Neuropathy after Folfox and 5FU

meemaa
meemaa Member Posts: 25
edited March 2014 in Colorectal Cancer #1
We have to decide on yes or no to chemo that may cause neuropathy in hands and feet. Bob already has problems with his feet and legs because of disc desease. He doesn't want to turn himself in to a cripple. Any advise?

Comments

  • HDLadyRider
    HDLadyRider Member Posts: 10
    #2
    My husband just decided this past week to do without the oxilaplatin (sp?) because of severe neuropathy as well. It was his 8th of 8 treatments. We get the PET scan this coming week and then the results the following...I understand the fear of it but he as well doesn't want to be a cripple. Tough decision for sure. The onc nurse told us that there are nothing the proves it is effective beyond 6 treatments if that is any help. Good luck with your tough decision.
  • cheryltaco
    cheryltaco Member Posts: 39
    #3
    HDLadyRider said:

    My husband just decided this past week to do without the oxilaplatin (sp?) because of severe neuropathy as well. It was his 8th of 8 treatments. We get the PET scan this coming week and then the results the following...I understand the fear of it but he as well doesn't want to be a cripple. Tough decision for sure. The onc nurse told us that there are nothing the proves it is effective beyond 6 treatments if that is any help. Good luck with your tough decision.

    I was pulled off the Oxaliplatin do to horrible neuropathy, breathing problems etc. I am now on Xeloda by itself and doing fine. It is a tough decision to make but in addition to fighting the cancer you also have to be able to live your life. For me this was not possible on the Oxy. Good luck to you. Cheryl
  • Faith4Cure
    Faith4Cure Member Posts: 405 Member
    #4
    It is a tough decision. My husband did the Oxiliplatin and it did cause the tingling of the hands and feet and the sensitivity to the cold. It has been about 8 months since he finished treatments. He still has some numbness in his feet, but it is tolerable. I know that some people have more bothersome symptoms. One thing that may help with making your decision is to know that this is very cumulative and doesn't get bad all at once. With each treatment my husbands symptoms came stronger and lasted longer. he did 8 treatments. You might be able to try it and see how well he tolerates it each time and discontinue it before it becomes too bothersome. Good luck with your decision.

    Faith
  • meemaa
    meemaa Member Posts: 25
    #5
    cheryltaco said:

    I was pulled off the Oxaliplatin do to horrible neuropathy, breathing problems etc. I am now on Xeloda by itself and doing fine. It is a tough decision to make but in addition to fighting the cancer you also have to be able to live your life. For me this was not possible on the Oxy. Good luck to you. Cheryl

    Thanks for the input. We need all the info we can get.

    mary b.
  • Faith88
    Faith88 Member Posts: 55
    #6
    hello.
    I am new to this board but felt like I should reply to your post. My husband had folfox and finished up his 12 months in December --last two were without the oxilaplatin due to the neuropathy he was experiencing. the neuropathy has continued to get WORSE after the chemo ended. He's been to a neurologist and prescribed Neurontin for the pain and discomfort but it's becoming such a problem that he can't work or even button his shirt or tie shoes or hold a pen or drive his car (stick shift). The oncologist told him going in that this was one of the side effects of this drug and that it showed a 17% (I think) increase in the cure percentage and with Stage III CC everything counts. So he agreed to it, but now although he hasn't said anything I am wondering if it was a wise choice since his quality of life is so compromised. We are praying that this is temporary and will improve over time even if never back to where he was previously.
    It's a tough decision and one that needs to be looked at from a lot of different angles and then perhaps taken for partial treatment if at all.
    Best wishes to you whatever you decide. I just wanted to add some input.
  • nudgie
    nudgie Member Posts: 1,478 Member
    #7
    I was on FLOFOX and did have some neuropathy. It is a tough decision to make, but also keep in mind that each person (DNA) is different so the drug or drugs will affect the person differently. If you read some posts, some people have no issues while others have serious issues.

    Some people's neuropahty will last for years after chemo and others will disolve quickly.

    This decision needs to be made by Bob, but getting input from family, friends, church, etc helps alot. Bob needs to be happy with his decision without looking back.

    It's like my dad used to say with car and health insurance, damn'd if you do and damn'd if you don't.
  • tex.survivor
    tex.survivor Member Posts: 5
    #8
    Have you checked with your oncologist regarding Neurontin (generic gabepentin) which is frquently prescribed to treat neuorpathy (both diabetic and chemo-induced).

    The doses (both amount of pills and frequency of dosage) can be adjusted to minimize neuropathic symptoms. An additional benefit is that the cost of the medication is relatively inexpensive and does not seem to have any negative side effects.

    Just as a note - gabepentin was originally used to treatment epileptic seisures and researchers still have not been able to determine the specific mechanism that is used to treat neurpathy - other than it works and does so fairly effectively too.

    Hope that this helps you with your treatment decisions.

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