Chemo-induced Peripheral Neuropathy and Breast Cancer

Hi @auntieoakley ,
The cold laser was painless, the laser is on your skin for I think 15 seconds, it has been two years. I did it twice a week for 4 weeks. I had a huge allergic reaction (I had a very bad day after eating the wrong food), and my system did not recover easily, and redid the laser treatment, I also started the IVig which was its own level of he'll.
Two years later...having more bad days and finally out of my 2cnd boot (I had broke the first, and was in the boot for 6 months), my calves needed love. The shock wave was used to help the residual knots. It was great! My neuropathy went down at least 3 levels. Not the intention but, happiness!

Sounds like a really painful journey but I might look into shock wave therapy.

The cold laser therapy is to stimulate nerve growth. The shock wave is a way to increase blood flow to the muscles. Happy less inflamed muscles lead to happier nerves.

I also have chemo-induced peripheral neuropathy. I had Ovarian Cancer in 200, 2011, and 2015. I only had some small issues until 2016 when my last chemo was over - I developed neuropathy in my face. I thought, yep. In January of 2021 after taking my first COVID vaccine the neuropathy literally "blew up" in my whole body. I couldn't sleep and lost 15 pounds. I spent a year and over 50 doctor visits until I was given a referral to a neurologist in Dec 2021. I had an EMG (for large nerve fibers) and a small nerve fiber biopsy and was diagnosed with Small Nerve Fiber Neuropathy. I began taking Cymbalta which has helped with the waist up neuropathy but does not address the knee down neuropathy. Increasing Cymbalta had no effect so I stay on 20mg. Consider getting a referral to a neurologist to be sure if it is Large or Small Nerve Fiber neuropathy. There is no cure, but there are medications as well as Alpha Lipoic Acid, B12 and Vitamin D that may help. It is important to know the neuropathy type. Two excellent sites are https://www.foundationforpn.org/ and https://pnhelp.org/ have a lot of info and support groups that meet on ZOOM.

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

Where are you doing the trials?

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.

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?

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.