Need hope: Neuropathy from chemo

I don’t know where you live? However, I know there are clinics in the Metro (MN) who specialize in neuropathy. I would consult those. Mayo was never helpful with neuropathy in my experience-.

I had daily oral chemo, 2 persistent tumors primary in otherwise unremarkable liver. I developed hand and foot neuropathy. I was constantly cleaning glass and food off the floor with the "dropsies" . Forget making a phone call, I can laugh now, that is almost gone. My feet have a swelling of the bottom of both feet. No diabetes or heart disease or any other causes. I cannot walk some days. I put on weight from immobility issues. I can walk a bit now, it is painful to walk very long, fast, or far, but a walker helps. I can feel the tingling the day before I have "a good day " I ended chemo in 2018, my new skeptical doctor didn't call after my mri so I figured it was gone and sure enough, his report stated NED, unremarkable liver. I was told to figure 6 months for every year of cancer, and 5 years besides to overcome the side effects of chemo.

I had to take Capecitabine (Xeloda®) + Oxaliplatin. Both feet and hands are very sensitive to cold temperatures and unable to walk on tile or hard wood floors. Legs feel heavy when i try to cross my legs while laying down on bed and it gets stiff. Feet majority of the times feel like bending sand bags. Hands feel like i got tiny pebbles under my skin when i rub my hands together. I have pain when my legs get stiff and cold sensitivity.

@varg4258 and @mustang08, several members are talking about chemo-induced neuropathy in the Cancer: Managing Symptoms support group (https://connect.mayoclinic.org/group/cancer-managing-symptoms/)

Some chemo drugs like oxiliplatin are known to cause peripheral neuropathy. It is often temporary and can improve after you finish treatment. For some people, it can be long lasting. For my dad, they monitored his neuropathy closely because he also had type 2 diabetes, which can increase the risk of the neuropathy being permanent. After several rounds of chemo (5 I think), they reduced the amount of oxi in the drug combo to reduce the risk of the severity of neuropathy.

Varg, do you have pain with the neuropathy or numbness or both?

My hubby discontinued Oxiliplatin Nov 2022 and no relief yet. We’re afraid it’s irreversible

I have Peripheral Neuropathy on hand and feet from taking Chemo. Chemo treatment ended in 12/2022. What are the symptoms of Peripheral Neuropathy healing or getting worse? I read Neuropathy gets worse before the healing phase. Feet feels more stiff after the second session of Acupuncture. Squeezing feet and toe's feel like twisting sandbags. Please comment if you experienced Peripheral Neuropathy and no longer have it.

Hi I noticed you posted this comment a while ago I guess someone posted a reply today because it showed up for today. Well anyways how are you and your mother doing? I hope well.

My last chemo treatment was in November 2021 is now February 2023 I still have tingling and numbness in my feet I have read that it sometimes never goes away completely

I am also have neuropathy that seems to be getting worse instead of better. I did 6 months of 5fu and oxaliplatin. Now I'm on the 5fu and Irinetocan. While I was on the Oxaliplatin I didn't have much neuropathy, just a little tingling. The Dr. actually stopped it a little sooner than 6 months because my cold senstitivty was lasting the full 2 weeks between chemo treatments. A few weeks AFTER the drug was stopped, I started to get fairly severe neuropathy in my feet and eventually it extended to my hands. I also started to get a pulsing sensation in my lower legs and feet. It doesn't hurt. It's like a very low level pulse of electricity that hits both my left and right legs simultaneously...very weird! That has thankfully lessened in the last few weeks. I don't believe the fu or the Irinetocan are supposed to be causing this. If anybody knows of anything that can/should be done to reverse what's going on, I sure would appreciate the info. I try to walk a lot and am constantly massaging my feet and hands, but so far there's no improvement.

@cmdw2600, @ajh5285 and others - I'm not sure if you have seen this webinar from 2020 but thought it might be helpful.

-- Webinar: Chemo-Induced Peripheral Neuropathy: https://www.foundationforpn.org/webinar-chemo-induced-peripheral-neuropathy/