CIPN Chemotherapy Induced Peripheral Neuropathy

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RacheltheMultiTasker
RacheltheMultiTasker Member Posts: 13
edited December 2016 in Chemotherapy - Before, During, and After

At least we now have initials: CIPN. I've had CIPN for the last 16 years. It IS permanent and progressive. We need help, too. Please, could we begin

a section on your website, which I've been on-and-off looking for info and finding what I need, for those last 16 years. Just read the personal

article by Denise on Warrior vs Survivor. She mentioned CIPN. It's debilitating! I now have CIPN in my feet/legs/arms/hands/and vision. I manage

the pain with the smallest pill of oxycodone that's available. To become functional, I work-the-program of Physical Therapy with Visualization.

I live in Tucson. My neurologist is in Phoenix. He's the only one I could find who would give me a neurological check-up and let me know if I was

stronger, weaker, or the same as the year before. There IS a clinical study with massage in M.D. Anderson, but you have to move there for the

weeks of the study. They are accepting new, diagnosed CIPN patients. Can you help educate and connect us on this topic?

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  • RacheltheMultiTasker
    RacheltheMultiTasker Member Posts: 13
    edited October 2016

    Trying to figure out how to see the 4 posts. Think they'll appear below this. Am delighted that some-oneS replied. Thank you! Wish we had more. Wish we

    had a community in which to help each other. Roughly 40-60% of those who get taxotere, and several other chemo's, do develop CIPN to some extent.

    We all need some help.

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  • PeggySull
    PeggySull Member Posts: 686
    edited November 2016

    I am going for an evaluation for PT for permanent CIPN causing balance problems/falls on December 6, 2016. It has recently been getting worse. I'll keep posting if anyone is interested in continuing this thread.

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  • gardengypsy
    gardengypsy Member Posts: 769
    edited November 2016

    Hi everyone~

    I am happy to find this thread.

    I am 7 months out from chemo/AC+T and shocked to find that the neuropathy isn't getting better. It has resulted in a pain/fatigue/insomnia/depression cycle that I am having a hard time breaking. I currently take 400 mg of Gabapentin daily, plus Ibuprofen at night. I would be taking more, but the Gabapentin intensifies my chemobrain symptoms.

    My pain is mostly below my hips, worse at night. I have to wear super-supportive footwear or my day can be unbearable (I am a teacher). For the first time in my career, I sit throughout most of classtime.

    What are you doing for the pain? Is there anyone out there that has been successful in getting short term or long term disability? Should I see a neurologist?

    Thanks and blessings to all~ gardengypsy






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  • wrenn
    wrenn Member Posts: 2,707
    edited November 2016

    I take alpha lipoic acid and Vitamin B6 (check with your doctor before taking anything new) but still have some pain 3 years out after one dose of chemo. I notice a huge difference if I have any fluid retention in my feet so I am careful with sodium intake and I drink tons of water. I hope you find a solution that works. It is really one of the nightmares of cancer.

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited November 2016

    Rachael: Unfortunately there are lots of us with this problem. You might try this Permanent Neuropathy thread.

    https://community.breastcancer.org/forum/69/topics...


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  • gardengypsy
    gardengypsy Member Posts: 769
    edited November 2016

    Peggy~

    Yes, please keep posting. I am heading to a neuropsych evaluation at Brigham and Women's for my CIPN in a couple weeks. Will also report back.

    gardengypsy

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  • gardengypsy
    gardengypsy Member Posts: 769
    edited December 2016

    Hey all~

    Because of a serious family issue, my neuro eval at Brigham was cancelled.

    Debating whether or not to reschedule. I feel like I need to document the neuropathy in case I need disability coverage....



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  • Moderators
    Moderators Member Posts: 25,912
    edited December 2016

    Moved this thread over to the Chemo forum, so others looking for this topic can find it. We hope this helps!

    --The Mods

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