Best department to get help for Chemo-related Neuropathy?

Posted by rob59, Robbie Hinton @rob59, May 30, 2019

What’s the best Department at Mayo Clinic to get started from for someone who suffers with neuropathy from chemo treatments? Suggestions...for a friend!

Interested in more discussions like this? Go to the Cancer: Managing Symptoms Support Group.

@johnbishop

Hi Robbie @rob59, welcome to Connect. Thanks for advocating for and helping your friend. There are a number of discussions on neuropathy but I think the following one might be the most helpful due to the number of members following the discussion.

> Groups > Neuropathy > Living with Neuropathy - Welcome to the group
-- https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

There are also some links here that may be helpful to learn more about chemotherapy induced neuropathy.

PubMed.gov -- Treatment of Chemotherapy-Induced Peripheral Neuropathy: Systematic Review and Recommendations
-- https://www.ncbi.nlm.nih.gov/pubmed/30508986

American Cancer Society - Peripheral Neuropathy
-- https://www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/peripheral-neuropathy.html

JAMA Network -- Chemotherapy-Induced Peripheral Neuropathy
-- https://jamanetwork.com/journals/jamaoncology/fullarticle/2726030

UpToDate -- Prevention and treatment of chemotherapy-induced peripheral neuropathy
-- https://www.uptodate.com/contents/prevention-and-treatment-of-chemotherapy-induced-peripheral-neuropathy

Doe your friend have any specific questions they are trying to get answered?

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I haven’t seen this on any of the Mayo Clinic sites. I developed severe neuropathy in my hands and feet after chemotherapy for breast cancer. I talked to doctors and looked online, but found no clear guidelines for relief. After trying for almost two and a half years with no improvement, I went researching again online. NIH had an article about supplement use, and mentioned studies but did not give clear guidance. But hearing about studies, I went digging again. I found a study by the Cleveland Clinic that got good results with 300 mg of CoQ10 and 20 mg of PQQ daily. I have been using this combination for a year now and things have improved dramatically. My finger tips no longer feel burnt, just a little numb. I cannot tell you the joy I felt when I took off my shoes and felt the floor for the first time. I still have pain in my feet, but much improved. The one symptom that doesn’t feel much better is the feeling of sand between my toes. My doctor had been monitoring my progress and is as pleased as I am. This may not work for everyone, and it’s definitely not an overnight cure, I can only say what it’s done for me. With Hope. Janet Davis

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@jldavis823

I haven’t seen this on any of the Mayo Clinic sites. I developed severe neuropathy in my hands and feet after chemotherapy for breast cancer. I talked to doctors and looked online, but found no clear guidelines for relief. After trying for almost two and a half years with no improvement, I went researching again online. NIH had an article about supplement use, and mentioned studies but did not give clear guidance. But hearing about studies, I went digging again. I found a study by the Cleveland Clinic that got good results with 300 mg of CoQ10 and 20 mg of PQQ daily. I have been using this combination for a year now and things have improved dramatically. My finger tips no longer feel burnt, just a little numb. I cannot tell you the joy I felt when I took off my shoes and felt the floor for the first time. I still have pain in my feet, but much improved. The one symptom that doesn’t feel much better is the feeling of sand between my toes. My doctor had been monitoring my progress and is as pleased as I am. This may not work for everyone, and it’s definitely not an overnight cure, I can only say what it’s done for me. With Hope. Janet Davis

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Thank you...................

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@jldavis823

I haven’t seen this on any of the Mayo Clinic sites. I developed severe neuropathy in my hands and feet after chemotherapy for breast cancer. I talked to doctors and looked online, but found no clear guidelines for relief. After trying for almost two and a half years with no improvement, I went researching again online. NIH had an article about supplement use, and mentioned studies but did not give clear guidance. But hearing about studies, I went digging again. I found a study by the Cleveland Clinic that got good results with 300 mg of CoQ10 and 20 mg of PQQ daily. I have been using this combination for a year now and things have improved dramatically. My finger tips no longer feel burnt, just a little numb. I cannot tell you the joy I felt when I took off my shoes and felt the floor for the first time. I still have pain in my feet, but much improved. The one symptom that doesn’t feel much better is the feeling of sand between my toes. My doctor had been monitoring my progress and is as pleased as I am. This may not work for everyone, and it’s definitely not an overnight cure, I can only say what it’s done for me. With Hope. Janet Davis

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Thanks for sharing.

