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    GregP_WN wrote on CJLMomma's wall

    Welcome to WhatNext, you have found the best place on the internet to connect with others going through the same thing as you and willing to share, inspire, and motivate you through your diagnosis and treatments. If you have questions please post them on the questions page here www.whatnext.com/questions. There are lots of people here that will be happy to help you. If you have any questions about how to find information on the site drop me a post.

    We hope you're doing well.

    GregP
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    4X Survivor
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    CJLMomma asked a questionLeukemia

    Nerve Pain from portacath (removed 8 years ago!)

    6 answers
    • po18guy's Avatar
      po18guy

      One less serious possibility: did that cath have a dacron cuff or collar to reduce infection? If so, a certain percentage of them remain in the body when the line is pulled. Over time, they can move around as the body tries to expel them. Nerve pain can result. I just had an ultrasound for a lump on my chest, only to find out that it is a dacron cuff working its way out. OK for now, but I may have to have it removed in the future.

      3 months ago
    • meyati's Avatar
      meyati

      She could have Reflexive Sympathetic Dystrophy. That can be fairly constant with flare ups, or it comes and goes. Talk to her doctor and ask this specific question---A person can fall and get it. A person can have surgery and get it. A person can lose a limb and have RSD. nerve blocks helped me. If they hadn't worked, I was going to commit suicide. Also Gabapentin helps too. Mine is in my chest. Good luck. Also it can get progressively worse-longer and more painful episodes. It can't hurt to ask the doctor- and ask for a pain clinic. I was referred to a pain clinic by the military and diagnosed there.

      3 months ago
    • meyati's Avatar
      meyati

      I'm not too happy about the surgery option as the surgery has to be repeated every few years- one of my friends had nerve surgery every 4 years. The more surgery a person has, the less effective the nerve blocks are. Surgery caused mine-breast biopsy-and I did not understand how something that caused my RSD could heal my RSD-so I got real mulish about that

      3 months ago
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    CJLMomma shared an experience

    Side Effects (Nerve damage (peripheral neuropathy)): My 14 year old daughter has been cancer free for 8 years now. About every 3 months she has massive nerve pain where her portacath was located in her chest. It hurts and bothers her so much that she doesn't sleep much at all for the entire week. We are wondering if there is anyone else who has dealt with this. Not sure if it has something to do with her hormones? Wearing a bra and all clothing makes it worse. Cannot put any pressure on it at all. No heat, ice, massage, Ibuprofen, or Steroids help at all. Please help!

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    DaveWaz wrote on CJLMomma's wall

    Welcome to the WhatNext family! The WhatNext family is made up of people like you who are looking for help or looking to help others. To help you along your journey the WhatNext family has put together a Beginner's Guide to Cancer that I highly recommend you check-out here: http://bit.ly/10BQKCi. Also, please do not hesitate to reach out to others or ask for help.

    Wishing you the best.

    David
    Founder, WhatNexter