Chemo-induced Peripheral Neuropathy and Breast Cancer

Thanks Tullynut.
My neuropathy also is not stopping me from doing anything I want to but I am only concerned that it’s progressing. My targeted therapy is also for life so I just wonder if it started with chemo and progressing with targeted therapy!
Thanks for your reply. Happy for you that you are able to live nearly normal life! Best always!

I neglected to identify the drugs in my reply. They were Andriamycin and Cytoxin followed by Taxol.

I was on a pretty standard but strong regimen of chemotherapy for breast cancer pictures. I’m at the five year mark so I can’t remember the specific names. Like you, after the very first injection, I had neuropathy in my toes and fingers. It did not go away and I think they said there was a possibility it might going forward. I tried things like icing, etc., but the neuropathy did not go away. At the very starts it was painful, it is no longer painful, but I do have some degree of numbness in my fingertips and some degree of numbness in my toes. It doesn’t really stop me from doing anything, but I am pretty much always aware that it is there. I don’t think I have as much dexterity and picking up tiny little pieces of things with my fingers . Hope that helps.

Same here after nearly three years. I tried acupuncture but that didn't work. Doctors have no way of knowing who will get permanent CIPN. Important to work on peripheral vision, leg strength and balance - I have a wobble board that helps with balance. But it seems that once those nerves have been killed off, they don't recover.

If you research this you'll find that credible sources indicate that chemo induced neuropathy can last months, years or even be permanent. I first experienced symptoms just weeks into treatment in 2020 but didn't know the cause. Two oncologists failed to even diagnose it. In 2021 I participated in a clinical trial for CIPN. Either I got the placebo or it didn't work for me. Results not yet published. Four years later I still have it. An oncologist told me during the trial that symptoms improved mostly during the first year. Most of the pain disappeared during that time, but I'm left with numbness and balance issues.

My neuropathy started immediately after the the first chemo but the oncologist kept saying it will go away after we stop the chemos. After the six chemos they continued with targeted therapy. I tried every possible drug like gabapentin etc but nothing worked. My neuropathy also kept progressing. My oncologist is not able to explain why it’s not gone and in fact progressing.
I am still on 3 weekly infusion of PHESGO.
Can you share what drugs they used for your chemos?

You would have to look at their site or at https://classic.clinicaltrials.gov/ct2/show/NCT04005287.
Winsantor says: We are currently in Phase 2 in several sites in Canada for WST-057 in patients with diabetic peripheral neuropathy. These sites are run by several of the leading research clinicians in the field who all are considered top key opinion leaders in the field of diabetic peripheral neuropathy.

Where are you doing the trials?

I feel we are both "in the same boat". I have an initial appointment with a neurologist & will report findings. Wishing us Both good luck!

Winsantor https://winsantor.com/ is focused on chemo-induced peripheral neuropathy, has good info, and is doing clinical trials.