was on exercise. Exercise was defined as physical activity that is planned and is repetitive movement. The building blocks of exercise are aerobic, resistance, balance, and stretching. The cells of the body need exercise, just as they need food and oxygen. Activity tolerance is defined as how much exercise one can do.
Monday, September 24, 2007
Thyroid Fears
As a result of the one year post-chemo CT scan, a nodule was found on my thyroid. Benign ones are common, but because my chances for thyroid cancer are significantly higher than average (about 1% to 2% as opposed to .01%), more monitoring is done. Today I had a fine needle aspiration biopsy. The procedure was easy. Lieing down, they numb the neck and scan the thyroid with ultra-sound, while someone - a intervention radiologist - pokes a fine needle into the thyroid. (The thyroid is close to the skin on the neck.) A pathologist is in the room, looking at the samples to ensure it is appropriate for further analysis. It took about 8 pokes and lasted about 30 minutes. The preliminary analysis by the pathologist was that it was benign.
As I was waiting to go for the procedure, I freaked out a bit and started thinking about whether it might be cancer. I thought how silly it was to be thinking of job hunting or life as usual. Just wanted to get in a car and drive away. I had not thought about it particularly before, but being there and having to face the reality got me very scared. I guess you never really get over the fear.
As I was waiting to go for the procedure, I freaked out a bit and started thinking about whether it might be cancer. I thought how silly it was to be thinking of job hunting or life as usual. Just wanted to get in a car and drive away. I had not thought about it particularly before, but being there and having to face the reality got me very scared. I guess you never really get over the fear.
Wednesday, September 19, 2007
Job Hunting
After basically not working for over a year and not really having the motivation to do anything, the motivation came back and I began exploring my options, including writing, going back to school, and going back to work. Even before the cancer, I had thought about going back to school and I was whistful about not doing so at times, but it feels different now.
A metaphor that comes to mind is one of a buffet. I have always had lots of options - many good ones - in my life. Using the "buffet" metaphor, before the cancer I didn't think too much about the selections. I might have been hungry and ate because I really wanted to or I might have eaten something just because it was there. Sometimes I was overwhelmed by the choices and sometimes having choice felt good. After chemotherapy, I was depressed. The "buffet" was there, but nothing looked appealing and I had no desire to really look for anything that was. There was nothing I wanted. Now I seem to be looking at all the options, but from a positive way - all seem appealing, but unlike before the cancer, it seems important what choice I make.
I am in the midst of an interview cycle for a couple of positions and I think I will get a job offer for one, if not both of them. The position is more junior than my previous ones, but I felt that I wanted something with less stress. It's interesting to talk to people who are very involved in something, but whose focus is not on health or cancer. I did not indicate I had "dropped out" of the workplace because of health reasons, as I had been working part-time. So it's also interesting to connect with people who don't react to me either consciously or unconsciously in ways that cancer sets you apart. The people are also younger and more career oriented than I am now, although I can relate to their current situation.
I definitely like the feeling of being part of something that feels life affirming. Like there is nothing else one should spend their time on other than trying to get a product out. Before cancer, I would often make choices based on the "fear" of what I might be losing. I still feel conflictive, but it's on the other side. I want to make a choice based on what I can be having.
I am enjoying the writing and have joined a writing class to further develop my idea on writing a book. I have also made some - albeit minimal - progress on going to school and/or other activities that would be around cancer.
A metaphor that comes to mind is one of a buffet. I have always had lots of options - many good ones - in my life. Using the "buffet" metaphor, before the cancer I didn't think too much about the selections. I might have been hungry and ate because I really wanted to or I might have eaten something just because it was there. Sometimes I was overwhelmed by the choices and sometimes having choice felt good. After chemotherapy, I was depressed. The "buffet" was there, but nothing looked appealing and I had no desire to really look for anything that was. There was nothing I wanted. Now I seem to be looking at all the options, but from a positive way - all seem appealing, but unlike before the cancer, it seems important what choice I make.
I am in the midst of an interview cycle for a couple of positions and I think I will get a job offer for one, if not both of them. The position is more junior than my previous ones, but I felt that I wanted something with less stress. It's interesting to talk to people who are very involved in something, but whose focus is not on health or cancer. I did not indicate I had "dropped out" of the workplace because of health reasons, as I had been working part-time. So it's also interesting to connect with people who don't react to me either consciously or unconsciously in ways that cancer sets you apart. The people are also younger and more career oriented than I am now, although I can relate to their current situation.
I definitely like the feeling of being part of something that feels life affirming. Like there is nothing else one should spend their time on other than trying to get a product out. Before cancer, I would often make choices based on the "fear" of what I might be losing. I still feel conflictive, but it's on the other side. I want to make a choice based on what I can be having.
I am enjoying the writing and have joined a writing class to further develop my idea on writing a book. I have also made some - albeit minimal - progress on going to school and/or other activities that would be around cancer.
Monday, September 17, 2007
Magazine Article
I wrote an article on using the internet - on-line forums, emails, and blogs. I sent it unsolicited to a cancer patient magazine and today it was accepted for publication. I had written it (and another article that I am waiting for a response about) primarily as a way for me to integrate the cancer experience into my identity rather than let it overwhelm me, but must acknowledge that when I saw the email I was a bit nervous about opening it and getting a rejection. When I saw it was an acceptance, I was pleased. The support I have gotten from everyone - including my friends via the internet - has really been important to me.
Tomorrow I am going in for a fulltime job interview. I have mixed feelings. I am both excited about being involved in something again (I have done some parttime assignments, but basically haven't worked in a year) and yet not sure I want to focus my energy on the same things I had been doing most of my life. I feel like I'm at a buffet with many options and they all look good, but I can only eat so much. The acceptance of the writing reinforces the feeling that I might like to do something different.
Tomorrow I am going in for a fulltime job interview. I have mixed feelings. I am both excited about being involved in something again (I have done some parttime assignments, but basically haven't worked in a year) and yet not sure I want to focus my energy on the same things I had been doing most of my life. I feel like I'm at a buffet with many options and they all look good, but I can only eat so much. The acceptance of the writing reinforces the feeling that I might like to do something different.
Friday, September 14, 2007
M.O.S.T.
Medical Oncology Survivorship Team - M.O.S.T. - This is a program offered by the cancer center I go to and sponsored in conjunction with the Lance Armstrong Foundation to provide a long term care overview of cancer survivorship and collect statistics on the effects of cancer treatment. I had my appointment today. Most of the information was about things such as the role of exercise and overall health care - not just an emphasis on cancer. They did not have much information on the long term effects of the chemo I took. I feel having a central place, though, to collect information and, in the future, have the data is a good thing. Their knowledge base right now is more on breast cancer (lung, then colon are the two major cancers at this time, though) and on children that had cancer and have effects from the treatment.
A Radiothon
A local radio station - WARM 106.9 FM - had their annual Catch a Cure for Cancer radiothon today. . Listeners were inspired with the stories of patients and their families, given an opportunity to call in and pledge funds to the cause. A collaboration with The Moyer Foundation, the money raised was to fund early cancer-detection research. I was asked to participate and share my story. It was interesting to do so. I went to the radio station last month and recorded a segment on how early detection would have made a difference in the colon polyps not turning to cancer. I also shared how latest research - such as oral chemotherapy - made a difference to me. I will get a copy of the broadcast and a signed baseball from Moyer. They raised $100,000.
Wednesday, August 8, 2007
Alternative Medicine
Wanted to make a comment about this, as several things came up in regards to this. The term - alternative medicine - is basically in addition to surgery, radiation, and chemo - i.e., standard medical treatments - what other things like acupunturist, massage, etc. can help in cancer treatment. A research grant was given to some doctors at the cancer center I go to to understand this better and develop guidelines that doctors can use. The first step in the study is get a better idea of what patients think about these things. I was interviewed for this. No results yet.
At yoga class I was talking about the study and a patient who goes to another clinic said this approach was integrated into her chemo sessions. An acupunturist and naturopath come in while she having her infusion. This is covered by her insurance. Then someone comes by for imagery work, which is provided by the center. Massage is an additional cost. Exercise and spirituality are not offered in any way. I thought, though, this was a good approach.
At yoga class I was talking about the study and a patient who goes to another clinic said this approach was integrated into her chemo sessions. An acupunturist and naturopath come in while she having her infusion. This is covered by her insurance. Then someone comes by for imagery work, which is provided by the center. Massage is an additional cost. Exercise and spirituality are not offered in any way. I thought, though, this was a good approach.
Ultrasound Result
The CT scan I had in July (routine 1 year post-chemo CT scan) indicated a nodule on my thyroid. I went to an endocrinologist and had an ultrasound last week. The endocrinologist called today with the results. Turns out there were two nodules - one about just under 1 cm that looks cystic and is probably benign. (Cystic means the nodule is filled with fluid.) To be sure, they are going to do a biopsy of it. There is always something. My mind goes to thinking it might be cancer. I know if it is, it's treatability is high. They take out your thyroid and you take medication everyday, but it's not life threatening. Still, I just don't like dealing with all this. As a fellow cancer survivor said: "Life for us will always be one more doctor appointment and every little extra test will always set are head in motion with the what ifs".
Saturday, August 4, 2007
NY Times on Cancer
The New York Times, on July 29, 2007, did a series of articles on cancer. A couple of excerpts from Denise Grady follow:
Push Hard for the Answers You Require
In a report by the Institute of Medicine, in 2002, “Uninsured cancer patients generally have poorer outcomes and are more likely to die prematurely than persons with insurance, largely because of delayed diagnosis.”
Cancer Patients, Lost in a Maze of Uneven Care
“In cancer, there is frequently no one best doctor and no one best treatment,” said Dr. John H. Glick of the Abramson Cancer Center at the University of Pennsylvania.
When patients consult him for second opinions or to transfer their care to his center, Dr. Glick estimated that he and his colleagues concur completely with the original doctor in about 30 percent of cases. But in another 30 to 40 percent of cases, they recommend major changes in the treatment plan, like a totally different chemotherapy regimen or the addition of radiation. Sometimes his team makes a completely different diagnosis.
In about another 30 percent of cases, his team recommends minor changes in chemotherapy, or additional tests. “We interpret things differently, maybe because we have more experience,” Dr. Glick said.
Warning Signs Overlooked
Karen Pasqualetto had just given birth to her first child last July when doctors discovered she had colon cancer. She was only 35, and the disease had already spread to her liver. ... Looking back, Karen Pasqualetto thinks she had cancer symptoms that were dismissed by doctors in 2003 or 2004 — at least two years before the disease became horribly obvious. She noticed blood in her stool, a classic warning sign of colon cancer. But it lasted only a few days, and such bleeding can also be caused by minor ailments like hemorrhoids. Many doctors do not even think of colon cancer in a young person with no family history of the disease, and her doctor said anal fissures had probably caused the bleeding. There is no way now to know whether that was correct. No sigmoidoscopy or colonoscopy was done to examine the inside of her colon or rectum. Other warning signs were also missed or ignored: anemia and blood in her stools during pregnancy and in the hospital after giving birth.
Ninety percent of colorectal cancers occur in people 50 and older — the reason screening generally starts at 50 — but that still leaves more than 15,000 new cases a year in younger people, some of whom have no symptoms.
The sad paradox of colon cancer is that it is often preventable — but not prevented. It is one of only two cancers (the other is cervical) for which screening tests can find cancers or precancerous growths early enough to cure the disease or even prevent it with surgery alone.
Only 39 percent of colon cancers are detected early. The disease is still the second leading cause of cancer death in the United States (lung cancer is first), with about 154,000 new cases and 52,000 deaths expected this year.
Push Hard for the Answers You Require
In a report by the Institute of Medicine, in 2002, “Uninsured cancer patients generally have poorer outcomes and are more likely to die prematurely than persons with insurance, largely because of delayed diagnosis.”
Cancer Patients, Lost in a Maze of Uneven Care
“In cancer, there is frequently no one best doctor and no one best treatment,” said Dr. John H. Glick of the Abramson Cancer Center at the University of Pennsylvania.
When patients consult him for second opinions or to transfer their care to his center, Dr. Glick estimated that he and his colleagues concur completely with the original doctor in about 30 percent of cases. But in another 30 to 40 percent of cases, they recommend major changes in the treatment plan, like a totally different chemotherapy regimen or the addition of radiation. Sometimes his team makes a completely different diagnosis.
In about another 30 percent of cases, his team recommends minor changes in chemotherapy, or additional tests. “We interpret things differently, maybe because we have more experience,” Dr. Glick said.
Warning Signs Overlooked
Karen Pasqualetto had just given birth to her first child last July when doctors discovered she had colon cancer. She was only 35, and the disease had already spread to her liver. ... Looking back, Karen Pasqualetto thinks she had cancer symptoms that were dismissed by doctors in 2003 or 2004 — at least two years before the disease became horribly obvious. She noticed blood in her stool, a classic warning sign of colon cancer. But it lasted only a few days, and such bleeding can also be caused by minor ailments like hemorrhoids. Many doctors do not even think of colon cancer in a young person with no family history of the disease, and her doctor said anal fissures had probably caused the bleeding. There is no way now to know whether that was correct. No sigmoidoscopy or colonoscopy was done to examine the inside of her colon or rectum. Other warning signs were also missed or ignored: anemia and blood in her stools during pregnancy and in the hospital after giving birth.
Ninety percent of colorectal cancers occur in people 50 and older — the reason screening generally starts at 50 — but that still leaves more than 15,000 new cases a year in younger people, some of whom have no symptoms.
The sad paradox of colon cancer is that it is often preventable — but not prevented. It is one of only two cancers (the other is cervical) for which screening tests can find cancers or precancerous growths early enough to cure the disease or even prevent it with surgery alone.
Only 39 percent of colon cancers are detected early. The disease is still the second leading cause of cancer death in the United States (lung cancer is first), with about 154,000 new cases and 52,000 deaths expected this year.
Friday, July 27, 2007
July, 2007
Friday, July 27 - Thyroid
I had my one-year post chemo CT scan and a thyroid module was identified. As a result, I went to see an endocrinologist last Monday. Thyroid modules are quite common and usually benign. The general population has a .01% chance of having thyroid cancer, but I have a genetic mutation for colon cancer, which also means my chances are higher - 1% to 2%. Driving to the endocrinologist, I got quite scared and was sure I was going to get bad news. She said CT scans did not really provide a good picture of the thyroid and I am scheduled to have an ultrasound next week. She did a physical exam and said it was probably just a common, benign nodule. If that is so, then she indicated she would want me to be reviewed on a regular, yearly basis. I had been feeling doctored out, but perhaps the energy required by it all exhausted me. I seem to feel comfortable about accepting that more regular doctor visits are just part of what happens.
Friday, July 20 - Emotional Exploration
A fellow survivor wrote a good synopsis of what happens when you get cancer and why we often become activists in the arena: "I think it is important ... to keep integrating new experiences ... ; that way (you) get to control them, as opposed to the other way around. I think adulthood is defined by experiences which separate people into those who have had that experience and those who have not. Marriage, Divorce, widowhood, and cancer are clear examples of that. I think, with cancer, confronting not only mortality, but the possibility of living a life plagued by disabilities is life altering at it most extreme. "
Sponsored by Swedish Medical in Seattle, The 5th Annual PsychoOncology Symposium: Unspeakable Emotions: Love, Hate, Anger and Seduction in the Clinical Encounter was held earlier this year. The recorded lectures are now available online http://videomedia.swedish.org/Mediasite/Viewer/?cid=8b059584-adba-4209-b79a-04a60fb374f5
Monday, July 16 - Oncology Visit
Good news, neutral news. They say the more you go to doctors, the more you find out that you need to go. That's how it was today.
- Polyps. Good news. The five polyps from the colonoscopy are not an unusual occurrence. When they are very small, they take a while for them to become visible. The oncologist agreed with the GI doctor that I could wait 2 years for another colonoscopy, but will probably do it in a year and half to coincide with another upper endoscopy.
- CT scan-thyroid. The good news from the CT scan was "negative for locally recurrent disease or metastatic disease." However, the indeterministic news was a "stable, small thyroid nodule". Just to be cautious, I've been recommended to go to an endocrinologist. According to one web reference (www.endocrineweb.com/nodule.html), "Occasionally a thyroid nodule is found because the patient is undergoing a CT scan ... of the neck for some other reason ... Thyroid nodules found this way (by accident) are cancerous far less than 1% of the time." So I'm probably fine, but just one more thing to get checked out.
- CT scan-contrast. The other item from the CT scan was there was a small concentration of the contrast in a pocket in the stomach. Since I had an upper endoscopy (looking into the stomach) less than a year ago, it's probably nothing. The oncologist has emailed the GI doctor who did the procedure to make sure he agrees that this can wait until next year, when the next routine endoscopy is scheduled.
I appreciate the thoroughness of the oncologist and do know it's the right thing to always follow-up, but I just feel doctored out.
Thursday, July 12 - "Hoof" and mouth
My right thumb (which stopped working and I had surgery on in April) has almost full movement now. I still need to build strength and I cannot totally flex it up, but it's basically fine. I can write, play piano, etc. The loss of total flexing may be a result of the nerve virus that they think caused the original problem and total recovery could take up to two years. I saw the surgeon yesterday and he gave me my "release" papers. He said I could do whatever I wanted to with the hand (no 10 lb only lifting limitation) and I didn't need to go to physical therapy any longer.
I had the same reaction, but to a less intense extent, as I did when I finished chemo. I was elated that the chapter was over and my hand was better, but there's a let-down as your life is no longer organized around it. The waiting room has a jigsaw puzzle that people can work on and I stayed about an hour after the appointment, working on it and finishing it. It felt like I needed some closure.
I also have been feeling good enough lately to not be using food to deal with emotions. I've been back to eating nutritiously for over a week now and decided to reflect this commitment of taking care of myself to someone else, by agreeing to a monthly check-in with a primary care doctor. I feel like the effects of the chemo - both physically and mentally - are finally wearing off.
The biopsy report on the polyps removed came back and they polyps were benign - another hooray!!!
Saturday, July 7 - Post Colonoscopy
The results of my colonoscopy pretty much follow the lines of currently "no evidence of cancer" - o.k. for now, but wait and see. I had 5 small polyps removed, which for one year makes me feel scared that as I get older the growth will increase. Also, with the genetic mutation I have, you never know how really fast they can grow and one could become cancer sooner. I have to wait for the biopsy reports to make sure the ones removed are non-cancerous. I feel like I've gotten a stay of execution, so to speak, but next year might be different.
I noticed my anxiety over this in a few ways. The first is that I am posting more. It's a way for me to vent my emotions. Second, I was pretty calm about the colonoscopy, but right before I was put under I started crying and said I didn't want to have cancer. The third, was the follow-up phone call the clinic always does. I had forgotten they do this and when I heard it was the clinic, I thought the biopsy report must have come back and they had called to give me bad news, as they always call immediately when it is. The biopsy results take a few days, so it was just them checking up.
I was prescribed a different prep from previous times - Moviprep - and got quite sick from it. I was nauseous twice, even though they gave me meds. I was still "clean" enough, though, and the nurse said that each person is different in how much it takes. Someone commented that they initially thought it was "Movieprep" and the GI doctor was recommending movies to watch. I thought the movie Sideways for the position was appropriate, as was Cable Guy for the doctor.
Wednesday, July 4, 2007 - Western Diet
SOURCE: Abstract #4019 ASCO 2007 Gastrointestinal (Colorectal) Cancer Poster Display/Discussion Session - Stage III colon cancer patients who followed a "Western diet" with emphasis on red meat, fat, refined grains, and dessert were significantly more likely to have their cancer return that those who reported they ate a "prudent diet" with emphasis on higher intakes of fruit and vegetables, poultry, and fish. Patients whose diet most closely resembled the Western pattern and fell into the fifth quintile were nearly four times more likely to have their cancer return or die within 3 years that those in the first quintile who ate the most prudent pattern foods. Risk of dying or having cancer return was 3.91 times higher for Western pattern eaters. Recurrence risk was 3.14 times higher.
My weight remained the same during the first four months of chemo and then I put on about 20 lbs. This, I attributed to, a change in metabolism, but it has been about a year since completing and I've put on another 15 pounds. I know I am eating badly - the Western diet - that is described here - so not only am I heavier and have all those "body image" issues to deal with, but now am increasing my risk for a recurrence. I do all these things - surgery, chemo, tests - to reduce the risk, so why not have a better diet?
Wednesday, July 4 - Resources on-line
http://healthlibrary.stanford.edu/ - This is the home page to the Stanford University health library. There is an ebook link that has 1,000s of books on-line and a Medline link is to recent research, among other things.
http://www.mskcc.org/mskcc/html/11570.cfm - alternative medicine at Sloan Kettering
My yearly colonoscopy is tomorrow. I'm handling the anxiety by focusing on prep tonight.
I had my one-year post chemo CT scan and a thyroid module was identified. As a result, I went to see an endocrinologist last Monday. Thyroid modules are quite common and usually benign. The general population has a .01% chance of having thyroid cancer, but I have a genetic mutation for colon cancer, which also means my chances are higher - 1% to 2%. Driving to the endocrinologist, I got quite scared and was sure I was going to get bad news. She said CT scans did not really provide a good picture of the thyroid and I am scheduled to have an ultrasound next week. She did a physical exam and said it was probably just a common, benign nodule. If that is so, then she indicated she would want me to be reviewed on a regular, yearly basis. I had been feeling doctored out, but perhaps the energy required by it all exhausted me. I seem to feel comfortable about accepting that more regular doctor visits are just part of what happens.
Friday, July 20 - Emotional Exploration
A fellow survivor wrote a good synopsis of what happens when you get cancer and why we often become activists in the arena: "I think it is important ... to keep integrating new experiences ... ; that way (you) get to control them, as opposed to the other way around. I think adulthood is defined by experiences which separate people into those who have had that experience and those who have not. Marriage, Divorce, widowhood, and cancer are clear examples of that. I think, with cancer, confronting not only mortality, but the possibility of living a life plagued by disabilities is life altering at it most extreme. "
Sponsored by Swedish Medical in Seattle, The 5th Annual PsychoOncology Symposium: Unspeakable Emotions: Love, Hate, Anger and Seduction in the Clinical Encounter was held earlier this year. The recorded lectures are now available online http://videomedia.swedish.org/Mediasite/Viewer/?cid=8b059584-adba-4209-b79a-04a60fb374f5
Monday, July 16 - Oncology Visit
Good news, neutral news. They say the more you go to doctors, the more you find out that you need to go. That's how it was today.
- Polyps. Good news. The five polyps from the colonoscopy are not an unusual occurrence. When they are very small, they take a while for them to become visible. The oncologist agreed with the GI doctor that I could wait 2 years for another colonoscopy, but will probably do it in a year and half to coincide with another upper endoscopy.
- CT scan-thyroid. The good news from the CT scan was "negative for locally recurrent disease or metastatic disease." However, the indeterministic news was a "stable, small thyroid nodule". Just to be cautious, I've been recommended to go to an endocrinologist. According to one web reference (www.endocrineweb.com/nodule.html), "Occasionally a thyroid nodule is found because the patient is undergoing a CT scan ... of the neck for some other reason ... Thyroid nodules found this way (by accident) are cancerous far less than 1% of the time." So I'm probably fine, but just one more thing to get checked out.
