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No braf/mek combo trial for me

Forums General Melanoma Community No braf/mek combo trial for me

  • Post
    Linda J
    Participant
    Well, after routine scans for the combo trial I was supposed to start on Wednesday, it turns out I have 5 small mets in my brain which puts that plan on hold. I have had no symptoms of the brain mets. I also had a clear Brain MRI in august. I am scared at how quick it is moving.
    The PET showed spots in my bones (arm, shoulder, leg, spine) as well as nodes and subqs in my hips and legs.
    The goal is to do WBR this week, start a chemo to stop the aggressiveness and then get into a braf trial that is opening up in Canada in six weeks that also targets the brain.
    I am devastated. But hopeful, but scared
    I am 31 and I have a two year old who needs me to be in his life for at least another twenty years.
    Have people lived through worse situations?????????????? Can I still live????

    If you would like to get hold of me directly, please email at [email protected]

    I need some encouragement today :-(

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  • Replies
      Cate
      Participant

      Hi Linda, I'm sorry to hear you are going through this, but the good news is that, YES, people have survived this and I'm sure you will hear from some of them soon.  Take care and try to remain positive:)     Cate

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      Cate
      Participant

      Hi Linda, I'm sorry to hear you are going through this, but the good news is that, YES, people have survived this and I'm sure you will hear from some of them soon.  Take care and try to remain positive:)     Cate

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      Vermont_Donna
      Participant

      Hi,

        So sorry this has happened to you! Melanoma is so scary, moving so fast! I read many many posts on this forum from people who are stage 4 and alive (and many doing well) for many years! They never lose hope and they keep searching and trying as many treatments that they deem appropriate for their illness. Please do not give up and keep your HOPE alive!!!

      Vermont_Donna, stage 3a and currently doing IPI

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      Vermont_Donna
      Participant

      Hi,

        So sorry this has happened to you! Melanoma is so scary, moving so fast! I read many many posts on this forum from people who are stage 4 and alive (and many doing well) for many years! They never lose hope and they keep searching and trying as many treatments that they deem appropriate for their illness. Please do not give up and keep your HOPE alive!!!

      Vermont_Donna, stage 3a and currently doing IPI

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      Fen
      Participant

      I can't give you info on brain mets, but I urge you to post again under "brain mets" or something similar.  I remember a thread awhile ago where WBR vs cyberknife was discussed.

      I can give you some encouragement too – you have everything to live for so throw everything you have into the fight – research, research, research.  Enlist others to help with whatever you need. Exercise, pray, do what you can to keep your spirits up and in fight mode.

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      Fen
      Participant

      I can't give you info on brain mets, but I urge you to post again under "brain mets" or something similar.  I remember a thread awhile ago where WBR vs cyberknife was discussed.

      I can give you some encouragement too – you have everything to live for so throw everything you have into the fight – research, research, research.  Enlist others to help with whatever you need. Exercise, pray, do what you can to keep your spirits up and in fight mode.

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