pdp497 wrote:I had not really been thinking about side effects and just looking toward treatment but now one day out I am getting anxious. What have your experiences been like what should I be looking out for on the unexpected side effect front? How effective has the treatment been for those of you out there that have been on it?
I tolerated FOLFOX well for the first couple of cycles, but the effects are cumulative and degenerative so in my experience the side effects got exponentially worse every cycle. I missed a solid two months of work over my six months of chemo. I felt horrible and guilty about how bad I felt, to the point where getting out of bed was a serious ordeal. My advice is to walk every day to help combat the worst of the fatigue. The neuropathy also sucks and remains with me to this day. Probably permanent too. The fatigue ranged from moderate at the beginning to severe by the end.
I ended up needing two blood and platelet transfusions (not common but possible if it affects your rbc count and platelets), a few white blood cell injections, and tons of marijuana to get through it. My nausea was so bad it felt like I was constantly on the verge of throwing up violently and after trying every single nausea medication (many of which are also used as anti-psychotics used to calm violent skitzophrenic episodes) my doctor could think of they just pointed me toward medical marijuana and honestly it is what let me get through treatment until Keytruda was FDA approved. Other people can probably testify to how much it can help nausea and other side effects of chemo. I couldn’t eat normally either due to persistent thrush (which actually led to my only chemo related hospitalization when it actually caussd an infection, and I learned that was a thing to worry about beyond the flu), no appetite (food became quite vile). Thrush made my mouth feel like it was constantly on fire.
Also, hate to scare you but Oxaliplatin almost killed me during infusion once. Most terrifying time of my life, throat closing up, losing consciousness and being revived and then told you had an allergic reaction but they caught it before cardiac arrest (woohoo). To make matters worse, to fix my reaction they decided to deliver the same amount of Oxaliplatin over nearly 8 hours and first douse me in antihistamines to combat the allergy. Sloan Kettering to their great credit tries hard to make long infusions tolerable by giving you a bed and a more private area than usual, but it is pretty crowded so often I would just be given a normal chemo chair for the whole time.
But don’t lose hope. I got through it and have been responding well to immunotherapy with keytruda. Every single tumor is more than 50% smaller than at diagnosis so far after 3 keytruda infusions. FOLFOX kept my primary rectal tumor stable and shrunk liver metastases a bit for six months so it did do something. Unfortunately my cancer spread to my peritoneum during this time and chemo can’t treat those tumors so my peritoneal carcinomatosis went from barely visible when I had liver surgery (aborted midway due to the extent of the peritoneal spread) to being a few inches big in like two months. I could feel the tumor in my abdomen even. Six weeks into immunotherapy doctor said he could no longer feel the abdominal tumor. Just got CT back: more than 60% and maybe more of it has regressed so far.
In conclusion, it sucks but if you have a plan moving past it as part of a curative treatment plan, I think it is worth it. Just my opinion but if it wasn’t adjuvant with surgery (that was the plan at least) I wouldn’t have done it. The suffering is too much if there is no light at the end of the tunnel. Just my anecdotal experience and opinion after having gone through it. Everyone is different, and I hope you will experience none of what I have.