- CT scan-contrast. The other item from the CT scan was there was a small concentration of the contrast in a pocket in the stomach. Since I had an upper endoscopy (looking into the stomach) less than a year ago, it's probably nothing. The oncologist has emailed the GI doctor who did the procedure to make sure he agrees that this can wait until next year, when the next routine endoscopy is scheduled.
I appreciate the thoroughness of the oncologist and do know it's the right thing to always follow-up, but I just feel doctored out.
Thursday, July 12 - "Hoof" and mouth
My right thumb (which stopped working and I had surgery on in April) has almost full movement now. I still need to build strength and I cannot totally flex it up, but it's basically fine. I can write, play piano, etc. The loss of total flexing may be a result of the nerve virus that they think caused the original problem and total recovery could take up to two years. I saw the surgeon yesterday and he gave me my "release" papers. He said I could do whatever I wanted to with the hand (no 10 lb only lifting limitation) and I didn't need to go to physical therapy any longer.
I had the same reaction, but to a less intense extent, as I did when I finished chemo. I was elated that the chapter was over and my hand was better, but there's a let-down as your life is no longer organized around it. The waiting room has a jigsaw puzzle that people can work on and I stayed about an hour after the appointment, working on it and finishing it. It felt like I needed some closure.
I also have been feeling good enough lately to not be using food to deal with emotions. I've been back to eating nutritiously for over a week now and decided to reflect this commitment of taking care of myself to someone else, by agreeing to a monthly check-in with a primary care doctor. I feel like the effects of the chemo - both physically and mentally - are finally wearing off.
The biopsy report on the polyps removed came back and they polyps were benign - another hooray!!!
Saturday, July 7 - Post Colonoscopy
The results of my colonoscopy pretty much follow the lines of currently "no evidence of cancer" - o.k. for now, but wait and see. I had 5 small polyps removed, which for one year makes me feel scared that as I get older the growth will increase. Also, with the genetic mutation I have, you never know how really fast they can grow and one could become cancer sooner. I have to wait for the biopsy reports to make sure the ones removed are non-cancerous. I feel like I've gotten a stay of execution, so to speak, but next year might be different.
I noticed my anxiety over this in a few ways. The first is that I am posting more. It's a way for me to vent my emotions. Second, I was pretty calm about the colonoscopy, but right before I was put under I started crying and said I didn't want to have cancer. The third, was the follow-up phone call the clinic always does. I had forgotten they do this and when I heard it was the clinic, I thought the biopsy report must have come back and they had called to give me bad news, as they always call immediately when it is. The biopsy results take a few days, so it was just them checking up.
I was prescribed a different prep from previous times - Moviprep - and got quite sick from it. I was nauseous twice, even though they gave me meds. I was still "clean" enough, though, and the nurse said that each person is different in how much it takes. Someone commented that they initially thought it was "Movieprep" and the GI doctor was recommending movies to watch. I thought the movie Sideways for the position was appropriate, as was Cable Guy for the doctor.
Wednesday, July 4, 2007 - Western Diet
SOURCE: Abstract #4019 ASCO 2007 Gastrointestinal (Colorectal) Cancer Poster Display/Discussion Session - Stage III colon cancer patients who followed a "Western diet" with emphasis on red meat, fat, refined grains, and dessert were significantly more likely to have their cancer return that those who reported they ate a "prudent diet" with emphasis on higher intakes of fruit and vegetables, poultry, and fish. Patients whose diet most closely resembled the Western pattern and fell into the fifth quintile were nearly four times more likely to have their cancer return or die within 3 years that those in the first quintile who ate the most prudent pattern foods. Risk of dying or having cancer return was 3.91 times higher for Western pattern eaters. Recurrence risk was 3.14 times higher.
My weight remained the same during the first four months of chemo and then I put on about 20 lbs. This, I attributed to, a change in metabolism, but it has been about a year since completing and I've put on another 15 pounds. I know I am eating badly - the Western diet - that is described here - so not only am I heavier and have all those "body image" issues to deal with, but now am increasing my risk for a recurrence. I do all these things - surgery, chemo, tests - to reduce the risk, so why not have a better diet?
Wednesday, July 4 - Resources on-line
http://healthlibrary.stanford.edu/ - This is the home page to the Stanford University health library. There is an ebook link that has 1,000s of books on-line and a Medline link is to recent research, among other things.
http://www.mskcc.org/mskcc/html/11570.cfm - alternative medicine at Sloan Kettering
My yearly colonoscopy is tomorrow. I'm handling the anxiety by focusing on prep tonight.
Past Postings
Month 13, June, 2007
Tuesday, June 5. As I learned from my cancer experience, it is important to get copies of your medical sessions. I did so for the neurologist that I went to about my hand and in reading his notes realized I had mis-understood. He does think I have Parsonage-Turner virus. From "Orphanet", Parsonage-Turner ... characteristic (is) paralysis of some muscles ... etiology remains unknown... treatment is symptomatic... prognosis is favorable with about 75% of complete recovery within 2 years... incidence estimated at approximately 1.64 in 100,000".
I focused my fear about this on a test - EMG - they can do to measure muscle responsiveness via electric current. Because of my reaction the doctor did not insist I do the test immediately, but does recommend it in the report, depending on how my healing progresses. I learned enough from the cancer that even if the test is uncomfortable, knowing is always important.
My hand is doing better. I went to physical therapy today and my flexibility in all joints was the best its been since the surgery.
Sunday, June 3. I think it still hasn't totally sunk in that I'm a year out from my last chemo treatment. It feels in some ways like it was very distant and in other ways like it was just yesterday.
My right hand - from the tendon repair - is getting better. I started playing the piano for exercise. Although the surgery (which was in April) was for the thumb, the hand and wrist were immobilized as well. Your muscles deteriorate rapidly with non-use. For example, when astronauts return from even a short time in space they have trouble walking.
The whole incident of the thumb brings back the cancer scare on an emotional level. I saw the neurologist this past week and he basically agreed with the surgeon, with his last words being my situation was highly unusual and not something he's seen before. We left that we would do nothing and if after I see the surgeon next - on June 13 - they'd decide if I should have an EMG test. It's where they put a needle in your muscle and then put an electrical current through you. He did some testing - like making me walk on my toes and checking my reflexes and strength in both my arms and legs - and all was fine. The muscle in my thumb is weak, but definitely working now. He said that if I had something systemic then I would have other symptons. He said the nerve virus - Parsonage Turner - has a different progression than mine did. So the cause is puzzling, but not much to be done now. I need to turn it over and wait, like with the cancer.
Month 12, May, 2007
Wednesday, May 23. It was a year ago - May 22, 2006, that I took my last dosage of chemotherapy, so today is my one-year anniversary since of being chemo-free. I've been reflecting on how things have changed. First, I am not working in my profession at all. I remember when I started chemo I wanted my life to be the way it was and took at new part-time position, which I left after about six months and haven't done much. I have been involved in some volunteer work, but it's a minimal time commitment. Second, I have had a big weight gain - about 35 lbs. About 20 lbs of it occurred the last two months of chemo, but the remainder has occurred since then. I find I like to exercise still (although not as strenuously.) I walk everyday and take classes - like yoga - regularly. Third, my family and friendship relationships have somewhat changed. One of my closest friends now is a fellow cancer-fighter. I can talk with her in a way I can't with other people. I was very actively involved in on-line chemo forums and groups during the chemo and I have stopped most of that activity. It's hard on my emotionally to have to keep facing the cancer. I love my family, but feel distant at times. The desire to just "be alone" and by myself is often there. I also don't know where or what I want for the rest of my life. I think this questioning was a pre-cancer issue for me, but it seems like I'm more willing to be a "victim" about it - not taking action to do something and not being satisfied with where I am.
Month 12, May, 2007
Wednesday, May 23. It was a year ago - May 22, 2006, that I took my last dosage of chemotherapy, so today is my one-year anniversary since of being chemo-free. I've been reflecting on how things have changed. First, I am not working in my profession at all. I remember when I started chemo I wanted my life to be the way it was and took at new part-time position, which I left after about six months and haven't done much. I have been involved in some volunteer work, but it's a minimal time commitment. Second, I have had a big weight gain - about 35 lbs. About 20 lbs of it occurred the last two months of chemo, but the remainder has occurred since then. I find I like to exercise still (although not as strenuously.) I walk everyday and take classes - like yoga - regularly. Third, my family and friendship relationships have somewhat changed. One of my closest friends now is a fellow cancer-fighter. I can talk with her in a way I can't with other people. I was very actively involved in on-line chemo forums and groups during the chemo and I have stopped most of that activity. It's hard on my emotionally to have to keep facing the cancer. I love my family, but feel distant at times. The desire to just "be alone" and by myself is often there. I also don't know where or what I want for the rest of my life. I think this questioning was a pre-cancer issue for me, but it seems like I'm more willing to be a "victim" about it - not taking action to do something and not being satisfied with where I am.
Thursday, May 17. I had the cast taken off yesterday from the right thumb surgery on April 19. The thumb is working again, so that's good, but not knowing the cause or how systematic it is, is scary. When the surgeon told me that he never seen this before and its why he referred me to a neurologist (I go May 30), I had those feelings like I did with the cancer - "why me" and fear - although "why me" was more overriding. My thumb is pretty stiff and I have to do these exercises 5 times a day, so I won't know the full range of motion for a while.
Yesterday was also a cancer awareness day sponsored by the Lance Armstrong Foundation. I went to a luncheon. There is always an immediate connection with fellow cancer fighters, but it also gets me upset to be reminded that I'm "part of the club".
Sunday, May 6. Someone told me that everyone knows they are going to die, but cancer patients believe it. When people I've met in the past year, die, I find it difficult for both them and myself. I met a woman over the internet through a colon cancer forum. Although we never met in person, we emailed to each other directly and spoke over the phone. She lived in Virginia, close to where I grew up. She had two small children. She died last week. On Friday, I went to a fund raising luncheon for the Cancer Lifeline, where I have received so much support. They honored three caregivers, one of which was in my support group. Although the cancer fighter had died some months back, hearing the honoring of his caregiver - his wife - and meeting all his children and grandchildren made me realize how impactual this disease is. It stops lives when there is so much more that could be given.
With colon cancer, early detection makes the disease almost preventable and yet people still don't follow up. It was identified that I genetic mutation and my close family members should get tested. This was several months back and yet it still hasn't happened. I received a follow-up letter from the clinic yesterday and the recommendation was even stronger than before - my siblings, nieces, nephews, children, and first cousins - should be tested or have colonoscopies before age 18.
Month 11, April, 2007
Monday, April 30. About 4 weeks ago, my right thumb wouldn't bend. I lost the ability to bend it back. I went to a hand specialist and he said the tendon was severed. He would take a tendon from the index finger and re-route it to the thumb. I had the surgery about 10 days ago. It was not that difficult. They numb your arm and I had drugs, like when you have a colonoscopy.
It turned out the tendon wasn't severed, but was very baggy and loose. I knew this after the surgery, as the doctor said he tightened it up. I found out today when I went in for my post-op visit that the tendon in my right index finger was also loose. This happens when there is nerve damage and the muscle and tendons can't be in use. So the issue now is what caused the damage to begin with? They are theorizing it could be anything from trauma from the insertion of an IV to the effects of chemo to a nerve destroying virus to a wider nerve condition. I have an appointment with a nuerosurgoen to get further testing. They don't know if this surgery even corrected the problem and won't until the cast comes off in another month.
I'm just feeling it's so unfair and scared. I don't want anything else to be wrong with me. I don't want any more medical issues in my life.
Month 10, March, 2007
Friday, March 30. I went to a colon cancer fundraiser last night. I went because one of my friends - someone I met through my colon cancer support group - was on the committee and because the entertainer - Steve Tyrell - is one of my favorites. It was a good evening - both fun and poignant. The best part was that my friend - who has been working tirelessly as a volunteer - was singled out and given a $10,000 grant to further her work in helping fellow cancer survivors. It was poignant because it was hard not to see the effects of this disease. Steve Tyrell's wife died from the disease and part of the evening was a remembrance to her. They played a t.v. segment where he was interviewed on his wife. It was especially difficult emotionally when he talked about the impact of his children losing their mother.
Monday, March 26. I had my 3 month appointment with my oncologist. My blood tests were all fine. CEA was under 0.7 and my cholesterol was 184. I had a cholesterol test about three months ago and it had jumped to 240, so not sure if this was an effect of the chemo. I feel fine, but when we discussed that next three month visit would basically include a CT scan, I thought of recurrence crept into my brain and I ended on a scared note.
Thursday, March 8. March is Colorectal Cancer Awareness month. I went to Olympia (the state capital of Washington) today to see a bill pass in the house for insurance to pay for colonoscopies. Some insurance plans now exclude them except for diagnostic purposes. I was invited by the American Cancer Society. Two other cancer survivors from the area were invited. It was a very interesting experience. They introduced us at the beginning of the session and the House members gave us a standing ovation. The speeches before the vote on the bill, included about 10 members relating their own personal experiences with cancer. Lots of tears. Highly unusual, I think.
Month 9, February, 2007
Wednesday, February 28. A new diagnostic test GCC-B1 by Targeted Diagnostics and Therapeutics, is now available, although not standard protocol and so probably not covered by insurance. (Cost is about $400.) GCC-B1 testing is designed to be used to detect recurrence in stage II and III cancers. Guanylyl cyclase C (GCC) is an enzyme. The rationale for the test is based on laboratory research that show the presence of Guanylyl cyclase C (GCC) in colon tissue and not outside the colon except in positive regional lymph nodes (stage III) and metastatic tumors (stage IV). The assumption is that any cells in the circulating blood that are positive for GCC have been shed by metastatic tumors. This test can detect very small numbers of cancer cells. The question is what is the clinical significance of this, i.e. how does one respond to this information. Will the single or small number of cells turn into a tumor? Will the body destroy these before tumor formation? Is chemotherapy called for? Increased numbers of scans? Do nothing? So, the issue is that there is not a clear protocol if the test comes back negative. A negative GCC B-1 the one could feel truly NED and could skip some of the scans and radiation exposure. From the manufacturer's information for post-surgery:Circulating tumor cells from the original primary tumor normally clear within 2-3 weeks after surgery. When monitoring patients for recurrence at 6-months and beyond, any circulating tumor cells are evidence of a tumor at a new primary site or recurrence in the colon, or a metastasis in a distant organ.For all post-surgery patients for on-going surveillance; use GCC-B1 to find earliest sign of recurrent disease.- Negative Results - continue normal monitoring schedule/regimen- Positive Results - routine diagnostic actions to find source of metastasis- if NED, increase aggressiveness of surveillance schedule until treatable source metastasis appears.For any patient with rising CEA values but who is otherwise NED; use GCC-B1 to confirm metastatic activity.- Negative Results - continue normal monitoring schedule- Positive Results - routine diagnostic actions to find source of metastasis- if NED, increase aggressiveness of surveillance schedule until treatable source metastasis appears
Saturday, February 17. I got a follow-up email from the doctor handling the genetic testing, with a recommendation for another endoscopy in two years and that we would continue to monitor if additional surgery to remove more of the colon was necessary. I live with the cancer scare being in the background and then I get something like this and I get concerned again. I start to re-question how I want to spend the rest of my life. My activity level is very low and more inwardly focused. I got a couple of puppies, that take up time, but my day is not really spent contributing much. I feel drained intellectually, but emotionally I feel I don't want to do more. I'm now as down as I was a month or so ago, so maybe the effect of the chemo needs to wear off more.
Month 8, January, 2007
Wednesday, January 24. I got the results of my genetic testing and I do have a gene mutation. They know that this causes more polyps and to grow faster, but the specific effects manifest differently in people. In my case, it is on the milder side - having the onset later in life rather than earlier. The recommendation of treatment is basically what I am doing now, having more frequent colonoscopies - basically yearly. Depending on the number and growth each year, then this would continue indefinitely so the polyps don't become cancerous. If there are too many to remove in a colonoscopy, then I would need to have more of my colon removed. The type of gene mutation I have (APC sequencing 233de14) does not effect the rectum, so if additional surgery was needed, I would not need a colostomy bag.
The issue becomes one of testing for my family. One has a 50-50 chance of inheriting the gene mutation, so my first order relatives (siblings) need to be tested and if they do have it, then the children need to be tested. They like to do the testing as early as 18 years old, to be able to recommend extra surveillance and treatment, as colon cancer is preventable.
Since the course of treatment for me is the same as I am already doing and the worse-case treatment option did not seem so bad, m thoughts went immediately to the next generation in our family. I had not known we had a family history until I was diagnosed and would have gone in much sooner, if I had known. So now the children have this possible burden/issue. My fears about cancer and facing my own mortality have also come up again. Its hard to stay detached/put these feelings in the background, when they face you like this.
Tuesday, January 16. My CEA was 1.0, returning to its level post-chemo. So this is not really an indicator of cancer for me, but it is good news to know that the rise to 6.3 (anything over 5 is a sign of cancer) during chemo, was because of the chemo. This is normal, but when you live through it its always troublesome. Its so easy to obsess about things.
My weight is still high. I figured I eat because in a way I don't really feel like taking care of myself, although in the past week, I have been feeling better - calmer and happier about who I am. I do think this "lost" feeling, which has been described to me by other cancer fighters, is a combination of dealing with the realization of cancer and the chemical impact the chemo has on your system.
Although not something I need in my cancer fight, I thought this latest research by Dr. Wong of Sloan Kettering was interesting and holds a great deal of promise (http://www.mskcc.org/prg/prg/bios/355.cfm) which is experimental research on total anorectal reconstruction using an artificial bowel prosthesis as a possible alternative to permanent colostomy following surgery for rectal cancer.
Month 7, December, 2006
Sunday, December 24. A friend wrote: I understand that your body is healthy now but your soul still has to cope with it. I think this a perfect and kind description of where I am right now. I am very grateful for all I have, but not really feeling the passion of life.
Month 6, November, 2006
Tuesday, November 7. I had an upper endoscopy today and all was normal. (This is when they go into through your throat through your stomach.) It allows them to look at where the stomach attached to the intestine, which they can't see in a colonoscopy. This is a possible another place for cancer and my doctors just wanted to make sure. I was very nervous about the procedure, but its done by the same doctor that did the colonoscopies and you're totally out, so it was fine. Prior to the procedure I had the nervous feeling, like I might get bad news, and felt very scared.
Friday, November 3. I went to a medical symposium on the latest advances in colorectal cancer. It was odd hearing it from a doctor's perspective, where patients were "cases". I think its must be hard to be a doctor and stay unbiased in the difficult situation. Some items that they covered was how the success rate of surgeons that are trained in colorectal surgery have better results in resection site relapses. They also showed how CT and PET scans together really provides the best information, but there is the risk of increased radiation exposure. A CT scan provides the equivalent of living the Seattle area for four years.
Month 5 - October, 2006
Tuesday, October 31. I am still feeling lost, but its better. More like not having a passion. I've been making myself get out and take on activities.
Wednesday, October 4. Went to the oncologist on Monday. Will see him again in 3 months. Nothing eventful really. He confirmed that chemo does hastened menopause. Since menopause is a gradual reduction of hormones, it could be that I am more progressed than pre-chemo, which is why I am having symptoms now. He was not familiar with the itchy skin symptom and we left it that I would double check with the gynecologist at my appointment later this year. I did talk with him about my feelings of been down. He said that this is common. People are so focused on the logistics and dealing with treatment, that when its over the whole idea of the cancer really sinks in and often leads to depression. A fellow cancer fighter said that 85% of all cancer patients are on anti-depressants. I'm not ready to do medication, but must admit to a "lost feeling". What I found with the chemo, was that when it was over, I was very happy. It was like being alive again and not having the chemo hanging over me. When you face your mortality, you really think about how you want to spend the rest of your life. I have so many wonderful things in my life, but I seem not lack passion.
I had gone for genetic counseling a few months back and they wanted to gather additional information from my cousins, which they now have received. There is a family history of colon polyps and cancer, which I didn't know about until my situation happened. It is interesting how families don't talk about certain things. I found a prediction tool on the web regarding genetic mutation. The result using the tool is that my odds are low for the mutation, but I was somewhat aware of this as my onset was later in life. Also, there could be other genes involved in colon cancer which this tool doesn't predict for. I will be meeting with the genetic counselors again and probably have some testing done. The tool information from Colon Caner News http://professional.cancerconsultants.com/oncology_colon_cancer_news.aspx?id=38196 is:
These researchers used information on 1914 unrelated probands who submitted blood samples for gene sequencing for MLH1 and MSH2 genes. They found that personal and family history characteristics could predict accurately the outcome of genetic testing. The most significant predictors of having a gene mutation were: having two or more colorectal cancers, the number of first degree relatives with colorectal or endometrial cancer, young age at cancer diagnosis and a history of adenomas. The PREMM model is available at http://dfci.org/premm.
Researchers affiliated with the Colon Cancer Family Registry have also reported that the MMRpro model can assist in predicting the risk have developing HNPCC. This model estimates the likelihood of carrying a mutation in any of three genes-MLH1, MSH2, or MSH6. The model also estimates an individual's probability of developing colorectal or endometrial cancer. The model considers personal and family history of colorectal and endometrial cancers and also considers the results of previous HNPCC-related tests (if any) that have been conducted within the family. Software for performing MMpro is available at http://astor.som.jhmi.edu/BayesMendel/ or http://www4.utsouthwestern.edu/breasthealth/cagene/.
Month 4 - September, 2006
Friday, September 29. HOORAY!!!! My CEA - the blood marker test for colon cancer - went from 6.4 right after chemo to 5.3. Anything over 5 is usually an indication of cancer, but the marker can also rise as a result of chemo. The lowering of the CEA means it was a result of the chemo and I will be on normal screening guidelines - i.e., continued blood tests and CT scans. The oncologist indicated it can take a while - even up to a year - for the chemo to get flushed from your system. I am also experiencing a few other minor symptoms. I have broken out with some acne. As a result of one of the colon forums I monitor, two other people reported the same symptom after taking Xeloda. In addition, I am experiencing "hot flashes". Becoming menopausal after chemo (not sure if Xeloda is one those meds) is not unusual, but since I already was I didn't expect additional symptoms. I did not have "hot flashes" before and am now. Whenever I get hot - even a bit sweaty - my skin gets itchy and it feels like little pin pricks.
Wednesday, September 20. It has been about four months since the end of my chemo. I connected with the oncology staff and reconfirmed my tests and appointments. I go in next Wednesday for my blood marker tests and see the doctor the following Monday. If the marker is down, then it means the rise was due to the chemo, if its not then additional tests - such as a CT scan - will be needed. I'm posting because of the upcoming events has me nervous and scared. Its hard just to let go. That being said my diet has not been good. I know eating right is something I can do to give myself a health edge and yet am not doing so.
Saturday, September 2. I've been thinking about how the pattern of feelings I have towards my oncologist and his team is the same as I have towards the cancer, but in a positive/feel safe way rather than a negative/scared one. Having cancer is always in the back of my mind, but most of the time I'm detached from it. Then something will trigger my thinking about it and I get scared and it takes over my feelings. Its the same with the oncology team. I don't really think about them, but then something will trigger my reflection. Maybe the attachment to one's team is needed to counter the cancer feelings - like a symbiotic relationship.
