CHEMO-INDUCED PHERIPHERAL NEUROPATHY

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jonahrex98
jonahrex98 Member Posts: 23 Member
I definitely have this from everything I've experienced and read. I know it seems like nothing when living or dying is the only thing that matters, but I have dealt with this for ten years and am told that everything should be normal now. I need a diagnosis now because it is interfering with my job. The doctors just don’t know much about this since long-term survivors are few. They are clueless. I'm only 45 and should be able to run and be athletic as always, but instead I'm an overweight weakling and will lose my balance or fall from a mere push. I also have to haul myself up steps and hold the rail for fear of falling when going down. I have the dropsies and can hardly sew or button my buttons. I stumble or trip when trying to walk. Is this familiar to anyone? Does anyone know what to tell the doctors to enable them to make a proper diagnosis?

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  • jerseygirl231
    jerseygirl231 Member Posts: 178
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    Yes It is
    I have the same se do to chemo. It is not easy to deal with.
  • salls41
    salls41 Member Posts: 340
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    Doc should know
    I would think your oncologist doctor would know that the neuropathy is not something that goes away.. it is damage done by chemo that requires medication for relief of symptoms. The medication is to reduce pain I am not sure if it will help with stumbling and weakness that you describe.I am sure one of the other ladies here can offer more advice!
    Good luck to you and let us know!
    Sandy
  • NancyJac
    NancyJac Member Posts: 91
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    I'm not sure what you are
    I'm not sure what you are looking for. Is it a definitive diagnosis of peripheral neuropathy, confirmation that the cause is chemo rather than some other cause, or treatment of the symptoms you are experiencing? I understand your frustration but after 10 years, getting a definitive diagnosis or confirmation of cause doesn't necessarily help unless you need that for insurance or employee disability purposes. Most of us have to find a "new normal" after cancer treatment that may include managing some side effects for the rest of our lives. Unrealistic expectations of returning to your "old normal" can be even more frustrating and hold you back from moving on with your life.

    Have you seen an orthopedist or neurologist? They might be beneficial in prescribing meds and occupational therapy to better manage your symptoms. I know this is probably not the answer you are looking for and that you may believe that somehow officially putting a label on it means that it can be cured, but if the damaged nerves have not fully healed on their own after 10 years, it is not likely that they will regardless of diagnosis and treatment. So I would recommend you focus on how you can best manage and compensate for the symptoms you are experiencing rather than dwell on a diagnosis or getting back to a pre-cancer physical state.

    PS: I also don't know what you mean by doctors not knowing much about this because there are only a few long term survivors. Many people have had peripheral neuropathy for many years and I've never heard of any one not surviving it. It may be a limiting and chronic condition for many, but it is certainly not a terminal one.
  • jonahrex98
    jonahrex98 Member Posts: 23 Member
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    NancyJac said:

    I'm not sure what you are
    I'm not sure what you are looking for. Is it a definitive diagnosis of peripheral neuropathy, confirmation that the cause is chemo rather than some other cause, or treatment of the symptoms you are experiencing? I understand your frustration but after 10 years, getting a definitive diagnosis or confirmation of cause doesn't necessarily help unless you need that for insurance or employee disability purposes. Most of us have to find a "new normal" after cancer treatment that may include managing some side effects for the rest of our lives. Unrealistic expectations of returning to your "old normal" can be even more frustrating and hold you back from moving on with your life.

    Have you seen an orthopedist or neurologist? They might be beneficial in prescribing meds and occupational therapy to better manage your symptoms. I know this is probably not the answer you are looking for and that you may believe that somehow officially putting a label on it means that it can be cured, but if the damaged nerves have not fully healed on their own after 10 years, it is not likely that they will regardless of diagnosis and treatment. So I would recommend you focus on how you can best manage and compensate for the symptoms you are experiencing rather than dwell on a diagnosis or getting back to a pre-cancer physical state.

    PS: I also don't know what you mean by doctors not knowing much about this because there are only a few long term survivors. Many people have had peripheral neuropathy for many years and I've never heard of any one not surviving it. It may be a limiting and chronic condition for many, but it is certainly not a terminal one.

    CHEMO-INDUCED PHERIPHERAL NEUROPATHY
    My General Practitioner has been ruling out conditions for years. I had accepted it and was trying to get some medicines or something to make it better. I might could deal better with this if I weren't only 45 with a husband, a 16 year old and a 14 year old. Every time we go on a vacation where lots of walking is involved, I get so far left behind because I can't keep up. I'm just now seeing a neurologist because of a recent reorganization with my job. I'm having problems doing the new things they want me to do. For ten years, I've been sitting at a desk with hardly no physical activity, but now they have put me in an entry-level position doing physical work. I pursued this some in the past, but not as passionately as now. Sure, I'm depressed. I was respected by my peers for years and now have just been thrown away. I feel so old and put out to pasture, but I have 11 more years to get full pension. I know this seems selfish, but I have to deal with my financial situation and my family right now.
  • MAJW
    MAJW Member Posts: 2,510 Member
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    CHEMO-INDUCED PHERIPHERAL NEUROPATHY
    My General Practitioner has been ruling out conditions for years. I had accepted it and was trying to get some medicines or something to make it better. I might could deal better with this if I weren't only 45 with a husband, a 16 year old and a 14 year old. Every time we go on a vacation where lots of walking is involved, I get so far left behind because I can't keep up. I'm just now seeing a neurologist because of a recent reorganization with my job. I'm having problems doing the new things they want me to do. For ten years, I've been sitting at a desk with hardly no physical activity, but now they have put me in an entry-level position doing physical work. I pursued this some in the past, but not as passionately as now. Sure, I'm depressed. I was respected by my peers for years and now have just been thrown away. I feel so old and put out to pasture, but I have 11 more years to get full pension. I know this seems selfish, but I have to deal with my financial situation and my family right now.

    There is ...
    There is medication for neuropathy....I had it in my breasts due to overlapping of radiation...long story..I felt like I had been set on fire..agony...I was prescribed Gabapentin......totally changed my life! I take 600mg in the morning and 900mg at night...perhaps you should ask about this medication to see if it might help...the falling and stumbling is another matter....seeing a neurologist for that is wise....

    Keep us posted...