The Colon Club

Hi,

First time poster but have made regular visits here via search engines since diagnosis.

This won't be the first time this question has arisen, but I am currently 6 weeks post-surgery and faced with the decision of whether or not to proceed with Capecitabine (Xeloda) adjuvant chemotherapy for 6 months. Pathology stages me as IIA with no poor prognosis risk factors, if you exclude the fact that I am MSS.

When I was first diagnosed I was of the opinion that I would throw everything at this disease, regardless of how small the % improvement might be. However, after meeting with the oncologist, I'm less certain. He quoted me a 3.4% (strangely specific?) reduction in likelihood of recurrence if I opt for chemo. While that sounds like something, I'm struggling to balance this against the risks of chemotherapy, which no-one seems able to provide statistics on. Specifically, I'm concerned about sudden negative reactions (cardio / DPD) or long-term effects... or any kind of persistent chemo brain or other ongoing cognitive issues. It might sound trivial to have these concerns when faced with cancer recurrence, but honestly I'm not sure how common they are and - as much as I don't want to regret declining chemo - I also don't want to regret doing it when there's a 97% chance that it will have no impact on my overall cancer outcome.

Officially, the oncologist is neither recommending for or against... it's my decision. But I get the feeling he prefers to treat.

Appreciate any thoughts, and any experiences with Xeloda, especially if people have issues persisting past treatment.

I understand your dilemma. My husband was a stage II also, but he had clear risk factors so he did 6 months of folfox. I would say though, even if he didn't have any of his "high risk" factors we would of done the chemo. My feeling is that even when they tell you that your a stage IIa, which does have a very good chance of cure with surgery alone, you can never be sure that cells have escaped that can't be detected and cause a recurrence locally or elsewhere. My feeling is you can always start the chemo, and if it starts causing to many problems, you can always stop it before any permanent side effect set in. I would personally feel much worse if I didn't do chemo and I had a recurrence that may have been prevented than I would if I did the chemo and ended up with some side effects that most likely wouldn't be life threatening and that I could live with without it interfering with my everyday life. When a cancer reoccurs, it's usually much harder to treat.

Many people had had to make this very, very difficult decision, and it's not easy. Whether or not you choose to treat with chemo, be sure you have a good surveillance plan with blood work and scans for at least three yeas, better if it's five!

I wish you peace in your decision making,

deb m

Hi sandkeeper,

I can't advise you in either direction, but I did want to chime in as someone who had a basically fine experience with two types of chemo. I've done FOLFOX and FOLFIRI. I worked full time through both and was able to manage my major side effects with either acupuncture (for neuropathy) or medical marijuana (one day of nausea each treatment that standard chemo nausea meds didn't help). I didn't lose my hair, didn't have digestive issues, and I've had no lasting side effects. Was I tired? Yes, but that didn't really hit until part way through the 2nd time. It did take 6-12mos to fully feel like a person again though.

Everyone's experience is different, but I wanted to share this positive one.

Good luck in your decision!

Kara

sandkeeper wrote:Hi,

First time poster but have made regular visits here via search engines since diagnosis.

This won't be the first time this question has arisen, but I am currently 6 weeks post-surgery and faced with the decision of whether or not to proceed with Capecitabine (Xeloda) adjuvant chemotherapy for 6 months. Pathology stages me as IIA with no poor prognosis risk factors, if you exclude the fact that I am MSS.

When I was first diagnosed I was of the opinion that I would throw everything at this disease, regardless of how small the % improvement might be. However, after meeting with the oncologist, I'm less certain. He quoted me a 3.4% (strangely specific?) reduction in likelihood of recurrence if I opt for chemo. While that sounds like something, I'm struggling to balance this against the risks of chemotherapy, which no-one seems able to provide statistics on. Specifically, I'm concerned about sudden negative reactions (cardio / DPD) or long-term effects... or any kind of persistent chemo brain or other ongoing cognitive issues. It might sound trivial to have these concerns when faced with cancer recurrence, but honestly I'm not sure how common they are and - as much as I don't want to regret declining chemo - I also don't want to regret doing it when there's a 97% chance that it will have no impact on my overall cancer outcome.

