A happier update to share
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A happier update to share

› Forums › General Melanoma Community › A happier update to share

  • Post
    • August 24, 2011 at 8:01 pm
    shellebrownies
    Participant

    By the grace of God, Roche has given Don approval to join the expanded access vemurafenib trial based on his earlier positive BRAF result. (The test conducted by Roche on the tissue sample we provided came back negative, even though it was from the same sample that had tested postive on GSK's test in May).

    He started the medication today and it was none too soon; he has had increasing back pain in the last week that we are still in the process of controlling.

    By the grace of God, Roche has given Don approval to join the expanded access vemurafenib trial based on his earlier positive BRAF result. (The test conducted by Roche on the tissue sample we provided came back negative, even though it was from the same sample that had tested postive on GSK's test in May).

    He started the medication today and it was none too soon; he has had increasing back pain in the last week that we are still in the process of controlling.

    We still do not know the outcome of what will happen when he is transitioned off the trial once the drug becomes commercially available, but for now, we are happy to have access to the drug at all.

    Thank you, everyone, who has kept us in their thoughts and prayers; I cannot tell you how much that has meant to us!

    Michelle, wife of Don

Viewing 13 reply threads
  • Replies
      • August 24, 2011 at 8:14 pm
      TracyLee
      Participant

      Michelle,

      Hooray! I had a VERY quick BRAF response (within 2 days) Prayerfully, so will Don.

      I was literally drowning in lung fluid, getting drained every 4 days. I could feel it start to work, because I wasn't getting so short of breath after several days past a lung drain.

      Prayers for a rapid response and no pain for Don!

      TracyLee

      • August 24, 2011 at 8:14 pm
      TracyLee
      Participant

      Michelle,

      Hooray! I had a VERY quick BRAF response (within 2 days) Prayerfully, so will Don.

      I was literally drowning in lung fluid, getting drained every 4 days. I could feel it start to work, because I wasn't getting so short of breath after several days past a lung drain.

      Prayers for a rapid response and no pain for Don!

      TracyLee

        • August 24, 2011 at 8:20 pm
        Lisa13
        Participant

        I'm so very happy that Don has been accepted into the trial. I hope and pray for all the very best in his treatment.

        TraceyLee – your story is truly a miracle.  Whether it's the result of the ipi, BRAF or both – you have a new found hope to believe that this melanoma will be gone!

        Best wishes!

        Lisa – Stage 4

        • August 24, 2011 at 8:20 pm
        Lisa13
        Participant

        I'm so very happy that Don has been accepted into the trial. I hope and pray for all the very best in his treatment.

        TraceyLee – your story is truly a miracle.  Whether it's the result of the ipi, BRAF or both – you have a new found hope to believe that this melanoma will be gone!

        Best wishes!

        Lisa – Stage 4

      • August 24, 2011 at 9:22 pm
      Phil S
      Participant
      Michelle So happy that Don was able to get this drug. Hoping and praying for good results. Keep us posted. Valerie (phil’s wife)
      • August 24, 2011 at 9:22 pm
      Phil S
      Participant
      Michelle So happy that Don was able to get this drug. Hoping and praying for good results. Keep us posted. Valerie (phil’s wife)
      • August 25, 2011 at 12:20 am
      glewis923
      Participant

      Best of luck ya'll !   I start next week at Emory-Winship in Hotlanta. under Dr. Lawson.  I had ALSO been previously Positive but had to do the redundancy thing-  held me up a least a week…..long story, but very greatful and Hopeful for ALL of us that we are finally getting something / somewhere.  Just hope my brain "matters" will also clear up.

      Love ,  Grady & Family.

      • August 25, 2011 at 12:20 am
      glewis923
      Participant

      Best of luck ya'll !   I start next week at Emory-Winship in Hotlanta. under Dr. Lawson.  I had ALSO been previously Positive but had to do the redundancy thing-  held me up a least a week…..long story, but very greatful and Hopeful for ALL of us that we are finally getting something / somewhere.  Just hope my brain "matters" will also clear up.

      Love ,  Grady & Family.

      • August 25, 2011 at 2:11 am
      JuleFL
      Participant
      Wonderful news! Hoping for great positive results.

      Jule

      • August 25, 2011 at 2:11 am
      JuleFL
      Participant
      Wonderful news! Hoping for great positive results.

      Jule

      • August 25, 2011 at 4:52 am
      JerryfromFauq
      Participant

      Interestiing. Very glad to see the acceptance of the GSK BRAF test.  Does the GSK BRAF test results specify which BRAF mutation his tumor was positive for?

          Praying for great results. (uickly)!

      • August 25, 2011 at 4:52 am
      JerryfromFauq
      Participant

      Interestiing. Very glad to see the acceptance of the GSK BRAF test.  Does the GSK BRAF test results specify which BRAF mutation his tumor was positive for?

          Praying for great results. (uickly)!

      • August 27, 2011 at 5:23 pm
      boot2aboot
      Participant

      well Michelle, you and Don deserve good news and complete response with minimal side effects and greater quality of life…HO!

      i am still waiting for my pills…should be sometime next week or following

      boots

      • August 27, 2011 at 5:23 pm
      boot2aboot
      Participant

      well Michelle, you and Don deserve good news and complete response with minimal side effects and greater quality of life…HO!

      i am still waiting for my pills…should be sometime next week or following

      boots

      • August 27, 2011 at 5:28 pm
      boot2aboot
      Participant

      well Michelle, you and Don deserve good news and complete response with minimal side effects and greater quality of life…HO!

      i am still waiting for my pills…should be sometime next week or following

      boots

      • August 27, 2011 at 5:28 pm
      boot2aboot
      Participant

      well Michelle, you and Don deserve good news and complete response with minimal side effects and greater quality of life…HO!

      i am still waiting for my pills…should be sometime next week or following

      boots

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