• Has anybody used gleevac? Have been on Nexavar twice now and both times ended up with hand foot syndrome.

    Asked by BrandenC on Wednesday, October 12, 2011

    Has anybody used gleevac? Have been on Nexavar twice now and both times ended up with hand foot syndrome.

    It is listed as a possible treatment for aggressive fibromatosis and before I talk to my doc I want to know people's experiences.

    7 Answers from the Community

    7 answers
    • BrandenC's Avatar
      BrandenC

      Thanks everyone, I am staying with nexavar. I let my hands heal and am starting at a lower dose, per onc instructions. And mspinkladybug I have been using aquaphor since I still have a ton of it around from my Rad treatments, and as long as I am vigilant about applying it, it seems to help.

      over 2 years ago
    • pilar's Avatar
      pilar

      I took Gleevac about 2 months ago. I was only able to take it for 5 days. I could not handle it(the chemo I did was easier than that pill). I had a consant headache, my whole body was swelling up from fluid, and I was consantly throwing up I couldnt even hold down water.

      over 2 years ago
    • DonnaS's Avatar
      DonnaS

      Branden don't know what exactly the tumor is you have but my husband has a desmoid tumor and was on nexavar but do to the hand and foot and getting extremely nauseous he went off of it have to go back to oncologist to see what else we can do.
      I have found a great site on facebook its the DTRF (desmoid tumor research foundation) the ppl talk alot about all treatments
      and you can ask them what they have experienced!!! hope it helps you with questions!!

      over 2 years ago

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