Taxol Neuropathy/Joint pain from taxol

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mls19
mls19 Member Posts: 1

I'm experiencing very bad hand pain at night and in the morning, which keeps me awake.  I cannot use utensils or write, etc. in the morning and driving is not easy. During the day either it gets better or worse. I finished chemo August 16th.  I had some slight numbness at that time but not joint pain.  Now weeks after everything is getting worse.  Any suggestions, supplements etc. how I can reduce the pain/numbness? I already take a tumeric drink which helps minimally.

I think my onc lied to me when I suggested stopping taxol few sessions early as I know other women in my Facebook did when they experienced numbness, she said it would eventually go away.

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  • JKoehler25
    JKoehler25 Member Posts: 12
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    She lied

    The neuropathy you have is caused by the taxol and it is permanent. You may see some, and I say some, improvement over time. That chemo is still attacking your body even now. I was done in april and I absolutely refused that last 4 doses. My hands were paralyzed and I had horrific pain in legs from knees down including feet. Some of it went away. I still have a hard time grasping smalll things or opening small things, but not paralyzed. My feet kill me. They did give me some ultram, very little, and it helped my feet tremendously. Dr nowadays dont want you to take anything, even if it helps. I find their help, not helpful at all. I was never, ever told that some things were permanent, leaving me unable to make informed decisions. Now I have 2cond degree radiation burns, which I have been suffering with for last 10days. Needless to say, I cancelled the rest of radiation. I am not doing that. I don't want to live quite that bad. I'll take my chances. There are no supplements that will help you. You have permanent nerve damage. Maybe with time, some of it will go away. Mine did, but the feet, that's a different story. The dr. said it will not go away and I know of people who have this also from taxol. Have Dr. order some ultram. It's much milder than an opiate, which I don't want to take. Or if medical pot is available where you are, I would try that. It worked for me during chemo. I didn't get it from oncologist but medical pot is legal where I live. I find it reprehensible that your oncologist outright lied to you. Do they really want the $ that bad? I wonder some times. What you experienced is the same danger sympton my oncologist warned me about and they said if it occurred, they would have to lower the dose or give a break. I'm so sorry this happened to you. I can't imagine what I would be like if I would have taken the last 4 doses. Thank the Lord I didn't. The ultram really worked for me. It felt so much better. They cure your cancer let's hope after all that, but give you permanent lifelong problems. That's what I mean by informed consent. I told all of them I don't want to live at all costs, and I meant that. That's just me, but I have the rright to make informed decisions for my own medical care. They lied by omission to me too. I'll never go back there again. There is a lot of $ to be made in the cancer industry. Money corrupts. Never forget that. I've learned some valuable lessons. Medical pot or Ultram if you can try it. I sure hope everything is going to be ok with you. I'm going thru it too.  Take care

  • SOG
    SOG Member Posts: 3
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    Onco doc lie about permanent neuropathy from TAXOL

    I am sorry for all of you who had your doctors lying to you about Taxol SE; mine did the same, much before my 12th Taxol I started having numbing on my hands and mentioned to nurses and doctors every weekly treatment and they just ignored and said It would go away when I stopped chemo,  days before my 12th session (3 months of taxol) my pet scan results were really good but the doctor still reccomended continuing Taxol "just in case" for another 3 months???...I did 4 more (total 16 instead of 24)   I started having so much pain at night and mornings and finally the nurse I had one day decided no to give me treatment because of my pain and to wait and see how I would be feeling in the following week...someone finally listened to my complains...that day I decided I was not going to do more chemo no matter what...my scan were good..they just keep doing until you cry really loud...otherwise they dont care...it is a lot money for them to let it go...you have to make your self heard...i wish I had stand my grounds when I asked to stop Taxol on 12th week. It has been 7 months and I started having some improvement with acunpunture, but still dificult to grab small things, opening bags ,pins and neddles feeling and so on.... hope it gets better for all of us! take care!

  • HapB
    HapB Member Posts: 527
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    Side effects from chemo

    It is disturbing when doctors and nurses refuse to acknowledge known side effects of chemo. Sorry that you are both suffering. I will tell you that the previous time I had chemo, 6 years ago, it took about 4 years for the pins and needles in my hands and feet to go away. Chemo brain is here to stay! I hope that you both feel better soon.

  • peony
    peony Member Posts: 306 Member
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    I suffered some pretty bad

    I suffered some pretty bad effects from Taxol and it was stopped after 9 infusions. My hands and feet have numbness and stinging sensations.  i've been using Lyrica and it helps my feet a lot, but it kind of makes me feel numb all over.  I use Diclofenac Sodium gel; it's a topical gel that I massage into my joints and it helps a lot. Maybe your primary care doctor can help you if you're not getting the response yu need from the Onc. I've heard it gradually lessons over time and my hands are somewhat better.  Time will tell. Best wishes.