1. < Cancer: Managing Symptoms

Need hope: Neuropathy from chemo

Posted by needshope78 @needshope78, Apr 24, 2020

Is there anyone going through neuropathy from chemo. If so how long until my mother will be able to walk again afterwards. It’s been 8 weeks every week gets worse

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kevin5555 | @kevin5555 | Apr 27, 2022

Was diagnosed with pancreatic cancer stage 4 back in 11/21. Since then I have completed 2 rounds of chemo. They are giving me abraxane
I was in so much pain that it took 10 days in the hospital to get me on a regiment which consists of 150 mg of fentanyl and 30mg of morphine every 4hrs.
I still have pain but bearable. My feet are getting really painful from the chemo. Is there anything else I can take to stop the pain in my toes and feet so I can at least walk.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 28, 2021
In reply to @pogo "Look into studies on the supplement L Carnatine it has show to be of use in..." + (show)
@pogo

Look into studies on the supplement L Carnatine it has show to be of use in mitigating neuropathy some what. Google carnatine neuropathy

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Hi Pogo,
I did a quick search for Acetyl-L-carnitine and I found this study.
- Acetyl-L-carnitine in painful peripheral neuropathy: a systematic review https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6498091/
Reviewing all data for acetyl-L-carnitine up to 2019, the researchers concluded "ALC is an effective and safe treatment in painful peripheral neuropathy, especially in diabetic patients. Future studies aiming to assess the duration of the therapeutic efficacy and the optimal dose in larger populations, possibly with longer follow-up periods, are required."

This article from Mayo Clinic explains in lay language:
- Diabetic neuropathy: Can dietary supplements help? https://www.mayoclinic.org/diseases-conditions/diabetic-neuropathy/in-depth/diabetic-neuropathy-and-dietary-supplements/art-20095406

Thanks!

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pogo | @pogo | Dec 27, 2021
In reply to @ncgal "Hello Needshope. You didn't mention what type of chemo your mom is on. How often does..." + (show)
@ncgal

Hello Needshope. You didn't mention what type of chemo your mom is on. How often does she take it. I started chemo for breast cancer this past April. Once a week for supposedly 12 weeks. However, it was cut short to 9 weeks because my neuropathy was getting so bad. I was cancer free and got to ring the bell last December, exactly 12 months after diagnosis. However, the neuropathy persists from my knees to my toes and in my fingers. I don't think I have it as bad as your mom if she can't walk. I have turned my ankles a couple of times until I found the right pair of shoes. I do have an appointment with the radiologist coming up so will see if that helps. My oncologist did tell me that with neuropathy each person is different, from it healing to long lasting effects. Wish I could be more helpful.

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Look into studies on the supplement L Carnatine it has show to be of use in mitigating neuropathy some what. Google carnatine neuropathy

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1 reply
pogo | @pogo | Dec 27, 2021

am not dealing with chemo induced neuropathy but research L Carnatine there are studies that show carnatine helps the neuropathy. Caution if you decide to try this amino acid but it from a reputable company ((not the corner drug or wally world.

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d13 | @d13 | Dec 22, 2021
In reply to @jldavis823 "PQQ is a supplement like CoQ10. It is uncommon and not all stores carry it. I..." + (show)
@jldavis823

PQQ is a supplement like CoQ10. It is uncommon and not all stores carry it. I get it on Amazon.

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Thank you, I really appreciate this information.

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d13 | @d13 | Dec 22, 2021
In reply to @colleenyoung "Good question. "PQQ stands for pyrroloquinoline quinone. It is sometimes called methoxatin, pyrroloquinoline quinone disodium salt,..." + (show)
@colleenyoung

Good question.
"PQQ stands for pyrroloquinoline quinone. It is sometimes called methoxatin, pyrroloquinoline quinone disodium salt, and a longevity vitamin. It is a compound made by bacteria and is found in fruits and vegetables."

D13, you can learn more in this article.
- What to Know About PQQ Supplements https://www.webmd.com/vitamins-and-supplements/what-to-know-about-pqq-supplements

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Thank you, so much for this information. I really appreciate you taking the time to get back with me.

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jldavis823 | @jldavis823 | Dec 22, 2021
In reply to @d13 "What is PQQ?" + (show)
@d13

What is PQQ?

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PQQ is a supplement like CoQ10. It is uncommon and not all stores carry it. I get it on Amazon.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 22, 2021
In reply to @d13 "What is PQQ?" + (show)
@d13

What is PQQ?

Jump to this post

Good question.
"PQQ stands for pyrroloquinoline quinone. It is sometimes called methoxatin, pyrroloquinoline quinone disodium salt, and a longevity vitamin. It is a compound made by bacteria and is found in fruits and vegetables."

D13, you can learn more in this article.
- What to Know About PQQ Supplements https://www.webmd.com/vitamins-and-supplements/what-to-know-about-pqq-supplements

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1 reply
d13 | @d13 | Dec 22, 2021
In reply to @jldavis823 "In my case my neuropathy was in both hands and feet and did not lessen after..." + (show)
@jldavis823

In my case my neuropathy was in both hands and feet and did not lessen after treatment was over. About a year after the end of Chemo I found a study by the Cleveland clinic that showed promise using supplements. I’ve been taking them faithfully since, with great effect. The pain started to lessen within days. I’m not neuropathy free even after a year, but the pain is almost gone. I’m still left with some numbness but the difference is remarkable. I can’t find the link to the study anymore, but I posted the following on the Mayo neuropathy board a few months ago. “ There is no medication for neuropathy but there are numerous studies using supplements. I read one from the Cleveland Clinic that showed good results and have been following their recommendation with good results. They recommend taking 400 mg of CoQ10 and 20 mg of PQQ daily. The neuropathy in my hands is completely gone and my feet are much improved. The majority of the pain in my feet is gone, but I still have numbness in some places. I started this a year after chemo. The hands showed improvement quickly, the feet were slower. But the worst of the pain was gone in 3-4 months. Not an overnight cure, but my pain is gone.”

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What is PQQ?

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2 replies
jldavis823 | @jldavis823 | Dec 21, 2021
In reply to @colleenyoung "@jldavis823, might you be referring to this multi-institution study? - Supplement Use and Chemotherapy-Induced Peripheral Neuropathy..." + (show)
@colleenyoung

@jldavis823, might you be referring to this multi-institution study?
- Supplement Use and Chemotherapy-Induced Peripheral Neuropathy in a Cooperative Group Trial (S0221): The DELCaP Study https://pubmed.ncbi.nlm.nih.gov/29546345/

It was conducted by several researchers from various institutions including Mayo Clinic, Cleveland Clinic, Roswell Park Cancer Institute, Massachusetts General Hospital and others.

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I started at the NIH site, which pointed me to the Cleveland Clinic’s study. This may be a build up off that. Thanks for finding this. The study I saw was only CC, and only CoQ10 and PQQ.

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