neuropathy

pandagypsy

I am on carboplatin/taxol and have been experiencing really bad neuropathy in my hands and feet/legs; especially in my hands.....can't grip things, dropping things, pain and them numbness.  As my doctor knows I am not anxious to add to my "draw full of pills" she suggested trying a neuropathy cream for diabetics.  Has anyone tried this?  Any luck? I had also read that neuropathy is a sign of toxicity to the chemo........true?

Linda

soul-mate

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

Hello Linda

Peripheral neuropathy is a common side effect of chemo. In my case when after 3 rounds of Carbo / Taxol neuropathy became bad, for the following 4 rounds at my request ONC reduced Taxol dosage by 20%. I also asked to wear ice socks and hold a metal thermos filled with ice during IV infusions. 3 x 300mg daily Gabapentin helped in the beginning but then stopped working. I didn't try any diabetic creams.

Now, 2.5 year after finishing chemo my neuropathy progressed from pins and needles and numbness to pain and is irreversible. I know that for some people it goes away by itself, just not for me. I hope you will be one of the lucky ones.

Lisa 00

neuropathy progression

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

Lisa 00 said:

neuropathy progression

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 

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.

ovarian_support

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.

B-12

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

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.

Alexandra

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.

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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pandagypsy

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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that's it!

Yes, that is the one I bought at Walmart........it sells in FLA for $13.00 and I use it at least once a day.........it has a bit of odor like ben gay (which gags my husband!) but is goes away quicker.  It doesn't completely eliminate the pain and "tingling" forever, but is a great relief......it also calms down the rash/alligator skin I get on my hands and arms....even tones down the angry redness.  I also use it on my feet and legs, even my knees are suffering.  I will stick with this for as long as I can in order to NOT take any more nasty drugs with side effects.

Linda

Alexandra

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!

 

(Content Removed by CSN Support Team)

2 more neuropathy treatments

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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pandagypsy

Alexandra said:

2 more neuropathy treatments

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

(Content Removed by CSN Support Team)

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

(Content Removed by CSN Support Team)

Thanks I will try these.  The

Thanks I will try these.  The cream I have been using is very soothing, but I find that I am taking a lot more pain pills now.....both for neuropathy and bone pain.  I have 2 more taxol treatments, finishing my last carbo this last Monday.  I am at the point that I am so tired of feeling so lousy and crabby all the time.  I feel like the STAY PUFF MARSHMALLOW MAN from Ghostbusters from the steroids.....can't help that I am craving sweets......D O N U T S as Homer would say. ARGH!  I am driving my husband crazy too at this point, he keeps reminding me 2 MORE WEEKS!!!!!!! I told him it's not fair that I am taking this all out on him he has been sooooooooooo supportive .....that is why I spend so much time at our community pool....I ususually have it all to myself and the floating around and letting my mind wander do wonders for me My sad but true solution at this stage of the game is to stay as medicated as I can til this is over (at least for this time, I am wondering how long THIS remission will last)

Linda

hward2012

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

Neuropathy / same treatment advanced Breast Cancer

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.

Dadio73

Neuropathy

Neuragen is the best out there. If you can find the 4 oz tube on ebay it works wonders. Had neuropathy before my treatment and it got worse. Neuragen saved my life.

     Dadio73

Dadio73

Neuropathy

I tried neuragen and it worked excellent for me.

  Dadio73