neuropathy

Sorry to hear neuropathy set in,my wife had five carbo-taxol treatments and dr.changed her chemo to Gemzar ( gemcitabine ) . He indicated it was at a level of toxiticity that it would make chance of neuropathy irreversible if we continued. There is nothing that will cure neuropathy but it may go away in time, all that we were told the meds available are for pain management. Hope this helps and wish you the best ahead.

SOUL-Mate

Alexandra, you mentioned that your neuropathy has progressed.  I had carbo/taxol, six rounds 5+ years ago with no further chemo.  I feel that over the last few years that the neuropathy has gotten worse, especially in my feet.  And now I don't really have much feeling in most of my toes and the balls of the feet.  Am I imagining this, or does the neuropathy continue to worsen years after the initial chemo??  Will it continue to worsen???  You seem so knowledgeable, that I thought I would ask.  Thank you!

Lisa 

Alexandra said:

Lisa, I can only speak for myself

I didn't get neuropathy until 3rd round of chemo. Then for a few months it was the feeling of numb / tingly toes and 2 fingers on each hand. As time goes by it spread in a sock and glove pattern. For the last year I have strong burning and pains in the soles of my feet, that gets worse after long periods of inactivity or when I attempt wearing high heels. Even in the most comfortable flat shoes (Uggs, Merrills, Clarks, Mephistos) I can only walk up to half-hour.  My hands fall asleep a lot, but they don't bother me as much as feet.

I don't think you're imagining it. If you do content search for "neuropathy" on CSN, you will read hundreds of similar testimonials. In my opinion once nerves were severely damaged, they either don't regenerate at all or regenerate very slowly. Obviously I don't know if and when it will get better. Oncologists are definitely not interested in treating long-term chemo side effects. If you ask your GP he will probably prescribe you Gabapentin or Lyrica, which by themselves have nasty side effects. There's a Rebuilder device advertised to cure CIPN (chemo-induced peripheral neuropathy); it sounds too good to be true, but who knows...

PS. Ladies, if anyone wants a vast collection of designer stilettos in size 7.5 - it's your lucky day.

I'm not sure if it is the same mode of action, but when I developed a Vit B-12 deficiency it presented with memory problems, due to according to my doctor a regression in the nerves.  Under my doctors advice I took Vit B-12, B-6 and Folic Acid to raise my levels back to normal.  It took a couple of years for the nerves to grow back.  I don't know if would work for nerve damage due to chemotherapy, but it might be worth looking into

pandagypsy said:

neuropathy still getting worse

I have been using the diabetic neuropathy cream I found at Walmart, and it seems to prevent temporary relief.....it has gotten so bad that I resort to pain pills for the really bad times.  My doctor has been reducing my dose of Taxol as I complete the rest of treatment (woo hoo, 3 more treatments left.....first one carbo/taxol....last 2 just taxol.) Hope I can get thru this, I really don't want to take any more drugs, I have a drawer full already that I have to label "AM"....."PM"...."AM PM" ! Five years ago I had ovarian cancer treatments 6 mo carbo/cisplatin, then last 6 months change to Gemzar.  The neuropathy eventually went away then.

Which brand diabetic foot cream from Walmart are you using, MagniLife? I looked into it and apparently it's sold at Walmart, RiteAid and Walgreens and off amazon.com in US, but not in Canada. So before I start driving south towards Niagara Falls, I wanted to confirm with you. Thanks!

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Alexandra said:

Hi Pandagypsy

Which brand diabetic foot cream from Walmart are you using, MagniLife? I looked into it and apparently it's sold at Walmart, RiteAid and Walgreens and off amazon.com in US, but not in Canada. So before I start driving south towards Niagara Falls, I wanted to confirm with you. Thanks!

 

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Today I found two more neuropathy relief treatments at Walmart. Will test both and report.

1) Lakota Diabetic Foot Pain Cream is the only widely available natural source pain reliever for nerve pain related to diabetes. It features one of the few natural ingredients approved by Health Canada for the relief of pain associated with nerve damage due to diabetes. The soothing cream is made with Shea butter, Green tea extract, Peppermint oil, Sunflower oil, and Vitamin A and D to provide a silky smooth sensation. Lakota Diabetic Foot Pain Cream pampers the skin while relieving the pain. - $20 / 40 ml cream jar

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2) Neuragen is a non-prescription proprietary topical medication for temporary relief of nerve pain caused by a variety of conditions. Extensive use of Neuragen, including several controlled clinical trials, demonstrates its effectiveness as a topical analgesic which quickly relieves nerve pain, without troublesome side effects. - $27 / 5 ml oil bottle with dropper top

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soul-mate said:

Neuropathy

Sorry to hear neuropathy set in,my wife had five carbo-taxol treatments and dr.changed her chemo to Gemzar ( gemcitabine ) . He indicated it was at a level of toxiticity that it would make chance of neuropathy irreversible if we continued. There is nothing that will cure neuropathy but it may go away in time, all that we were told the meds available are for pain management. Hope this helps and wish you the best ahead.

SOUL-Mate

I had those same chemotherapies, Some six years later I still have perment Neuropathy in my lower and upper extremitie. It is a sign of toxicity or so I was told later, I've been on permenent Disiblity because the pain is so hard to deal with, my coordination has gotten better but I still have coordination problems, and last but not least, complete neuropathy of my bladder. I have had an inter stem surgicaly implanted so that I don't have to use cafeterias to use the bathroom. Please tell your dr to stop treating you with that drug. If I could go back in time I would have never taken it.

I tried neuragen and it worked excellent for me.

  Dadio73