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B-RAF roll call

Forums General Melanoma Community B-RAF roll call

  • Post
    emilypen
    Participant

    Hi All,

    My hubby was on a MEK/P13k trial and after having an adverse side effect he was taken off the study. One of the tumours in his back has grown too close to his spine so its surgery on Tuesday, followed by some radiation and then on to PLX-4032. He got the dacarbazine arm of the study last summer so with expanded access he is allowed to get on the Roche B-Raf drug right away.

    So what I'm wondering is how many people on this board are on the drug now and for how long? and if you failed off B-RAF how long were you on the drug?

    Hi All,

    My hubby was on a MEK/P13k trial and after having an adverse side effect he was taken off the study. One of the tumours in his back has grown too close to his spine so its surgery on Tuesday, followed by some radiation and then on to PLX-4032. He got the dacarbazine arm of the study last summer so with expanded access he is allowed to get on the Roche B-Raf drug right away.

    So what I'm wondering is how many people on this board are on the drug now and for how long? and if you failed off B-RAF how long were you on the drug?

    We were hoping for a B-RAF/IPI combo trial but they don't have that set up yet, our onc says he expects it soon.

    Thanks,

    Emily

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  • Replies
      mrsmarilyn
      Participant

      Hi-I was just going to post my brothers results!  He was GSK Braf for 9 months – it eliminated 6 out of 7 tumors including one in the lung area.  The last remaining tumor is in the pelvic area-and since it increased in size over the last 9 months-they now have him on the GSK Braf/Mek combo.  He just started on Monday of this week.  So bittersweet news-so close to all dissappearing-but you know the MEL – always has to make it complicated!  He is in good spirits and really the Braf has been a miracle!

      Best of luck!

      MrsMarilyn

      Sister of Gary Stage IV

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      mrsmarilyn
      Participant

      Hi-I was just going to post my brothers results!  He was GSK Braf for 9 months – it eliminated 6 out of 7 tumors including one in the lung area.  The last remaining tumor is in the pelvic area-and since it increased in size over the last 9 months-they now have him on the GSK Braf/Mek combo.  He just started on Monday of this week.  So bittersweet news-so close to all dissappearing-but you know the MEL – always has to make it complicated!  He is in good spirits and really the Braf has been a miracle!

      Best of luck!

      MrsMarilyn

      Sister of Gary Stage IV

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      P Brown
      Participant

      Emily,

      My wife was one of the unfortunate who had absolutely no response at all.   Dramatic growth in her spleen mets and new ones on her liver followed by a couple of new mets on the brain.

      I am so happy to hear from those that do respond and hope someday we can figure out why some do and some don't.

      BTW, we are hoping next week to get on the Braf/MEK trial at MDAnderson.  

      Best wishes,  Paul

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      P Brown
      Participant

      Emily,

      My wife was one of the unfortunate who had absolutely no response at all.   Dramatic growth in her spleen mets and new ones on her liver followed by a couple of new mets on the brain.

      I am so happy to hear from those that do respond and hope someday we can figure out why some do and some don't.

      BTW, we are hoping next week to get on the Braf/MEK trial at MDAnderson.  

      Best wishes,  Paul

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      tennisgirl
      Participant

      Emily: 
       

      I was on the Roche BRAF from May – October 2010.  Had a great response at first and then my tumors started growing again.  After I stopped the Roche BRAF, it's like my melanoma went crazy and things grew substantially fast.  I have heard this is common.  But on Wednesday, 2/23/10 I started on GSK BRAF/MEK and am AMAZED how fast my subcutaneous tumors are shrinking.  I have been sending pics via my cell phone to my friends and family.  It's just remarkable.  To me, it looks like it's shriveling up and dying.   Dying!  How nice to use that word in regards to melanoma going away! 

      Marian Erickson

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      tennisgirl
      Participant

      Emily: 
       

      I was on the Roche BRAF from May – October 2010.  Had a great response at first and then my tumors started growing again.  After I stopped the Roche BRAF, it's like my melanoma went crazy and things grew substantially fast.  I have heard this is common.  But on Wednesday, 2/23/10 I started on GSK BRAF/MEK and am AMAZED how fast my subcutaneous tumors are shrinking.  I have been sending pics via my cell phone to my friends and family.  It's just remarkable.  To me, it looks like it's shriveling up and dying.   Dying!  How nice to use that word in regards to melanoma going away! 

      Marian Erickson

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      killmel
      Participant

      Hi Everyone,

       

      I am new here & hope to get on Braf or Braf.Mek trial soon.

      I would be interested in knowing the side effects of these drugs while you are on them  Also, how do you manage the side effects.

       

      Thanks so much for your replys.

      Wendy

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        P Brown
        Participant

        Wendy,

        My bride had thinning of her hair, rough skin (like she had goosebumps all over) and a couple of squamous cell spot that needed to be frozen off.   Also, she seemed to sleep more.

        But all in all very tolerable.   Just wish we would have gotten some benefit !!

        Paul

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        P Brown
        Participant

        Wendy,

        My bride had thinning of her hair, rough skin (like she had goosebumps all over) and a couple of squamous cell spot that needed to be frozen off.   Also, she seemed to sleep more.

        But all in all very tolerable.   Just wish we would have gotten some benefit !!

        Paul

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      killmel
      Participant

      Hi Everyone,

       

      I am new here & hope to get on Braf or Braf.Mek trial soon.

      I would be interested in knowing the side effects of these drugs while you are on them  Also, how do you manage the side effects.

       

      Thanks so much for your replys.

      Wendy

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      KellieSue
      Participant

      I've only been on B-RAF for one week and have just had some diarhhea as a side effect. I'll have scans in 5 weeks. I'm hoping for shrinkage of my lung tumors, my thyroid tumor seems to be stable after going through 2 rounds of ALT-801 and 8 bags of IL-2.

      Kellie(from Iowa) Stage IV B-RAF now

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      KellieSue
      Participant

      I've only been on B-RAF for one week and have just had some diarhhea as a side effect. I'll have scans in 5 weeks. I'm hoping for shrinkage of my lung tumors, my thyroid tumor seems to be stable after going through 2 rounds of ALT-801 and 8 bags of IL-2.

      Kellie(from Iowa) Stage IV B-RAF now

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