Neuropathy with FOLFOX chemotherapy - Stage Three colon cancer

Can we share our recent symptoms these days here @dalc ?
Your comments were helpful to me in the past. Anyone else, mentor comments welcome!

No help here where I live, eg ca support groups, interested MDs etc . Live altitude 9K ft in Ecuador Andes. I have continued with mareada and often very poor balance with lots more nerve pain or self dx CINP than last report in 2023. Positive news: I sleep well. Excellent diet. Overall excellent health.

Have pretty much given up finding answers and try to live with this misery. Stay very active, single, widow 5 years, 80 years . Today's date; 10/31/2025.

Please someone write back. Appreciate input very much! I may try pregabalin generic here... thanks.

I had oxaliplatin for stage 3 colon cancer three years ago
I developed feet neuropathy immediately after chemo.
I tried acupuncture ( no help), amitriptyline( no help) and pregabalin (Lyrica)
The pregabalin helps me have better stability and much less shooting pains . I take the generic pregabalin not the brand name Lyrica
Good luck

One week after my final Folfox session I came down with stabbing, burning pain along my waistline and lower back. I am on week 6 now with no relief. I tried gabapentin, acupuncture, and essential oils with no help. My doctor put up the white flag. Now was told to try lyrica but the side effects scare me. Has anyone tried cbd for pain? I do not know of anyone having the nerve pain in this location. Neither heat nor ice work either. Right now I take an oxicoden at night to sleep

Thanks for your comments. Pregabalin I have taken with mixed results. I will try massage and essential oils which
sounds soothing and may help. My neuropathy is mainly in legs / knees down and gentle massage can help some. Hands somewhat pins and needles , not as bad as feet, ankles and lower legs.

I had a similar experience but probably 5 years later...

It took a long time (like 2 years) post-chemo for most of the nervous system damage to heal and I still have some residual symptoms like neuropathy in the feet and numbness in the hands. In my case, it also affected my vision, hearing, balance and speaking besides the swallowing. Also am experiencing some potential dementia-like symptoms - don't know if the chemo-related or something else. Yes, there is something called "chemo brain"!
https://www.mayoclinic.org/diseases-conditions/chemo-brain/symptoms-causes/syc-20351060
I agree entirely with you about this: "It has been a wild ride, but I'm still in the game and God is so good." Amen!

I was diagnosed with Stage 3 Colon/rectal cancer in 2014. I am now cancer free and no longer
have to see my oncologist.
I had nerve damage from the Oxaliplatin in my hands and feet. The nerve damage in my hands got better but I still have nerve damage in my feet clear up to my ankles.
The chemo was awful...I couldn't drink anything cold and had to have gloves on to take
anything cold out of the refrigerator.
All I wanted was a cold glass of ice water and now that is all I want to drink. The nerve damage has now went on to become Peripheral Neuropathy and foot drop.
It has been a wild ride, but I'm still in the game and God is so good.

Has the doctor told anyone to wait at least five days after OX before drinking cold beverages or to also make sure you wear gloves if reaching in refrigerator? Avoid cold things..

Hi @sueb4bs, different people experience different levels of neuropathy with FOLFOX. For some people it is temporary, for others it is long term or even permanent. Because my dad had type 2 diabetes, they monitored his neuropathy symptoms closely and reduced the oxaliplatin amount. Oxaliplatin is known for causing neuropathy.

Has the doctor told anyone to wait at least five days after OX before drinking cold beverages or to also make sure you wear gloves if reaching in refrigerator? Avoid cold things..