Need hope: Neuropathy from chemo

@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?

Thanks.

That link was very helpful. Thanks for your care.

@gardiner Please let me add my welcome to Mayo Clinic connect!

Like you, I am going through chemo for multiple myeloma, and take Revlimid [linolidamide] on a 21 day on, 7 day off cycle. Dealing with neuropathy in my left calf and foot is a challenge, although my oncologist feels it is a result of the myeloma deposits on the nerves near my hip, rather than the chemo. It has been almost a year since I have had sensation in that area. There is a bit of feeling on the very outside of my left foot.

Sometimes rubbing CBD cream on the affected part helps as a topical solution. Also using compression socks seem to make things a bit better. And often at night, I do a self-massage of the area, to calm the nerves down, with a lavender scented lotion. Speaking to your oncologist or patient advocate may give you some insight, too, for remedies. Will you let me know what you find out? We're in this together!
Ginger

Hello @gardiner, I would like to add my welcome along with @colleenyoung and others. I also have neuropathy but mine is idiopathic small fiber neuropathy. I do sometimes get tingling in my left or right arm that I'm sure is ulnar nerve related but it normally only occurs when I'm sleeping on my side and it wakes my up so I have to roll over to the other side or on my back for relief. I'm wondering if you might find the following information from the Foundation for Peripheral Neuropathy helpful.

Managing & Coping with Neuropathy: https://www.foundationforpn.org/living-well/lifestyle/managing-peripheral-neuropathy/

Thank you for responding! I appreciate your concern.
The tingling (neuropathy) in my left am's ulnar nerve distribution is probably due to Velcade® (bortezomib) treatment for my multiple myeloma.