I've been asked at the Unitarian Fellowship I belong to, to be part of the Sunday service, indicating how the lay ministry there helped in my cancer journey. I also had to interact with the oncology team to set-up my next round of tests and appointments at the end of the month. This focus made me think about the cancer again and I went from feeling the cancer has all been gotten out and there won't be a relapse to thinking what if I was wrong and I did. The main trigger for this was the possible scheduling of another CT scan, when the guideline was to wait a full year. I obsessed the oncologist felt I must have cancer and that's why I needed another CT scan so soon. It turned out, we are going to do the recommended CEA/blood test only and only if the marker is high, would the CT scan be done. This makes sense and is consistent with the "no evidence of cancer" from the last scan, but it still got me scared. I would say I was depressed today and watched two movies today, rather than exercising or working or seeing people. I kept thinking about what if I needed more chemo and if I only had a short time to live. Its interesting how easy the cancer can take over my emotional state.
So aside from that, I really am doing fine. My chemo weight is still there, but aside from some lingering tiredness feel good.
Month 3 - August 2006
Saturday, August 12. I am now officially a consultant with my company, as opposed to a parttime employee. The difference is not significant to me, but the process for the transition made me reflect on my cancer and how the experience has impacted me. When I first agreed to be an employee, it was right before chemo started. It was very important to me to have my life "normal" and I was grateful and excited about the position. We basically had a six month agreement. At the end of this period, the company's position was that they just didn't feel I was providing the "punch" they had expected. Aside from the initial "being rejected/not good enough feeling" which these situations always bring out, I was relieved it was over. I realized that I prioritize things differently. (Something many cancer fighters say, but it feels different when you experience it directly.) I would often take an action item and just not really have the desire to follow-through on it. I realized that by not getting focused on work, I really had transitioned from a part of my life. I have made a business and technical contributions that I am satisfied with.
Tuesday, August 1. CEA is a marker that for about 50% of the people indicates if you colon cancer. (They don't know why its not accurate all the time.) If it is high (over 5), then its usually a safe indicator (does not give false positives) of colon cancer. It does, however, often go up during chemo, as its a response of your system to the drug. Prior to my surgery, my CEA was low - about 1.4 - but I did have cancer in my system. Over the course of chemo, it went up slightly each time. One month after chemo, it was 6.4. So not a good sign. The test was run again at the 2 month mark (last week) and it stayed 6.4. I just got the oncologist's official position today. He believes that since there was not an upward trend as the chemo has stopped, the elevation is an indication of a reaction to the chemo and that it will take some months for it to go back down. He said he has had several patients whose post-chemo CEA went much higher and then went down. So at this time no additional testing will be done. I go in again in two months for another blood test and CT scan again. I think this wait and see just comes with the territory. Its hard, though.
I've been exercising and eating healthier. I put on about 15 lbs during chemo (I found out many people gain) and I've lost about 5 lbs so far. The exercising feels good - I like moving - but eating well is harder. I have cut down on the sugar. I know that I feel like I'm doing something by eating well and exercising to minimize the cancer recurrence risk, which helps me emotionally. Instead of being a "victim" of the disease, I can be a fighter.
Month 2 - July 2006
Monday, July 24. The biopsy report from the colonoscopy came back and the results were fine. The GI doctor indicated I didn't need to return for two years. The latest guidelines, published June, 2006, recommend every three years (http://caonline.amcancersoc.org/cgi/content/abstract/56/3/143 - Guidelines for Colonoscopy Surveillance after Cancer Resection), so I think this will be a safe interval. The oncologist wants to me go back in a year, however, so that is what I will do. Its interesting how little things can make you feel better.
Tuesday, July 18. My colonoscopy results came back today. The polyps were not cancerous, but possibly pre-cancerous. The doctor recommended genetic testing, which I have already consulted on, but its still unsettling. Living with uncertainty is difficult. I don't know if one every gets used to it.
Tuesday, July 11. Had my colonoscopy today. The good news was the GI doctor said my polyps were little - definitely non-cancerous - but there were about 10 of them and he will send them out for biopsy. The bad news was that my CEA test came back after 4 weeks since chemo. It was up to 6.4. (I was about 1 prior to surgery and it went up slightly each chemo treatment cycle.). My oncologist says that can happen with chemo and to take another blood test - for just CEA - in another few weeks. If it goes down, then fine and, if not, we will do a PET scan. Its just scary to me right now.
July 10. I go in for my first post-surgery colonoscopy. tomorrow I seem to be focused more on the prep than the actual procedure or results. I guess some of that is because a recurrence, if it does occur, usually occurs 18 months out from diagnosis and mine diagnosis has been less than year. I know, however, that there is nothing like normal in cancer. I'm focusing my fear, I guess, on thinking about the prep. In the past, Fleet's Phosomax was recommended and the in June an FDA alert came out indicating it could cause kidney failure. So I was switched to Halflytley, which meant I had to drink a gallon of the liquid last night. It didn't taste too bad, but it was alot of drinking and I got a bad headache.
July 7. Research was published today indicating that "patients whose exercise reached 18 METS a week had an 85% chance of being cancer-free in three years ... those with less.had a 75% chance". (www.fightcolorectalcancer.org/nes/2006/07/exercise_reduces_recurrenc_af.php)
July 3. Went for my approximate one-month post-chemo visit. I was still slightly anemic, but improving, so the oncologist wasn't too concerned. I go for my next visit in 3 months.
Month 1 - May/June, 2006
June 26 - Day 28 post-chemo. The cancer center I go to has started a clinic to assess prevention and detection of cancer. (Yes, they have medical specialists for everything these days.) Anyway, the focus was primarily genetic and with two aunts and an uncle having colon surgeries and assorted cousins with issues, there is speculation that my colon cancer may be genetic based. There are two genes they know about that if they are mutated will cause colon cancer. The mutations can cause cancer early in life or later, like in my case. I will be gathering more information from my relatives and then having some genetic tests done. Depending on the results, then guidelines for screening for myself and my family can be developed. One of the scenarios discussed was having the entire colon removed. It was quite scary to hear that. They will send me a letter as well as details of their suggestions to my oncologist and myself.
Week 4. (June 24) From about half way through chemo until the end, I really had these projected feelings of abandonment - that I would have difficulty in moving on with the loss of seeing you regularly. This feeling was also coupled with the fear of cancer recurrence and that without the chemo I wouldn't be fighting. I find it interesting that these feelings did not materialize. My first feelings after chemo were ones of just being jazzed - I was really on a high. Then I crashed. I wouldn't call it depression exactly, but more of a detachment. What did I really want the rest of my life to be like? More a feeling of not wanting anything, just letting things happen and then I'd react. I felt disconnected from things. I'd say now that I still have this "whatever happens" attitude, but my feelings are positive. I'd describe it as playful. Whatever floats by that catches my eye I go with. When I'm doing whatever it is, I'm quite happy and satisfied, but I'm willing to go on with whatever happens. I know some of this is a reflection of my physical healing. I didn't realize how "foggy" my brain really was on chemo. I often want to exercise and move and am doing much better, but my feet are still not quite there and I still often all of a sudden get extremely tired. I'm sleeping 8-10 hours a day. I can walk about a mile or do 15 minutes of the Stairmaster, but then also get tired.
Week 3. (June 12) My feet are better and I am no longer wearing slippers. I am wearing my "cancer" shoes - slip-ons I bought that are two sizes larger than I normally wear so I can accommodate thick, cushioning sox. I have put on 10 lbs during the chemo and know I want to lose it, but am still not quite able to be motivated enough. I keep telling myself that when I can really exercise again it will be easier. The oncologist said it'd be about 4 weeks until I felt 80% o.k., so I'm just going to let things slide a bit more. I actually did some errands and chores today, which felt good.
Week 2. (June 5) I got on a plane and went to a family reunion. It was great seeing everyone, but probably a bit premature, as I had to be careful about people not stepping on my feet and getting tired. The tiredness is really bad this week. Its not being sleepy, as much as weary and not wanting to get up and do anything.
Week 1. My last day of chemo was Monday, May 22. My feet hurt about the most of any time during the taking of the chemo. They felt like they were on fire. It wasn't quite as bad as when the dosage was reduced, but close to it.
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End of Chemo - Tuesday, May 30, 2006 - HOORAY!!!!!. I went to the oncologist today. My CT scan of my chest and abdomen continue to be clean - no evidence of cancer. My blood tests were fine, but my CEA went up again to 4.2. The oncologist said that it was still under five and a more meaningful indicator will be what it says in future tests. I feel so jazzed and happy that the chemo is over. I know it will be a while before the chemo is out of my system and I can exercise again, but I feel like this chapter is over. I decided to start another blog entry to highlight my post chemo journey, as I need closure.
Cycle 8 - Tuesday, May 9 - May 29, 2006
Day 167/1 (cycle 8, Day 20) - Sunday, May 28, 2006 - I wanted to make an entry to reaffirm the mind-body connection. I have been extremely joyous about completing my chemo and just enjoying myself. Yesterday and earlier today my withdrawal symptom from the chemo was bad. Not sure why, but my off weeks of the Xeloda were sometimes worse then when I was taking it. My feet this time, especially hurt. Not as bad as when the dosage was reduced, but bad enough that they felt like they were on fire. Nothing seemed to address the pain. I ended up totally crashing emotionally. I got very angry over little things with my husband. (Who I will report was overall quite supportive. At one point, he didn't respond, let me vent, and then just held me while I cried that I didn't want to be sick anymore.) Now that I am not in such pain, I also emotionally feeling better and plan to go out and meet up with some friends for a couple of hours. My hands and feet are still red, but not painful.
Day 161/7 (Cycle 8, Day 14) - Monday, May 22, 2006. YEA!!! Just took my last dosage of Xeloda. My chemo regime is over and it feels great. I know they'll be some residual side effects for a while. Tomorrow we are burying our dog who died of cancer. I am sad to say my final good-bye to her, but it was because of her I got the tests that helped me detect my cancer in its earlier stages, so my prognosis is high. I feel like she wanted to stay with me through this. So its time.
Day 159/9 (Cycle 8, Day 12) - Saturday, May 20, 2006. I went to the naturopath doctor yesterday. She recommended the following post-chemo: A detoxification which is basically having fruit juice and protein powder for three day and the following on-going supplements:
BCQ - 3 caps-twice a day (per cap: bosellia-200mg, bromelain-100mg; curcuman-200mg, quastar-100mg); citrus pectin - 1T in juice-twice a day (1T: 6.5 grams); ultrathistle - 1 cap twice a day (1 cap: 360 mg); fish oil - 4000 mg a day; 1 enteric coated aspiring per day - 345 mg; wobenzyme - 1 tab at each meal. I'm still very jazzed about being close to the end of chemo. I think I'll feel more relieved when I have my CT scan next week.
Day 157/11 (Cycle 8, Day 10) - Thursday, May 18, 2006 - CELEBRATION! A fellow survivor suggested and I decided to have an "end-of-chemo" celebration. One of my friends helped me with the details. Although I still have four more days of taking the Xeloda (so not officially at the end, but it was the best time), I invited my friends and fellow survivors from the cancer center where I take exercise and education classes to be my guests at the Pizza Hut buffet which was close to the center. About 15 people showed up at the luncheon and I got lots of flowers, balloons, cross-word puzzle, and little gifts. One was a mini-massage kit where the note read, that I had been using lotions on my feet and hands because I had to, now I can do it because I want to. It was just so nice when people really understand. I also brought a journal with me and asked people to write a little about their experience on their journey. This was the best gift ever! My husband also showed up and got to meet everyone, which was nice and a friend who couldn't be there, left me a voice message. I felt very supported. That evening we went over to some friends for dinner and then to see Cirque Du Soleil. Its just such an amazing show. The final act was really energizing - these acrobats sort of "shot" themselves from a swing to a big sheet. They just seemed so happy moving their bodies and to be alive. It was a great reaffirmation of life.
Day 153/15 (Cycle 8, Day 6) - Sunday, May 14, 2006. Counting today, only nice more days of taking chemo. When I think of it that way, I am jazzed and happy. However, my off week prior to this cycle seemed to the worse in terms of symptoms. Physically, it looks like I am going to lose 3 toenails. Its not that I just get tired, but I just don't have the peppy feeling ever. This impacts how I emotionally feel as well. I get angry at little things or start crying. I don't feel depressed, as much a de-energized and reflective. I am wondering what I want from the rest of my life, like where I am now is just not enough. My weight gain (around 5 lbs) since the start of chemo also makes me feel bad. I just don't want to be fat, but during the day I get these real cravings for sugar and just indulge. Went away for a week of different travel. It was "nice" (although that is the wrong word, as having cancer isn't "nice") to unexpectedly find people that were in the cancer journey, as well. Some were fellow travelers wearing yellow or blue wrist bands or people I knew that were now more open about letting me know their cancer journey.
Cycle 7 - Tuesday, April 18 - May 8, 2006 - Almost done
Day 137/31 (Cycle 7, Day 11) - Friday, April 28. At the end of cycle 6, my MCV and MCH (not exactly sure what they are) were slightly above the normal range, indicating that I might be a bit anemic. I have since found out from one of my internet buddies, MCV (mean cell volume) and MCH (mean cell hemoglobin) themselves don't indicate anemia, but can be used to evaluate the reason of anemia. Changes of HB, HCT, and RBC will indicate anemia. MCV and MCH are the size and the color of the red blood cells, respectively. Even you do have a slight anemia, it is a common side effect of Xeloda
I had not been taking my vitamins regularly during Cycle 6, so the onc recommended I do so. I am permanently wearing slippers now. Basically, the blisters that I had developed some weeks back on the top of my tops have not totally healed and so its painful to wear anything that presses on them. Aside from that and going from being extremely tired to wide awake, no real new symptoms. Emotionally, it seems the same. One minute I am elated that I've only got four more weeks to go to just feeling down about everything. What do I want to do with my life? Will I relapse? There was a fund raiser luncheon yesterday for a cancer group that I take my yoga lessons at. Several people from the class came and it was nice to see everyone in regular clothes. I totally gave into my sugar cravings.
Cycle 6 - Tuesday, March 28 - April 17, 2006
Day 152/43 (Cycle 6, Day 20) - Sunday, April 16. A friend in the later stages of the disease expressed the sentiment that he had met so many kind and wonderful people during the last couple of years of his journey that he thought this was God's way of giving him a joyful memory before passing on. My CEA has gone up since pre-chemo from .07 to 2.6. My oncologist says its normal for the CEA to go up during chemo treatment and that since it is still in the normal range, he's not concerned, but I must admit to still be afraid.
Recent research indicates that Celebrex reduces recurrence of colon polyps. The popular arthritis drug Celebrex may help to prevent colon cancer in people at high risk of the disease, but the benefits need to be weighed against the chance of developing heart problems, researchers say. Two large studies released today show that the drug can slash the risk of developing new precancerous growths called polyps by 33% to 45% in people who already have had growths removed. http://www.webmd.com/content/article/120/113880
Day 120/48 (Cycle 6, Day 15) - Tuesday, April 11. I had my regular oncology visit today. My chemo is going fine. We scheduled the post-chemo tests - blood work, CT scan, and colonoscopy. At the appointment, it didn't have much impact, but now a few hours later the fear is setting in of what the tests might reveal. I also realize that my regular visits to the oncology clinic will be less after the end of chemo. They are an integral part of my life and seeing the staff less feels like a real loss.
Day 110/58 (Cycle 6, Day 5) - Saturday, April 1. I had an appointment with my naturopathic doctor. She reviewed my blood work and said things looked good. She said after chemo she would recommend other herbs and botanicals to take. There was a recent show on PBS (http://www.pbs.org/thenewmedicine/) . The one hosted by Dana Reeve before she passed. The emphasis was on how things other than traditional Western medicine is helpful, including things like communication time with the doctor. What really struck me was not just the truthfulness of it, but how health care will continue to be even more bifurcated between people that have resource and those that don't. Its clear that there is just not enough money to do all the "best" things for everyone. I know this, but yet I feel that the system we have now is makes the coverage even less than it needs to be. People often have difficulty even getting "good", must less "best".
My feet are pretty much healed from the 8K walk last week. Am back to wearing my extra wide black shoes/fluffy sox, rather than slippers. I started keeping a bike in the car and just going out when the weather is nice. Think I will keep this up and save the feet. The first few days of this cycle I didn't really sleep much, but totally crashed this morning.
Cycle 5 - Tuesday, March 7 - March 27, 2006 - More than halfway!
Day 103/65 (Cycle 5, Day 19) - Sunday, March 26. My husband and I participated in an 8K walk/run for Colon Cancer Awareness this morning. The oncology staff also walked it and it was really great to connect and see the support outside of the clinic. This is my off week for the chemo. I went on a business/pleasure trip this past week and walked a great deal. My feet really blistered, but have been taking care of them (not walking much) these past couple of days, so I could walk it. It helped, but my feet blistered again.
Day 98/70 (Cycle 5, Day 14) - Monday, March 20. Its the end of the fifth time of Xeloda. Had my oncology visit, we discussed what happens after the chemo is over and what happens in relapse cases. There wasn't any information I didn't already know, but a combination of "being able to hear it now" (the logistics of chemo are not as overwhelming) and the focused the discussion, got me really scared. I think the chemo impacts your body and does make you more emotional. After a few days now in my off-week, I'm still scared but have a different perspective. Yesterday was nice and sunny and I enjoyed the outdoors and being able to be happy with that. So what the oncologist said will happen after chemo, is that there will be CT scan every three months for the first year. He said this was a bit more than the guidelines, but its what he did. He said that relapses usually start around 18 months after initial diagnosis and if you're free after 5 years, you're pretty much not going to.
The company insurance goes from May 1 to May 1, so we are dealing now with selecting next year's policy. The premiums for the insurance plan we have gone up about 150%. Its still reasonable considering over insurance plans, but its a big increase. They are offering lower premium plans, but the coverage isn't as good and don't want to chance anything. I am glad the policy and the carrier won't change, as its always a hassle to deal with it and just don't want to bother with it.
Day 90/78 (Cycle 5, Day 6) - Sunday, March 12. Haven't done an entry in a while, but quite a few cancer things have happened. I think the most significant is that I am at a place where I can share my feelings about my dog - Cashew - dieing on Friday, February 24. She had been diagnosed with cancer last August and was given two weeks to live. She stayed around for over six months. Its because of her I realized the need for early diagnosis and had my colonoscopy. I think she stayed with me to give me the strength I needed to fight my own cancer and passed when she knew I was strong enough.
Last night my husband's company had its annual Spring party. It is always a formal affair and I focused for weeks on what I was going to wear. Due to my feet issues from the chemo, I wear thick sox and extra wide shoes - not the most compatible with evening wear. I ended up wearing a long black skirt. It wasn't so much about what people thought, but the fact that I look forward to dressing up every once in a while and I went to that "victim" place because of the shoes. The little things are often a reminder of the cancer and the treatment.
CEA: My CEA is way below the 5 level and that CEA markers usually rise during chemo, but it put a scare in me. The CEA marker for me is probably not an indicator of anything, since it was so low when they found the cancer. Its once again the little things. CEA History: .07-before surgery; 1.6 after Cycle 4; 1.9 after Cycle 5.
To repeat some information in one of my colon forums:
"An initial rise in CEA level during effective chemotherapy in colorectal cancer patients may not always indicate progression of disease but may be a transient CEA surge in patients responding to chemotherapy. An initial rise in CEA level during effective chemotherapy in colorectal cancer patients may not always indicate progression of disease but may be a transient CEA surge in patients responding to chemotherapy. In monitoring tumor responses and in future guidelines for the use of tumor markers, the possibility of a surge phenomenon should be taken into account." http://www.jco.org/cgi/content/full/21/23/4466I was treated in '03 for Stage III colon cancer with 5FU and Leucovorin. My oncologist did not check CEA during treatment and when I asked why not I was told it can be erratic during treatment due to dying cells releasing CEA. Since treatment it has been checked every 2 months (per their protocol). My CEA was never reflective of having cc and even though it has always been within normal range, every so often it will go from 1.2 to 2, get me anxious and then return to the 1.2 area. There is a random fluctuation of readings within the normal range. When I asked why keep measuring it if it was never abnormal even with Stage III cc., the response was that if it should return in a more aggressive form or show up in the liver, then that might be heralded by a sustained rise in CEA, thus it continues to be checked.
I cannot recall where I read that dying cancer cells release CEA into the blood stream resulting in a temporary rise in CEA.
Predicting Chemo Therapy outcome: Press release -15 March 2006: Studying the gene-expression profiles of patients with colorectal cancer might help predict their response to chemotherapy. In a study published today in the open access journal Genome Biology, researchers identified in the tumors of colorectal cancer patients almost 700 genes whose expression was different between patients who subsequently responded well to combined chemotherapy and patients who were resistant to the therapy. These findings could be used in clinical practice to complement clinical, biochemical and genetic markers for better treatment of patients with colorectal cancer. A research group led by Sandrine Imbeaud from the CNRS and Pierre and Marie Curie University, Villejuif, France, used microarrays to analyse the gene-expression patterns of samples from colon tumors and liver metastases collected from 13 patients with colorectal cancer. The microarray analyses were carried out before the patients were treated with combined chemotherapy of folic acid, 5-fluorouracil and irinotecan. Imbeaud and colleagues identified 679 genes that were differently expressed in patients who subsequently responded well to chemotherapy compared with patients who were resistant to the therapy. The results were validated by RT-PCR analysis, which confirmed the differential expression of 22 genes selected from the list. The findings were also confirmed by RT-PCR analysis of colon and liver tumor samples collected from two additional patients. The authors were able to integrate their findings into global and interconnected molecular networks that characterize resistance in patients with colorectal cancer before they are exposed to chemotherapy. They conclude that knowledge of these networks could potentially be used to improve diagnosis and treatment of patients with colorectal cancer. website reference: http://www.biomedcentral.com/info/about/pr-releases?pr=20060315
Cycle 4 - Half Way Mark - Tuesday, February 14 - Monday, March 6, 2006
Day 84/84 (Cycle 4, Day 21) - Monday, March 6. The actual half-way mark of my chemo regime is today. My blood count numbers from the cycle were all within range, so tomorrow I begin the 5th cycle. I am looking forward to the end of the chemo. There are some family events coming up in the summer and talked with the oncologist about what post-chemo tests would be needed and when, so I could start planning. It is good to start really thinking about life again. But the end of chemo is also scary. The "waiting" for a possible relapse begins. The idea of having no control and letting be whatever will be is difficult.
There is no absolute way to detect cancer. The CEA blood marker is the only one currently used. The latest information from a researcher at Yale, is that a combination of markers may significantly increase the sensitivity of the detection to 95%.
a) Serial monitoring with CEA detected recurrent/metastasis of colorectal cancer with a sensitivity of 76%, specificity of 70% and provides an average lead-time of 5 months.b) The corresponding sensitivity and specificity for CA 242 were 60% and 87%, respectively. Combination of CEA and CA 242 increased the sensitivity to 88% at specificity of 78%.c) TIMP-1 detected colonic cancer with a sensitivity of 65% and rectal cancer with a sensitivity of 42%, at 95% specificity. Combining CEA with TIMP-1 increased sensitivity for colonic cancer from 65% to 75% and rectal cancer from 42% to 54% (at 95% specificity).d) CA 72-4 is useful in detecting early recurrences post-colonic resection with a sensitivity of 78% in a longitudinal study, and was positive up to 100 days prior to clinical diagnosis of recurrent disease. Combining CA 72-4 with CEA increases the sensitivity to 87%.e) In comparison, CA19-9 is a little dependent with CEA.
