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!
My brain felt cloudier on the xeloda than the folfox and I had minor foot-hand, but I was way more tired and felt crappier on Folfox, esp. after I was unhooked from the pump. When that happened, It took a good 3-5 days to feel "normal" again and Sat after friday unhook day was always a waste. I never was nauseous, never had foot-hand issues, did have cold sensitivity, my blood counts all stayed normal, and walked a lot. Exercised fine through the xeloda also.