Officially, the oncologist is neither recommending for or against... it's my decision. But I get the feeling he prefers to treat.

Appreciate any thoughts, and any experiences with Xeloda, especially if people have issues persisting past treatment.

Welcome! Well..here I am...Stage 2A of the ascending colon. Please review my signature for details. I was faced with this decision 1 year ago to the day! I went with the recommendation of my onc and did 6 months of Xeloda. After much discussion and research, I decided that I would do everything possible to make sure that I did not have a recurrence. Xeloda was quite doable. I met with my onc every 3 weeks for blood work. I do not regret my decision. Yesterday, I had my 6 month scans and blood work. Everything is clear and my blood work was great. Yes, I did alter my lifestyle, only one martini on my week off, but it was only for 24 weeks. I am sure that you will make the best decision. Please feel free to PM me with any questions or concerns you might have.

Beckster

I was stage 2A Rectal cancer, which is treated a little differently. I did chemo/radiation before surgery. My response to the chemoradiation was good only scar tissue left, no detection of disease on a pet scan, surgeon thought I may not need chemo after surgery. When pathology came back from surgery, margins were clear, no lymph nodes, but there was minimal residual cancer cells in the tissue where the tumor was. Because of this my oncologist recommended chemo. She said she could not be certain cells did not get into the bloodstream. Disappointed at her recommendation, she explained even though I only had a 10% chance of recurrence, if I did I wouldn't want to wonder "what if" I did chemo. I went ahead with 6 rounds of xeloda and oxaliplatin. I had xeloda only during chemo/radiation and had no side effects. I think xeloda only is very doable. I know it is a tough decision, but you don't want to wonder down the road. Like someone said, you can always start and if it gets to hard to handle stop.

I'm curious as to why your oncologist did not give you the option of 3 months of chemotherapy. It's my understanding this has become the new protocol for Stage III colon cancer so I don't know why this wouldn't be true for Stage II.

love3 wrote:I'm curious as to why your oncologist did not give you the option of 3 months of chemotherapy. It's my understanding this has become the new protocol for Stage III colon cancer so I don't know why this wouldn't be true for Stage II.

I have heard that 3 months seems to be as effective as 6 months. Mine was 4 months of Xelox. I don't know if that protocol pertains to xeloda only though. Not sure.

susie0915 wrote:

love3 wrote:I'm curious as to why your oncologist did not give you the option of 3 months of chemotherapy. It's my understanding this has become the new protocol for Stage III colon cancer so I don't know why this wouldn't be true for Stage II.

I have heard that 3 months seems to be as effective as 6 months. Mine was 4 months of Xelox. I don't know if that protocol pertains to xeloda only though. Not sure.

From my understanding, when I ask my onc, he said that they still prefer 6 months. However, if side effects become difficult, they are comfortable with the 3 months. This is from an MD Anderson oncologist.

Hm, I am doing the three month protocol and I am stage III. Maybe it’s different for Xeloda only. At any rate, I tolerated Xeloda only very well. I had some lack of appetite at first but that went away. I recommend you try the Xeloda at least for a while, and see how you respond.

Deb m wrote:I understand your dilemma. My husband was a stage II also, but he had clear risk factors so he did 6 months of folfox. I would say though, even if he didn't have any of his "high risk" factors we would of done the chemo. My feeling is that even when they tell you that your a stage IIa, which does have a very good chance of cure with surgery alone, you can never be sure that cells have escaped that can't be detected and cause a recurrence locally or elsewhere. My feeling is you can always start the chemo, and if it starts causing to many problems, you can always stop it before any permanent side effect set in. I would personally feel much worse if I didn't do chemo and I had a recurrence that may have been prevented than I would if I did the chemo and ended up with some side effects that most likely wouldn't be life threatening and that I could live with without it interfering with my everyday life. When a cancer reoccurs, it's usually much harder to treat.

Many people had had to make this very, very difficult decision, and it's not easy. Whether or not you choose to treat with chemo, be sure you have a good surveillance plan with blood work and scans for at least three yeas, better if it's five!