I spoke to my oncologist about this. He is very open to information I bring in. He indicated that these tests often produce false negatives, which is why they aren't standard yet. He said that if there was evidence of cancer, then my current chemo regime would be different, but he didn't elaborate. So we decided that we would run them every 3 months or so, along the same guidelines that are indicated to run the CEA test. (CEA for me was not an indicator of cancer. 5 or below is considered normal and my CEA has always been under 1.) I both want to have the extra tests to know, but am also scared what they might tell.
So then the question is whether early detection by tumor markers can benefit and how to make it beneficial. I am pretty much quoting an email from one of the cancer forums. The concerns raised can be summarized as 1) whether these markers detect early recurrence with high sensitivity +accuracy and 2) whether early treatment based on markers increases survival time.For the first question, applying multiple markers is surely to increase the sensitivity. In fact, the more markers you have, the more accurate you can get. With multiple markers, a new algorithm (pattern prediction) is able to achieve nearly 100% accuracy in case of ovarian cancer. The whole point of this algorithm is to make decision (prediction) based on statistic value of every available biomarkers. Fortunately, more markers in addition to what is mentioned previously are known to detect recurrence of colorectal cancer. New technologies allow us to identify more markers. Last year, NIH has announced a program to standardize tumor marker methodologies towards eventual clinical use.
For the second question, whether early chemo treatment will benefit survival needs to be and can only be answered by trial studies. Favorable prejudgment is essential for the approval of this trial study. The concerns can be summarized by the following questions:1. the criteria to warrant chemo treatment. If tumor markers indicate that the cancer is coming back in the next a few months with 95% accuracy, does it warrant a chemotherapy? What levels of accuracy will make you not to wait until the detection of solid tumor by imaging? Keep in mind, not all of the metastasized solid tumors are resectable (What is the percent of recurrent tumors that are resectable for curative intent?).2. the available treatment. Which regimes have been shown or are potentially to cure the microscopic tumors before they grow big? For colorectal cancer (adenocarcinoma), current regimes significantly postpone tumor growth with certain percent of complete killing. Immunotherapies may be better suitable to kill microscopic tumor cells, although further clinical trials for colorectal cancer are needed.3. risks of treatment based on tumor markers. Side effects of these chemo treatments will affect quality of life. However, if there is 95% chance that the tumor is coming back, would you sacrifice a few months of quality life to postpone and may complete suppress it? In the worse scenario, even early chemo treatment failed, you still have the option for surgical resection, isn't? Or you would still like to wait until solid tumor is detected by imaging?
Day 75/93 (Cycle 4, Day 12) - Saturday, February 25. On Tuesday I was opening the top of a bottle and used a knife to cut open the protective film. The knife slipped and I gashed my hand at the end of my thumb. My blood work was fine before I started the cycle, but got a bit scared about my clotting factor. I was hesitant to call the oncologist. I think it was me having to face that even the little things that happen in life, can have serious consequences when you're on chemo/dealing with cancer. The bleeding has totally stopped. The hand is a bit swollen and it still hurts, but I have to really deal with why I didn't call the doctor. So, its now Saturday night and the skin around the wound is very, very white. My husband urges me to call the Cancer Center (after hours now, so I feel really intrusive.) The on-call oncologist said from the description it was probably o.k., but it should be looked at sooner rather than later. So I go into the local emergency room and its reconfirmed that its healing fine on its own. The emergency doctor said stitches would have been good when it happened and the whiteness is from the moisture of bandaging it. He said to just leave it open. So it was good I went in, but one does get tired of going to doctors all the time.
Day 68/100 (Cycle 4, Day 5) - Saturday, February 18. When I went to get my Xeloda pills to take for my afternoon dosage on Friday, I discovered that two of the pills' coatings were compromised - there will chips in them. I returned the remaining pills, as well as the chipped ones to the pharmacy, for them to send to the manufacturer, if needed. They have given me new ones from a new bottle. The pharmacy contacted Roche and the manufacturer is checking their quality control, but will probably not get back until next Monday. The doctor is also going to have the pharmacist at the Cancer Center be involved. So, I guess, the question for me is were the rest of the pills I took compromised in some way? I did not take any chipped ones. I took 7 dosages - 3 full days and 1 half day from that batch. Given the peak in my tiredness about an hour after taking them and my general feeling of tiredness and minor hand and foot symptoms, I think they were doing something. The quick and positive responsiveness of the pharmacy and the doctor doesn't change the outcome, but it makes me feel like I am being competently taken care of. The situation is unusual and has not been heard of before, but my gut tells me everything is o.k.Day 64/104 (Cycle 4, Day 1) - Tuesday, February 14. Happy Valentine’s Day! My husband gave me a teddy bear with a heart. The Cancer Center indicated that flowers (actually any live plants) were not a good idea with weaker immune systems. I start the fourth round of the Xeloda today and in some ways want the chemo to be over (no more tiredness, no more sore feet or hands, etc.) and in some ways I don’t. I know when its over, then the “wait” to see if there is a relapse is always there. Today I was reminded of this by two postings on a colon cancer forum I follow. Two people were NED (no evidence of disease) for close to five years, when the colon cancer had metastasized to the lungs. Last week, I went in for a routine mammogram. (All was fine.) Waiting for the results, I was sure I was going to be told I had cancer, though. What came up was the loneliness of it all. That I would be told the results by myself with the doctor only. This is how it happened before. The surgeon came by with the biopsy results after the surgery and I was in the hospital room alone. Whether someone is there or not, I think the feeling is one of facing my own mortality. I am happy to be alive today and helping myself by taking the chemo.
Cycle 3 - Reduced Dosage - Tuesday, January 24 - Monday, February 13, 2006
Day 56/115, Monday, February 6. Had my oncology visit today at the end of the third cycle. My numbers were all fine. The oncologist said the redness and cracking in my hands and toes were normal. He said the tiredness I'm feeling is also normal with the Xeloda as the treatment cycles go on. So no increase or decrease in dosage. The other good thing that occurred today is that all my engagements with the insurance company paid off - literally - they agreed to cover the Celebrex, which helps with the side effects of the hand and foot issues. The doctor had to provide an authorization for its use in this type of situation. The actual dollar difference in my co-pay and buying it directly was not that great, but for whatever reasons I felt I really had to fight it. Its probably my way of venting my anger about having cancer and dealing with all this.
Day 50/118, Tuesday, January 31. I'm mid-point in the third cycle of the reduced dosage (from 4000 mg/day to 3000 mg/day of Xeloda). Am way more tired and sleeping deeper than in the other cycle - about 10 hours a day, but pretty much no other side effects. (In the other cycles I was often tired, but couldn't sleep - like I was on caffeine.) I'm not having that "groggy brain" feeling, which is great. My hands and fingers sometimes still feel like "they've been in water too long", but that's how they felt at the beginning of the cycle.
Day 46/122, Friday, January 27. I'm feeling fine today. I took a yoga class, but was too tired to take the strength building class at the cancer center. I've been thinking about blogs and why I decided to do one for my cancer journey. I have had other challenges (and joys) in my life and did not share those in a general way. I started this blog, to stay in contact with others I've met through the web and to have a central place for my story. I also think that cancer forces one to face their own mortality and honesty is a way to deal with it. I think the blog is a way of saying "hello" and not "good bye". Its like when I keep the TV or radio or music on to have noise around and feel like I'm not alone.
Day 43, Tuesday, January 24. Its interesting to me how much we are inter-connected physically, emotionally, spiritually. When I was feeling bad from the chemo, I was in this "I don't want to do this" and was not looking forward to starting the 3rd round. By Sunday, I was feeling physically good and starting the chemo again is now empowering. I'm doing something to fight the cancer! Its also interesting to me how when I need my spirituality the most - when I'm down - I don't turn to it as easily. I get into this "why me/victim" feeling. I find, though, that if I just reach out and act "as if" I start to feel better emotionally, as well. When I'm in a good state emotionally, I can be grateful. I had an exchange today with another woman who just had surgery 3 weeks ago and is going through the chemo decision now. It also makes me feel empowered that I can do something, by sharing my experience with someone.
Cycle 2 - Happy New Year? - Tuesday, January 3 - Monday, January 23, 2006
Day 42, Monday, January 23. I begin taking Xeloda again tomorrow. I am pretty much symptom free. My fingers still have that "I've been in the water too long feeling". I went to a colon support group tonight. I shared about having night guards made for mouth sores, as a barrier between your teeth and your lip. I'm starting to feel like an old-hand at this. I have 126 days to go. One part of me feels good that I'm 25% done, but another part of me just doesn't want to do anymore. At the meeting tonight, someone shared about a person who has been struggling for over 3 years with this disease. They have decided to go a clinic in Mexico and try something experimental. It reminded me how difficult and desperate this disease can be.
Day 36, Tuesday, January 17. Went in for my end of cycle oncology visit. The doctor reduced my dosage to 75% of what I was taking before (i.e., 1500 mg twice a day from 2000 mg twice a day). He said that each person reacts differently to the chemo and that studies were specifically tailored to what works. What is important is taking the chemo for the full cycle indicated. He said that studies always include reductions, delays, etc. So my lower tolerance for the chemo was not an indication that it was not as effective.
Day 35, Monday, January 16: Emotionally, I'm about 80% o.k. and physically pretty-much symptom free. All I can do is pray to be strong to handle whatever will be. I went to a meeting on Saturday, where the topic was fear. What resonated with me was how fear-motivated our lives are. I grew-up being afraid in my home environment, so I start out without really knowing what is legitimate fear. Add to that that our society seems to be based on fear. Everything from advertising (if you don't buy this product, you'll not be liked, you'll not look good, etc.) to our government. It made me realize the importance of letting go what I can't control and being positive and taking action about those things I can and should.
So here's my current feeling. The chemo symptom may be about me having too much drug for my system to process. One theory is that the chemo seeps out through the capillaries - the thinnest veins. So it really is a fine tune about the dosage and its how my body is. They really don't know why chemo works on some cells and not others - which is why chemo isn't and can't be 100%. So my image - rather than being one of fear - is one of having over dosed my system. My system got to a toxic level for me, which should give me a better chance of having killed the cancer. A friend had offered me a visualization of the chemo being like pacmen eating up the cancer cells. It helps.
Day 32, Friday, January 13: My feet still really hurt. I couldn't even put on socks. I had that "I want to quit chemo" feeling, but the alternative is worse, so what are you going to do? I was going to take a yoga and stretch class today, but passed because I couldn't even put on my shoes. I spoke with the oncology team and the doctor took me off of Xeloda for the rest of the cycle. Now I can obsess about whether I'll get enough of the chemo to do "the job". I was told that dosage adjustments are normal. It amazes me how much I can obsess about these things. I reached out to quite of few of my "support group" people and the doctor which helped emotionally.
From the Xeloda field trial study:
57% of patients had treatment interruption, cycle delay and/or dose reduction
83% of patients complete the full course of all cycles even with treatment interruption
93% is the median dosage intensity at the end of the study
60% of all patients got hand-and-foot syndrome (although from anecdotal experience on the websites, its 100%)
17% of all patients got hand-and-foot syndrome that was as severe as mine
34% of patients got nausea, which I haven't had - added just as a reference
10% probability is the onset of a severe toxic effect in the first month
22% probability is the onset of a severe toxic effect in the sixth month
Day 31, Thursday, January 12: My feet really hurt. I was doing fine, but after my dosage of Xeloda last night, my feet really hurt - like there were pins and needles in them. I could not put pressure on them, even socks. I iced them, used Udderly Smooth, and chlorophyll and Calendula (recommended by the naturopath doctor) and this morning my feet look o.k., but still hurt. Not as bad as last night, except for my big left toe, which hurts even though I'm not putting any pressure on them. I really feel like eating chocolate right now.
Day 28, Monday, January 9: I completed my first week of the second cycle. About an hour after taking my Xeloda doses I usually get very tired. This week I had two unusual side effects. Once I got very, very cold - blankets, jackets - nothing helped. I finally fell asleep and woke up o.k. Another time I had a swelling beside my eye and felt extremely hyper. It went away in about an hour. In one of forums, people indicated that they got heart palpitations, but haven't heard about symptoms like this. I guess chemo drugs just react differently on people. Went to a strength building class today, which was good. From my experience with Cycle 1 and other people's stories, the last few days of the cycle is always a bit more difficult. I'm not looking forward to it, but am glad I got my first cycle done last year. The holidays always go by quickly.
Tuesday, December 13, 2005 - Monday, January 2, 2006 - Cycle 1 - Chemo Start
Day 17, Thursday, December 29: I completed my first cycle of Xeloda on Monday and had a medical check on Tuesday. My blood counts were down a bit, but all were in the normal range. I am feeling almost peppy now and its great not having that "drug" feeling. I went swimming yesterday and it felt good not to be tired. My lip sores have gone away. The oncologist felt the sores from the chemo (throat/mouth sores I am told replicate quickly, so they are effected by the chemo), but I was prescribed oral Herpes medication (800mg of Acyclovir once a day) just in case. Apparently, 80% of everyone has oral Herpes virus. Usually its dormant, but with stress or reduced immune response, it can be triggered. The medication works by taking it and seeing if the symptoms occur or not. I decided my last set of sores were not that bad and even though I asked for the medication, I decided I just didn't want to add one more thing to what I was taking. People have also indicated that when their chemo is completed, they sometimes have this lost feeling. I think its somewhat that one's life has evolved around the logistics of chemo, but also that one gets connected to the oncology team and then they are also gone.
Day 12, Saturday, December 24: I woke up on Friday with my lower lip swollen and hurting a great deal. I get these minor symptoms that seem to come and go. I had red hands and legs - not hurting, just very red - this first couple of days. I don't know if it is the medication or something else physical - like having bitten my lip while sleeping - or maybe is the mental suggestion of the whole thing. I used lots of Chapstick yesterday and slept with my night guard on my upper teeth and my whitening guard on the bottom. (1/15/05 update: I did get a bottom night guard. Haven't had to use it yet, but just in case.) It feels better today, but still very dry.
Day 7: Monday, December 20: I went to a colon support group. Everyone there was in relapse or later stages of the disease. I realized that this could be me one day and it got me scared. No one there had anywhere near 33 lymph nodes taken out. I plan to ask the oncologist if that means that my immune system might be compromised in the future, like I don't have enough to obsess about. (1/15/05: I have since spoken to the oncologist, who said that the important thing is that they take out at least 14 nodes, as they have determined that they need that many to detect cancer metastasis. He said that the lymph nodes in the colon area accumulate differently than in the arms, which is why breast cancer patients are at risk for lymphodemia - a situation where your immune system is compromised because of the trauma of the lymph removal.)
Day 5: Saturday, December 17: I did some baking this past week, as we had a couple of parties and friends over. I made up a few gift bags and took them to the neighbors. Walking over there, it hit me that my life had returned to "normal". By that, I mean, the biggest thing that has consumed my thoughts over the past couple of months is cancer. I have made my decision about treatment and what to do and now all I can do is hand-it over. Whatever happens, happens. The Xeloda regime has not wiped me out and I can still do things. Do I want to go back to work (I was laid off last May and have not been job hunting)? Do I want to go back to school? All the things I would deal with if I didn't have the cancer diagnosis. I read about how people have an adjustment after their chemo is over. That for the most part you don't think about, except for when you go back for check-up and are waiting for the results. I think it hit me, that I might be there. I am still wanting to take it easy, as I know the effects are cumulative and my body needs all the rest and calmness it can get.
Day 3: Thursday, December 15: I took a yoga class also at a cancer center. It was nice connecting with people that I could relax around. I have a good support group and loving family and friends, but they have their own lives. The people in the yoga class are all survivors and so its really encouraging. The class was more meditation than poses, but that was good. My stomach muscles are very weak, which I expected after six weeks of surgery and doing nothing, but I was surprised my arms were so weak. I haven't lifted anything heavier than 10 lbs during this time. I bought some 1 lb wrist weights and am going to wear them around the house.
There was a study that indicates that there is a correlation of inactivity and relapse. (http://news.yahoo.com/s/nm/20051228/hl_nm/obesity_survival_dcwould ) Excerpt: "People who are obese around the middle and are physically inactive have poor odds of survival after a diagnosis of colorectal cancer, according to a new report. ... Patients who reported regular exercise before their colorectal cancer was found were 31 percent less likely to die from the cancer than were non-exercisers, the investigators report in the medical journal Gut. In fact, 73 percent of exercisers survived at least five years, compared with 61 percent of non-exercisers. ... we cannot say that increasing physical activity or losing weight post diagnosis is of any proven benefit at this stage."
Day 2: Wednesday, December 14: There was a notice for a support group at the clinic I go to for treatment, but when I got there no one else showed up. I ended up speaking to a woman who was waiting for her 29 year old daughter who was in chemo. The daughter had been mis-diagnosed for a couple of years and her cancer was advanced now. It made me grateful that I had such good doctors and my cancer is in its early stages.
Day 1: Tuesday, December 13: Started my chemo today. For 8 cycles, I am on the Xeloda for two weeks, see the doctor, and am off for a week. Starting was anti-climatic. I'm not sure what I expected, but after six weeks of obsessing about, I guess anything would have been anti-climatic. I'm just glad it started.
Regime: I am taking (as of 3/26/06)
- 1650 mg of Xeloda 2/day, total 3300 mghttp://www.halls.md/body-surface-area/bsa.htm is the website I found that calculates dosage amounts. 2500 mg/m2/day - whatever that means - is the recommended for Xeloda
(Cycle 1-4000mg; Cycle 2-4000mg, but stopped after one week due to bad foot problems; Cycles 3 and 4: 3000m; Cycle 5 and now-3300mg
. )
- 200 mg of Celebrex 1/day (My oncologist says this is to address the foot and hand syndrome, but I haven't seen much about this on the web or literature.)
- 200 mg of B6 2/day (supposedly also to address side effects)
- 100 mg of Docusatte Sodium - a stool softener - still having issues from the resection on November 3
- multi-vitamin
- 600 mg of calcium (this is because I'm a woman and for bone density)
- 2000 mg of flax seed oil
- 2000 mg of fish oil (prescribed by a naturopath. She said it would make the chemo more effective.)
- 1000 mg of L-glutamine 2/day, total 2000mg (prescribed by the naturopath. She said it would help the gut.)
Also, if/when I get hand/foot syndrome the naturopath prescribed: (http://www.mskcc.org/mskcc/html/11570.cfm - is a website maintained by Sloan Kettering on herbal supplements.)
- Chlorophyll complex ointment (list price was $36 at Key Pharmacy, but found it on the web for $28.80 at http://www.totalhealthdiscount.com/)
- Calendula gel Boiron (cost $6.9)
Both doctors said that patients have gotten some relief with Udderly Smooth cream and applying ice. As of 1/15/06, I apply the chlorophyll ointment and Udderly Smooth about twice a day to my feet. The chlorophyll ointment is like a tar paste and is quite messy, so I'm using it as much on my hands. Udderly Smooth was supposedly developed for use on cows and is just like any lotion. I find that I usually start off with socks when I sleep, but take them off during the night. This allows my feet to breathe and seems to help. I tried icing my feet, but that didn't really seem to provide relief for me.
1/31: My insurance company changed their procedures from last year and I've still not been successful in getting the Celebrex covered. I decided to order from a Canadian pharmacy: http://www.canadapharmacy.com/. Cost was about half. The Canadian Pharmacy Association is the validating agency - http://www.ciparx.ca/. A prescription is required.
Saturday, November 5, 2005 - Tuesday, December 3 - Deciding on Chemotherapy
Note: The information here is based only what I found out, which I hope is helpful, but please check with your doctor to verify the verasity and what is right for you. My choice was to do Xeloda only, but it is a personal choice.
IV port. The surgeon told me two days after surgery that one of the 33 lymph nodes had cancer and I would need chemo. I started to cry and asked if I was going to die. He said no, it would be more like an on-going chronic disease. He said I would probably be seeing him again to have an IV port put in. I focused on this for a long time and guess I still do. The thought of another procedure really bothered me. In end I did oral chemo only, so I didn't need one. I would have done it, if I had needed to, but must admit the idea still scares me. I think it would have been o.k., its just what I focused on to handle my fear.
Oncologist 1. The surgeon scheduled an appointment for me with the oncologist at the clinic I was operated on. It was about 2.5 weeks after my surgery, so I was still a bit sore. The appointment was for an hour. My husband came with me and we recorded it. There was a great deal to take in. I cried at one point and he stopped the explanations and said that it was normal to be afraid and upset. He said I had four options: do nothing; FOLFOX (5FU delivered via IV with basically a pump over 46 hours and Oxiplatin); an oral version of 5FU called Xeloda and Oxiplatin); and doing a field trial where you get the FOLFOX plus possibly another drug. When he came in he said my chances of being o.k. were about 70% and with the chemo it would be around 87%. He then said he should actually run the statistics and did so - my odds were 83% if I did nothing and 90% if I did the FOLFOX. He said I could start as earlier as 3 weeks after surgery, but waiting up to 8 weeks wouldn't change the odds. I did also have a follow-up meeting with his nurse who explained the side effects to me. Oncologist 1 indicated he would do a field trial.
Oncologist 2. Through a friend of my brother's, I connected with a cancer research center, to at least get a second opinion, the week after seeing Oncologist 1. His statistics were that if I did nothing I would be 85% o.k. and if I did the FOLFOX 91% and if I did just the Xeloda 90%. I also cried and he got up and hugged me. My husband also came with me to this discussion and asked about the Oxiplatin. He said that this was these were the two basic options and there were variations that could be discussed once the basic decision was made. I told him I was not interested in a field trial. With my odds being so high, I didn't want to risk taking a drug whose interaction was relatively unknown. In the end, I went with oncologist 2. I'd say the fact that he was more thorough in his information to me was important, but the main reason, was that I just immediately liked him. I felt like he was a partner in my decision.
Chemo research. I did quite a bit of web research and tapped into friends/relatives that were doctors. I would say that getting information is essential, but not all information is accurate. I ended up actually going to the manufacturers websites to read what they wrote about the chemicals. I got information from the oncologists and their staff and cancer resource centers. http://www.factandcomparison.com/ was one website I found I liked that gave good drugs comparisons. I found by doing this I could be in control a bit and wasn't as overwhelmed. I perhaps obsessed a bit, but it was a good coping mechanism for me. As for advise, even from doctors, is that I realized I needed to make my own choice and that they need information to make decisions, as well. For example, my cousin said he had checked with an oncologist friend and I should go FOLFOX. Yet, once I had shared the statistics, he re-checked with his friend said that my choice for Xeloda only was a wise one.
Chemo choice - 5FU vs. Xeloda. 5FU is a standard use drug in the fight against cancer. It has been used since the 1950s. A second drug is administered with 5FU called leovorcin, which helps the assimilation of the 5FU. An oral form of the 5FU, which interacts with cancer cells enzymes began testing in 1998. Its been approved for breast cancer for some time. One of the latest studies on this is a New England Journal Medical from June 30, 2005, discussing a study done with about 2000 patients taking either 5FU or Xeloda (also capectabine - I don't really understand the reasoning behind why drug companies use a technical name and then a marketing one, as both seem obscure to me.) The study basically indicated that Xeloda was as effective as the IV form. The toxic effects were also shown to be less and delayed with Xeloda, except in the instance of getting what is called hand-foot syndrome where you get redness or possibly blisters. (This usually occurs after the second or third cycle of taking Xeloda.) 5FU would be administered by going in and getting some as of the medication as an IV at the facility and then being given a pump that would go through the IV for 46 hours. You'd return to the facility to have it removed. (I connected with some people on the web, who had a home nurse come by and do the removal.) You do this every two weeks for 12 weeks. Xeloda is taken twice every day for two weeks and then you're off a week and start again for a total of eight 3 week cycles. I decided to go with the Xeloda, due to the less toxicity and less dependence on an IV and logistics.
