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Report on Braf/MEK Trial – Good Result, Bad Rash

Forums General Melanoma Community Report on Braf/MEK Trial – Good Result, Bad Rash

  • Post
    Eileen L
    Participant
    Some of you may recall that I posted a number of weeks ago about my fight to get Kaiser to approve my participation in the Roche Braf/MEK trial.starts successful and started the trial almost three weeks ago. I Developed a rash last week, seen by the trial ONC who thought it was a MEK rash. Over the weekend rash got much worse, extending over most of my body. My legs now have big blotches on them where the rash has consolidated into patches and the rash is now on the mucous tissue of my mouth which is very painful.

    Some of you may recall that I posted a number of weeks ago about my fight to get Kaiser to approve my participation in the Roche Braf/MEK trial.starts successful and started the trial almost three weeks ago. I Developed a rash last week, seen by the trial ONC who thought it was a MEK rash. Over the weekend rash got much worse, extending over most of my body. My legs now have big blotches on them where the rash has consolidated into patches and the rash is now on the mucous tissue of my mouth which is very painful. Of course my doctor is at the ASCO meetings, the on call oncologist prescribed some lidocaine mouthwash. I am pretty freaked out that I will be kicked off the trial, I see my regular ONC on Thursday.

    Anyone else in a MEK trial that has had such an extensive rash? If so, what was done about it? I get a week off MEK starting on Thursday. Hoping the drug holiday will give my body time to adjust.

    The good news is that earlier in the week I had a PET scan and the SUV of my tumor on my right adrenal went from 8.4 to 3.2! Also was having joint pain and fever/chills that have stopped!

    Eileen L

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  • Replies
      kylez
      Participant

      Eileen, the almost-all-over skin rash sounds scary. I know it would freak me out, it almost sounds like medieval torture. I hope you get some relief very soon.

      But the size reduction sounds great, as in GREAT, especially in such a short time. Hoping for continued good vectors on this from your oncs…

      – Kyle

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        Eileen L
        Participant
        Thx Kyle for your support. Just to clarify it was the SUV that went down, not the size of the tumor.
        Eileen L

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        Eileen L
        Participant
        Thx Kyle for your support. Just to clarify it was the SUV that went down, not the size of the tumor.
        Eileen L

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        kylez
        Participant
        I see now, SUV is new terminology to me. I hope your skin rash is not getting any worse, and you get to Thurs. and get to the MEK break ok.

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        kylez
        Participant
        I see now, SUV is new terminology to me. I hope your skin rash is not getting any worse, and you get to Thurs. and get to the MEK break ok.

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        kylez
        Participant
        I see now, SUV is new terminology to me. I hope your skin rash is not getting any worse, and you get to Thurs. and get to the MEK break ok.

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        Eileen L
        Participant
        Thx Kyle for your support. Just to clarify it was the SUV that went down, not the size of the tumor.
        Eileen L

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      kylez
      Participant

      Eileen, the almost-all-over skin rash sounds scary. I know it would freak me out, it almost sounds like medieval torture. I hope you get some relief very soon.

      But the size reduction sounds great, as in GREAT, especially in such a short time. Hoping for continued good vectors on this from your oncs…

      – Kyle

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      kylez
      Participant

      Eileen, the almost-all-over skin rash sounds scary. I know it would freak me out, it almost sounds like medieval torture. I hope you get some relief very soon.

      But the size reduction sounds great, as in GREAT, especially in such a short time. Hoping for continued good vectors on this from your oncs…

      – Kyle

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