peripheral neuropathy caused by Folfox chemotherapy

[WalterDisney]

Stage 3 colon cancer Resection 1 1/2 yr ago followed by 12 cycles of Folfox over 6 months Peripheral Neuropathy started in the first couple of cycles and following cycle 7 had to stop oxaliplatin component which causes peripheral neuropathy in some patients It has been 1 year since my last cycle and the peripheral neuropathy in my feet and hands continues with symptoms in my feet getting worse with ongoing tingling and sudden feeling of ice cold feet lasting for approximately 15 -30 minutes

My GP claims that there is no cure however there are drugs like gabapentin that mask the symptoms however I cannot tolerate these drugs Any recommendations would be greatly appreciated

[kewl1]

Hi Walter,

My chemo was 6 years ago , every two weeks for 6 months. On the second last chemo they cut the FU to 90% (big deal) and on the last one eliminated it. My feet are very numb and it even goes up my legs, the latter sometimes more than others. In my hands, I got most of the feeling back within a year. The feet have never improved at all and by now I am quite sure they never will. But everyone is different. My relative had the same thing and after 8 years had only a bit of numbness left in one foot. I'll be 75 in a month

[WalterDisney in reply to kewl1]

Thank you for sharing... it looks like you and I are following a similar path at the same age lol

Guess I'm going to have to live with it and be grateful to be on the right side of the grass

Wishing you well

[kewl1 in reply to WalterDisney]

Thnaks Walter. I know what you mean. I used to think little things like a hang nail bothered me. Now as I am about to turn 75 this month I have so many aches and pains that I just try not to think of them. I'm sure you will agree that getting older is no picnic but as you say, every night I thank God that I'm still on the right side of the grass. I have an increasing number of friends that no longer are.

[Collywobbles64]

Hi Walter, have had some good reports with going low carb, keto, ketovore or carnivore. Am trying it myself as the drugs never did anything for my PN. Look into Ken Berry, a doctor in the USA who has reversed a lot of his own problems. There are others, especially doctors and surgeons. Good luck Kay

[mariootsi]

I can't tolerate gabapentin either. I find it is difficult to find a doctor who can help relieve neuropathy. I wish you luck in finding good treatment.

[phebamom]

Multiple Myeloma with MGRS, meaning MM is attacking kidneys. Four months of Velcade in preparation for stem cell transplant, Completed treatment last week. Developing severe neuropathy, feet numb, hands numb with both heat and cold causing pain. Right upper leg in terrible pain. Age 68, female. I went through a lot of side-effects with chemo, but did not get depressed until the neuropathy. This is really hard to bear.

[WalterDisney in reply to phebamom]

Sorry to hear about your neuropathy however my oncologist advised that in most cases the neuropathy decreases over time however it can take up to a year after chemo for some Hopefully your symptoms will get better sooner than a year Be well

[phebamom in reply to WalterDisney]

From what I read symptoms get worse for two months after stopping chemo, then get better 60 percent of the time. I just don't know how I will find the strength now to undergo the stem cell transplant that is scheduled in two weeks. I hope you are right about it getting better. I did stop taking my sublingual b vitamins because of the B6 risk, and am investigating other nutrients that may help. Thanks.