Neuropathy from previous chemo

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!

@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.

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.

Hello , I was wondering what drug was used in your treatment . I too have long duration neuropathy in my feet . I am now needing chemo . Claims are that F5u and capsi—-something or other , used together or alone are low risk for more damage . It is the oxipilantin , FOLFOX , all the OX ones are hard on the nerves . That’s my understanding . Newly diagnosed . Don’t see my oncologist until thurs.

Talk to your oncologist about possible actions during chemo that may help to mitigate Neuropathy, whether drug options or other means.

I had lung cancer 9 years ago and carbo/taxol gave me neuropathy in my feet instantly after my first full dose. I believe it's the taxol that did it! I'm also type 2 diabetic, but it's controlled. I do not take any of the seizures drugs the doctors keep pushing. I believe gabapentin and drugs like it actually kill your nerves. I want mine to heal, not die. I take vitamins, exercise my toes, and keep them warm. I still work 40 hours a week as a medical transporter and no one would know I have problems with my feet .

So you don’t want to answer my question ? Of course I’m going to talk with my oncologist. I was looking for answers from patients not doctors . That’s why I’m here .

Thank you very much for your answer . I was diagnosed with neuropathy 15 yrs ago .Alcohol suspected . Have been on 1800 a day gabapentin and 60 duloxetine daily for about a year .Kinda works . Feet still numb but no pain . I’m afraid to do chemo and be crippled . If you know what I mean 🙂 . I am sorry to hear about your neuropathy and I hope your cancer has been addressed . I was trying to find someone who started with neuropathy and had chemo . Using only Fu5 and radiation. Maybe gain some insight into what to expect . As I am recently diagnosed with advanced stage III rectal cancer . And don’t have a lot of options . Well , thanks for your answer and God bless

Yes, chemo causes neuropathy. Unfortunately, before you receive it the doctors tell you may feel some tingling but not to worry it will eventually go away. That is a blatant lie. There are so many of us out there that have had our lives destroyed by this illness caused from chemo! I’m one of the many.

Just to add to my previous comment. I have been dealing with this for five years. I’m on pregabalin at night only. It does nothing for the tingling and numbness that is now taking over my body. I refuse to take anything during the day because I would be asleep most of my life on this drug. There is no help out there yet for this. There is help if you have pain but nothing stops the tingling and numbness.