Chemo choice - Oxiplatin. This is a platinum based drug which has been shown to effective as adjunctive chemo. It's an IV drug and given at the oncologist's office, usually in the same session as when you get the 5FU. FOLFOX is 5FU (plus the leovorcin) and Oxiplatin. There is a FOLFOX4 and a FOLFOX6, which I don't really understand the differences (I know the time periods for infusion are different), with FOLFOX6 being the standard. The side effect of the Oxiplatin that I was concerned with is neuropathy. It seems like everyone gets it to some degree with most people getting a tingling or numbness which is accentuated by cold. For some the effects remain for a long time after treatment and could affect the quality of life. Since the upside was 1% and the possible side effects were strong, I decided not to do this drug. The FOLFOX is the recommended, gold standard, so it was a difficult choice. I felt if I did not do any chemo and relapsed (I had already not listened to the doctors by waiting until almost 55 rather than 50 to have a colonoscopy), then I would be angry for not doing it. If I do relapse, I just will never know if the Oxiplatin would have made the difference, but I will be at peace that I did what I could.
Websites of interest: http://www.medpagetoday.com/Gastroenterology/ColonCancer/dh/2577 - 1/30/06 article on adding xaliproden (SR57746A), an investigational serotonin receptor agonist, to reduce peripheral neuropathy. http://products.sanofi-aventis.us/eloxatin/eloxatin.html - manufacturer's field trial information on Oxiplatin. http://www.supportiveoncology.net/journal/articles/0408w01.pdf - 2006 Validation of a Self-Reported Neurotoxicity Scale in Patients with Operable Cancer Receiving OxaliplatinStatistics. There is a database that collects statistics on survival and relapse rates for patients using adjunctive therapies for breast and colon cancer - https://www.adjuvantonline.com It is for medical personnel, as you have to put in the description of the case specifics to get the statistics. The program gives you a print out showing the result if chemotherapy is done. In the case of colon cancer, it shows if you do 5FU only or FOLFOX (i.e. add Oxiplatin). This was where the statistics on my outcome came from. Both of the oncologists I went to knew about this, but the first one hadn't run the program prior to my visit. Oncologist 2 provided me with the link information reaffirming my positive thoughts about working with him. This information was essential in the decision I made. From one of the web Forums: " You are suggesting that I have treatment which will make me temporarily unwell, to treat cancer that you can't find, and can't be sure you have eliminated even when treatment is finished".
Monday, December 5, 2005 - Getting Ready for Chemo
My body is just not my colon and I am more aware of how important overall health is, especially during chemo. Even though the timing was a bit early, I decided to go ahead and get all the other things I normally do taken care of - like getting my teeth cleaned and getting my annual physical. My oncologist indicated he would also serve as my primary care physician, but I decided to go to the physician I have been seeing for the past several years. In addition to having my "yearly" tests done, I reviewed with him the chemo alternatives. It's interesting how just verbalizing things is helpful.
Sunday, November 6, 2005 - December 12 - Recovering from Colon Resection Surgery
Pain. I handled my anxiety about the operation by obsessing about how much pain I would be in. I had had a friend who had had abdominal surgery and I remember how hard it was for her. They had given me an epidural, however, so I didn't feel the pain. Three days after the surgery, they were going to remove it and I was a scared. The anesthesiologist came by Sunday morning, stopped the epidural medication and gave me oral pain med - Oxycodone. He returned in the afternoon to see if I was still doing o.k. and since I was they removed the epidural. They gave me two more pills and took out the catheter. I thought it was going to hurt when they removed it, but it didn't. It just felt funny. My husband drove me home. I was in the back seat holding a pillow over my stomach for the bumps, but pretty much feel asleep. I was supposed to be take 2 pills every four hours, which I did on Sunday night and Monday morning. I felt light-headed and nauseas, so I cut back to 1 pill and by Tuesday had stopped taking them altogether. I spent most of my time in a recliner and by the end of ten days was walking a mile on flat surfaces.
Pooping again. I don't want to be indelicate, but this was and in some ways still is a big issue for me and I didn't couldn't find many sharings on this. The doctors refer to the first time you poop after the surgery, as your colon awakening again. This occurred for me about six days after surgery. After day 5, I was afraid it wouldn't happen and I would need another surgery or something. I guess the signals from your abdominal area to your brain get mixed up somehow. I was sitting on the toilet and it just came out. What I found over the upcoming weeks, is that I couldn't always tell when I had to go. I guess it would get backed up to the point that I would have abdominal discomfort and pain and know I needed to do something. I couldn't always distinguish between post-surgical pain and needing to go the bathroom, but could tell once I had gone. I am able to tell now when I have to go. I was taking stool softener - 100 mg of Docusate sodium - twice a day - after leaving the hospital, but still got constipated. The doctor added two dosages of milk of magnesia and it was fine. I had to experiment with what worked and am now doing only one stool softener a day and can pretty much tell when I need to go. The doctor said I might need the stool softener for a good 3 to 4 months. There was also a recent study from that indicates that chewing gum after the surgery will help things get going faster (http://www.usatoday.com/news/health/2005-12-14-gum-colon-patients_x.htm?csp=N009). I need to get up once during the night for a bathroom break (usually a pee) and then in the morning when I wake, I feel the pressure again.
Scars. The removal of the colon was done lapriscopically, but the sewing of the colon back together was done by a cut. I have small scar (about 2 inches) under my right breast and a little 1/2 inch one to the left of my belly button. I have another scar from my belly button going up about 4 inches. My belly button area was swollen for almost 5 weeks and I had a bit of a skin infection there. I could only wear loose clothing. I primarily wore knee sox and a long dress, so nothing was around my middle. If I did go out, I wore loose fitting work-out pants. I could not wear underwear for the first 3-4 weeks, because of the pressure on my abdomen.
Weight loss. I did lose about 10 lbs and have kept it off since the surgery.
Muscles. I was walking for exercise since pretty much after a week of surgery. At first it was a mile twice a day on flat surfaces, as my stomach area hurt/burned a bit when I moved up and down alot. By the third week, I could up hills and walk at a reasonable pace without being in pain. It took me about four weeks to feel comfortable enough to sleep totally horizontal in a regular bed, but sometimes would have a slight burning sensation when I first got up. I took my first yoga class six weeks after surgery. My abdominal muscles were very weak and burned just a bit when I did little things. I am taking it slow. I was surprised, however, by how weak my arm muscles had become. I was not supposed to lift anything greater than 10 lbs for six weeks. I bought 1 lb arm weights and am wearing them twice a day for 30 minutes or so to start building back up.
Saturday, November 5, 2005 - Cancer Diagnosis
The surgeon came by today and gave me the bad news. He said that the cancerous polyp had been totally removed during the endoscopy, but that one of the 33 lymph nodes they had removed was found to be cancerous. Since the polyp had not gone through the colon wall, the cancer had metastasized. So I was diagnosed as a stage IIIA. I am really scared it could be anywhere in my body. He said I would need chemo and would probably see him again to have a port put in. For whatever reason, the idea of another surgical procedure freaked me out.
The following study indicates: "The number of lymph nodes analyzed for staging colon cancers is, itself, a prognostic variable on outcome."
Colon Cancer Survival Is Associated With Increasing Number of Lymph Nodes Analyzed - Journal of Clinical Oncology, Vol 21, Issue 15 (August), 2003: 2912-2919
http://www.jco.org/cgi/content/full/21/15/2912
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Excerpt from the Discussion section of this paper:
Our study reveals that the number of lymph nodes analyzed is a significant variable that affects survival in both node-negative and node-positive patients. Regardless of the number of positive nodes, survival improved as more nodes were removed. If a patient was classified as node-negative, survival was also affected positively with an increase in the number of nodes analyzed.
The number of nodes that must be examined to yield a reliable assessment of the nodal status of a patient has been debated. In 1990, the Working Party Report to the World Congresses of Gastroenterology reviewed this topic and came to a consensus recommendation that at least 12 nodes must be sampled to adequately stage a patient.14 However, several more recent studies have brought this number into question. Goldstein et al15 found that the number of node-positive patients continued to increase until 17 to 20 nodes had been examined, leading to the conclusion that a minimum of 17 nodes should be analyzed. Wong et al16 found that node-negative patients had significantly fewer nodes examined than did node-positive patients (14 v 20 nodes), and to achieve a nodal positivity rate commensurate with the National Cancer Data Bank, at least 14 nodes should be examined. It is clear that to accurately stage a patient with colon cancer it is better to evaluate as many nodes as possible. Our data would indicate that for node-negative patients, at least 20 nodes should be identified.
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http://www.mayoclinic.org/news2004-rst/2250.html
The National Cancer Institute (NCI) funded this comparison study as a top priority clinical research project. The study was coordinated by the North Central Cancer Treatment Group (NCCTG) in conjunction with other National Cancer Institute Cooperative Groups.
Dr. Nelson listed these findings of the study and benefits to the patient:* Almost exact rate of recurrence in both sets of patients. The cancer returned in 160 of the 872 patients; 76 had undergone laparoscopic surgery and 84 had the standard operation.* The return of the cancer in the location of the surgical wound was less than 1 percent in both sets of patients, occurring in two patients who had laparoscopic surgery and one patient who had standard surgery.* The survival rate was almost identical -- 86 percent of patients who had undergone laparoscopic surgery were alive three years after surgery and 85 percent receiving the standard surgery were alive.* Similar rates of complications during surgery and within 30 days of surgery in terms of hospital re-admissions, re-operations and deaths.* Shorter hospitalization for patients who had laparoscopic surgery -- on average, five days in the hospital compared to six days for the standard surgery group.* Shorter use of intravenous pain-relieving medications after surgery for the laparoscopic group -- three days versus four days. Also, briefer use of oral pain relievers -- one day for laparoscopic group compared to two days for the standard surgery group.
Thursday, November 3, 2005 - Colon Resection Surgery
I had my colon resection surgery today. I had been really afraid of the pain afterwards, but it turned out not be a problem at all. The hospital I went to gives all abdominal patients an epidural, so I was fine. I was actually on my feet within about 12 hours.
Friday, October 27, 2005 - Surgery Emotions
I am handling my concern over the upcoming surgery and the possible results by reaching out. It helps. I continue to talk with family and friends, but decided to see a primary care doctor who I have been going to for some years now. I trust him. He was reassuring. He reviewed the reports with me and provided information and answered questions in a leisurely manner that didn't make me feel I was intruding. (I'm not sure why, but we often feel that the doctor's time is more important than our own.) He knew of the surgeon and provided reassurance of his qualifications. I don't think I really "learned" anything new, but it was calming to me.
Monday, October 24, 2005 - I'VE GOT CANCER!!!!!!!!
The doctor calls me at 4PM to let me know the biopsy results from the large polyp he removed on Thursday were in. IT WAS CANCEROUS!!! He had made an appointment for me with the surgeon the next day. He said that the colonoscopies only allowed them to view the inner lining of the colon and when cancer was detected the protocol was do a resection. I barely heard what the surgeon said, so I was glad my husband came with me. We scheduled the surgery for as soon as possible. He wanted me to have a CT Scan and chest X-ray done first, which I did later on in the day. I then spent the next few days obsessing about the surgeon who was going to the surgery. He had done over 300 of them. I checked his background, asked people, etc. Once I felt comfortable that he was good, I just had to have the courage to go through with it. I had just spent several days feeling very lucky and thanking God for having this caught when it was. Now I was angry and had this "why me" victim attitude. I realized I had to start praying to have the courage to do what was right and turn over the outcome. I "acted as if" I really believed this and eventually it felt that way. If it hadn't been for all my family and friends that called and let me talk endlessly about all this, I never would have gotten through it.
Thursday, October 20, 2005 - Second Colonoscopy or Polypectomy
This colonoscopy is going to be done under general anesthesia, as they are going to remove the large polyp. Its a day procedure, however, no over night. While I'm waiting to go in for a pre-op meeting with the anesthesiologist, I read my chart. I see that the GI doctor that is going to do the procedure, wrote in his notes that I would probably need a colon resection although he would try by doing the encodscopy. I was scared. I was under for 3 hours. A second doctor was called in. After the procedure, the doctor meets with my husband and myself and said it looked fine. He felt he got everything. I had a surgical consult scheduled, which he said I could cancel. Of course, they would still have to wait for the biopsy results. I was elated! I was very grateful to my Higher Power.
Tuesday, October 11, 2005 - First Colonoscopy
I was just a month away from my 55th birthday. I had been told to get my colonoscopy at age 50, but postponed it because I was scared. My 6-year-old cocker spaniel was diagnosed with inoperable cancer in August. When I went to pick up my husband after his colonoscopy in September, I realized the importance of screening and yielded to him to get one, as I realized how early diagnosis is the best tool, They tell you the prep the night before is always the worst part of the colonoscopy and they are right! The taste of the laxative is horrendous. (A hint I was given for the next time was to use Fresca when downing the laxative. It did help!) I also got very, very cold. I was told later that the laxatives cause dehydration and that I should drink more liquids. I was nervous going into the procedure. As the doctor was starting, I asked him if I wanted him to stop in middle would he and the next thing I knew it was over. It was really nothing! I felt fine afterwards. He told me that he removed 19 polyps, but there was a big one remaining that was 5 mm long and was growing wrapped around the inside of my colon. He would do another colonoscopy to try and remove it, but I would probably need a colon resection. None of the 19 polyps removed were cancerous.
Tuesday, June 5. As I learned from my cancer experience, it is important to get copies of your medical sessions. I did so for the neurologist that I went to about my hand and in reading his notes realized I had mis-understood. He does think I have Parsonage-Turner virus. From "Orphanet", Parsonage-Turner ... characteristic (is) paralysis of some muscles ... etiology remains unknown... treatment is symptomatic... prognosis is favorable with about 75% of complete recovery within 2 years... incidence estimated at approximately 1.64 in 100,000".
I focused my fear about this on a test - EMG - they can do to measure muscle responsiveness via electric current. Because of my reaction the doctor did not insist I do the test immediately, but does recommend it in the report, depending on how my healing progresses. I learned enough from the cancer that even if the test is uncomfortable, knowing is always important.
My hand is doing better. I went to physical therapy today and my flexibility in all joints was the best its been since the surgery.
Sunday, June 3. I think it still hasn't totally sunk in that I'm a year out from my last chemo treatment. It feels in some ways like it was very distant and in other ways like it was just yesterday.
My right hand - from the tendon repair - is getting better. I started playing the piano for exercise. Although the surgery (which was in April) was for the thumb, the hand and wrist were immobilized as well. Your muscles deteriorate rapidly with non-use. For example, when astronauts return from even a short time in space they have trouble walking.
The whole incident of the thumb brings back the cancer scare on an emotional level. I saw the neurologist this past week and he basically agreed with the surgeon, with his last words being my situation was highly unusual and not something he's seen before. We left that we would do nothing and if after I see the surgeon next - on June 13 - they'd decide if I should have an EMG test. It's where they put a needle in your muscle and then put an electrical current through you. He did some testing - like making me walk on my toes and checking my reflexes and strength in both my arms and legs - and all was fine. The muscle in my thumb is weak, but definitely working now. He said that if I had something systemic then I would have other symptons. He said the nerve virus - Parsonage Turner - has a different progression than mine did. So the cause is puzzling, but not much to be done now. I need to turn it over and wait, like with the cancer.
Month 12, May, 2007
Wednesday, May 23. It was a year ago - May 22, 2006, that I took my last dosage of chemotherapy, so today is my one-year anniversary since of being chemo-free. I've been reflecting on how things have changed. First, I am not working in my profession at all. I remember when I started chemo I wanted my life to be the way it was and took at new part-time position, which I left after about six months and haven't done much. I have been involved in some volunteer work, but it's a minimal time commitment. Second, I have had a big weight gain - about 35 lbs. About 20 lbs of it occurred the last two months of chemo, but the remainder has occurred since then. I find I like to exercise still (although not as strenuously.) I walk everyday and take classes - like yoga - regularly. Third, my family and friendship relationships have somewhat changed. One of my closest friends now is a fellow cancer-fighter. I can talk with her in a way I can't with other people. I was very actively involved in on-line chemo forums and groups during the chemo and I have stopped most of that activity. It's hard on my emotionally to have to keep facing the cancer. I love my family, but feel distant at times. The desire to just "be alone" and by myself is often there. I also don't know where or what I want for the rest of my life. I think this questioning was a pre-cancer issue for me, but it seems like I'm more willing to be a "victim" about it - not taking action to do something and not being satisfied with where I am.
Month 12, May, 2007
Wednesday, May 23. It was a year ago - May 22, 2006, that I took my last dosage of chemotherapy, so today is my one-year anniversary since of being chemo-free. I've been reflecting on how things have changed. First, I am not working in my profession at all. I remember when I started chemo I wanted my life to be the way it was and took at new part-time position, which I left after about six months and haven't done much. I have been involved in some volunteer work, but it's a minimal time commitment. Second, I have had a big weight gain - about 35 lbs. About 20 lbs of it occurred the last two months of chemo, but the remainder has occurred since then. I find I like to exercise still (although not as strenuously.) I walk everyday and take classes - like yoga - regularly. Third, my family and friendship relationships have somewhat changed. One of my closest friends now is a fellow cancer-fighter. I can talk with her in a way I can't with other people. I was very actively involved in on-line chemo forums and groups during the chemo and I have stopped most of that activity. It's hard on my emotionally to have to keep facing the cancer. I love my family, but feel distant at times. The desire to just "be alone" and by myself is often there. I also don't know where or what I want for the rest of my life. I think this questioning was a pre-cancer issue for me, but it seems like I'm more willing to be a "victim" about it - not taking action to do something and not being satisfied with where I am.
Thursday, May 17. I had the cast taken off yesterday from the right thumb surgery on April 19. The thumb is working again, so that's good, but not knowing the cause or how systematic it is, is scary. When the surgeon told me that he never seen this before and its why he referred me to a neurologist (I go May 30), I had those feelings like I did with the cancer - "why me" and fear - although "why me" was more overriding. My thumb is pretty stiff and I have to do these exercises 5 times a day, so I won't know the full range of motion for a while.
Yesterday was also a cancer awareness day sponsored by the Lance Armstrong Foundation. I went to a luncheon. There is always an immediate connection with fellow cancer fighters, but it also gets me upset to be reminded that I'm "part of the club".
Sunday, May 6. Someone told me that everyone knows they are going to die, but cancer patients believe it. When people I've met in the past year, die, I find it difficult for both them and myself. I met a woman over the internet through a colon cancer forum. Although we never met in person, we emailed to each other directly and spoke over the phone. She lived in Virginia, close to where I grew up. She had two small children. She died last week. On Friday, I went to a fund raising luncheon for the Cancer Lifeline, where I have received so much support. They honored three caregivers, one of which was in my support group. Although the cancer fighter had died some months back, hearing the honoring of his caregiver - his wife - and meeting all his children and grandchildren made me realize how impactual this disease is. It stops lives when there is so much more that could be given.
With colon cancer, early detection makes the disease almost preventable and yet people still don't follow up. It was identified that I genetic mutation and my close family members should get tested. This was several months back and yet it still hasn't happened. I received a follow-up letter from the clinic yesterday and the recommendation was even stronger than before - my siblings, nieces, nephews, children, and first cousins - should be tested or have colonoscopies before age 18.
Month 11, April, 2007
Monday, April 30. About 4 weeks ago, my right thumb wouldn't bend. I lost the ability to bend it back. I went to a hand specialist and he said the tendon was severed. He would take a tendon from the index finger and re-route it to the thumb. I had the surgery about 10 days ago. It was not that difficult. They numb your arm and I had drugs, like when you have a colonoscopy.
It turned out the tendon wasn't severed, but was very baggy and loose. I knew this after the surgery, as the doctor said he tightened it up. I found out today when I went in for my post-op visit that the tendon in my right index finger was also loose. This happens when there is nerve damage and the muscle and tendons can't be in use. So the issue now is what caused the damage to begin with? They are theorizing it could be anything from trauma from the insertion of an IV to the effects of chemo to a nerve destroying virus to a wider nerve condition. I have an appointment with a nuerosurgoen to get further testing. They don't know if this surgery even corrected the problem and won't until the cast comes off in another month.
I'm just feeling it's so unfair and scared. I don't want anything else to be wrong with me. I don't want any more medical issues in my life.
Month 10, March, 2007
Friday, March 30. I went to a colon cancer fundraiser last night. I went because one of my friends - someone I met through my colon cancer support group - was on the committee and because the entertainer - Steve Tyrell - is one of my favorites. It was a good evening - both fun and poignant. The best part was that my friend - who has been working tirelessly as a volunteer - was singled out and given a $10,000 grant to further her work in helping fellow cancer survivors. It was poignant because it was hard not to see the effects of this disease. Steve Tyrell's wife died from the disease and part of the evening was a remembrance to her. They played a t.v. segment where he was interviewed on his wife. It was especially difficult emotionally when he talked about the impact of his children losing their mother.
Monday, March 26. I had my 3 month appointment with my oncologist. My blood tests were all fine. CEA was under 0.7 and my cholesterol was 184. I had a cholesterol test about three months ago and it had jumped to 240, so not sure if this was an effect of the chemo. I feel fine, but when we discussed that next three month visit would basically include a CT scan, I thought of recurrence crept into my brain and I ended on a scared note.
Thursday, March 8. March is Colorectal Cancer Awareness month. I went to Olympia (the state capital of Washington) today to see a bill pass in the house for insurance to pay for colonoscopies. Some insurance plans now exclude them except for diagnostic purposes. I was invited by the American Cancer Society. Two other cancer survivors from the area were invited. It was a very interesting experience. They introduced us at the beginning of the session and the House members gave us a standing ovation. The speeches before the vote on the bill, included about 10 members relating their own personal experiences with cancer. Lots of tears. Highly unusual, I think.
