BRAF
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BRAF

› Forums › Cutaneous Melanoma Community › BRAF

  • Post
    • April 12, 2018 at 1:30 pm
    Raco
    Participant

    Ok call me Dumb but this BRAF thing is getting me.  

    Which pathology report should tell me what is the makeup of my Melanoma ?   Who do I ask?
    I have 3 reports from the following should it be listed on any report?
    1. Dermatologist from the initial mole that sent it  to be biopsied?
    2. Surgeon Oncologist who did initial surgery that removed tumor and two lymph nodes. Sent to be biopsy?
    3. Surgeon Oncologist who did the second surgery to remove the rest of my lymph nodes Sent to be biopsy?
    4. Oncologist who has started me on Opdivo?

    I really really do not want to go through this, NONE of us should.
    All this information is mind boggling.
    I hate you Melanoma, you do not play fare be gone.

    Sorry for my rant

    Robbie

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  • Replies
      • April 12, 2018 at 1:44 pm
      gopher38
      Participant

      There are other people who will know much more about this than I, but I don't think they would routinely do the tests to determine if you were BRAF positive, unless you were at the stage where that was being considered as treatment, which I don't think it would be, at your stage.  That's my impression anyway.  I wanted this info too, since I thought it would be good info to have for the future, but I couldn't find it either.

        • April 12, 2018 at 1:51 pm
        Raco
        Participant

        thank you, maybe we may both get our answer of where to fine it

        • April 12, 2018 at 2:05 pm
        tedtell1
        Participant

        My onco told me that I was BRAF positive, but never saw it in any report. It was not in the path report I received so there must be an addendum or something the onco saw that I did not.

        Just a thought…

        Ted

        • April 12, 2018 at 2:18 pm
        BillB
        Participant

         They have to test the tumor to  determine the BRAF status. 

        Bill

        • April 13, 2018 at 12:54 am
        dessie
        Participant

        My oncologist upon our first visit performed the Braf gene test before i received  treatment as if it braf + its one treatment or braf – it is another.  Once complete, the decision was made for opdivo alone as mine was braf – stage 3a.

        i count myself as lucky for sure…now just dealing with insurances and the bills that adds insult to injury!! lol

        Good luck Rob.. you can do this..

        Dessie

      • April 12, 2018 at 2:32 pm
      Bubbles
      Participant

      These days BRAF testing should be routinely done…esp on metastatic melanoma…no matter if it is in distant lesions or in sentinel nodes…if they are positive for melanoma.  Whoever has the biopsy report on your nodes should know your BRAF status.  If it has NOT been done, it SHOULD be done on the material found in either your positive nodes or in the initial lesion.  They should still have some of your bits and pieces at the lab and can run it, if it has not been done already.  Your oncologist can check on all of the above and order it done if it has not been.

      Targeted therapy is the term used for BRAF inhibitors.  Targeted therapy works only if you are BRAF positive, which about half of melanoma patients are.  Additionally, we have learned that patients on targeted therapy have fewer side effects, as well as better and longer lasting responses when a BRAF inhibitor is combined with a MEK inhibitor and dosing is "intermittent"…meaning not a routine schedule like 3 pills a day, everyday…it is prescribed in a more random manner.  There are currently several different BRAF and MEK inhibitors available.  Here is a post I put together a while back that might be helpful:

      http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/braf-inhibitors-for-melanoma-dabrafenib.html 

      There is also a section on targeted therapy in this post:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html 

      Hope that helps.  I wish you all my best.  Celeste

        • April 13, 2018 at 1:03 pm
        Raco
        Participant

        thank you for input

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