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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@dlmdinia

I discussed that in a prior post. The trial has not been completed as of yet as they are still recruiting volunteers. They are testing the supplement niagen which I believe is nicotinamide riboside. I myself did not see significant improvement, but I don't know if I received the supplement or the placebo. Two different oncologists told me at the time that they had other patients who were seeing good results. I just recently had to replace my oncologist who moved out of the area, and decided to go back to one of the oncologists involved in the trial even though she practices 50 miles away. We did not discuss the trial, but before I left, she suggested I try niagen. I did not question her further as I didn't want to ask questions she might not be allowed to answer with the trial ongoing. It's a double blind trial which means the doctors don't know who is getting the placebo. My best guess is that the doctor and I both think I was getting the placebo. Here's a link to the trial information.
https://clinicaltrials.gov/search?cond=Peripheral%20Neuropathy&term=Chemotherapy-Induced%20Peripheral%20Neuropathy&intr=Niagen&aggFilters=status:not%20rec

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This was published last year. May be trading one cancer for another?
‘ The dietary supplement nicotinamide riboside (NR) may increase the risk of developing a specific type of breast cancer and subsequent metastasis to the brain, according to a study from the University of Missouri (MU). The study authors noted this finding is in contrast to prior research linking the supplement to benefits related to cardiovascular, metabolic, and neurological health.’

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@myjiggers1

This was for the trial that was mentioned. I am wondering if it is successful with helping the neuropathy issues.

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I discussed that in a prior post. The trial has not been completed as of yet as they are still recruiting volunteers. They are testing the supplement niagen which I believe is nicotinamide riboside. I myself did not see significant improvement, but I don't know if I received the supplement or the placebo. Two different oncologists told me at the time that they had other patients who were seeing good results. I just recently had to replace my oncologist who moved out of the area, and decided to go back to one of the oncologists involved in the trial even though she practices 50 miles away. We did not discuss the trial, but before I left, she suggested I try niagen. I did not question her further as I didn't want to ask questions she might not be allowed to answer with the trial ongoing. It's a double blind trial which means the doctors don't know who is getting the placebo. My best guess is that the doctor and I both think I was getting the placebo. Here's a link to the trial information.
https://clinicaltrials.gov/search?cond=Peripheral%20Neuropathy&term=Chemotherapy-Induced%20Peripheral%20Neuropathy&intr=Niagen&aggFilters=status:not%20rec

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I finished chemo last May and the neuropathy my mouth has resolved, but I still have it in my fingers and feet. The doctors I talk to say there is no cure. It should resolve on its own but can take a long time. Nerves grow back very slowly.

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@dlmdinia

I'm sorry. I'm not sure I understand your question unless you didn't read my first post as well.

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This was for the trial that was mentioned. I am wondering if it is successful with helping the neuropathy issues.

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I had minimal symptoms during treatment. The oxaliplatin was causing some numbness in my feet. I had an allergic reaction to the 11th treatment and stopped, but the neuropathy got worse afterwards. It's now been four months and I feel the symptoms are stable. I got an excellent benefit from the chemo so it seems like a small price to pay. I am able to carry out all activities of daily living and drive. I don't regret the chemo.

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@myjiggers1

I am curious to know if it helps… my oncologist has already prepared me for the effects and said if they become intolerable then we stop that part of treatment. I already have nerve issues, so I feel like it’s going to be a quick ride with that particular part of chemo. (Oxipalatin)

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I'm sorry. I'm not sure I understand your question unless you didn't read my first post as well.

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@dlmdinia

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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I am curious to know if it helps… my oncologist has already prepared me for the effects and said if they become intolerable then we stop that part of treatment. I already have nerve issues, so I feel like it’s going to be a quick ride with that particular part of chemo. (Oxipalatin)

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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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@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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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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