Month 9, February, 2007
Wednesday, February 28. A new diagnostic test GCC-B1 by Targeted Diagnostics and Therapeutics, is now available, although not standard protocol and so probably not covered by insurance. (Cost is about $400.) GCC-B1 testing is designed to be used to detect recurrence in stage II and III cancers. Guanylyl cyclase C (GCC) is an enzyme. The rationale for the test is based on laboratory research that show the presence of Guanylyl cyclase C (GCC) in colon tissue and not outside the colon except in positive regional lymph nodes (stage III) and metastatic tumors (stage IV). The assumption is that any cells in the circulating blood that are positive for GCC have been shed by metastatic tumors. This test can detect very small numbers of cancer cells. The question is what is the clinical significance of this, i.e. how does one respond to this information. Will the single or small number of cells turn into a tumor? Will the body destroy these before tumor formation? Is chemotherapy called for? Increased numbers of scans? Do nothing? So, the issue is that there is not a clear protocol if the test comes back negative. A negative GCC B-1 the one could feel truly NED and could skip some of the scans and radiation exposure. From the manufacturer's information for post-surgery:Circulating tumor cells from the original primary tumor normally clear within 2-3 weeks after surgery. When monitoring patients for recurrence at 6-months and beyond, any circulating tumor cells are evidence of a tumor at a new primary site or recurrence in the colon, or a metastasis in a distant organ.For all post-surgery patients for on-going surveillance; use GCC-B1 to find earliest sign of recurrent disease.- Negative Results - continue normal monitoring schedule/regimen- Positive Results - routine diagnostic actions to find source of metastasis- if NED, increase aggressiveness of surveillance schedule until treatable source metastasis appears.For any patient with rising CEA values but who is otherwise NED; use GCC-B1 to confirm metastatic activity.- Negative Results - continue normal monitoring schedule- Positive Results - routine diagnostic actions to find source of metastasis- if NED, increase aggressiveness of surveillance schedule until treatable source metastasis appears
Saturday, February 17. I got a follow-up email from the doctor handling the genetic testing, with a recommendation for another endoscopy in two years and that we would continue to monitor if additional surgery to remove more of the colon was necessary. I live with the cancer scare being in the background and then I get something like this and I get concerned again. I start to re-question how I want to spend the rest of my life. My activity level is very low and more inwardly focused. I got a couple of puppies, that take up time, but my day is not really spent contributing much. I feel drained intellectually, but emotionally I feel I don't want to do more. I'm now as down as I was a month or so ago, so maybe the effect of the chemo needs to wear off more.
Month 8, January, 2007
Wednesday, January 24. I got the results of my genetic testing and I do have a gene mutation. They know that this causes more polyps and to grow faster, but the specific effects manifest differently in people. In my case, it is on the milder side - having the onset later in life rather than earlier. The recommendation of treatment is basically what I am doing now, having more frequent colonoscopies - basically yearly. Depending on the number and growth each year, then this would continue indefinitely so the polyps don't become cancerous. If there are too many to remove in a colonoscopy, then I would need to have more of my colon removed. The type of gene mutation I have (APC sequencing 233de14) does not effect the rectum, so if additional surgery was needed, I would not need a colostomy bag.
The issue becomes one of testing for my family. One has a 50-50 chance of inheriting the gene mutation, so my first order relatives (siblings) need to be tested and if they do have it, then the children need to be tested. They like to do the testing as early as 18 years old, to be able to recommend extra surveillance and treatment, as colon cancer is preventable.
Since the course of treatment for me is the same as I am already doing and the worse-case treatment option did not seem so bad, m thoughts went immediately to the next generation in our family. I had not known we had a family history until I was diagnosed and would have gone in much sooner, if I had known. So now the children have this possible burden/issue. My fears about cancer and facing my own mortality have also come up again. Its hard to stay detached/put these feelings in the background, when they face you like this.
Tuesday, January 16. My CEA was 1.0, returning to its level post-chemo. So this is not really an indicator of cancer for me, but it is good news to know that the rise to 6.3 (anything over 5 is a sign of cancer) during chemo, was because of the chemo. This is normal, but when you live through it its always troublesome. Its so easy to obsess about things.
My weight is still high. I figured I eat because in a way I don't really feel like taking care of myself, although in the past week, I have been feeling better - calmer and happier about who I am. I do think this "lost" feeling, which has been described to me by other cancer fighters, is a combination of dealing with the realization of cancer and the chemical impact the chemo has on your system.
Although not something I need in my cancer fight, I thought this latest research by Dr. Wong of Sloan Kettering was interesting and holds a great deal of promise (http://www.mskcc.org/prg/prg/bios/355.cfm) which is experimental research on total anorectal reconstruction using an artificial bowel prosthesis as a possible alternative to permanent colostomy following surgery for rectal cancer.
Month 7, December, 2006
Sunday, December 24. A friend wrote: I understand that your body is healthy now but your soul still has to cope with it. I think this a perfect and kind description of where I am right now. I am very grateful for all I have, but not really feeling the passion of life.
Month 6, November, 2006
Tuesday, November 7. I had an upper endoscopy today and all was normal. (This is when they go into through your throat through your stomach.) It allows them to look at where the stomach attached to the intestine, which they can't see in a colonoscopy. This is a possible another place for cancer and my doctors just wanted to make sure. I was very nervous about the procedure, but its done by the same doctor that did the colonoscopies and you're totally out, so it was fine. Prior to the procedure I had the nervous feeling, like I might get bad news, and felt very scared.
Friday, November 3. I went to a medical symposium on the latest advances in colorectal cancer. It was odd hearing it from a doctor's perspective, where patients were "cases". I think its must be hard to be a doctor and stay unbiased in the difficult situation. Some items that they covered was how the success rate of surgeons that are trained in colorectal surgery have better results in resection site relapses. They also showed how CT and PET scans together really provides the best information, but there is the risk of increased radiation exposure. A CT scan provides the equivalent of living the Seattle area for four years.
Month 5 - October, 2006
Tuesday, October 31. I am still feeling lost, but its better. More like not having a passion. I've been making myself get out and take on activities.
Wednesday, October 4. Went to the oncologist on Monday. Will see him again in 3 months. Nothing eventful really. He confirmed that chemo does hastened menopause. Since menopause is a gradual reduction of hormones, it could be that I am more progressed than pre-chemo, which is why I am having symptoms now. He was not familiar with the itchy skin symptom and we left it that I would double check with the gynecologist at my appointment later this year. I did talk with him about my feelings of been down. He said that this is common. People are so focused on the logistics and dealing with treatment, that when its over the whole idea of the cancer really sinks in and often leads to depression. A fellow cancer fighter said that 85% of all cancer patients are on anti-depressants. I'm not ready to do medication, but must admit to a "lost feeling". What I found with the chemo, was that when it was over, I was very happy. It was like being alive again and not having the chemo hanging over me. When you face your mortality, you really think about how you want to spend the rest of your life. I have so many wonderful things in my life, but I seem not lack passion.
I had gone for genetic counseling a few months back and they wanted to gather additional information from my cousins, which they now have received. There is a family history of colon polyps and cancer, which I didn't know about until my situation happened. It is interesting how families don't talk about certain things. I found a prediction tool on the web regarding genetic mutation. The result using the tool is that my odds are low for the mutation, but I was somewhat aware of this as my onset was later in life. Also, there could be other genes involved in colon cancer which this tool doesn't predict for. I will be meeting with the genetic counselors again and probably have some testing done. The tool information from Colon Caner News http://professional.cancerconsultants.com/oncology_colon_cancer_news.aspx?id=38196 is:
These researchers used information on 1914 unrelated probands who submitted blood samples for gene sequencing for MLH1 and MSH2 genes. They found that personal and family history characteristics could predict accurately the outcome of genetic testing. The most significant predictors of having a gene mutation were: having two or more colorectal cancers, the number of first degree relatives with colorectal or endometrial cancer, young age at cancer diagnosis and a history of adenomas. The PREMM model is available at http://dfci.org/premm.
Researchers affiliated with the Colon Cancer Family Registry have also reported that the MMRpro model can assist in predicting the risk have developing HNPCC. This model estimates the likelihood of carrying a mutation in any of three genes-MLH1, MSH2, or MSH6. The model also estimates an individual's probability of developing colorectal or endometrial cancer. The model considers personal and family history of colorectal and endometrial cancers and also considers the results of previous HNPCC-related tests (if any) that have been conducted within the family. Software for performing MMpro is available at http://astor.som.jhmi.edu/BayesMendel/ or http://www4.utsouthwestern.edu/breasthealth/cagene/.
Month 4 - September, 2006
Friday, September 29. HOORAY!!!! My CEA - the blood marker test for colon cancer - went from 6.4 right after chemo to 5.3. Anything over 5 is usually an indication of cancer, but the marker can also rise as a result of chemo. The lowering of the CEA means it was a result of the chemo and I will be on normal screening guidelines - i.e., continued blood tests and CT scans. The oncologist indicated it can take a while - even up to a year - for the chemo to get flushed from your system. I am also experiencing a few other minor symptoms. I have broken out with some acne. As a result of one of the colon forums I monitor, two other people reported the same symptom after taking Xeloda. In addition, I am experiencing "hot flashes". Becoming menopausal after chemo (not sure if Xeloda is one those meds) is not unusual, but since I already was I didn't expect additional symptoms. I did not have "hot flashes" before and am now. Whenever I get hot - even a bit sweaty - my skin gets itchy and it feels like little pin pricks.
Wednesday, September 20. It has been about four months since the end of my chemo. I connected with the oncology staff and reconfirmed my tests and appointments. I go in next Wednesday for my blood marker tests and see the doctor the following Monday. If the marker is down, then it means the rise was due to the chemo, if its not then additional tests - such as a CT scan - will be needed. I'm posting because of the upcoming events has me nervous and scared. Its hard just to let go. That being said my diet has not been good. I know eating right is something I can do to give myself a health edge and yet am not doing so.
Saturday, September 2. I've been thinking about how the pattern of feelings I have towards my oncologist and his team is the same as I have towards the cancer, but in a positive/feel safe way rather than a negative/scared one. Having cancer is always in the back of my mind, but most of the time I'm detached from it. Then something will trigger my thinking about it and I get scared and it takes over my feelings. Its the same with the oncology team. I don't really think about them, but then something will trigger my reflection. Maybe the attachment to one's team is needed to counter the cancer feelings - like a symbiotic relationship.
I've been asked at the Unitarian Fellowship I belong to, to be part of the Sunday service, indicating how the lay ministry there helped in my cancer journey. I also had to interact with the oncology team to set-up my next round of tests and appointments at the end of the month. This focus made me think about the cancer again and I went from feeling the cancer has all been gotten out and there won't be a relapse to thinking what if I was wrong and I did. The main trigger for this was the possible scheduling of another CT scan, when the guideline was to wait a full year. I obsessed the oncologist felt I must have cancer and that's why I needed another CT scan so soon. It turned out, we are going to do the recommended CEA/blood test only and only if the marker is high, would the CT scan be done. This makes sense and is consistent with the "no evidence of cancer" from the last scan, but it still got me scared. I would say I was depressed today and watched two movies today, rather than exercising or working or seeing people. I kept thinking about what if I needed more chemo and if I only had a short time to live. Its interesting how easy the cancer can take over my emotional state.
So aside from that, I really am doing fine. My chemo weight is still there, but aside from some lingering tiredness feel good.
Month 3 - August 2006
Saturday, August 12. I am now officially a consultant with my company, as opposed to a parttime employee. The difference is not significant to me, but the process for the transition made me reflect on my cancer and how the experience has impacted me. When I first agreed to be an employee, it was right before chemo started. It was very important to me to have my life "normal" and I was grateful and excited about the position. We basically had a six month agreement. At the end of this period, the company's position was that they just didn't feel I was providing the "punch" they had expected. Aside from the initial "being rejected/not good enough feeling" which these situations always bring out, I was relieved it was over. I realized that I prioritize things differently. (Something many cancer fighters say, but it feels different when you experience it directly.) I would often take an action item and just not really have the desire to follow-through on it. I realized that by not getting focused on work, I really had transitioned from a part of my life. I have made a business and technical contributions that I am satisfied with.
Tuesday, August 1. CEA is a marker that for about 50% of the people indicates if you colon cancer. (They don't know why its not accurate all the time.) If it is high (over 5), then its usually a safe indicator (does not give false positives) of colon cancer. It does, however, often go up during chemo, as its a response of your system to the drug. Prior to my surgery, my CEA was low - about 1.4 - but I did have cancer in my system. Over the course of chemo, it went up slightly each time. One month after chemo, it was 6.4. So not a good sign. The test was run again at the 2 month mark (last week) and it stayed 6.4. I just got the oncologist's official position today. He believes that since there was not an upward trend as the chemo has stopped, the elevation is an indication of a reaction to the chemo and that it will take some months for it to go back down. He said he has had several patients whose post-chemo CEA went much higher and then went down. So at this time no additional testing will be done. I go in again in two months for another blood test and CT scan again. I think this wait and see just comes with the territory. Its hard, though.
I've been exercising and eating healthier. I put on about 15 lbs during chemo (I found out many people gain) and I've lost about 5 lbs so far. The exercising feels good - I like moving - but eating well is harder. I have cut down on the sugar. I know that I feel like I'm doing something by eating well and exercising to minimize the cancer recurrence risk, which helps me emotionally. Instead of being a "victim" of the disease, I can be a fighter.
Month 2 - July 2006
Monday, July 24. The biopsy report from the colonoscopy came back and the results were fine. The GI doctor indicated I didn't need to return for two years. The latest guidelines, published June, 2006, recommend every three years (http://caonline.amcancersoc.org/cgi/content/abstract/56/3/143 - Guidelines for Colonoscopy Surveillance after Cancer Resection), so I think this will be a safe interval. The oncologist wants to me go back in a year, however, so that is what I will do. Its interesting how little things can make you feel better.
Tuesday, July 18. My colonoscopy results came back today. The polyps were not cancerous, but possibly pre-cancerous. The doctor recommended genetic testing, which I have already consulted on, but its still unsettling. Living with uncertainty is difficult. I don't know if one every gets used to it.
Tuesday, July 11. Had my colonoscopy today. The good news was the GI doctor said my polyps were little - definitely non-cancerous - but there were about 10 of them and he will send them out for biopsy. The bad news was that my CEA test came back after 4 weeks since chemo. It was up to 6.4. (I was about 1 prior to surgery and it went up slightly each chemo treatment cycle.). My oncologist says that can happen with chemo and to take another blood test - for just CEA - in another few weeks. If it goes down, then fine and, if not, we will do a PET scan. Its just scary to me right now.
July 10. I go in for my first post-surgery colonoscopy. tomorrow I seem to be focused more on the prep than the actual procedure or results. I guess some of that is because a recurrence, if it does occur, usually occurs 18 months out from diagnosis and mine diagnosis has been less than year. I know, however, that there is nothing like normal in cancer. I'm focusing my fear, I guess, on thinking about the prep. In the past, Fleet's Phosomax was recommended and the in June an FDA alert came out indicating it could cause kidney failure. So I was switched to Halflytley, which meant I had to drink a gallon of the liquid last night. It didn't taste too bad, but it was alot of drinking and I got a bad headache.
July 7. Research was published today indicating that "patients whose exercise reached 18 METS a week had an 85% chance of being cancer-free in three years ... those with less.had a 75% chance". (www.fightcolorectalcancer.org/nes/2006/07/exercise_reduces_recurrenc_af.php)
July 3. Went for my approximate one-month post-chemo visit. I was still slightly anemic, but improving, so the oncologist wasn't too concerned. I go for my next visit in 3 months.
Month 1 - May/June, 2006
June 26 - Day 28 post-chemo. The cancer center I go to has started a clinic to assess prevention and detection of cancer. (Yes, they have medical specialists for everything these days.) Anyway, the focus was primarily genetic and with two aunts and an uncle having colon surgeries and assorted cousins with issues, there is speculation that my colon cancer may be genetic based. There are two genes they know about that if they are mutated will cause colon cancer. The mutations can cause cancer early in life or later, like in my case. I will be gathering more information from my relatives and then having some genetic tests done. Depending on the results, then guidelines for screening for myself and my family can be developed. One of the scenarios discussed was having the entire colon removed. It was quite scary to hear that. They will send me a letter as well as details of their suggestions to my oncologist and myself.
Week 4. (June 24) From about half way through chemo until the end, I really had these projected feelings of abandonment - that I would have difficulty in moving on with the loss of seeing you regularly. This feeling was also coupled with the fear of cancer recurrence and that without the chemo I wouldn't be fighting. I find it interesting that these feelings did not materialize. My first feelings after chemo were ones of just being jazzed - I was really on a high. Then I crashed. I wouldn't call it depression exactly, but more of a detachment. What did I really want the rest of my life to be like? More a feeling of not wanting anything, just letting things happen and then I'd react. I felt disconnected from things. I'd say now that I still have this "whatever happens" attitude, but my feelings are positive. I'd describe it as playful. Whatever floats by that catches my eye I go with. When I'm doing whatever it is, I'm quite happy and satisfied, but I'm willing to go on with whatever happens. I know some of this is a reflection of my physical healing. I didn't realize how "foggy" my brain really was on chemo. I often want to exercise and move and am doing much better, but my feet are still not quite there and I still often all of a sudden get extremely tired. I'm sleeping 8-10 hours a day. I can walk about a mile or do 15 minutes of the Stairmaster, but then also get tired.
Week 3. (June 12) My feet are better and I am no longer wearing slippers. I am wearing my "cancer" shoes - slip-ons I bought that are two sizes larger than I normally wear so I can accommodate thick, cushioning sox. I have put on 10 lbs during the chemo and know I want to lose it, but am still not quite able to be motivated enough. I keep telling myself that when I can really exercise again it will be easier. The oncologist said it'd be about 4 weeks until I felt 80% o.k., so I'm just going to let things slide a bit more. I actually did some errands and chores today, which felt good.
Week 2. (June 5) I got on a plane and went to a family reunion. It was great seeing everyone, but probably a bit premature, as I had to be careful about people not stepping on my feet and getting tired. The tiredness is really bad this week. Its not being sleepy, as much as weary and not wanting to get up and do anything.
Week 1. My last day of chemo was Monday, May 22. My feet hurt about the most of any time during the taking of the chemo. They felt like they were on fire. It wasn't quite as bad as when the dosage was reduced, but close to it.
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End of Chemo - Tuesday, May 30, 2006 - HOORAY!!!!!. I went to the oncologist today. My CT scan of my chest and abdomen continue to be clean - no evidence of cancer. My blood tests were fine, but my CEA went up again to 4.2. The oncologist said that it was still under five and a more meaningful indicator will be what it says in future tests. I feel so jazzed and happy that the chemo is over. I know it will be a while before the chemo is out of my system and I can exercise again, but I feel like this chapter is over. I decided to start another blog entry to highlight my post chemo journey, as I need closure.
Cycle 8 - Tuesday, May 9 - May 29, 2006
Day 167/1 (cycle 8, Day 20) - Sunday, May 28, 2006 - I wanted to make an entry to reaffirm the mind-body connection. I have been extremely joyous about completing my chemo and just enjoying myself. Yesterday and earlier today my withdrawal symptom from the chemo was bad. Not sure why, but my off weeks of the Xeloda were sometimes worse then when I was taking it. My feet this time, especially hurt. Not as bad as when the dosage was reduced, but bad enough that they felt like they were on fire. Nothing seemed to address the pain. I ended up totally crashing emotionally. I got very angry over little things with my husband. (Who I will report was overall quite supportive. At one point, he didn't respond, let me vent, and then just held me while I cried that I didn't want to be sick anymore.) Now that I am not in such pain, I also emotionally feeling better and plan to go out and meet up with some friends for a couple of hours. My hands and feet are still red, but not painful.
Day 161/7 (Cycle 8, Day 14) - Monday, May 22, 2006. YEA!!! Just took my last dosage of Xeloda. My chemo regime is over and it feels great. I know they'll be some residual side effects for a while. Tomorrow we are burying our dog who died of cancer. I am sad to say my final good-bye to her, but it was because of her I got the tests that helped me detect my cancer in its earlier stages, so my prognosis is high. I feel like she wanted to stay with me through this. So its time.
Day 159/9 (Cycle 8, Day 12) - Saturday, May 20, 2006. I went to the naturopath doctor yesterday. She recommended the following post-chemo: A detoxification which is basically having fruit juice and protein powder for three day and the following on-going supplements:
BCQ - 3 caps-twice a day (per cap: bosellia-200mg, bromelain-100mg; curcuman-200mg, quastar-100mg); citrus pectin - 1T in juice-twice a day (1T: 6.5 grams); ultrathistle - 1 cap twice a day (1 cap: 360 mg); fish oil - 4000 mg a day; 1 enteric coated aspiring per day - 345 mg; wobenzyme - 1 tab at each meal. I'm still very jazzed about being close to the end of chemo. I think I'll feel more relieved when I have my CT scan next week.
Day 157/11 (Cycle 8, Day 10) - Thursday, May 18, 2006 - CELEBRATION! A fellow survivor suggested and I decided to have an "end-of-chemo" celebration. One of my friends helped me with the details. Although I still have four more days of taking the Xeloda (so not officially at the end, but it was the best time), I invited my friends and fellow survivors from the cancer center where I take exercise and education classes to be my guests at the Pizza Hut buffet which was close to the center. About 15 people showed up at the luncheon and I got lots of flowers, balloons, cross-word puzzle, and little gifts. One was a mini-massage kit where the note read, that I had been using lotions on my feet and hands because I had to, now I can do it because I want to. It was just so nice when people really understand. I also brought a journal with me and asked people to write a little about their experience on their journey. This was the best gift ever! My husband also showed up and got to meet everyone, which was nice and a friend who couldn't be there, left me a voice message. I felt very supported. That evening we went over to some friends for dinner and then to see Cirque Du Soleil. Its just such an amazing show. The final act was really energizing - these acrobats sort of "shot" themselves from a swing to a big sheet. They just seemed so happy moving their bodies and to be alive. It was a great reaffirmation of life.
Day 153/15 (Cycle 8, Day 6) - Sunday, May 14, 2006. Counting today, only nice more days of taking chemo. When I think of it that way, I am jazzed and happy. However, my off week prior to this cycle seemed to the worse in terms of symptoms. Physically, it looks like I am going to lose 3 toenails. Its not that I just get tired, but I just don't have the peppy feeling ever. This impacts how I emotionally feel as well. I get angry at little things or start crying. I don't feel depressed, as much a de-energized and reflective. I am wondering what I want from the rest of my life, like where I am now is just not enough. My weight gain (around 5 lbs) since the start of chemo also makes me feel bad. I just don't want to be fat, but during the day I get these real cravings for sugar and just indulge. Went away for a week of different travel. It was "nice" (although that is the wrong word, as having cancer isn't "nice") to unexpectedly find people that were in the cancer journey, as well. Some were fellow travelers wearing yellow or blue wrist bands or people I knew that were now more open about letting me know their cancer journey.
Cycle 7 - Tuesday, April 18 - May 8, 2006 - Almost done
Day 137/31 (Cycle 7, Day 11) - Friday, April 28. At the end of cycle 6, my MCV and MCH (not exactly sure what they are) were slightly above the normal range, indicating that I might be a bit anemic. I have since found out from one of my internet buddies, MCV (mean cell volume) and MCH (mean cell hemoglobin) themselves don't indicate anemia, but can be used to evaluate the reason of anemia. Changes of HB, HCT, and RBC will indicate anemia. MCV and MCH are the size and the color of the red blood cells, respectively. Even you do have a slight anemia, it is a common side effect of Xeloda
I had not been taking my vitamins regularly during Cycle 6, so the onc recommended I do so. I am permanently wearing slippers now. Basically, the blisters that I had developed some weeks back on the top of my tops have not totally healed and so its painful to wear anything that presses on them. Aside from that and going from being extremely tired to wide awake, no real new symptoms. Emotionally, it seems the same. One minute I am elated that I've only got four more weeks to go to just feeling down about everything. What do I want to do with my life? Will I relapse? There was a fund raiser luncheon yesterday for a cancer group that I take my yoga lessons at. Several people from the class came and it was nice to see everyone in regular clothes. I totally gave into my sugar cravings.
