Remission and neuropathy

JanetRB4

JanetRB4

I have been in a state of remission for 3 months (altho my doctor hasn't used the word "remission.") Any care I think I need is up to me to call for an appointment; otherwise, I'm on my own. I was diagnosed with liver cancer (aka metastatic colon cancer) 2 years ago - went through 12 sessions of infusions before being switched over to the "chemo pill" which was described as being the same chemo that was in a pump I wore home for 48 hours after each infusion. I had a bad reaction the very first time I wore that pump home and they altered the dosage. After I was declared in remission after infusion #12 and a scan, I had my port flushed with the same chemo that was in the pump and and the pills that made me so ill. As a result, I continue to suffer from freezing numb fingers and feet, peeling nails, equilibrium problems, swollen ankles/feet, thinning hair, sinus problems and tiredness. It's the pits. Yet I have regained all lost weight and except for feeling frustrated plus the above aggravations, I am enjoying my freedom. My question is: do these neuropathy symptoms ever subside?? I'm excited over no cancer cells (for now) but wonder if this is something I will live with for whatever the rest of my life is? ANY comments are welcome and I apologize for the length of this message!!

BoulderSteve

I am almost two years past my last FOLFOX chemo treatment. When I had first finished FOLFOX, I kept asking my oncologist how long it was going to take for the neuropathy to go away. Initially he told me six months. Then at the six month point, he told me a year. Then at the year point, he told me that I might be stuck with the lingering neuropathy. Execpt for the neuropathy, the rest of the symptoms specific to the chemo pretty much ended during my first year post-chemo.

During FOLFOX, my neuropathy was limited to palms, fingers and entire sole of my foot. During the first year post-chemo, I regained feeling in my palms & fingers and the bottoms of my feet regained feeling from about the arch to the heel. Over the course of my second year post-chemo, the feeling in my feet has crept forward to the point that the numbness is only from the ball of the foot and up through the toes.

I'm not sure if I will be getting back the rest of my foot sensation, but I sort of figure that it beats the alternative of still having cancer! I will be two years NED this summer.

JanetRB4

Thank you so much for your comment and encouraging words. I was also on the FOLFOX plan. Felt really great later on after I stopped the chemo pills. Even tho' the neuropathy symptoms remained, they seemed to be lessening and then at my doctor's recommendation, I had my port flushed & wham -- everything got worse and I would swear it's due to the chemicals used for that. I guess I'm being impatient so will hang in there and you're so right -- it may not be fun but it's a heck of a lot better than having cancer! Best of luck to you, and I hope that you remain free of this ugly disease!! Thanks again for responding.

DD3

I haven't been online here in a long time. I'm am/was a caretaker for my wife who is 10 years out from CRC. She has battled neuropathy since the end of adjuvant chemo (FOLFOX). Mainly in her hands and feet. Pretty persistent but seems to have lessened over the years, but never went away. Cold days are the worst for her. This all being said, she runs and is very active and the neuropathy never slows her down. She takes Gabapentin (sp?) every day/twice a day and seems to help. I'll put it this way, if she misses a dose, she knows it.

Wife has just decided this will be a forever lasting side effect of oxyplatin (sp?). As I tell her "this could be worse in so many ways."

JanetRB4

I do appreciate your comments and I commend your wife for staying so active! I feel well but at this time am leery of walking on bumpy streets and have had to learn to slow down when I walk as I'm a bit "tippy" as I call it or top-heavy when I lean forward. I do hope that disappears!!! The hands and feet thing I can live with but I am a crafter and some days are very frustrating due to lack of feeling in my fingertips. I'm better in the mornings when I first wake up but once I get busy, the cold sets in and my fingers worsen. Fortunately, I have no pain so that's a plus. After reading comments here, I realize I'm expecting too much too soon so just have to stop my whining and be grateful I'm still here!! You mention you're the caregiver -- I wish my husband would have joined this group so he could have had some moral support during the difficult days. Don't know what I would have done without him!! Thanks again for responding plus the medicine suggestion. Here's to better days to come!