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

Interested in more discussions like this? Go to the Cancer: Managing Symptoms Support Group.

gardiner | @gardiner | Dec 14, 2021

Thanks for your outstanding response.
I’ve had 23 cycles.
My oncologist told me about the dose-threshold effect and asked if I wanted to reduce my bortezomib dosage. My neuropathy seems to be stable and not too annoying, so I’m sticking with my current dosage.

Colleen Young, Connect Director | @colleenyoung | Dec 14, 2021

In reply to @gardiner "Thanks for your outstanding response. I’ve had 23 cycles. My oncologist told me about the dose-threshold..." + (show)

Did they say that the neuropathy lessens or disappears once treatment is over?

jldavis823 | @jldavis823 | Dec 15, 2021

In reply to @colleenyoung "Did they say that the neuropathy lessens or disappears once treatment is over?" + (show)

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.”

Colleen Young, Connect Director | @colleenyoung | Dec 21, 2021

In reply to @jldavis823 "In my case my neuropathy was in both hands and feet and did not lessen after..." + (show)

@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.

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)

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.

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)

What is PQQ?

Colleen Young, Connect Director | @colleenyoung | Dec 22, 2021

In reply to @d13 "What is PQQ?" + (show)

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