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Update on My Participation in Zelboraf/MEK Phase I Trial

Forums General Melanoma Community Update on My Participation in Zelboraf/MEK Phase I Trial

  • Post
    Eileen L
    Participant

    I just spent the whole day researching ways to convince my HMO, Northern Ca Kaiser, to pay for the testing, etc. associated with the Zelboraf/MEK Phase I trial I am trying to get into. I finally got some movement when my oncologist agreed to make the referral to UCSF. It still needs to go through the Outside Services review process, which occus at a local level.  What I needed was for a Kaiser doctor to initiate the referral and my oncologist was finally willing to do so.

    I just spent the whole day researching ways to convince my HMO, Northern Ca Kaiser, to pay for the testing, etc. associated with the Zelboraf/MEK Phase I trial I am trying to get into. I finally got some movement when my oncologist agreed to make the referral to UCSF. It still needs to go through the Outside Services review process, which occus at a local level.  What I needed was for a Kaiser doctor to initiate the referral and my oncologist was finally willing to do so. The factor that pushed him into changing his mind was the information that there were other Kaiser patients already enrolled in the study. I had to "encourage" someone at UCSF, where the study is taking place, to go through the files of the people currently enrolled to confirm that a Kaiser patient was amongst the enrollees. It was because of responses of people on this board, especially Harry, that I tried that strategy.

    Thanks to all of you who gave me encouragement and advice. As Charlie noted, I can be persistent when I have to be but as many of you know taking on the "system" when you're cancer is progressing is a difficult task. The war is not yet won, since the Outside Service review physician can still refuse the request. I had already started a complaint process through the Health Plan administration, which I just put on hold. If I need to reactivate it I will. I burned up the phone lines and my internet connection this morning, but I was able to get movement so it was well worth it.

    I think it is time for me to finally shower and get out of my bathrobe! Although maybe I will take a nap before that shower……

    Gratefully,

    Eileen L

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  • Replies
      deardad
      Participant

      Hi Eileen,

      My father is about to take part in this trial in Australia too. He has a PET next week and hopefully by next week he will have the new combo. He has been on Zelboraf for over 6 months and now has progression, they are hoping the MEK will stabalise things again.

      All the best let us know how you go.

      Nahmi from Melbourne

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      deardad
      Participant

      Hi Eileen,

      My father is about to take part in this trial in Australia too. He has a PET next week and hopefully by next week he will have the new combo. He has been on Zelboraf for over 6 months and now has progression, they are hoping the MEK will stabalise things again.

      All the best let us know how you go.

      Nahmi from Melbourne

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      deardad
      Participant

      Hi Eileen,

      My father is about to take part in this trial in Australia too. He has a PET next week and hopefully by next week he will have the new combo. He has been on Zelboraf for over 6 months and now has progression, they are hoping the MEK will stabalise things again.

      All the best let us know how you go.

      Nahmi from Melbourne

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      deardad
      Participant

      Hi Eileen,

      My father is about to take part in this trial in Australia too. He has a PET next week and hopefully by next week he will have the new combo. He has been on Zelboraf for over 6 months and now has progression, they are hoping the MEK will stabalise things again.

      All the best let us know how you go.

      Nahmi from Melbourne

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      deardad
      Participant

      Hi Eileen,

      My father is about to take part in this trial in Australia too. He has a PET next week and hopefully by next week he will have the new combo. He has been on Zelboraf for over 6 months and now has progression, they are hoping the MEK will stabalise things again.

      All the best let us know how you go.

      Nahmi from Melbourne

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      deardad
      Participant

      Hi Eileen,

      My father is about to take part in this trial in Australia too. He has a PET next week and hopefully by next week he will have the new combo. He has been on Zelboraf for over 6 months and now has progression, they are hoping the MEK will stabalise things again.

      All the best let us know how you go.

      Nahmi from Melbourne

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      aldakota22
      Participant

      Good for  you.hopefully you will not have to activate a complaint process.Praying that the combo trial will be your magic bullet.All the best .Keep us posted with your progress on both fights.  Al

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      aldakota22
      Participant

      Good for  you.hopefully you will not have to activate a complaint process.Praying that the combo trial will be your magic bullet.All the best .Keep us posted with your progress on both fights.  Al

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      aldakota22
      Participant

      Good for  you.hopefully you will not have to activate a complaint process.Praying that the combo trial will be your magic bullet.All the best .Keep us posted with your progress on both fights.  Al

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      WendyR3
      Participant

      Hi Eileen,  We're Kaiser Northern California, too, and doing the anti-PD1 trial at UCSF.  Our oncologist has always been willing to refer us out.  I think she's glad to be rid of us, but whatever – it works!  Keep plugging away.  And don't be afraid to change drs if you need to.  Good luck!

      Wendy

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        Eileen L
        Participant
        Thx Wendy. Would you mind sharing the name of your doc? I am considering changing docs since mine is so against referring me to UCSF! If you like email me at [email protected].

        Thx!
        Eileen L

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        Eileen L
        Participant
        Thx Wendy. Would you mind sharing the name of your doc? I am considering changing docs since mine is so against referring me to UCSF! If you like email me at [email protected].

        Thx!
        Eileen L

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        Eileen L
        Participant
        Thx Wendy. Would you mind sharing the name of your doc? I am considering changing docs since mine is so against referring me to UCSF! If you like email me at [email protected].

        Thx!
        Eileen L

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      WendyR3
      Participant

      Hi Eileen,  We're Kaiser Northern California, too, and doing the anti-PD1 trial at UCSF.  Our oncologist has always been willing to refer us out.  I think she's glad to be rid of us, but whatever – it works!  Keep plugging away.  And don't be afraid to change drs if you need to.  Good luck!

      Wendy

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      WendyR3
      Participant

      Hi Eileen,  We're Kaiser Northern California, too, and doing the anti-PD1 trial at UCSF.  Our oncologist has always been willing to refer us out.  I think she's glad to be rid of us, but whatever – it works!  Keep plugging away.  And don't be afraid to change drs if you need to.  Good luck!

      Wendy

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