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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@varsha08

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?

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I was on the same chemo drugs that have been used for decades 4 dose dense treatments with doxorubicin and cyclophosphamide. Second chemo is the one that caused "profoundly severe peripheral neuropathy " 12 weekly infusions of Pacitaxel aka Taxol.

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@dlmdinia

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

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I had the same drugs and same outcome. Been 10 years now and neuropathy has increased up my leg a little past the ankles. I can still do everything, but do use a vibrating machine every morning to bring blood into my feet, etc. Doctors should have told us this could be a side effect, but no mention. I too started noticing it from Taxol infusion and my doctor told me it would not stay with me. It has and is progressing.

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@dlmdinia

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

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I took the three together in one giant cocktail. I also started getting the neuropathy mostly in my feet soon after my third treatment. Then I was given more chemo with herceptin a year later and it really started. A host of cancer drugs and a few other issues and boom 20 years down the road I am having a slow progression of worsening neuropathy. I take the gabapentin only at night so I can get to sleep without my feet screaming at me, but if I take it in the daytime all I want to do is sleep.
Has your doctor given you anything that seems to help beyond just sedation?

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@dlmdinia

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

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Thanks for sharing!
Best always!

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@tullynut

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.

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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!

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@varsha08

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?

Jump to this post

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

REPLY
@varsha08

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?

Jump to this post

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.

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@dlmdinia

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.

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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.

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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.

REPLY

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?

REPLY
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