Cycle 6 - Tuesday, March 28 - April 17, 2006
Day 152/43 (Cycle 6, Day 20) - Sunday, April 16. A friend in the later stages of the disease expressed the sentiment that he had met so many kind and wonderful people during the last couple of years of his journey that he thought this was God's way of giving him a joyful memory before passing on. My CEA has gone up since pre-chemo from .07 to 2.6. My oncologist says its normal for the CEA to go up during chemo treatment and that since it is still in the normal range, he's not concerned, but I must admit to still be afraid.
Recent research indicates that Celebrex reduces recurrence of colon polyps. The popular arthritis drug Celebrex may help to prevent colon cancer in people at high risk of the disease, but the benefits need to be weighed against the chance of developing heart problems, researchers say. Two large studies released today show that the drug can slash the risk of developing new precancerous growths called polyps by 33% to 45% in people who already have had growths removed. http://www.webmd.com/content/article/120/113880
Day 120/48 (Cycle 6, Day 15) - Tuesday, April 11. I had my regular oncology visit today. My chemo is going fine. We scheduled the post-chemo tests - blood work, CT scan, and colonoscopy. At the appointment, it didn't have much impact, but now a few hours later the fear is setting in of what the tests might reveal. I also realize that my regular visits to the oncology clinic will be less after the end of chemo. They are an integral part of my life and seeing the staff less feels like a real loss.
Day 110/58 (Cycle 6, Day 5) - Saturday, April 1. I had an appointment with my naturopathic doctor. She reviewed my blood work and said things looked good. She said after chemo she would recommend other herbs and botanicals to take. There was a recent show on PBS (http://www.pbs.org/thenewmedicine/) . The one hosted by Dana Reeve before she passed. The emphasis was on how things other than traditional Western medicine is helpful, including things like communication time with the doctor. What really struck me was not just the truthfulness of it, but how health care will continue to be even more bifurcated between people that have resource and those that don't. Its clear that there is just not enough money to do all the "best" things for everyone. I know this, but yet I feel that the system we have now is makes the coverage even less than it needs to be. People often have difficulty even getting "good", must less "best".
My feet are pretty much healed from the 8K walk last week. Am back to wearing my extra wide black shoes/fluffy sox, rather than slippers. I started keeping a bike in the car and just going out when the weather is nice. Think I will keep this up and save the feet. The first few days of this cycle I didn't really sleep much, but totally crashed this morning.
Cycle 5 - Tuesday, March 7 - March 27, 2006 - More than halfway!
Day 103/65 (Cycle 5, Day 19) - Sunday, March 26. My husband and I participated in an 8K walk/run for Colon Cancer Awareness this morning. The oncology staff also walked it and it was really great to connect and see the support outside of the clinic. This is my off week for the chemo. I went on a business/pleasure trip this past week and walked a great deal. My feet really blistered, but have been taking care of them (not walking much) these past couple of days, so I could walk it. It helped, but my feet blistered again.
Day 98/70 (Cycle 5, Day 14) - Monday, March 20. Its the end of the fifth time of Xeloda. Had my oncology visit, we discussed what happens after the chemo is over and what happens in relapse cases. There wasn't any information I didn't already know, but a combination of "being able to hear it now" (the logistics of chemo are not as overwhelming) and the focused the discussion, got me really scared. I think the chemo impacts your body and does make you more emotional. After a few days now in my off-week, I'm still scared but have a different perspective. Yesterday was nice and sunny and I enjoyed the outdoors and being able to be happy with that. So what the oncologist said will happen after chemo, is that there will be CT scan every three months for the first year. He said this was a bit more than the guidelines, but its what he did. He said that relapses usually start around 18 months after initial diagnosis and if you're free after 5 years, you're pretty much not going to.
The company insurance goes from May 1 to May 1, so we are dealing now with selecting next year's policy. The premiums for the insurance plan we have gone up about 150%. Its still reasonable considering over insurance plans, but its a big increase. They are offering lower premium plans, but the coverage isn't as good and don't want to chance anything. I am glad the policy and the carrier won't change, as its always a hassle to deal with it and just don't want to bother with it.
Day 90/78 (Cycle 5, Day 6) - Sunday, March 12. Haven't done an entry in a while, but quite a few cancer things have happened. I think the most significant is that I am at a place where I can share my feelings about my dog - Cashew - dieing on Friday, February 24. She had been diagnosed with cancer last August and was given two weeks to live. She stayed around for over six months. Its because of her I realized the need for early diagnosis and had my colonoscopy. I think she stayed with me to give me the strength I needed to fight my own cancer and passed when she knew I was strong enough.
Last night my husband's company had its annual Spring party. It is always a formal affair and I focused for weeks on what I was going to wear. Due to my feet issues from the chemo, I wear thick sox and extra wide shoes - not the most compatible with evening wear. I ended up wearing a long black skirt. It wasn't so much about what people thought, but the fact that I look forward to dressing up every once in a while and I went to that "victim" place because of the shoes. The little things are often a reminder of the cancer and the treatment.
CEA: My CEA is way below the 5 level and that CEA markers usually rise during chemo, but it put a scare in me. The CEA marker for me is probably not an indicator of anything, since it was so low when they found the cancer. Its once again the little things. CEA History: .07-before surgery; 1.6 after Cycle 4; 1.9 after Cycle 5.
To repeat some information in one of my colon forums:
"An initial rise in CEA level during effective chemotherapy in colorectal cancer patients may not always indicate progression of disease but may be a transient CEA surge in patients responding to chemotherapy. An initial rise in CEA level during effective chemotherapy in colorectal cancer patients may not always indicate progression of disease but may be a transient CEA surge in patients responding to chemotherapy. In monitoring tumor responses and in future guidelines for the use of tumor markers, the possibility of a surge phenomenon should be taken into account." http://www.jco.org/cgi/content/full/21/23/4466I was treated in '03 for Stage III colon cancer with 5FU and Leucovorin. My oncologist did not check CEA during treatment and when I asked why not I was told it can be erratic during treatment due to dying cells releasing CEA. Since treatment it has been checked every 2 months (per their protocol). My CEA was never reflective of having cc and even though it has always been within normal range, every so often it will go from 1.2 to 2, get me anxious and then return to the 1.2 area. There is a random fluctuation of readings within the normal range. When I asked why keep measuring it if it was never abnormal even with Stage III cc., the response was that if it should return in a more aggressive form or show up in the liver, then that might be heralded by a sustained rise in CEA, thus it continues to be checked.
I cannot recall where I read that dying cancer cells release CEA into the blood stream resulting in a temporary rise in CEA.
Predicting Chemo Therapy outcome: Press release -15 March 2006: Studying the gene-expression profiles of patients with colorectal cancer might help predict their response to chemotherapy. In a study published today in the open access journal Genome Biology, researchers identified in the tumors of colorectal cancer patients almost 700 genes whose expression was different between patients who subsequently responded well to combined chemotherapy and patients who were resistant to the therapy. These findings could be used in clinical practice to complement clinical, biochemical and genetic markers for better treatment of patients with colorectal cancer. A research group led by Sandrine Imbeaud from the CNRS and Pierre and Marie Curie University, Villejuif, France, used microarrays to analyse the gene-expression patterns of samples from colon tumors and liver metastases collected from 13 patients with colorectal cancer. The microarray analyses were carried out before the patients were treated with combined chemotherapy of folic acid, 5-fluorouracil and irinotecan. Imbeaud and colleagues identified 679 genes that were differently expressed in patients who subsequently responded well to chemotherapy compared with patients who were resistant to the therapy. The results were validated by RT-PCR analysis, which confirmed the differential expression of 22 genes selected from the list. The findings were also confirmed by RT-PCR analysis of colon and liver tumor samples collected from two additional patients. The authors were able to integrate their findings into global and interconnected molecular networks that characterize resistance in patients with colorectal cancer before they are exposed to chemotherapy. They conclude that knowledge of these networks could potentially be used to improve diagnosis and treatment of patients with colorectal cancer. website reference: http://www.biomedcentral.com/info/about/pr-releases?pr=20060315
Cycle 4 - Half Way Mark - Tuesday, February 14 - Monday, March 6, 2006
Day 84/84 (Cycle 4, Day 21) - Monday, March 6. The actual half-way mark of my chemo regime is today. My blood count numbers from the cycle were all within range, so tomorrow I begin the 5th cycle. I am looking forward to the end of the chemo. There are some family events coming up in the summer and talked with the oncologist about what post-chemo tests would be needed and when, so I could start planning. It is good to start really thinking about life again. But the end of chemo is also scary. The "waiting" for a possible relapse begins. The idea of having no control and letting be whatever will be is difficult.
There is no absolute way to detect cancer. The CEA blood marker is the only one currently used. The latest information from a researcher at Yale, is that a combination of markers may significantly increase the sensitivity of the detection to 95%.
a) Serial monitoring with CEA detected recurrent/metastasis of colorectal cancer with a sensitivity of 76%, specificity of 70% and provides an average lead-time of 5 months.b) The corresponding sensitivity and specificity for CA 242 were 60% and 87%, respectively. Combination of CEA and CA 242 increased the sensitivity to 88% at specificity of 78%.c) TIMP-1 detected colonic cancer with a sensitivity of 65% and rectal cancer with a sensitivity of 42%, at 95% specificity. Combining CEA with TIMP-1 increased sensitivity for colonic cancer from 65% to 75% and rectal cancer from 42% to 54% (at 95% specificity).d) CA 72-4 is useful in detecting early recurrences post-colonic resection with a sensitivity of 78% in a longitudinal study, and was positive up to 100 days prior to clinical diagnosis of recurrent disease. Combining CA 72-4 with CEA increases the sensitivity to 87%.e) In comparison, CA19-9 is a little dependent with CEA.
I spoke to my oncologist about this. He is very open to information I bring in. He indicated that these tests often produce false negatives, which is why they aren't standard yet. He said that if there was evidence of cancer, then my current chemo regime would be different, but he didn't elaborate. So we decided that we would run them every 3 months or so, along the same guidelines that are indicated to run the CEA test. (CEA for me was not an indicator of cancer. 5 or below is considered normal and my CEA has always been under 1.) I both want to have the extra tests to know, but am also scared what they might tell.
So then the question is whether early detection by tumor markers can benefit and how to make it beneficial. I am pretty much quoting an email from one of the cancer forums. The concerns raised can be summarized as 1) whether these markers detect early recurrence with high sensitivity +accuracy and 2) whether early treatment based on markers increases survival time.For the first question, applying multiple markers is surely to increase the sensitivity. In fact, the more markers you have, the more accurate you can get. With multiple markers, a new algorithm (pattern prediction) is able to achieve nearly 100% accuracy in case of ovarian cancer. The whole point of this algorithm is to make decision (prediction) based on statistic value of every available biomarkers. Fortunately, more markers in addition to what is mentioned previously are known to detect recurrence of colorectal cancer. New technologies allow us to identify more markers. Last year, NIH has announced a program to standardize tumor marker methodologies towards eventual clinical use.
For the second question, whether early chemo treatment will benefit survival needs to be and can only be answered by trial studies. Favorable prejudgment is essential for the approval of this trial study. The concerns can be summarized by the following questions:1. the criteria to warrant chemo treatment. If tumor markers indicate that the cancer is coming back in the next a few months with 95% accuracy, does it warrant a chemotherapy? What levels of accuracy will make you not to wait until the detection of solid tumor by imaging? Keep in mind, not all of the metastasized solid tumors are resectable (What is the percent of recurrent tumors that are resectable for curative intent?).2. the available treatment. Which regimes have been shown or are potentially to cure the microscopic tumors before they grow big? For colorectal cancer (adenocarcinoma), current regimes significantly postpone tumor growth with certain percent of complete killing. Immunotherapies may be better suitable to kill microscopic tumor cells, although further clinical trials for colorectal cancer are needed.3. risks of treatment based on tumor markers. Side effects of these chemo treatments will affect quality of life. However, if there is 95% chance that the tumor is coming back, would you sacrifice a few months of quality life to postpone and may complete suppress it? In the worse scenario, even early chemo treatment failed, you still have the option for surgical resection, isn't? Or you would still like to wait until solid tumor is detected by imaging?
Day 75/93 (Cycle 4, Day 12) - Saturday, February 25. On Tuesday I was opening the top of a bottle and used a knife to cut open the protective film. The knife slipped and I gashed my hand at the end of my thumb. My blood work was fine before I started the cycle, but got a bit scared about my clotting factor. I was hesitant to call the oncologist. I think it was me having to face that even the little things that happen in life, can have serious consequences when you're on chemo/dealing with cancer. The bleeding has totally stopped. The hand is a bit swollen and it still hurts, but I have to really deal with why I didn't call the doctor. So, its now Saturday night and the skin around the wound is very, very white. My husband urges me to call the Cancer Center (after hours now, so I feel really intrusive.) The on-call oncologist said from the description it was probably o.k., but it should be looked at sooner rather than later. So I go into the local emergency room and its reconfirmed that its healing fine on its own. The emergency doctor said stitches would have been good when it happened and the whiteness is from the moisture of bandaging it. He said to just leave it open. So it was good I went in, but one does get tired of going to doctors all the time.
Day 68/100 (Cycle 4, Day 5) - Saturday, February 18. When I went to get my Xeloda pills to take for my afternoon dosage on Friday, I discovered that two of the pills' coatings were compromised - there will chips in them. I returned the remaining pills, as well as the chipped ones to the pharmacy, for them to send to the manufacturer, if needed. They have given me new ones from a new bottle. The pharmacy contacted Roche and the manufacturer is checking their quality control, but will probably not get back until next Monday. The doctor is also going to have the pharmacist at the Cancer Center be involved. So, I guess, the question for me is were the rest of the pills I took compromised in some way? I did not take any chipped ones. I took 7 dosages - 3 full days and 1 half day from that batch. Given the peak in my tiredness about an hour after taking them and my general feeling of tiredness and minor hand and foot symptoms, I think they were doing something. The quick and positive responsiveness of the pharmacy and the doctor doesn't change the outcome, but it makes me feel like I am being competently taken care of. The situation is unusual and has not been heard of before, but my gut tells me everything is o.k.Day 64/104 (Cycle 4, Day 1) - Tuesday, February 14. Happy Valentine’s Day! My husband gave me a teddy bear with a heart. The Cancer Center indicated that flowers (actually any live plants) were not a good idea with weaker immune systems. I start the fourth round of the Xeloda today and in some ways want the chemo to be over (no more tiredness, no more sore feet or hands, etc.) and in some ways I don’t. I know when its over, then the “wait” to see if there is a relapse is always there. Today I was reminded of this by two postings on a colon cancer forum I follow. Two people were NED (no evidence of disease) for close to five years, when the colon cancer had metastasized to the lungs. Last week, I went in for a routine mammogram. (All was fine.) Waiting for the results, I was sure I was going to be told I had cancer, though. What came up was the loneliness of it all. That I would be told the results by myself with the doctor only. This is how it happened before. The surgeon came by with the biopsy results after the surgery and I was in the hospital room alone. Whether someone is there or not, I think the feeling is one of facing my own mortality. I am happy to be alive today and helping myself by taking the chemo.
Cycle 3 - Reduced Dosage - Tuesday, January 24 - Monday, February 13, 2006
Day 56/115, Monday, February 6. Had my oncology visit today at the end of the third cycle. My numbers were all fine. The oncologist said the redness and cracking in my hands and toes were normal. He said the tiredness I'm feeling is also normal with the Xeloda as the treatment cycles go on. So no increase or decrease in dosage. The other good thing that occurred today is that all my engagements with the insurance company paid off - literally - they agreed to cover the Celebrex, which helps with the side effects of the hand and foot issues. The doctor had to provide an authorization for its use in this type of situation. The actual dollar difference in my co-pay and buying it directly was not that great, but for whatever reasons I felt I really had to fight it. Its probably my way of venting my anger about having cancer and dealing with all this.
Day 50/118, Tuesday, January 31. I'm mid-point in the third cycle of the reduced dosage (from 4000 mg/day to 3000 mg/day of Xeloda). Am way more tired and sleeping deeper than in the other cycle - about 10 hours a day, but pretty much no other side effects. (In the other cycles I was often tired, but couldn't sleep - like I was on caffeine.) I'm not having that "groggy brain" feeling, which is great. My hands and fingers sometimes still feel like "they've been in water too long", but that's how they felt at the beginning of the cycle.
Day 46/122, Friday, January 27. I'm feeling fine today. I took a yoga class, but was too tired to take the strength building class at the cancer center. I've been thinking about blogs and why I decided to do one for my cancer journey. I have had other challenges (and joys) in my life and did not share those in a general way. I started this blog, to stay in contact with others I've met through the web and to have a central place for my story. I also think that cancer forces one to face their own mortality and honesty is a way to deal with it. I think the blog is a way of saying "hello" and not "good bye". Its like when I keep the TV or radio or music on to have noise around and feel like I'm not alone.
Day 43, Tuesday, January 24. Its interesting to me how much we are inter-connected physically, emotionally, spiritually. When I was feeling bad from the chemo, I was in this "I don't want to do this" and was not looking forward to starting the 3rd round. By Sunday, I was feeling physically good and starting the chemo again is now empowering. I'm doing something to fight the cancer! Its also interesting to me how when I need my spirituality the most - when I'm down - I don't turn to it as easily. I get into this "why me/victim" feeling. I find, though, that if I just reach out and act "as if" I start to feel better emotionally, as well. When I'm in a good state emotionally, I can be grateful. I had an exchange today with another woman who just had surgery 3 weeks ago and is going through the chemo decision now. It also makes me feel empowered that I can do something, by sharing my experience with someone.
Cycle 2 - Happy New Year? - Tuesday, January 3 - Monday, January 23, 2006
Day 42, Monday, January 23. I begin taking Xeloda again tomorrow. I am pretty much symptom free. My fingers still have that "I've been in the water too long feeling". I went to a colon support group tonight. I shared about having night guards made for mouth sores, as a barrier between your teeth and your lip. I'm starting to feel like an old-hand at this. I have 126 days to go. One part of me feels good that I'm 25% done, but another part of me just doesn't want to do anymore. At the meeting tonight, someone shared about a person who has been struggling for over 3 years with this disease. They have decided to go a clinic in Mexico and try something experimental. It reminded me how difficult and desperate this disease can be.
Day 36, Tuesday, January 17. Went in for my end of cycle oncology visit. The doctor reduced my dosage to 75% of what I was taking before (i.e., 1500 mg twice a day from 2000 mg twice a day). He said that each person reacts differently to the chemo and that studies were specifically tailored to what works. What is important is taking the chemo for the full cycle indicated. He said that studies always include reductions, delays, etc. So my lower tolerance for the chemo was not an indication that it was not as effective.
Day 35, Monday, January 16: Emotionally, I'm about 80% o.k. and physically pretty-much symptom free. All I can do is pray to be strong to handle whatever will be. I went to a meeting on Saturday, where the topic was fear. What resonated with me was how fear-motivated our lives are. I grew-up being afraid in my home environment, so I start out without really knowing what is legitimate fear. Add to that that our society seems to be based on fear. Everything from advertising (if you don't buy this product, you'll not be liked, you'll not look good, etc.) to our government. It made me realize the importance of letting go what I can't control and being positive and taking action about those things I can and should.
So here's my current feeling. The chemo symptom may be about me having too much drug for my system to process. One theory is that the chemo seeps out through the capillaries - the thinnest veins. So it really is a fine tune about the dosage and its how my body is. They really don't know why chemo works on some cells and not others - which is why chemo isn't and can't be 100%. So my image - rather than being one of fear - is one of having over dosed my system. My system got to a toxic level for me, which should give me a better chance of having killed the cancer. A friend had offered me a visualization of the chemo being like pacmen eating up the cancer cells. It helps.
Day 32, Friday, January 13: My feet still really hurt. I couldn't even put on socks. I had that "I want to quit chemo" feeling, but the alternative is worse, so what are you going to do? I was going to take a yoga and stretch class today, but passed because I couldn't even put on my shoes. I spoke with the oncology team and the doctor took me off of Xeloda for the rest of the cycle. Now I can obsess about whether I'll get enough of the chemo to do "the job". I was told that dosage adjustments are normal. It amazes me how much I can obsess about these things. I reached out to quite of few of my "support group" people and the doctor which helped emotionally.
From the Xeloda field trial study:
57% of patients had treatment interruption, cycle delay and/or dose reduction
83% of patients complete the full course of all cycles even with treatment interruption
93% is the median dosage intensity at the end of the study
60% of all patients got hand-and-foot syndrome (although from anecdotal experience on the websites, its 100%)
17% of all patients got hand-and-foot syndrome that was as severe as mine
34% of patients got nausea, which I haven't had - added just as a reference
10% probability is the onset of a severe toxic effect in the first month
22% probability is the onset of a severe toxic effect in the sixth month
Day 31, Thursday, January 12: My feet really hurt. I was doing fine, but after my dosage of Xeloda last night, my feet really hurt - like there were pins and needles in them. I could not put pressure on them, even socks. I iced them, used Udderly Smooth, and chlorophyll and Calendula (recommended by the naturopath doctor) and this morning my feet look o.k., but still hurt. Not as bad as last night, except for my big left toe, which hurts even though I'm not putting any pressure on them. I really feel like eating chocolate right now.
Day 28, Monday, January 9: I completed my first week of the second cycle. About an hour after taking my Xeloda doses I usually get very tired. This week I had two unusual side effects. Once I got very, very cold - blankets, jackets - nothing helped. I finally fell asleep and woke up o.k. Another time I had a swelling beside my eye and felt extremely hyper. It went away in about an hour. In one of forums, people indicated that they got heart palpitations, but haven't heard about symptoms like this. I guess chemo drugs just react differently on people. Went to a strength building class today, which was good. From my experience with Cycle 1 and other people's stories, the last few days of the cycle is always a bit more difficult. I'm not looking forward to it, but am glad I got my first cycle done last year. The holidays always go by quickly.
Tuesday, December 13, 2005 - Monday, January 2, 2006 - Cycle 1 - Chemo Start
Day 17, Thursday, December 29: I completed my first cycle of Xeloda on Monday and had a medical check on Tuesday. My blood counts were down a bit, but all were in the normal range. I am feeling almost peppy now and its great not having that "drug" feeling. I went swimming yesterday and it felt good not to be tired. My lip sores have gone away. The oncologist felt the sores from the chemo (throat/mouth sores I am told replicate quickly, so they are effected by the chemo), but I was prescribed oral Herpes medication (800mg of Acyclovir once a day) just in case. Apparently, 80% of everyone has oral Herpes virus. Usually its dormant, but with stress or reduced immune response, it can be triggered. The medication works by taking it and seeing if the symptoms occur or not. I decided my last set of sores were not that bad and even though I asked for the medication, I decided I just didn't want to add one more thing to what I was taking. People have also indicated that when their chemo is completed, they sometimes have this lost feeling. I think its somewhat that one's life has evolved around the logistics of chemo, but also that one gets connected to the oncology team and then they are also gone.
Day 12, Saturday, December 24: I woke up on Friday with my lower lip swollen and hurting a great deal. I get these minor symptoms that seem to come and go. I had red hands and legs - not hurting, just very red - this first couple of days. I don't know if it is the medication or something else physical - like having bitten my lip while sleeping - or maybe is the mental suggestion of the whole thing. I used lots of Chapstick yesterday and slept with my night guard on my upper teeth and my whitening guard on the bottom. (1/15/05 update: I did get a bottom night guard. Haven't had to use it yet, but just in case.) It feels better today, but still very dry.
