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Living with extreme neuropathy

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  • minustwo
    minustwo Member Posts: 13,128
    edited April 2018
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    Garden Gypsy - that's me. I just don't want to try another darn med.

  • Rhyfelwr
    Rhyfelwr Member Posts: 52
    edited April 2018
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    I have heard the 2-year window too.

    My question is: for how long it continues to get worse. I am noticing it more and more. I am wondering if it will keep getting worse and worse, or if things will level off. About how long did it take to develop the symptoms that you currently live with?

  • socallisa
    socallisa Member Posts: 10,184
    edited April 2018
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    I am sorry I can't remember

  • EncoreKennel
    EncoreKennel Member Posts: 5
    edited April 2018
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    I have been living with severe neuropathy due to 42 yrs of diabetes and 25 years of MS I have to use a Service Dog in part due to balance issues from the neuropathy.... I do not feel where my feet are. My hands have a constant low "hum" sensation and I take 1200 mg gabopentin/Neurontin daily. I am prescribed A.C x 4 and then 12 Taxol to follow. I am really thinking I should opt out of the Taxol due to neuropathy and prolonged steroids with the diabetes. Not sure it's a good fit.... anyone else have pre neuropathy issues and taking Taxol?

  • balance
    balance Member Posts: 17
    edited April 2018
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    I have body-wide neuropathy, cause unclear, that was diagnosed 2 years prior to my breast cancer. I was seen at 2 well respected cancer centers. Because of my neuropathy neither thought that I should receive Taxol. The first recommended AC x 4. I went with my 2nd opinion who recommended AC with 5FU x 6. So far, so good. Feel free to PM if you like.

  • notbrokenjustbent
    notbrokenjustbent Member Posts: 326
    edited April 2018
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    Encore, discuss with your MO but I would be very hesitant to do Taxol. Your nerves are already very weakened. personally I would not take the chance but these are difficult choices we must all make for ourselves. If you do go with the Taxol make sure you ice. My doctor mocked me and told me to stay off the internet. He said worse case scenario it would be a very mild and a temporary condition. Not so with me. best of luck.

  • socallisa
    socallisa Member Posts: 10,184
    edited April 2018
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    paraneoplastic syndrome can cause neuropathy before breast cancer is detected. The T cells mistakenly attack the nerves instead of the tumor

  • balance
    balance Member Posts: 17
    edited April 2018
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    Paraneoplastic syndrome has been considered as a possible cause of my neuropathy. Although blood work doesn’t support the diagnosis, it’s still possible

  • carmstr835
    carmstr835 Member Posts: 147
    edited July 2018
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    Hi, I also am suffering from neuropathy, but mine is strange. I got this tingling and loss of feeling and burning of only my right hand. My left forearm I suffer from severe itching from time to time. But the right hand neuropathy is continually getting worse. I finished my taxotere and carbaplatin in August and almost no issues back then, and when there was, it went away before the next cycle. Now it never goes away and is getting worse. I have completed my Herceptin and Perjeta about 5 weeks ago. The bad part is I am right handed and it has definitely affected my quality of life. I prefer not to use my right hand, any sustained pressure is very uncomfortable. They are going to try a "tens unit" and acupuncture while I am in the hospital next week for my surgery. I was wondering if anyone else has such isolated symptoms such as only one hand or arm. I was also wondering if neuropathy is a side effect of radiation treatment. It seemed to get worse after the radiation treatments.

  • minustwo
    minustwo Member Posts: 13,128
    edited September 2020
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    This is an old thread, but I'm posting to reach anyone who still has it in their favorites to let everyone know about the excellent interview/podcast the Mods just posted. Take a look.

    https://www.breastcancer.org/community/podcasts/ne...