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.
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.
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.
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
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.
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/)
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.
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.
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