Day 7: Monday, December 20: I went to a colon support group. Everyone there was in relapse or later stages of the disease. I realized that this could be me one day and it got me scared. No one there had anywhere near 33 lymph nodes taken out. I plan to ask the oncologist if that means that my immune system might be compromised in the future, like I don't have enough to obsess about. (1/15/05: I have since spoken to the oncologist, who said that the important thing is that they take out at least 14 nodes, as they have determined that they need that many to detect cancer metastasis. He said that the lymph nodes in the colon area accumulate differently than in the arms, which is why breast cancer patients are at risk for lymphodemia - a situation where your immune system is compromised because of the trauma of the lymph removal.)
Day 5: Saturday, December 17: I did some baking this past week, as we had a couple of parties and friends over. I made up a few gift bags and took them to the neighbors. Walking over there, it hit me that my life had returned to "normal". By that, I mean, the biggest thing that has consumed my thoughts over the past couple of months is cancer. I have made my decision about treatment and what to do and now all I can do is hand-it over. Whatever happens, happens. The Xeloda regime has not wiped me out and I can still do things. Do I want to go back to work (I was laid off last May and have not been job hunting)? Do I want to go back to school? All the things I would deal with if I didn't have the cancer diagnosis. I read about how people have an adjustment after their chemo is over. That for the most part you don't think about, except for when you go back for check-up and are waiting for the results. I think it hit me, that I might be there. I am still wanting to take it easy, as I know the effects are cumulative and my body needs all the rest and calmness it can get.
Day 3: Thursday, December 15: I took a yoga class also at a cancer center. It was nice connecting with people that I could relax around. I have a good support group and loving family and friends, but they have their own lives. The people in the yoga class are all survivors and so its really encouraging. The class was more meditation than poses, but that was good. My stomach muscles are very weak, which I expected after six weeks of surgery and doing nothing, but I was surprised my arms were so weak. I haven't lifted anything heavier than 10 lbs during this time. I bought some 1 lb wrist weights and am going to wear them around the house.
There was a study that indicates that there is a correlation of inactivity and relapse. (http://news.yahoo.com/s/nm/20051228/hl_nm/obesity_survival_dcwould ) Excerpt: "People who are obese around the middle and are physically inactive have poor odds of survival after a diagnosis of colorectal cancer, according to a new report. ... Patients who reported regular exercise before their colorectal cancer was found were 31 percent less likely to die from the cancer than were non-exercisers, the investigators report in the medical journal Gut. In fact, 73 percent of exercisers survived at least five years, compared with 61 percent of non-exercisers. ... we cannot say that increasing physical activity or losing weight post diagnosis is of any proven benefit at this stage."
Day 2: Wednesday, December 14: There was a notice for a support group at the clinic I go to for treatment, but when I got there no one else showed up. I ended up speaking to a woman who was waiting for her 29 year old daughter who was in chemo. The daughter had been mis-diagnosed for a couple of years and her cancer was advanced now. It made me grateful that I had such good doctors and my cancer is in its early stages.
Day 1: Tuesday, December 13: Started my chemo today. For 8 cycles, I am on the Xeloda for two weeks, see the doctor, and am off for a week. Starting was anti-climatic. I'm not sure what I expected, but after six weeks of obsessing about, I guess anything would have been anti-climatic. I'm just glad it started.
Regime: I am taking (as of 3/26/06)
- 1650 mg of Xeloda 2/day, total 3300 mghttp://www.halls.md/body-surface-area/bsa.htm is the website I found that calculates dosage amounts. 2500 mg/m2/day - whatever that means - is the recommended for Xeloda
(Cycle 1-4000mg; Cycle 2-4000mg, but stopped after one week due to bad foot problems; Cycles 3 and 4: 3000m; Cycle 5 and now-3300mg
. )
- 200 mg of Celebrex 1/day (My oncologist says this is to address the foot and hand syndrome, but I haven't seen much about this on the web or literature.)
- 200 mg of B6 2/day (supposedly also to address side effects)
- 100 mg of Docusatte Sodium - a stool softener - still having issues from the resection on November 3
- multi-vitamin
- 600 mg of calcium (this is because I'm a woman and for bone density)
- 2000 mg of flax seed oil
- 2000 mg of fish oil (prescribed by a naturopath. She said it would make the chemo more effective.)
- 1000 mg of L-glutamine 2/day, total 2000mg (prescribed by the naturopath. She said it would help the gut.)
Also, if/when I get hand/foot syndrome the naturopath prescribed: (http://www.mskcc.org/mskcc/html/11570.cfm - is a website maintained by Sloan Kettering on herbal supplements.)
- Chlorophyll complex ointment (list price was $36 at Key Pharmacy, but found it on the web for $28.80 at http://www.totalhealthdiscount.com/)
- Calendula gel Boiron (cost $6.9)
Both doctors said that patients have gotten some relief with Udderly Smooth cream and applying ice. As of 1/15/06, I apply the chlorophyll ointment and Udderly Smooth about twice a day to my feet. The chlorophyll ointment is like a tar paste and is quite messy, so I'm using it as much on my hands. Udderly Smooth was supposedly developed for use on cows and is just like any lotion. I find that I usually start off with socks when I sleep, but take them off during the night. This allows my feet to breathe and seems to help. I tried icing my feet, but that didn't really seem to provide relief for me.
1/31: My insurance company changed their procedures from last year and I've still not been successful in getting the Celebrex covered. I decided to order from a Canadian pharmacy: http://www.canadapharmacy.com/. Cost was about half. The Canadian Pharmacy Association is the validating agency - http://www.ciparx.ca/. A prescription is required.
Saturday, November 5, 2005 - Tuesday, December 3 - Deciding on Chemotherapy
Note: The information here is based only what I found out, which I hope is helpful, but please check with your doctor to verify the verasity and what is right for you. My choice was to do Xeloda only, but it is a personal choice.
IV port. The surgeon told me two days after surgery that one of the 33 lymph nodes had cancer and I would need chemo. I started to cry and asked if I was going to die. He said no, it would be more like an on-going chronic disease. He said I would probably be seeing him again to have an IV port put in. I focused on this for a long time and guess I still do. The thought of another procedure really bothered me. In end I did oral chemo only, so I didn't need one. I would have done it, if I had needed to, but must admit the idea still scares me. I think it would have been o.k., its just what I focused on to handle my fear.
Oncologist 1. The surgeon scheduled an appointment for me with the oncologist at the clinic I was operated on. It was about 2.5 weeks after my surgery, so I was still a bit sore. The appointment was for an hour. My husband came with me and we recorded it. There was a great deal to take in. I cried at one point and he stopped the explanations and said that it was normal to be afraid and upset. He said I had four options: do nothing; FOLFOX (5FU delivered via IV with basically a pump over 46 hours and Oxiplatin); an oral version of 5FU called Xeloda and Oxiplatin); and doing a field trial where you get the FOLFOX plus possibly another drug. When he came in he said my chances of being o.k. were about 70% and with the chemo it would be around 87%. He then said he should actually run the statistics and did so - my odds were 83% if I did nothing and 90% if I did the FOLFOX. He said I could start as earlier as 3 weeks after surgery, but waiting up to 8 weeks wouldn't change the odds. I did also have a follow-up meeting with his nurse who explained the side effects to me. Oncologist 1 indicated he would do a field trial.
Oncologist 2. Through a friend of my brother's, I connected with a cancer research center, to at least get a second opinion, the week after seeing Oncologist 1. His statistics were that if I did nothing I would be 85% o.k. and if I did the FOLFOX 91% and if I did just the Xeloda 90%. I also cried and he got up and hugged me. My husband also came with me to this discussion and asked about the Oxiplatin. He said that this was these were the two basic options and there were variations that could be discussed once the basic decision was made. I told him I was not interested in a field trial. With my odds being so high, I didn't want to risk taking a drug whose interaction was relatively unknown. In the end, I went with oncologist 2. I'd say the fact that he was more thorough in his information to me was important, but the main reason, was that I just immediately liked him. I felt like he was a partner in my decision.
Chemo research. I did quite a bit of web research and tapped into friends/relatives that were doctors. I would say that getting information is essential, but not all information is accurate. I ended up actually going to the manufacturers websites to read what they wrote about the chemicals. I got information from the oncologists and their staff and cancer resource centers. http://www.factandcomparison.com/ was one website I found I liked that gave good drugs comparisons. I found by doing this I could be in control a bit and wasn't as overwhelmed. I perhaps obsessed a bit, but it was a good coping mechanism for me. As for advise, even from doctors, is that I realized I needed to make my own choice and that they need information to make decisions, as well. For example, my cousin said he had checked with an oncologist friend and I should go FOLFOX. Yet, once I had shared the statistics, he re-checked with his friend said that my choice for Xeloda only was a wise one.
Chemo choice - 5FU vs. Xeloda. 5FU is a standard use drug in the fight against cancer. It has been used since the 1950s. A second drug is administered with 5FU called leovorcin, which helps the assimilation of the 5FU. An oral form of the 5FU, which interacts with cancer cells enzymes began testing in 1998. Its been approved for breast cancer for some time. One of the latest studies on this is a New England Journal Medical from June 30, 2005, discussing a study done with about 2000 patients taking either 5FU or Xeloda (also capectabine - I don't really understand the reasoning behind why drug companies use a technical name and then a marketing one, as both seem obscure to me.) The study basically indicated that Xeloda was as effective as the IV form. The toxic effects were also shown to be less and delayed with Xeloda, except in the instance of getting what is called hand-foot syndrome where you get redness or possibly blisters. (This usually occurs after the second or third cycle of taking Xeloda.) 5FU would be administered by going in and getting some as of the medication as an IV at the facility and then being given a pump that would go through the IV for 46 hours. You'd return to the facility to have it removed. (I connected with some people on the web, who had a home nurse come by and do the removal.) You do this every two weeks for 12 weeks. Xeloda is taken twice every day for two weeks and then you're off a week and start again for a total of eight 3 week cycles. I decided to go with the Xeloda, due to the less toxicity and less dependence on an IV and logistics.
Chemo choice - Oxiplatin. This is a platinum based drug which has been shown to effective as adjunctive chemo. It's an IV drug and given at the oncologist's office, usually in the same session as when you get the 5FU. FOLFOX is 5FU (plus the leovorcin) and Oxiplatin. There is a FOLFOX4 and a FOLFOX6, which I don't really understand the differences (I know the time periods for infusion are different), with FOLFOX6 being the standard. The side effect of the Oxiplatin that I was concerned with is neuropathy. It seems like everyone gets it to some degree with most people getting a tingling or numbness which is accentuated by cold. For some the effects remain for a long time after treatment and could affect the quality of life. Since the upside was 1% and the possible side effects were strong, I decided not to do this drug. The FOLFOX is the recommended, gold standard, so it was a difficult choice. I felt if I did not do any chemo and relapsed (I had already not listened to the doctors by waiting until almost 55 rather than 50 to have a colonoscopy), then I would be angry for not doing it. If I do relapse, I just will never know if the Oxiplatin would have made the difference, but I will be at peace that I did what I could.
Websites of interest: http://www.medpagetoday.com/Gastroenterology/ColonCancer/dh/2577 - 1/30/06 article on adding xaliproden (SR57746A), an investigational serotonin receptor agonist, to reduce peripheral neuropathy. http://products.sanofi-aventis.us/eloxatin/eloxatin.html - manufacturer's field trial information on Oxiplatin. http://www.supportiveoncology.net/journal/articles/0408w01.pdf - 2006 Validation of a Self-Reported Neurotoxicity Scale in Patients with Operable Cancer Receiving OxaliplatinStatistics. There is a database that collects statistics on survival and relapse rates for patients using adjunctive therapies for breast and colon cancer - https://www.adjuvantonline.com It is for medical personnel, as you have to put in the description of the case specifics to get the statistics. The program gives you a print out showing the result if chemotherapy is done. In the case of colon cancer, it shows if you do 5FU only or FOLFOX (i.e. add Oxiplatin). This was where the statistics on my outcome came from. Both of the oncologists I went to knew about this, but the first one hadn't run the program prior to my visit. Oncologist 2 provided me with the link information reaffirming my positive thoughts about working with him. This information was essential in the decision I made. From one of the web Forums: " You are suggesting that I have treatment which will make me temporarily unwell, to treat cancer that you can't find, and can't be sure you have eliminated even when treatment is finished".
Monday, December 5, 2005 - Getting Ready for Chemo
My body is just not my colon and I am more aware of how important overall health is, especially during chemo. Even though the timing was a bit early, I decided to go ahead and get all the other things I normally do taken care of - like getting my teeth cleaned and getting my annual physical. My oncologist indicated he would also serve as my primary care physician, but I decided to go to the physician I have been seeing for the past several years. In addition to having my "yearly" tests done, I reviewed with him the chemo alternatives. It's interesting how just verbalizing things is helpful.
Sunday, November 6, 2005 - December 12 - Recovering from Colon Resection Surgery
Pain. I handled my anxiety about the operation by obsessing about how much pain I would be in. I had had a friend who had had abdominal surgery and I remember how hard it was for her. They had given me an epidural, however, so I didn't feel the pain. Three days after the surgery, they were going to remove it and I was a scared. The anesthesiologist came by Sunday morning, stopped the epidural medication and gave me oral pain med - Oxycodone. He returned in the afternoon to see if I was still doing o.k. and since I was they removed the epidural. They gave me two more pills and took out the catheter. I thought it was going to hurt when they removed it, but it didn't. It just felt funny. My husband drove me home. I was in the back seat holding a pillow over my stomach for the bumps, but pretty much feel asleep. I was supposed to be take 2 pills every four hours, which I did on Sunday night and Monday morning. I felt light-headed and nauseas, so I cut back to 1 pill and by Tuesday had stopped taking them altogether. I spent most of my time in a recliner and by the end of ten days was walking a mile on flat surfaces.
Pooping again. I don't want to be indelicate, but this was and in some ways still is a big issue for me and I didn't couldn't find many sharings on this. The doctors refer to the first time you poop after the surgery, as your colon awakening again. This occurred for me about six days after surgery. After day 5, I was afraid it wouldn't happen and I would need another surgery or something. I guess the signals from your abdominal area to your brain get mixed up somehow. I was sitting on the toilet and it just came out. What I found over the upcoming weeks, is that I couldn't always tell when I had to go. I guess it would get backed up to the point that I would have abdominal discomfort and pain and know I needed to do something. I couldn't always distinguish between post-surgical pain and needing to go the bathroom, but could tell once I had gone. I am able to tell now when I have to go. I was taking stool softener - 100 mg of Docusate sodium - twice a day - after leaving the hospital, but still got constipated. The doctor added two dosages of milk of magnesia and it was fine. I had to experiment with what worked and am now doing only one stool softener a day and can pretty much tell when I need to go. The doctor said I might need the stool softener for a good 3 to 4 months. There was also a recent study from that indicates that chewing gum after the surgery will help things get going faster (http://www.usatoday.com/news/health/2005-12-14-gum-colon-patients_x.htm?csp=N009). I need to get up once during the night for a bathroom break (usually a pee) and then in the morning when I wake, I feel the pressure again.
Scars. The removal of the colon was done lapriscopically, but the sewing of the colon back together was done by a cut. I have small scar (about 2 inches) under my right breast and a little 1/2 inch one to the left of my belly button. I have another scar from my belly button going up about 4 inches. My belly button area was swollen for almost 5 weeks and I had a bit of a skin infection there. I could only wear loose clothing. I primarily wore knee sox and a long dress, so nothing was around my middle. If I did go out, I wore loose fitting work-out pants. I could not wear underwear for the first 3-4 weeks, because of the pressure on my abdomen.
Weight loss. I did lose about 10 lbs and have kept it off since the surgery.
Muscles. I was walking for exercise since pretty much after a week of surgery. At first it was a mile twice a day on flat surfaces, as my stomach area hurt/burned a bit when I moved up and down alot. By the third week, I could up hills and walk at a reasonable pace without being in pain. It took me about four weeks to feel comfortable enough to sleep totally horizontal in a regular bed, but sometimes would have a slight burning sensation when I first got up. I took my first yoga class six weeks after surgery. My abdominal muscles were very weak and burned just a bit when I did little things. I am taking it slow. I was surprised, however, by how weak my arm muscles had become. I was not supposed to lift anything greater than 10 lbs for six weeks. I bought 1 lb arm weights and am wearing them twice a day for 30 minutes or so to start building back up.
Saturday, November 5, 2005 - Cancer Diagnosis
The surgeon came by today and gave me the bad news. He said that the cancerous polyp had been totally removed during the endoscopy, but that one of the 33 lymph nodes they had removed was found to be cancerous. Since the polyp had not gone through the colon wall, the cancer had metastasized. So I was diagnosed as a stage IIIA. I am really scared it could be anywhere in my body. He said I would need chemo and would probably see him again to have a port put in. For whatever reason, the idea of another surgical procedure freaked me out.
The following study indicates: "The number of lymph nodes analyzed for staging colon cancers is, itself, a prognostic variable on outcome."
Colon Cancer Survival Is Associated With Increasing Number of Lymph Nodes Analyzed - Journal of Clinical Oncology, Vol 21, Issue 15 (August), 2003: 2912-2919
http://www.jco.org/cgi/content/full/21/15/2912
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Excerpt from the Discussion section of this paper:
Our study reveals that the number of lymph nodes analyzed is a significant variable that affects survival in both node-negative and node-positive patients. Regardless of the number of positive nodes, survival improved as more nodes were removed. If a patient was classified as node-negative, survival was also affected positively with an increase in the number of nodes analyzed.
The number of nodes that must be examined to yield a reliable assessment of the nodal status of a patient has been debated. In 1990, the Working Party Report to the World Congresses of Gastroenterology reviewed this topic and came to a consensus recommendation that at least 12 nodes must be sampled to adequately stage a patient.14 However, several more recent studies have brought this number into question. Goldstein et al15 found that the number of node-positive patients continued to increase until 17 to 20 nodes had been examined, leading to the conclusion that a minimum of 17 nodes should be analyzed. Wong et al16 found that node-negative patients had significantly fewer nodes examined than did node-positive patients (14 v 20 nodes), and to achieve a nodal positivity rate commensurate with the National Cancer Data Bank, at least 14 nodes should be examined. It is clear that to accurately stage a patient with colon cancer it is better to evaluate as many nodes as possible. Our data would indicate that for node-negative patients, at least 20 nodes should be identified.
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http://www.mayoclinic.org/news2004-rst/2250.html
The National Cancer Institute (NCI) funded this comparison study as a top priority clinical research project. The study was coordinated by the North Central Cancer Treatment Group (NCCTG) in conjunction with other National Cancer Institute Cooperative Groups.
Dr. Nelson listed these findings of the study and benefits to the patient:* Almost exact rate of recurrence in both sets of patients. The cancer returned in 160 of the 872 patients; 76 had undergone laparoscopic surgery and 84 had the standard operation.* The return of the cancer in the location of the surgical wound was less than 1 percent in both sets of patients, occurring in two patients who had laparoscopic surgery and one patient who had standard surgery.* The survival rate was almost identical -- 86 percent of patients who had undergone laparoscopic surgery were alive three years after surgery and 85 percent receiving the standard surgery were alive.* Similar rates of complications during surgery and within 30 days of surgery in terms of hospital re-admissions, re-operations and deaths.* Shorter hospitalization for patients who had laparoscopic surgery -- on average, five days in the hospital compared to six days for the standard surgery group.* Shorter use of intravenous pain-relieving medications after surgery for the laparoscopic group -- three days versus four days. Also, briefer use of oral pain relievers -- one day for laparoscopic group compared to two days for the standard surgery group.
Thursday, November 3, 2005 - Colon Resection Surgery
I had my colon resection surgery today. I had been really afraid of the pain afterwards, but it turned out not be a problem at all. The hospital I went to gives all abdominal patients an epidural, so I was fine. I was actually on my feet within about 12 hours.
Friday, October 27, 2005 - Surgery Emotions
I am handling my concern over the upcoming surgery and the possible results by reaching out. It helps. I continue to talk with family and friends, but decided to see a primary care doctor who I have been going to for some years now. I trust him. He was reassuring. He reviewed the reports with me and provided information and answered questions in a leisurely manner that didn't make me feel I was intruding. (I'm not sure why, but we often feel that the doctor's time is more important than our own.) He knew of the surgeon and provided reassurance of his qualifications. I don't think I really "learned" anything new, but it was calming to me.
Monday, October 24, 2005 - I'VE GOT CANCER!!!!!!!!
The doctor calls me at 4PM to let me know the biopsy results from the large polyp he removed on Thursday were in. IT WAS CANCEROUS!!! He had made an appointment for me with the surgeon the next day. He said that the colonoscopies only allowed them to view the inner lining of the colon and when cancer was detected the protocol was do a resection. I barely heard what the surgeon said, so I was glad my husband came with me. We scheduled the surgery for as soon as possible. He wanted me to have a CT Scan and chest X-ray done first, which I did later on in the day. I then spent the next few days obsessing about the surgeon who was going to the surgery. He had done over 300 of them. I checked his background, asked people, etc. Once I felt comfortable that he was good, I just had to have the courage to go through with it. I had just spent several days feeling very lucky and thanking God for having this caught when it was. Now I was angry and had this "why me" victim attitude. I realized I had to start praying to have the courage to do what was right and turn over the outcome. I "acted as if" I really believed this and eventually it felt that way. If it hadn't been for all my family and friends that called and let me talk endlessly about all this, I never would have gotten through it.
Thursday, October 20, 2005 - Second Colonoscopy or Polypectomy
This colonoscopy is going to be done under general anesthesia, as they are going to remove the large polyp. Its a day procedure, however, no over night. While I'm waiting to go in for a pre-op meeting with the anesthesiologist, I read my chart. I see that the GI doctor that is going to do the procedure, wrote in his notes that I would probably need a colon resection although he would try by doing the encodscopy. I was scared. I was under for 3 hours. A second doctor was called in. After the procedure, the doctor meets with my husband and myself and said it looked fine. He felt he got everything. I had a surgical consult scheduled, which he said I could cancel. Of course, they would still have to wait for the biopsy results. I was elated! I was very grateful to my Higher Power.
Tuesday, October 11, 2005 - First Colonoscopy
I was just a month away from my 55th birthday. I had been told to get my colonoscopy at age 50, but postponed it because I was scared. My 6-year-old cocker spaniel was diagnosed with inoperable cancer in August. When I went to pick up my husband after his colonoscopy in September, I realized the importance of screening and yielded to him to get one, as I realized how early diagnosis is the best tool, They tell you the prep the night before is always the worst part of the colonoscopy and they are right! The taste of the laxative is horrendous. (A hint I was given for the next time was to use Fresca when downing the laxative. It did help!) I also got very, very cold. I was told later that the laxatives cause dehydration and that I should drink more liquids. I was nervous going into the procedure. As the doctor was starting, I asked him if I wanted him to stop in middle would he and the next thing I knew it was over. It was really nothing! I felt fine afterwards. He told me that he removed 19 polyps, but there was a big one remaining that was 5 mm long and was growing wrapped around the inside of my colon. He would do another colonoscopy to try and remove it, but I would probably need a colon resection. None of the 19 polyps removed were cancerous.
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