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B-RAF positive

› Forums › General Melanoma Community › B-RAF positive

  • Post
    • February 19, 2011 at 1:07 am
    KellieSue
    Participant

      Well, met with oncologist today and I did test positive for B-RAF. But…..apparently my insurance company now has to pre-approve me for a clinical trial. WTF? It's not like they will be paying for it, well I guess if I get the chemo arm they will. But c'mon. I wait 2 weeks for the results and then I have to wait again? If I'm denied I know my oncologist will just keep reapplying until they say Yes.

      Well, met with oncologist today and I did test positive for B-RAF. But…..apparently my insurance company now has to pre-approve me for a clinical trial. WTF? It's not like they will be paying for it, well I guess if I get the chemo arm they will. But c'mon. I wait 2 weeks for the results and then I have to wait again? If I'm denied I know my oncologist will just keep reapplying until they say Yes.

      I had a good long discussion about all my options and I feel confident going forward with B-RAF. IL-2 is not out of the picture but with the toxicity I faced with it and the long recovery I would not finish the round now, I would start over again. I'm not against it but right now I'd prefer to try something that might not make me so horribly sick.

      Another 8 weeks of ALT-801 might be an option also. DR. is trying to allow them to dose me at a higher dose than before. I responded both times I did an 8 week cycle.  

      So I guess waiting around again.

      Kellie(from Iowa) Stage IV since June 2008

    Viewing 5 reply threads
    • Replies
        • February 19, 2011 at 1:47 am
        Lori C
        Participant

          I am glad you have the b-raf option – the more options the better.  I think your plan makes sense.  The ALT801 people – the Altobioscience group – were quite reasonable the times I spoke to them.  They actually sped up getting the trial set up in Illinois when I explained the situation with Will.  Unfortunately his onc. didn't realize the chemotherapy he'd had disqualified him for it. 

          Wishing you excellent results and NED very soon!

          • February 19, 2011 at 1:47 am
          Lori C
          Participant

            I am glad you have the b-raf option – the more options the better.  I think your plan makes sense.  The ALT801 people – the Altobioscience group – were quite reasonable the times I spoke to them.  They actually sped up getting the trial set up in Illinois when I explained the situation with Will.  Unfortunately his onc. didn't realize the chemotherapy he'd had disqualified him for it. 

            Wishing you excellent results and NED very soon!

            • February 19, 2011 at 2:11 am
            glewis923
            Participant

              Dear Kellie Sue-

              Welcome to the mutant club! , which I suppose is a good thing.  I should be on IPI in 2 weeks, but I will see if I can get into the PLX4032 "Expanded Access Program".  Please keep us informed, as I'm unsure what to do, and would be curious to see how they decide to give you the B-raf inhibitor.  ie: "trial" or "expanded access".

              Take Care, Grady.

              • February 19, 2011 at 2:11 am
              glewis923
              Participant

                Dear Kellie Sue-

                Welcome to the mutant club! , which I suppose is a good thing.  I should be on IPI in 2 weeks, but I will see if I can get into the PLX4032 "Expanded Access Program".  Please keep us informed, as I'm unsure what to do, and would be curious to see how they decide to give you the B-raf inhibitor.  ie: "trial" or "expanded access".

                Take Care, Grady.

                • February 19, 2011 at 4:13 am
                lhaley
                Participant

                  So glad you have another option!!  I really don't understand why your insurance would have to pay if you got the chemo arm! It's still part of the trial and it's not like you wanted that arm.  Also, if they would have paid for that drug if you weren't part of a trial it should be approved very quickly.

                  Wishing you the best!

                  Linda

                  • February 19, 2011 at 4:13 am
                  lhaley
                  Participant

                    So glad you have another option!!  I really don't understand why your insurance would have to pay if you got the chemo arm! It's still part of the trial and it's not like you wanted that arm.  Also, if they would have paid for that drug if you weren't part of a trial it should be approved very quickly.

                    Wishing you the best!

                    Linda

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