Still have neuropathy from Folfox/Oxy chemo

Robert2015

Hi, I am new to the forum, I was diagnosed Nov 2015 with a tumor in the rectum. Had 28 traditions, 6 weeks of 24/7 chemo, surg resection of tumor with temp illiostomy (for 12 weeks) then take down, then 12 sessions of Folfox/Oxy plus others that I don't remember currently.  I had many of challenges others have experienced and detailed here on the forum. I still have to manage my BMs with diet and OTC Immodium. I also have quit a bit of neuropathy in my feet...both have the feeling of numbness, similar to how your mouth would feel after visiting the dentist. Anyone else have any neuropathy from Oxy treatmen?

abrub

Yes.

I was told that it could take up to 2 years for neuropathy to subside IF IT WAS GOING TO DO SO.  After 2 years, it's likely permanent. I still have some neuropathy in my feet 9 years later. It isn't debilitating; acupressure insoles help tremendously.  I also have lost some of my fine motor skills.

Trubrit

Yes for me, also

I had treatment back in 2013 and still suffer from neuropathy in my lower legs, feet and fingertips. Its an odd feeling, and is not something that I am used to, even now. I can live with it though, as it does not hurt, and I am able to hike around with minimal problems. 

Welcome to the forum.  I hope you will recieve some comfort knowing that others here suffer as you do,

TRU

Tunadog

After my Oxaliplatin x Xeloda...

After my Oxaliplatin x Xeloda I got Neuropathy in my hands and feet, that was July 2016.

The Neuropathy in my hands is almost gone, my feet are lagging behind.

I can feel things getting better everyday.

Best of luck to you 

danker

Immodium

You may find LOMOTIL  more effective and easier to take than immodium.  Get a dx for it and give it a try.  Good Luck!!

JanJan63

It's been over two years

It's been over two years since I had the oxy and I still have neuropathy in my feet. Just the bottoms. It feels like walkig on a roguh surface. Mostly I don't even notice it anymore and it has improved over the past two years. It used to feel like they were asleep. Then I wnt through a period where they felt kind of prickly. I'm pretty much used to it now and it doesn't bother me.

Jan

Robert2015

Thanks!

to all of you who responded...glad I found this site!

MRSYBM

Has anyone tried alpha lipoic acid? My doctor told me to try it because I didn't want to take Gabapentin due to all the side affects. It's been a year and 4 months since my last treatment and my feet hurt terribly. I've found a gadget on Amazon that keeps my sheets & blanket off my feet in the bed so sleeping is better but I'm still in pain especially in the evening.

Pomona

My oncologist suggested both alpha lipoic acid and glutamine, which helped little bit. And I recently added lions mane mushroom powder. This seems to have made a bit more difference but its still early with this new combination.

iron9nadin

I know this was a post from 2017 originally.

If folks are finding this in 2025 and starting your folfox and oxaliplatin journey. I'd recommend icing hands and feet. I brought a soft sided cooler that my feet would fit in, two 1 gallon ziploc bags of ice, and two 1 quart ziploc bags of ice. The basic idea behind icing is to keep your extremities cooler so the meds don't go there and pool/hang out. Medicine will circulate where the warmth is and should be your core, so it pumps through your organs where cells would try to set in. Chewing on ice chips was also helpful for me. I had only a day or so of mouth/throat sensitivity to cool things when I did this. I didn't have the ice directly on my skin. I bought thin cotton gloves online, the kind you'd wear while you sleep if you needed a creme or lotion and didn't want to get it all on your sheets. Side note: I did remedy with udder balm on my hands over night, when I had itchy hands/palms (another treatment side effect), so the gloves came in handy. *I got a 10 or 12 pack on Amazon. I also wore socks on my feet when in the ice. I'd place my feet on the gallon zip lock and place a quart bag on my toes. I wore a light merino wool sock, where I could still feel the cold and I could tolerate for 20min or so. I'd hold a quart of ice in my hands as well. I started icing about 20min before the oxaliplatin IV started and kept icing the entire drip. I'd do 20min on 5 or so off and would suck on ice cubes throughout the whole trearment. My nurses were very against what I was doing, saying I was gonna make the pain worse.

I had 3 cycles and did it every time. Had very little side effects. My plan was to do radiation for 28 sessions and then 5 more rounds of chemo. When I got back to the chemo, I thought maybe I'd skip the ice and see how I felt. Glad I did so I was able to truly know how effective it was. I had days of cold sensitivity after the chemo. I got right back on the icing for the remainder of my treatments. I finished my chemo Feb 2025 and am happy to say no side effects remain. So thankful that I did was was right and true for me. Advocate for yourself and listen to your intuition. (I also fasted for my chemo treatments. I know that's not possible for everyone. It helped me with a lot of the other side effects of the chemo and meds and combated the compounding effects of the treatments over time. )

Wishing you all, all the best.

-Nadine

Pomona

https://csn.cancer.org/discussion/comment/1724226#Comment_1724226

I've realized the lions mane powder has helped quite a bit. I've skipped the lions mane for a few days and the neuropathy is more intense. Be glad I can get back of the lions mane in another day or two.

FYI, 2 potential negative aspects of the lions mane. It can cause your blood sugar to drop and can thin your blood. So please talk to all your doctors before you start taking. My oncologist did say if I were to have any surgeries, I'd need to stop the lions mane for 2 weeks prior.