stage IV

what2do
what2do Member Posts: 8
edited March 2014 in Colorectal Cancer #1
disease progression after surgery and chemo and having severe neuropathy after oxaliplatin. Anyone having experience with Erbitux or post chemo treatment for the neuropathy?

Comments

  • lynn1222
    lynn1222 Member Posts: 105
    #2
    hello my friend, i am a stage 4 too, i did go through the neuropathy as well and my doc put me on neurontin for it and it helped alot, i still had the cold sensation when i touched cold things but it did help. hang in there and never give up it is possible to go into remission because i did it. god bless you .

    lynn
  • taraHK
    taraHK Member Posts: 1,952 Member
    #3
    I'm sorry to hear about your disease progression and hope you find a good second/other regime. I'm afraid I don't have direct experiene with Erbitux but there are folk on this board who have, and I hope they pitch in. I do have some neuropathy following oxaliplatin but not too severe. I'm just taking Vit B6. I had FOLFOX previously. My experience then was that the neuropathy almost completely disappeared (fingers and toes) -- but it took about 1 yr. Good luck and best wishes to you.
    Tara
  • what2do
    what2do Member Posts: 8
    #4
    lynn1222 said:

    hello my friend, i am a stage 4 too, i did go through the neuropathy as well and my doc put me on neurontin for it and it helped alot, i still had the cold sensation when i touched cold things but it did help. hang in there and never give up it is possible to go into remission because i did it. god bless you .

    lynn

    It's so great to know that I'm not alone and destined to gloom and doom. I've seen so many stage IV NED (no evidence of disease). I would like to compare extent of disease and treatment.
    I initially had a large cecal tumor and 5 large liver mets (totally asymptomatic prior to diagnosis). Had surgery - chemo - surgery - chemo and felt NED for 4 months until lung, lymph node and possibly abdominal wall muscle involvement became apparent. Would like to know what you had and treatments if you don't mind. I wonder if there is a stage IV registry with treatment and results.
  • what2do
    what2do Member Posts: 8
    #5
    taraHK said:

    I'm sorry to hear about your disease progression and hope you find a good second/other regime. I'm afraid I don't have direct experiene with Erbitux but there are folk on this board who have, and I hope they pitch in. I do have some neuropathy following oxaliplatin but not too severe. I'm just taking Vit B6. I had FOLFOX previously. My experience then was that the neuropathy almost completely disappeared (fingers and toes) -- but it took about 1 yr. Good luck and best wishes to you.
    Tara

    I was told that the neuropathy you had after a year you would have for a lifetime. The quality of living is important to me. Thanks for letting me know things can be different from what I'm feeling now.

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