Neuropathy

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RE: Neuropathy

by maggiesue on Thu Apr 12, 2018 06:09 PM

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Hi I had peripheral neuropathy in both hands and feet after 6 doses of carboplatin back in 1997/8.  Mine did fade after time, but to begin with made some of the craft work I did impossible.  I found wearing 'crocs' shoes and Hotter shoes made a big improvement to my feet, and knitting every night for about 2 hours has helped my hands.  However after 3 ops 1997, 2010, and 2016 for granulosa ovarian cancer, I am finding it back again, and I think this is because I may have another gremlin in my abdomen.  I found it best to just try and ignore it.  Not easy I know but this was and is my way of coping.

RE: Neuropathy

by NYCSUSAN on Fri Apr 13, 2018 02:18 PM

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I had stage 3 tonsil cancer 35 rads/3 chemo cisplatin - about ten years ago at the age of 62.  I only felt a bit of heat in my fingers afterward - however, as time went on it developed into neuropathy in my hands and feet and other numb spots, especially on my back.  I could not get my onocologist to cop to it but so what, I had it regardless of origin.  After seeing a couple of neuros who only said they'd offer pain meds when the pain worsened - that was the end of western medicine's help.  I tried acupuncture and had a bit of relief but not much.

I heard about Alpha Lipoic Acid (essential fatty acid) from an article and gave it a try.  No cure but, oh my feet let me sleep after I started taking it.  My feet would ache at night.  Also, my toes seem more 'active' now.  It certainly is not a cure but I'll it surely helps.  I take 600 mg 2x a day.  I started with 1x to see how my body would react.  After about 6 months I quit and pow here comes the discomfort back. 

There is no cure - just good luck I guess.  I try to put it in perspective - if I didn't have neuropathy I'd probably be long gone, guess which I choose!

Good luck.

Susan C.

RE: Neuropathy

by ravensgirl62 on Sat Apr 14, 2018 06:22 AM

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I also have peripheral neuropathy from a 3 year chemo regimine. I have tried everything. I couldnt take gabipentin, it made me lose my memory something awful. I ended up taking an old remedy that works fairly well for me called Nortriptyline. Also, I came across this tip from my dad who has Parkinson's Disease and also has neuropathy. He takes a pain patch, lidocaine I believe, cuts it in half, and presses it under his toes and along the top part of the underside of his foot. Anything that sticks up around the toes, he just folds over so it stays over his baby toe. I tried this one night when my feet were killing me. I ended up leaving it on for 24 hours and my feet didnt bother me for almost a month! Miraculous!! I have never had anything work so well.. I hope you can get your hands on some of these and give it a try. The patches feel fairly thick and cold and wet but they are a Godsend for the pain. Hope it works for you!

Regards,

Wendy J. Shores

RE: Neuropathy

by MDyogi on Wed Jul 11, 2018 05:30 PM

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On Apr 13, 2018 2:18 PM NYCSUSAN wrote:

I had stage 3 tonsil cancer 35 rads/3 chemo cisplatin - about ten years ago at the age of 62.  I only felt a bit of heat in my fingers afterward - however, as time went on it developed into neuropathy in my hands and feet and other numb spots, especially on my back.  I could not get my onocologist to cop to it but so what, I had it regardless of origin.  After seeing a couple of neuros who only said they'd offer pain meds when the pain worsened - that was the end of western medicine's help.  I tried acupuncture and had a bit of relief but not much.

I heard about Alpha Lipoic Acid (essential fatty acid) from an article and gave it a try.  No cure but, oh my feet let me sleep after I started taking it.  My feet would ache at night.  Also, my toes seem more 'active' now.  It certainly is not a cure but I'll it surely helps.  I take 600 mg 2x a day.  I started with 1x to see how my body would react.  After about 6 months I quit and pow here comes the discomfort back. 

There is no cure - just good luck I guess.  I try to put it in perspective - if I didn't have neuropathy I'd probably be long gone, guess which I choose!

Good luck.

Susan C.

thank you for this.  I'm desperate to try to find something that will help my husband be more comfortable.  I'm going to read up on ALA.

RE: Neuropathy

by JustJulz on Thu Jul 12, 2018 05:54 PM

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I spoke with someone at the treatment center who had neuropathy.  Only at night when she laid down, feet & calves would ache so bad it woke her up every night.  She got a medical marijuana card.  The 1st night after going to dispensary,  it stopped & she hasn't had it since.  Smokes a little before bed.  If that is an option, you might want to give it a try.  

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