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After a year and a half it was recommended that I try acupuncture for the neuropathy. I could tell a difference after the first session. I could feel my foot sliding into my sandals. Recommendation is for a session every two weeks. When I do that neuropathy is all but gone. But I can not always go that often so it comes back a little in between times. I am also going to give CoQ10 a try as you suggest.

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@jldavis823

I haven’t seen this on any of the Mayo Clinic sites. I developed severe neuropathy in my hands and feet after chemotherapy for breast cancer. I talked to doctors and looked online, but found no clear guidelines for relief. After trying for almost two and a half years with no improvement, I went researching again online. NIH had an article about supplement use, and mentioned studies but did not give clear guidance. But hearing about studies, I went digging again. I found a study by the Cleveland Clinic that got good results with 300 mg of CoQ10 and 20 mg of PQQ daily. I have been using this combination for a year now and things have improved dramatically. My finger tips no longer feel burnt, just a little numb. I cannot tell you the joy I felt when I took off my shoes and felt the floor for the first time. I still have pain in my feet, but much improved. The one symptom that doesn’t feel much better is the feeling of sand between my toes. My doctor had been monitoring my progress and is as pleased as I am. This may not work for everyone, and it’s definitely not an overnight cure, I can only say what it’s done for me. With Hope. Janet Davis

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Thank you so much for your advice! I too suffer from Neuropathy in my hands and feet (which I have not felt the bottoms for over a year!) I will definitely try the CoQ10 and can I ask what is PQQ? I apologize for my ignorance but much of this is new to me! I am currently receiving chemo treatments which "flare" up the Neuropathy so I would definitely wan to try your formula! Tahnks again!

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@jldavis823

I haven’t seen this on any of the Mayo Clinic sites. I developed severe neuropathy in my hands and feet after chemotherapy for breast cancer. I talked to doctors and looked online, but found no clear guidelines for relief. After trying for almost two and a half years with no improvement, I went researching again online. NIH had an article about supplement use, and mentioned studies but did not give clear guidance. But hearing about studies, I went digging again. I found a study by the Cleveland Clinic that got good results with 300 mg of CoQ10 and 20 mg of PQQ daily. I have been using this combination for a year now and things have improved dramatically. My finger tips no longer feel burnt, just a little numb. I cannot tell you the joy I felt when I took off my shoes and felt the floor for the first time. I still have pain in my feet, but much improved. The one symptom that doesn’t feel much better is the feeling of sand between my toes. My doctor had been monitoring my progress and is as pleased as I am. This may not work for everyone, and it’s definitely not an overnight cure, I can only say what it’s done for me. With Hope. Janet Davis

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Hello @jldavis823 and welcome to Mayo Clinic Connect. Thank you for joining the conversation and sharing your experience and outcome with members in terms of your personal experience.

Are you still participating in the study?

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@amandajro

Hello @jldavis823 and welcome to Mayo Clinic Connect. Thank you for joining the conversation and sharing your experience and outcome with members in terms of your personal experience.

Are you still participating in the study?

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Yes, I just haven’t been blogging

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@bruceoneill

Thank you so much for your advice! I too suffer from Neuropathy in my hands and feet (which I have not felt the bottoms for over a year!) I will definitely try the CoQ10 and can I ask what is PQQ? I apologize for my ignorance but much of this is new to me! I am currently receiving chemo treatments which "flare" up the Neuropathy so I would definitely wan to try your formula! Tahnks again!

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PQQ is a supplement that has been in use for other conditions. It is hard to find in most drugstores, so I order off Amazon (no kick backs here). I really hope it helps you. It’s not an instant cure, but I stayed with it when I first noticed how much better my hands felt. Feet take a little longer, but the results have been a steady improvement. I will continue with this regime until there is a verifiable cure.

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In reply to @growingpains "Thanks for sharing." + (show)
@growingpains

Thanks for sharing.

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Hello @growingpains and welcome to Mayo Clinic Connect. It looks like the information shared by @jldavis823 was helpful to you. Are you comfortable sharing your experience with neuropathy?

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@amandajro

Hello @growingpains and welcome to Mayo Clinic Connect. It looks like the information shared by @jldavis823 was helpful to you. Are you comfortable sharing your experience with neuropathy?

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Thanks,@amandajro. This is a very friendly and helpful venue. One of my family members experienced moderate discomfort with hands and feet while going through chemo. We are trying to find any viable solutions to address the pains. Again thanks for sharing, @jldavis823

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