neuropathy

ktamp
ktamp Member Posts: 81
in Ovarian Cancer #1
I've done 5 treatments of weekly taxol and the neuropathy has gotten very bad. My hands, feet, and calves feel like they are on fire with tingles. Nothing helps. At what point does the treatment become worse than the disease? I don't know if I can continue with the taxol but I'm scared to stop it. I have cried every day since my last treatment because my hands and feet hurt so bad. Is this normal?

Comments

  • Robkel7
    Robkel7 Member Posts: 68
    #2
    Not sure...
    I am sorry you are in so much pain. I am not sure if this is "normal". I had taxol and have suffered neuropathy but not to that degree. Have you spoken to your oncologist about this? If so, what did he/she say?
  • susangr
    susangr Member Posts: 64
    #3
    I have neuropathy from Taxol and was changed to a drug in the same family, which was suppose to have less neurotoxic side effects but be just as effective as Taxol or better. The drug was Taxotere. Once I started getting neuropathy my doctor changed the drug immediately as he was afraid the side effects might cripple me permanently and he did not want to chance this on the next dose. The doctors also put me on 100mg B6 twice daily and I began taking L glutamine 5 grams dissolved in a glass of water 3 times a day. It is an amino acid, comes in powder form,can be bought at most health food stores, tasteless and dissolves well in water. From what I've read it doesn't seem to have any major side effects. Ask you doctors if you should take these. In a follow up neurologists visit I was told it would take up to 1 year at the end of chemo treatment to determine just how much permanent nerve damage may remain. I am still taking L-glutamine in the year sine I have stopped chemo. There are also drugs such as neurotin that can help reduce nerve pain as well.

    Susan
  • cfont11
    cfont11 Member Posts: 115
    #4
    I have neuropathy in my feet
    I have neuropathy in my feet from taxol. I take B6, neurotin and alpha lipoic acid. Ask your dr. about neurotin. It does not make the neuropathy go away completely but it makes it tolerable. I am so sorry you are in so much pain but I am sure the oncologist can help. Be persistent with him/her and you will get some relief. Good luck.
  • anicca
    anicca Member Posts: 334 Member
    #5
    cfont11 said:

    I have neuropathy in my feet
    I have neuropathy in my feet from taxol. I take B6, neurotin and alpha lipoic acid. Ask your dr. about neurotin. It does not make the neuropathy go away completely but it makes it tolerable. I am so sorry you are in so much pain but I am sure the oncologist can help. Be persistent with him/her and you will get some relief. Good luck.

    Alpha Lipoic Acid, which I
    Alpha Lipoic Acid, which I learned about here, helped my feet a LOT. Unfortunately, I've been having crazy itching and stopped the ALA thinking it might be the cause. Maybe when it dies down completely, I'll give the ALA another try. It really did wonders for me. Neurontin (gabapentin) helped very minimally, and I've been taking 50mg B6 + 250mg Magnesium since the neuropathy started. That helped with the initial cramping, and does continue to help somewhat. I finished chemo a year ago in Sept, but I still have problems from wearing tight boots to skate, and taking an antibiotic that I should not have.
  • da1955
    da1955 Member Posts: 30
    #6
    anicca said:

    Alpha Lipoic Acid, which I
    Alpha Lipoic Acid, which I learned about here, helped my feet a LOT. Unfortunately, I've been having crazy itching and stopped the ALA thinking it might be the cause. Maybe when it dies down completely, I'll give the ALA another try. It really did wonders for me. Neurontin (gabapentin) helped very minimally, and I've been taking 50mg B6 + 250mg Magnesium since the neuropathy started. That helped with the initial cramping, and does continue to help somewhat. I finished chemo a year ago in Sept, but I still have problems from wearing tight boots to skate, and taking an antibiotic that I should not have.

    Which antiobiotic?
    Hi anicca- which antibiotic caused you issues? I am currently taking amoxicillin for a sinus infection and hoped it would not adversely effect anything. Thanks for any info. Deb
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #7
    da1955 said:

    Which antiobiotic?
    Hi anicca- which antibiotic caused you issues? I am currently taking amoxicillin for a sinus infection and hoped it would not adversely effect anything. Thanks for any info. Deb

    I have a bit of Taxol
    I have a bit of Taxol related neuropathy. I took a LOT of Taxol - 18 infusions - but thankfully it never became severe.

    I was diagnosed in Sept of 2009 and I am still NED. To me, it was worth it.

    Carlene
  • ktamp
    ktamp Member Posts: 81
    #8
    Hissy_Fitz said:

    I have a bit of Taxol
    I have a bit of Taxol related neuropathy. I took a LOT of Taxol - 18 infusions - but thankfully it never became severe.

    I was diagnosed in Sept of 2009 and I am still NED. To me, it was worth it.

    Carlene

    The doctor has taken me off
    The doctor has taken me off taxol and started me on neurontin. I was scared to say anything because I'm scared to stop the taxol. But it is no longer worth it for me. My neuropathy has gotten to the point that even turning over in bed sends waves of fiery tingles over my whole body. I talked to my doctor yesterday. He said the taxol is no good for me. He had a feeling it would end up this way because my wbc counts went in the toilet after 1 treatment. So I will be starting taxotere with my next carbo. I am relieved honestly. I am happy there is an alternative to taxol that is supposed to be as effective. Just wish I had said something sooner before it got this bad. I started the neurontin last night but the doctor said it could take months before I see any signifigant improvement. Right now it's okay. It always gets progressively worse during the day. AFter dinner, I just get in bed, watch tv and try not to move.
  • anicca
    anicca Member Posts: 334 Member
    #9
    da1955 said:

    Which antiobiotic?
    Hi anicca- which antibiotic caused you issues? I am currently taking amoxicillin for a sinus infection and hoped it would not adversely effect anything. Thanks for any info. Deb

    All of the quinalones are
    All of the quinalones are contraindicated for anyone with peripheral neuropathy as they can make it worse. The one I took was Ciprofloxacin. I told the ENT who prescribed it that I was concerned about my neuropathy, but he said he didn't think I would have a problem. It only took 4 days to undo a year's worth of progress. I was furious, to say the least. Other quinalones to watch out for are Avelox and Levaquin.

    Meanwhile, my itching continues a week after I stopped the ALA. I saw my family practitioner for the itching and he has me starting a combo of cetirazine (Zyrtec) and femotadine (Zantac), both of which work on a different agent than histamines. I'm starting them tonight, and if they work, I may go back to the ALA in a week or so.

    DB

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