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Peripheral Neuropathy still exist after 17 months of last chemo

Posted by henfayp @henfayp, Sep 29, 2023

I had the Whipple Procedure and I finished my chemo 17 months ago, but I still suffer from peripheral neuropathy. Try acupuncture 3 times as suggested by my doctor, but no luck. Any advice?

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Mentor
John, Volunteer Mentor | @johnbishop | Sep 30, 2023

Hello @henfayp, Welcome to Connect. I'm sorry to hear that you developed neuropathy following your chemo treatments. There are a couple of discussions that you might find helpful:

--- Chemo-related Neuropathy: https://connect.mayoclinic.org/discussion/1st-time-at-mayo-for-neuropathy/
--- Need hope: Neuropathy from chemo: https://connect.mayoclinic.org/discussion/needshope/

You might also find this webinar from the Foundation for Peripheral Neuropathy helpful:
https://www.foundationforpn.org/webinar-chemo-induced-peripheral-neuropathy/.
Do you have pain with your peripheral neuropathy or is is just the numbness and tingling?

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1 reply
lvtexas | @lvtexas | Sep 30, 2023

B12 or vitamin B complex may help. Time does the rest.

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henfayp | @henfayp | Oct 1, 2023
In reply to @johnbishop "Hello @henfayp, Welcome to Connect. I'm sorry to hear that you developed neuropathy following your chemo..." + (show)
@johnbishop

Hello @henfayp, Welcome to Connect. I'm sorry to hear that you developed neuropathy following your chemo treatments. There are a couple of discussions that you might find helpful:

--- Chemo-related Neuropathy: https://connect.mayoclinic.org/discussion/1st-time-at-mayo-for-neuropathy/
--- Need hope: Neuropathy from chemo: https://connect.mayoclinic.org/discussion/needshope/

You might also find this webinar from the Foundation for Peripheral Neuropathy helpful:
https://www.foundationforpn.org/webinar-chemo-induced-peripheral-neuropathy/.
Do you have pain with your peripheral neuropathy or is is just the numbness and tingling?

Jump to this post

No pain, just numbness and tingling.

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stageivsurvivor | @stageivsurvivor | Oct 2, 2023

My peripheral neuropathy in the feet took 7.5 years to resolve. I had well over the standard of care 12 cycles of Folfirinox, doing 24 cycles of the original formulation used between 2012-2018. Some of its components were 20% higher and I had it at full concentration calculated for my body mass.

I massaged my feet at least twice a day to stimulate circadian to promote nerve regeneration. In warm weather, I found walking on warm beach sand and in cold weather warm water soaking was therapeutic. To deal with the discomfort I found the Rx medication gabapentin effective for my needs. It took a week to get a therapeutic level in the blood stream to feel results. I took it on and off for a year. The improvement in the neuropathy was very slow but steady and I reached a point where I no longer required it.

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2 replies
henfayp | @henfayp | Oct 2, 2023
In reply to @stageivsurvivor "My peripheral neuropathy in the feet took 7.5 years to resolve. I had well over the..." + (show)
@stageivsurvivor

My peripheral neuropathy in the feet took 7.5 years to resolve. I had well over the standard of care 12 cycles of Folfirinox, doing 24 cycles of the original formulation used between 2012-2018. Some of its components were 20% higher and I had it at full concentration calculated for my body mass.

I massaged my feet at least twice a day to stimulate circadian to promote nerve regeneration. In warm weather, I found walking on warm beach sand and in cold weather warm water soaking was therapeutic. To deal with the discomfort I found the Rx medication gabapentin effective for my needs. It took a week to get a therapeutic level in the blood stream to feel results. I took it on and off for a year. The improvement in the neuropathy was very slow but steady and I reached a point where I no longer required it.

Jump to this post

Thanks for the reply. Will try it.

REPLY
barbara333 | @barbara333 | Oct 3, 2023
In reply to @stageivsurvivor "My peripheral neuropathy in the feet took 7.5 years to resolve. I had well over the..." + (show)
@stageivsurvivor

My peripheral neuropathy in the feet took 7.5 years to resolve. I had well over the standard of care 12 cycles of Folfirinox, doing 24 cycles of the original formulation used between 2012-2018. Some of its components were 20% higher and I had it at full concentration calculated for my body mass.

I massaged my feet at least twice a day to stimulate circadian to promote nerve regeneration. In warm weather, I found walking on warm beach sand and in cold weather warm water soaking was therapeutic. To deal with the discomfort I found the Rx medication gabapentin effective for my needs. It took a week to get a therapeutic level in the blood stream to feel results. I took it on and off for a year. The improvement in the neuropathy was very slow but steady and I reached a point where I no longer required it.

Jump to this post

I am glad to know that you continued to improve. I am 17 months past my last dose of oxaliplatin and still have a loss of proprioception and decreased sensation in my extremities. Lots of numbness. I can ignore it when busy but still have muscle fatigue in my hands. They are continuing to improve, though slowly. I do take lots of supplements. I am in remission for a year with the chemo alone.

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