Chemo-induced Peripheral Neuropathy and Breast Cancer

Posted by karendb @karendb, Feb 10, 2019

Hi. Karen here again. Since my last chemo treatment on dec 19th I've had terrible neuropathy in both hands and feet. Has anyone else had this and do you know how long it lasts?

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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.

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@cipnsue

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

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Where are you doing the trials?

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@icelander19

I still have neuropathy in my feet that has moved up into my legs. My chemo treatments were finished in May of 2019. So far, I have not been treated by a neurologist and my GP more or less said there is nothing much out there to help it. I am trying a CBD/THC cream at the moment which does seem to calm my feet down.

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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!

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

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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.

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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.

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@jfn

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!

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

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@auntieoakley

Mine has been a steady mild worsening for the last 19 years after taking TAC for breast cancer. About 7 years ago my doctor put me on low dose gabapentin at night. That dose has slowly been increased to 900 mg now. He says I can take 900 mg three times a day but I would sleep 24/7 . It does help a lot, I didn’t realize how much until I didn’t take it for a few weeks while caring for a relative last December.
I also put my feet on an ice pack a few times per day for 15 minutes. This just feels so good. 😂
@jfn can you tell us about cold laser therapy and shock wave therapy?

Jump to this post

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!

REPLY

Mine has been a steady mild worsening for the last 19 years after taking TAC for breast cancer. About 7 years ago my doctor put me on low dose gabapentin at night. That dose has slowly been increased to 900 mg now. He says I can take 900 mg three times a day but I would sleep 24/7 . It does help a lot, I didn’t realize how much until I didn’t take it for a few weeks while caring for a relative last December.
I also put my feet on an ice pack a few times per day for 15 minutes. This just feels so good. 😂
@jfn can you tell us about cold laser therapy and shock wave therapy?

REPLY

I still have neuropathy in my feet that has moved up into my legs. My chemo treatments were finished in May of 2019. So far, I have not been treated by a neurologist and my GP more or less said there is nothing much out there to help it. I am trying a CBD/THC cream at the moment which does seem to calm my feet down.

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