1. < Breast Cancer

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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freckle1 | @freckle1 | May 17 3:28pm
In reply to @dlmdinia "If you research this you'll find that credible sources indicate that chemo induced neuropathy can last..." + (show)
@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.

REPLY
tullynut | @tullynut | May 18 8:02am
In reply to @varsha08 "My neuropathy started immediately after the the first chemo but the oncologist kept saying it will..." + (show)
@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 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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1 reply
dlmdinia | @dlmdinia | May 18 10:19am
In reply to @varsha08 "My neuropathy started immediately after the the first chemo but the oncologist kept saying it will..." + (show)
@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 neglected to identify the drugs in my reply. They were Andriamycin and Cytoxin followed by Taxol.

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3 replies
varsha08 | @varsha08 | May 18 10:53am
In reply to @tullynut "I was on a pretty standard but strong regimen of chemotherapy for breast cancer pictures. I’m..." + (show)
@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.

Jump to this post

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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1 reply
varsha08 | @varsha08 | May 18 10:54am
In reply to @dlmdinia "I neglected to identify the drugs in my reply. They were Andriamycin and Cytoxin followed by..." + (show)
@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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Mentor
Chris, Volunteer Mentor | @auntieoakley | May 18 11:01am
In reply to @dlmdinia "I neglected to identify the drugs in my reply. They were Andriamycin and Cytoxin followed by..." + (show)
@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?

REPLY
launabess | @launabess | May 18 12:16pm
In reply to @dlmdinia "I neglected to identify the drugs in my reply. They were Andriamycin and Cytoxin followed by..." + (show)
@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.

REPLY
2 replies
gramma206 | @gramma206 | May 18 12:21pm
In reply to @varsha08 "My neuropathy started immediately after the the first chemo but the oncologist kept saying it will..." + (show)
@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 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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1 reply
tullynut | @tullynut | May 18 12:25pm
In reply to @varsha08 "Thanks Tullynut. My neuropathy also is not stopping me from doing anything I want to but..." + (show)
@varsha08

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!

Jump to this post

I did not have to continue with meds linked to neuropathy. It concerns me that I might be faced with the need for more treatments/ meds thagg to cause neuropathy. I would talk to them about alternative meds if there are any that don’t or are less likely to cause neuropathy.

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1 reply
gramma206 | @gramma206 | May 18 12:47pm
In reply to @launabess "I had the same drugs and same outcome. Been 10 years now and neuropathy has increased..." + (show)
@launabess

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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I'm sending you dozens of hugs! Your story is sad but helps me feel not so alone. My oncologist says no one ever gets such severe neuropathy from these drugs - except obviously I did. I use an infared mitten and foot socks every even for circulation boost.

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