I wish you peace in your decision making,

deb m

This is the strategy I/we took- basically if I would have started having major issues with the chemo, I would have just stopped it cold. Originally we were thinking 8 cycles, but after the IDEA trial data came out this summer (about a week before I started), both oncologists, one at a major cancer center and one local, were fine with shooting for 6 cycles of Folfox. This was after chemoradiation prior to surgery (rectal cancer; took xeloda pills). I'm also MSI-High, so the effectiveness of the 5-fu was likely really low; the oxy was the main reason to do the chemo since it's an immune system modulator and could have some positive effects. If I started having issues with it, we would have just stopped since the 5-fu does not do anything with MSI-High and for the other reasons I mentioned above. I ended up doing all 6 and not having any issues with chemobrain, heart stuff, etc.- neuropathy in my feet (pins and needles tingles) and a few fingertips set in pretty good about a month afterward and over the last month or so I've also developed tinnitus, which I suspect is related to the chemo. Overall even though I had low risk factors all around, I figured why not- did not want to look back and wish I had done it if a recurrence occurred.

Find out whether you are MSS or MSI-H; if high, doing the Xeloda (5-fu) is probably not going to be useful since MSI-H tumors don't respond to it alone (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4901118/)

love3 wrote:I'm curious as to why your oncologist did not give you the option of 3 months of chemotherapy. It's my understanding this has become the new protocol for Stage III colon cancer so I don't know why this wouldn't be true for Stage II.

I am in the UK, so it's possible it hasn't been adopted here yet. I did wonder this myself after finding a few references to 3-month chemo cycles during my (limited) research, but they all seemed to apply to IV 5-FU so I didn't question it.

I suppose if that is the case then I could always start the course as others have suggested, and based on the side effects, re-evaluate at 3 months and know there's the possibility of some benefit.

rockhound wrote:This is the strategy I/we took- basically if I would have started having major issues with the chemo, I would have just stopped it cold. Originally we were thinking 8 cycles, but after the IDEA trial data came out this summer (about a week before I started), both oncologists, one at a major cancer center and one local, were fine with shooting for 6 cycles of Folfox. This was after chemoradiation prior to surgery (rectal cancer; took xeloda pills). I'm also MSI-High, so the effectiveness of the 5-fu was likely really low; the oxy was the main reason to do the chemo since it's an immune system modulator and could have some positive effects. If I started having issues with it, we would have just stopped since the 5-fu does not do anything with MSI-High and for the other reasons I mentioned above. I ended up doing all 6 and not having any issues with chemobrain, heart stuff, etc.- neuropathy in my feet (pins and needles tingles) and a few fingertips set in pretty good about a month afterward and over the last month or so I've also developed tinnitus, which I suspect is related to the chemo. Overall even though I had low risk factors all around, I figured why not- did not want to look back and wish I had done it if a recurrence occurred.

Find out whether you are MSS or MSI-H; if high, doing the Xeloda (5-fu) is probably not going to be useful since MSI-H tumors don't respond to it alone (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4901118/)

That's interesting that you still had chemo despite being MSI-H. I am MSS... my pathology was delayed coming back while they tested for it, as they would not even have referred me to oncology if I was MSI-H. Although obviously rectal cancer may be quite different.

Tinnitus is one concern since I do have that mildly already and don't want it to get worse, but I wonder if that might be the oxy? It's not listed on the side effects they gave me so I'm going to try and not worry about that or let it impact my decision.

sandkeeper wrote:

rockhound wrote:This is the strategy I/we took- basically if I would have started having major issues with the chemo, I would have just stopped it cold. Originally we were thinking 8 cycles, but after the IDEA trial data came out this summer (about a week before I started), both oncologists, one at a major cancer center and one local, were fine with shooting for 6 cycles of Folfox. This was after chemoradiation prior to surgery (rectal cancer; took xeloda pills). I'm also MSI-High, so the effectiveness of the 5-fu was likely really low; the oxy was the main reason to do the chemo since it's an immune system modulator and could have some positive effects. If I started having issues with it, we would have just stopped since the 5-fu does not do anything with MSI-High and for the other reasons I mentioned above. I ended up doing all 6 and not having any issues with chemobrain, heart stuff, etc.- neuropathy in my feet (pins and needles tingles) and a few fingertips set in pretty good about a month afterward and over the last month or so I've also developed tinnitus, which I suspect is related to the chemo. Overall even though I had low risk factors all around, I figured why not- did not want to look back and wish I had done it if a recurrence occurred.

