Need hope: Neuropathy from chemo

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

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

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

What is PQQ?

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.

@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.

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.”

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

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.

Gardiner,
Thanks for the further clarification. There are quite a few discussions about managing the side effect of peripheral neuropathy related to cancer treatments in the Cancer: Managing Symptoms support group here: https://connect.mayoclinic.org/group/cancer-managing-symptoms/

I'm moved your discussion to this existing discussion to connect you with additional members dealing with the same thing.

@gingerw and @gardiner, I found this interesting study about Bortezomib-induced painful neuropathy in patients with multiple myeloma (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3934028/).

"Painful neuropathy usually occurs within the first 5 cycles of treatment. When subsequent (more than 5) cycles are applied on a patient, there is only a slight tendency for enhancement in the incidence of neuropathy. This supports the opinion that the dose effect of bortezomib is much more associated with the dose-threshold effect (A threshold dose is a dose level below which there is no effect on the biological response.) than with the cumulative-dose effect (the total amount of a drug). The clinical and electrophysiological study performed by Stubblefied et al. pointed out that pre-existing damage involving the peripheral nervous system should also be considered as a risk factor in the susceptibility to bortezomib-induced neuropathy (BIN) in MM patients

In summary the authors emphasize that despite the high risk of BIN currently introduced algorithms of dose-limiting schedules have been successful in pain relief. This allows therapy to be continued, which results in a longer life span without deterioration of daily living for MM patients."

Gardiner, how many cycles of treatment have you had? Has your team talked about ways to reduce the effect of neuropathy?