Long term Chemo induced neuropathy

DiJohn
DiJohn Member Posts: 3 Member
in Ovarian Cancer #1

Hi. I was diagnosed with 2 types of Ovarian Cancer in 2015. After chemo I became disabled with peripheral neuropathy and my entire life as I knew it changed. Fast forward, I noticed pain and neuropathy symptoms worsening about a year ago and now I have pain, burning, extreme muscle tightness and pain if I'm touched on my back, shoulders and arms. Clothing feels prickly, even if very soft , on my legs and feet. PT said my case was complicated and it did help to a small degree but I'm still flaring up and clothing is excruciating to wear. A nudist colony is not an option😁. Has anyone had a similar experience? The Doctors don't know what to do with me because I can't take the normal nerve pain meds. Thank you so much, feeling alone, exhausted, anxious and scared.

Comments

  • katalina333
    katalina333 Member Posts: 6 Member
    #2

    hello DiJohn,

    I’m just over a year from OC stage 3c so see your post ten years out from initial diagnosis makes my heart sing. I developed neuropathy pretty early in the 6 cycles of standard OC chemo. So far it has remained stable, mostly my toes, the tingling and numbness. I know this probably isn’t what you are looking for in terms of information about your current symptoms. I’m so sorry you are experiencing this level of discomfort. All I can say is keep advocating for yourself, the squeaky wheel gets oiled sooner! And please update us if you can. Sometimes this board is a little quiet. Just wanted you to know I hear you and am hoping for the best for you.

  • Arx001
    Arx001 Member Posts: 36 Member
    #3

    Hello. Do you have a good research hospital where you live and if so did you try it?

  • katalina333
    katalina333 Member Posts: 6 Member
    #4
    https://csn.cancer.org/discussion/comment/1720369#Comment_1720369

    yes. I am followed at Massachusetts General Hospital MGH in Boston

  • Arx001
    Arx001 Member Posts: 36 Member
    #5

    I wish I could help - noone deserves being in serious discomfort so frequently. I only had a minor case of peripheral neuropathy except a time period when the oxaliplatin attacked my ear cells and caused serious tinnitus and hearing loss but that was during the treatment and I resolved this by terminating oxali and using betahistine which increases blood flow to the ears.

    I’m curious what medicine in your chemo regime caused this neuropathy? Was it platin based drugs? They are quite strong, sometimes too strong…

    My only suggestion would be to look for a doctor who specializes in PN and I am sure you did that. Did you consider looking for clinical trials?

  • DiJohn
    DiJohn Member Posts: 3 Member
    #6
    https://csn.cancer.org/discussion/comment/1720365#Comment_1720365

    I wish the best for you too! Thank you for responding ❤️

  • DiJohn
    DiJohn Member Posts: 3 Member
    #7
    https://csn.cancer.org/discussion/comment/1720374#Comment_1720374

    No in Lexington Kentucky. But my primary care Dr is wonderful and will try anything I ask. I also see a pain Dr and yesterday was the first time I actually met a Dr who knew about my condition because her Aunt lives with similar issues. I've done PT and that has helped but every day is different and some days nothing helps so I just look forward to the next day. My mom bought me a kick scooter so I could ride with my 10 yr old son and I've sledded swith him! I am living life. Its completely different but I am able to find joy again. It took about 6 yrs to get to that point.

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