Find out whether you are MSS or MSI-H; if high, doing the Xeloda (5-fu) is probably not going to be useful since MSI-H tumors don't respond to it alone (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4901118/)

That's interesting that you still had chemo despite being MSI-H. I am MSS... my pathology was delayed coming back while they tested for it, as they would not even have referred me to oncology if I was MSI-H. Although obviously rectal cancer may be quite different.

Tinnitus is one concern since I do have that mildly already and don't want it to get worse, but I wonder if that might be the oxy? It's not listed on the side effects they gave me so I'm going to try and not worry about that or let it impact my decision.

If you are on just Xeloda, you will not have oxy. I have Tinnitus too and did not have a problem.

I'm a IIIB and geting an infusion of Oxaliplatin right now. I'd just like to comment that I had minimal side-effects from Xeloda in Neo-Adjuvant Chemo. Basically a little fatigue, and lowered RBCs and WBCs. So I could only play 50 minutes of hard tennis before exhaustion. But I worked full-time and did lots of walking and some running while on Xeloda and Radiation. I think that it helps if you are young and in physically good shape. I've heard of people that have had a lot of problems with Xeloda/5FU and also from people that had minimal side-effects. You could give it a try to see how it affects you and modify the dose if it's a problem.
The experts are debating the issue so it's obviously a difficult decision.

sandkeeper wrote:

rockhound wrote:This is the strategy I/we took- basically if I would have started having major issues with the chemo, I would have just stopped it cold. Originally we were thinking 8 cycles, but after the IDEA trial data came out this summer (about a week before I started), both oncologists, one at a major cancer center and one local, were fine with shooting for 6 cycles of Folfox. This was after chemoradiation prior to surgery (rectal cancer; took xeloda pills). I'm also MSI-High, so the effectiveness of the 5-fu was likely really low; the oxy was the main reason to do the chemo since it's an immune system modulator and could have some positive effects. If I started having issues with it, we would have just stopped since the 5-fu does not do anything with MSI-High and for the other reasons I mentioned above. I ended up doing all 6 and not having any issues with chemobrain, heart stuff, etc.- neuropathy in my feet (pins and needles tingles) and a few fingertips set in pretty good about a month afterward and over the last month or so I've also developed tinnitus, which I suspect is related to the chemo. Overall even though I had low risk factors all around, I figured why not- did not want to look back and wish I had done it if a recurrence occurred.

Find out whether you are MSS or MSI-H; if high, doing the Xeloda (5-fu) is probably not going to be useful since MSI-H tumors don't respond to it alone (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4901118/)

That's interesting that you still had chemo despite being MSI-H. I am MSS... my pathology was delayed coming back while they tested for it, as they would not even have referred me to oncology if I was MSI-H. Although obviously rectal cancer may be quite different.

Tinnitus is one concern since I do have that mildly already and don't want it to get worse, but I wonder if that might be the oxy? It's not listed on the side effects they gave me so I'm going to try and not worry about that or let it impact my decision.

My oncologist talked to others about Lynch, my situation, etc. at the ASCO meeting where the 3 vs 6 mo. study was presented and they all agreed that Folfox was the way to go, mostly because I still would benefit from the oxaliplatin (4%? 2%? more reduction; no way to really tell) and it does work better in conjunction with 5FU. His take is that in probably 5 yrs (or even less perhaps) everyone that is MSI-H would be treated with immunotherapy as a first-line. Right now there is just not enough data to justify that, so they are being conservative and going with the U.S. standard of care. I don't know if the tinnitus was caused by the chemo, but I never had it before or during treatment, but it kind of popped up over the last month. I've read that oxy can cause it occasionally, but I also have listed to lots and lots of music via earphones and am getting older!