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PET scan results and BRAF questions

Forums General Melanoma Community PET scan results and BRAF questions

  • Post
    Linda J
    Participant

    PET scan results were good – there were no new tumors aside from the ones they already knew about. I've got good organs. 

    So the plan is to continue on with radiation (I'm in week three) and then have surgery to remove the remainder of the tumor and lymph nodes three to four weeks later. 

    PET scan results were good – there were no new tumors aside from the ones they already knew about. I've got good organs. 

    So the plan is to continue on with radiation (I'm in week three) and then have surgery to remove the remainder of the tumor and lymph nodes three to four weeks later. 

    They did mention today that I tested positive for BRAF – and then it was mentioned that maybe they will get me on the drug before surgery.  Does this make sense?  I don't know much about BRAF.   Can you do BRAF stuff after the cancer has been taken out?  How long do the BRAF drugs take?  I'm waiting to have an appointment with the medical oncologist in charge of clinical research.

    So, today wasn't as bad as I thought it was going to be :-)

    Live strong!

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  • Replies

      Hi Linda,

      I am on the Roche b-raf clinical trial and was lucky to get in the b-raf arm.  In order to qualify one has to have tumors that are measaurable so they can know whether or not the tumros are shrinking and the inhibitor is working.  In my case they are shrinking!  After the first 6 weeks the tumors showed signs of getting smaller.  The thing to remember about the b-raf is that so far it has not been a "complete response" therapy.  Eventually ones body stops responding and the melanoma begins to grow.  However, I think of this as time, time where they can work on different combinations with the therapies that are showing possiblities.  And time right now where I am back to living my "normal" life.  My next option will be compassionate use Ipi which my doctor in Basel is the adminstrator of.  (He is not in favor of me going to the USA for IL-2 but if my US insurance is still available to me, that will also be an option.)  BUT my body is going to respond to b-raf forever so no need to be thinking of these things right?  :)

      My side effects have been: fevers, ligament arthritis, iritis, skin rash.  All of which were bad in the beginning but they have cycled through mybody twice and I seem to have very few symptoms now.  Yippee!

      I hear there are clinicals out there with combo Ipi drugs.  Have you looked into this?

      Good luck to you. I agree with everyone on the board.  You need to have a doctor who "knows" melanoma, not just an oncologist who treats a few patients for skin cancer.

      Peace,

      Shelly in Switzerland

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      Hi Linda,

      I am on the Roche b-raf clinical trial and was lucky to get in the b-raf arm.  In order to qualify one has to have tumors that are measaurable so they can know whether or not the tumros are shrinking and the inhibitor is working.  In my case they are shrinking!  After the first 6 weeks the tumors showed signs of getting smaller.  The thing to remember about the b-raf is that so far it has not been a "complete response" therapy.  Eventually ones body stops responding and the melanoma begins to grow.  However, I think of this as time, time where they can work on different combinations with the therapies that are showing possiblities.  And time right now where I am back to living my "normal" life.  My next option will be compassionate use Ipi which my doctor in Basel is the adminstrator of.  (He is not in favor of me going to the USA for IL-2 but if my US insurance is still available to me, that will also be an option.)  BUT my body is going to respond to b-raf forever so no need to be thinking of these things right?  :)

      My side effects have been: fevers, ligament arthritis, iritis, skin rash.  All of which were bad in the beginning but they have cycled through mybody twice and I seem to have very few symptoms now.  Yippee!

      I hear there are clinicals out there with combo Ipi drugs.  Have you looked into this?

      Good luck to you. I agree with everyone on the board.  You need to have a doctor who "knows" melanoma, not just an oncologist who treats a few patients for skin cancer.

      Peace,

      Shelly in Switzerland

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      bill58
      Participant

      Linda,

      I am waiting to start the BRAF trials after a Pet/Cat scan detected Mel in my spine.  I don't knot if that scan was enough to measure it or if I will need an MRI to get a good measurement.

      Of course I am not a doctor, but if the purpose of the Braf medicine is to shrink/reduce/ELIMINATE the tumor then I don't know how the surgical oncologist can plan on removing the tumor before the Braf drug has had a chance to work.  I dont know of the clinical trial protocols will allow the tumor to be surgically removed before the end of of the trial   You should check into that with your oncologist.

      Good luck.

      Bill

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      bill58
      Participant

      Linda,

      I am waiting to start the BRAF trials after a Pet/Cat scan detected Mel in my spine.  I don't knot if that scan was enough to measure it or if I will need an MRI to get a good measurement.

      Of course I am not a doctor, but if the purpose of the Braf medicine is to shrink/reduce/ELIMINATE the tumor then I don't know how the surgical oncologist can plan on removing the tumor before the Braf drug has had a chance to work.  I dont know of the clinical trial protocols will allow the tumor to be surgically removed before the end of of the trial   You should check into that with your oncologist.

      Good luck.

      Bill

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