Neuropathy

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Mina_Bird
Mina_Bird Member Posts: 10
edited November 2020 in Stage IV/Metastatic Breast Cancer ONLY

Has anyone developed neuropathy from their chemo (or other) treatments? Mine is quite significant, so I am hoping someone has recommendations as to how to reduce it (although I know that is difficult to do due to continuous chemo treatments). Also has anyone converted their cars to hand controls and how is it working out?

Any help is appreciated.

Vanessa


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  • wrenn
    wrenn Member Posts: 2,707
    edited November 2020

    I'm sorry you are having to deal with neuropathy. I have heard that Alpha Lipoic Acid has helped some people. Mine is worse if I have any fluid build up so I try to avoid salt but check with your doctor on both of those tips. I use a walker now and sit on it when I have to stand more than a couple of minutes in a line or waiting for elevator. I am ok driving.

    Hopefully someone will come along with more useful information for you here. Take care.

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  • Bestbird
    Bestbird Member Posts: 2,818
    edited November 2020

    I am sorry to hear that you're contending with neuropathy. Below from my book, "The Insider's Guide to Metastatic Breast Cancer" which is also available as a complimentary .pdf, is a list of mitigations that may help. For more information about the items in the list below, approved treatments, coping with side effects, and cutting-edge research, please visit https://www.insidersguidembc.com/about

    Therapies For Peripheral Neuropathy

    Remedies other than pain medications for peripheral neuropathy-induced pain include:

    Acupuncture

    Alpha-Lipoic Acid (ALA)

    Amino Acids

    Calmare Scrambler Therapy

    Capsaicin Cream

    Exercise

    Herbs

    Infrared Heating Pad

    Lidoderm Patches

    Massage

    Milkweed Balm

    Nerve Repair Optimizer

    Neuropathy Support Formula

    Physical Therapy

    Penetrex and other topicals

    Reiki

    Shoes that are Comfortable

    Topricin Pain Cream

    Transcutaneous Electrical Nerve Stimulation (TENS) unit


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  • Moderators
    Moderators Member Posts: 25,912
    edited November 2020

    Hi Mina_Bird,

    We're so sorry to hear you're managing this difficult side effect of treatment.

    In addition to the helpful advice our members have already shared, we'd suggest you check out the main Breastcancer.org site's page on Neuropathy, which offers some tips to help manage this effect.

    Also, we have a very helpful Podcast episode called Neuropathy: Causes and Treatments which you may find insightful.

    We hope this helps!

    --The Mods

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  • moth
    moth Member Posts: 4,800
    edited November 2020

    Mina_Bird, I'm icing my hands and feet during the chemo infusion and taking B6 (100 mg daily). I've had 23 taxols so far this year, the 24th will be starting in about 10min :)

    I've had very minimal neuropathy. Just mild bruised feeling in my nails on my hands, and cold sensitivity in my toes.

    L-glutamine is an amino acid (building block of protein) which can also help with neuropathy.

    Best wishes



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  • Mina_Bird
    Mina_Bird Member Posts: 10
    edited November 2020

    Thanks so much for your response. I have tried the Alpha Lipoic acid because it worked for one of my friends. It didn't do anything for me. Also completing almost 4 months of acupuncture because I had another friend whom this helped. After three sessions he could feel his feet for the first time after 3 visits. So this stuff is working for some people. All the best to you and thanks again for responding.



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  • Mina_Bird
    Mina_Bird Member Posts: 10
    edited November 2020

    That's so good to hear! It's funny, someone was telling me about someone icing their feet and hands and it helped a lot. I'm going to try it.


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  • moth
    moth Member Posts: 4,800
    edited November 2020

    btw, icing will not help the neuropathy you already have but can prevent it from getting worse & jeopardizing your ability to continue treatment. When I did taxol in 2018, I didn't ice at the beginning but at the first sign of tingling I started icing and it stopped the progression. Once I finished my 12 taxols it resolved within a few months. This time around, knowing I would need chemo indefinitely, I was super motivated to prevent so I iced right from the start. There's lots of info about icing on the taxol threads.

    Nerves can regenerate but they're extremely slow growing. They do respond to outside stimulation though so even things like massages or using the foot rollers might be helpful.

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