Chemotherapy-induced neuropathy: What helps get rid of it?

Posted by taxlady @taxlady, Jan 31, 2023

I finished chemo April of 2022
I have neuropathy in my fingers and feet. It doesn’t seem to be going away. What are treatments I can do to help get rid of it.

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@momof3gals

Hi!
I am happy to be following you all with some similar stories of neuropathy trials and tribulations!
I was diagnosed with Pancreatic Ca July of 2021. I had twelve rounds of chemo (4 drugs) including oxaliplatin and 5-FU.
I also had 15 rounds of proton radiation along with oral chemo and lastly the Whipple procedure in May 2022.
I began to experience neuropathy symptoms probably after my 8th round. Doses were reduced but the neuropathy only got worse. It got substantially worse after my surgery, slightly better over last summer but increased in intensity after an emergency appendectomy in Dec of 22.
I have numbness, pins needles and stiffness in my feet and ankles, sometimes into my calves to the knee. Also I’m my fingers. I have tried gabapentin which really didn’t work and am now on Cymbalta which is not working. I was told that if after a year if you don’t see improvement it probably will never go away. Does anyone have experience with CIPN if so have you seen improvement after so much time? Thank you for anything that you can share.

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See a neurologist. I have had chemo-induced peripheral neuropathy for years. It has become worse over the years to the point I had it pretty much in my whole body. I went to a neurologist who did an EMG and Skin Biopsies. I was diagnosed with small fiber neuropathy. There is no cure. I take Cymbalta which helps with the worst of it. Also check out these websites - Winsantor.com; https://www.foundationforpn.org/; an https://pnhelp.org/.
Lots of information and support groups where you can learn about PN in general. Winsantor focuses on Chemo-induced Peripheral Neuropathy.

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I developed progressive peripheral neuropathy after treatment for small cell lung cancer. I was told by the oncologist that these symptoms resolve after completion of treatment. It’s been a year and my painless neuropathy has not improved and my proprioception and balance is getting worse. I would appreciate all and any suggestions

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@tymish17

I developed progressive peripheral neuropathy after treatment for small cell lung cancer. I was told by the oncologist that these symptoms resolve after completion of treatment. It’s been a year and my painless neuropathy has not improved and my proprioception and balance is getting worse. I would appreciate all and any suggestions

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Hi, glad to hear that your cancer is gone. Mine is too 🤗but the nerve pain has gotten progressively worse. It’s been 5 years since chemotherapy but 6 years since I was diagnosed with fibromyalgia. That’s a tricky condition…
Physical therapy, supplements added to my medication and I’m trucking on. I see a neurologist, GP and pain manager every 3 months. . We learn to count our blessings…get outside and take in life 🌅

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Hi @tymish17 and @wendyhobbie, I moved your messages to this existing discussion:
- Chemotherapy-induced neuropathy: What helps get rid of it? https://connect.mayoclinic.org/discussion/chemotherapy-induced-neuropathy/

I did this so you can read what is helping others and connect with members like you easily.

You might also be interested in more related discussions about neuropathy and managing side effects of cancer in the
- Cancer: Managing Symptoms support group https://connect.mayoclinic.org/group/cancer-managing-symptoms/

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@auntieoakley

I also have neuropathy from chemo. I believe from the original flavors of taxol, Adriamycin, Cytoxin. Then further irritated by the host of medications to follow. My solution to the ever increasing problem of how do I get to sleep with my feet on fire is the very opposite of @drcvs , I put my feet on an ice pack every night when I lay down with my book, when my feet are very cold, I go to sleep. I know it sounds ridiculous, but it works for me. Otherwise I lay there half of the night feeling like my feet should come with a fire warning label. 🙄I know they cannot repair the nerves, but this allows me to sleep and prepare for another full day of life.
So now we have hot water, and ice pack, any other tips out there?

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It’s been 5 years and I’m feet are “on fire “ at night. I take 400ml magnesium glucinate twice a day now along with Alpha alipoic acid along with my meds and supplements. I still apply lidocaine ointment to the bottoms of my feet and get off them more frequently. And I gave up Diet Coke 🥳

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@wendyhobbie

It’s been 5 years and I’m feet are “on fire “ at night. I take 400ml magnesium glucinate twice a day now along with Alpha alipoic acid along with my meds and supplements. I still apply lidocaine ointment to the bottoms of my feet and get off them more frequently. And I gave up Diet Coke 🥳

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What I meant was that my feet are doing better…I switched from 600 gabepentine 3 times a day to 100 Lyrica 3 times.
Still feel neuropathy but better now. Still can’t wear anything binding on ankles but I just cut my socks off the top of my feet.

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In the summer of 2021 I participated in a clinical trial for chemo induced neuropathy. I've added a link to this trial at the bottom. Unfortunately it appears that recruiting volunteers has been a challenge, and therefore no final results are available yet. The study involves the use of the supplement nicotinamide riboside. I personally experienced no significant improvement, but I also don't know if I received the supplement or the placebo. Two oncologists with patients enrolled in the trial told me they were seeing positive results. I'm not advocating for or against. I'm just throwing this out there.
https://clinicaltrials.gov/search?cond=Peripheral%20Neuropathy&term=Chemotherapy-Induced%20Peripheral%20Neuropathy&intr=Niagen

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@dlmdinia

In the summer of 2021 I participated in a clinical trial for chemo induced neuropathy. I've added a link to this trial at the bottom. Unfortunately it appears that recruiting volunteers has been a challenge, and therefore no final results are available yet. The study involves the use of the supplement nicotinamide riboside. I personally experienced no significant improvement, but I also don't know if I received the supplement or the placebo. Two oncologists with patients enrolled in the trial told me they were seeing positive results. I'm not advocating for or against. I'm just throwing this out there.
https://clinicaltrials.gov/search?cond=Peripheral%20Neuropathy&term=Chemotherapy-Induced%20Peripheral%20Neuropathy&intr=Niagen

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Perhaps the reason there are so few volunteers is because onco’s don’t think neuropathy symptoms don’t need attention and therefore don’t refer them to this trial? As if ‘side effects of chemo are part of having cancer’-. As was the case with ‘us’. Please, people, ask for help and if you don’t get help, find someone else-.

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I had 2 oncologists fail to diagnose my neuropathy. I self-diagnosed by comparing my symptoms on a cancer center's website. That diagnosis was confirmed when I joined the clinical trial. I only learned of this trial when a friend spotted an ad in the newspaper.

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