Neuropathy with FOLFOX chemotherapy - Stage Three colon cancer

I had FOLFOX6 and shortly after starting they dropped the OX (oxaliplatin) because of severe side effects. I had some, but not severe neuropathy - mine was mainly numbness and tingling in fingers, hands, feet and the mouth. Had some dizziness as well. Voice, hearing, vision and sense of taste can be impacted. Anything in which the nervous system is involved can be messed up.

I did not have severe pain, so I didn't take Gabapentin as suggested. I'm approaching 2 years after I ended chemo and still have some minor numbness and tingling remaining.

I saw a reference that it takes between 1 and 2 months to recover from each month of chemo, which seems correct in my experience, but the source wasn't from a verified source like Mayo or Cleveland Clinic or Sloan-Kettering.

It was difficult for me to be patient with myself dealing with the post-chemo symptoms. There was so many things I struggled with. I also had cancer surgery/chemo/recovery during the time when COVID was spreading fast so I was not allowed to get out much until a year after I completed chemo - the thinking of my medical team was that my immune system wasn't at full strength.

All my best to you for success and full recovery.

A year after anterior bowel resection and 6 months of chemo, I still have constant numbness and tingling in my fingers and toes. I have been told it may never go away.
I am unsteady on my feet at times - especially during active pursuits - sailing in rough conditions or hiking with lots of climbing/descending. I have difficulty gripping with my fingers under the same conditions - pulling ropes, grabbing onto lifelines to steady myself, tree branches to help pull myself up a steep-ish slope.
On a more day-to-day life basis, I sometimes struggle with zippers and buttons, drop mugs or glasses and lose my balance when putting on shoes and boots while standing.
I have not found any of this hard to adjust to. Especially in light of my current cancer-free status. I view it more as a small price to pay, and just keep on doing as much as I can. You can too!😊👍 Wishing you only the best of the best outcome with your treatment xo

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.

Hi! Stage 3c! Same here! Colleen put it well! Everyone reacts differently. In my case the first treatment of Oxaliplatin gave me a burning sensation when they first injected it and they had to give me Benadryl to counteract it and slow down the speed of it. I had sensitive hands to cold and drinking anything cold for about a week felt like I was choking on ice cold slush and couldn’t breathe. After a week I was all good. Second round was awful. I was hopped up on antihistamines to prevent an allergic reaction because I was supposed to get iron as well which I react to and was out of it and almost sleeping but then they gave the push of 5FU and I all of a sudden couldn’t breath. Couldn’t walk, talk, everything in my body reacted. Had to give me something to open my airways and wheel me to my sisters car. Took 2 people to walk me from there. Again… about a week to recover. Little longer this time with the neuropathy. They did not give me the bolus to go home with. They said that Ox can induce anaphylactic shock so I will not be getting it again. I hope you don’t have severe issues! The 5FU also causes me awful yeast infections. To prevent that this round we were proactive and took fluconazole daily and I put hydrocortisone where my creases are and ate probiotics daily. It helped immensely this time. Good luck!

I would like to tell people…. After my 4 th round of OX. A nurse told me to put a heating pad on my arm once I got home. That REALLY helped with the arm tingling and aching. It was my fourth and final…… wish I knew this after my first OX infusion.

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..

Wife has stage 4 colon cancer and yes was told the same thing. May not affect you but it did her. Even water had to be room temp and the more cycles she had the worse it got/longer it lasted. We opted to not use OX in our second set of 6 so far due to the side effects.

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

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.

Yes. Almost all pts in my circle of chemo taking ox are warned throughout 7- month tx to stay away from cold ANYTHING!