Neuropathy from previous chemo

Posted by gladysg @gladysg, Mar 29 7:43pm

Hi, I had some long-term neuropathy in my feet before doing a 3 month course (unrelated) of chemo in 2022. I have noticed a slow increase of neuropathy symptoms, especially in the last year and a half. I finally mentioned it to my PCP who referred me to a podiatrist. He says I need to see a neurologist but also told me he believes the increasing & new neuropathy symptoms are from the chemo. Just wondering if there are other folks out there who have experienced this? Thank you!

Interested in more discussions like this? Go to the Neuropathy Support Group.

kkw | @kkw | Mar 30 7:07am

My experience is the same. Received 2 rounds chemo in 2021 followed by Immunotherapy in 2022. Neuropathy mild after first chemo but has gradually worsened over time. Tried gabapentin which was useless for chemo neuropathy. Listened to a speaker on the Neuropathy website who is a doctor who has chemo neuropathy and he stated there is nothing at this time to reverse or stop the neuropathy. The numbness is moving up my legs now. I have not visited a neurologist. I have tried magnesium lotion, massage, etc. and read anything I can find for new ideas. Shoes that fit are important. Inserts that adjust your changing feet help a lot.

Choose to walk each day and stay positive. If I find anything that helps I will shout it out!

dlydailyhope | @dlydailyhope | Mar 30 7:24am

@gladysg
It would be good to see a neurologist for neuropathy blood testing, EMG/nerve conduction studies and small fiber neuropathy skin punch biopsy. Neuropathy is not necessarily curable but if there is something aggravating it (like diabetes, vitamin deficiencies or toxicities, drinking alcohol, etc.), you want to treat/address that.

Chemo is a toxin that fights cancer but also impacts healthy tissues. It may be good to see a nutritionist to see what you can do to optimize nutrition, reduce inflammation and toxins, and determine if supplements could help. Alpha Lipoic acid, Acetyl l carnitine, magnesium, vitamins b12 and d (if deficient), etc. may help you as well as nerve pain creams, lidocaine patches, icing, compression socks, etc.

projfan | @projfan | Mar 30 10:07am

Search for "drug-induced peripheral neuropathy" (for example: "Drug-Induced Peripheral Neuropathy: A Narrative Review" by Jones et al) and you'll find more about this. It's a very common side effect of chemo (although a very rare side effect for Zepbound/tirzepatide, which is what did it for me).

See if you can find an oncologist who is deeply knowledgeable about neurology or a neurologist who is deeply knowledgeable about cancer. In my case, I was erroneously diagnosed with MGUS for my peripheral neuropathy symptoms, which got me to a hematologist who was the go-to guy for their PN cases, which in turn got me to the final diagnosis.

If you have an oncologist or are also working with a palliative care practice, ask them for a recommendation for a specific physician to work with on the neuropathy. Presumably, the goal would be to find anything other than the chemo that might be making the symptoms worse (for example, inadequate B12 or too much B6) in order to slow the progression, and then to work on treating the symptoms.

There are a ton of suggestions on these blogs, all of which work for some people and not for others. For those of us with DIPN, though, we've got the added dimension of being really careful about how the stuff we are putting into our system interacts with the other stuff we are putting into our system. I'm personally very skittish about ingesting products that are not reviewed by the FDA or some organization that checks to see if what's on the label is actually in the package -- I tend to lean toward topicals, if I can. But that's just me.