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BRAF

› Forums › General Melanoma Community › BRAF

  • Post
    • September 16, 2011 at 5:29 pm
    justlittleoleme
    Participant

    Just curious, we are scheduled for surgery next Friday.  In all the reading I am doing, BRAF seems to be an important item to know.  Did you ask for the testing or did your hospital test automatically?

    Just curious, we are scheduled for surgery next Friday.  In all the reading I am doing, BRAF seems to be an important item to know.  Did you ask for the testing or did your hospital test automatically?

Viewing 5 reply threads
  • Replies
      • September 16, 2011 at 6:14 pm
      washoegal
      Participant

      In my case I was not orginally tested, however I was lucky enough that I decided to save the tumor for research/further testing.  My orginal Onc moved across the country, so I ended up with a different Onc at a differnt clinic and he requested a specimen for testing.  I would call your Onc. and ask, if they do not plan on genetic testing, if not request it.

       

      Mary

      Stage 3

      Braf Pos

      • September 16, 2011 at 6:14 pm
      washoegal
      Participant

      In my case I was not orginally tested, however I was lucky enough that I decided to save the tumor for research/further testing.  My orginal Onc moved across the country, so I ended up with a different Onc at a differnt clinic and he requested a specimen for testing.  I would call your Onc. and ask, if they do not plan on genetic testing, if not request it.

       

      Mary

      Stage 3

      Braf Pos

      • September 17, 2011 at 1:08 am
      Steve W
      Participant

      I suspect that genetic testing of melanoma tumors is common now.  I recommend you ask that a sample of the tumor be saved and ask for it to be tested for the Braf mutation.  

      When I started this journey in 2009, interferon and interlukin treatments were the norm.  I went through both.  After several recurrences, a sample of my initial tumor was tested and showed positive for the BRAF mutation.  I am currently in a clinical trial with GSK and am showing some good results with the mets in my lungs, liver and spleen.  Several new treatments that target this mutation have been approved over the last year and more will come in the near future.  Good luck to you.

        • September 17, 2011 at 7:29 am
        boot2aboot
        Participant

        do this immediately along with an HLA bood test

        boots

        • September 17, 2011 at 7:29 am
        boot2aboot
        Participant

        do this immediately along with an HLA bood test

        boots

        • September 18, 2011 at 2:18 am
        MariaH
        Participant

        I agree with Boots – test for B-RAF and any other mutations your oncologist is willing or capable of doing.  In the midst of your fight, there is nothing worse than having to wait to see if you have a certain mutation or not to start a therapy.  If your oncologist can't do it, they can refer you to who can.  Find out what you have to work with, and go from there.

        Best wishes to you.

        Maria

        • September 18, 2011 at 2:18 am
        MariaH
        Participant

        I agree with Boots – test for B-RAF and any other mutations your oncologist is willing or capable of doing.  In the midst of your fight, there is nothing worse than having to wait to see if you have a certain mutation or not to start a therapy.  If your oncologist can't do it, they can refer you to who can.  Find out what you have to work with, and go from there.

        Best wishes to you.

        Maria

      • September 17, 2011 at 1:08 am
      Steve W
      Participant

      I suspect that genetic testing of melanoma tumors is common now.  I recommend you ask that a sample of the tumor be saved and ask for it to be tested for the Braf mutation.  

      When I started this journey in 2009, interferon and interlukin treatments were the norm.  I went through both.  After several recurrences, a sample of my initial tumor was tested and showed positive for the BRAF mutation.  I am currently in a clinical trial with GSK and am showing some good results with the mets in my lungs, liver and spleen.  Several new treatments that target this mutation have been approved over the last year and more will come in the near future.  Good luck to you.

      • September 23, 2011 at 11:17 am
      JerryfromFauq
      Participant

      DNA Mutation is not automatically done, yet.  One day it will be, but not at many locations now. Specialized labs are required for conducting the DNA mutation tests.   The site of the melanoma primary can also play an  important part in which onco-protein and DNA mutation you should have.  For general melanoma locations BRAF is the most common, for others like Mucosal melanoma, Acral lentiginous melanoma (AL), and chronically sun-damaged (CSD) sites C-kit is oncoproteins and DNA mutations are likey to be present. 

      http://www.asco.org/ascov2/Meetings/Abstracts?&vmview=abst_detail_view&confID=65&abstractID=31944

      These are the two general categories of Mutations that Targeted drugs are available for.  There are other mutations that they are researching and working on targeted drugs for.  For the general melanoma patients without these two types of mutations,  IL-2 and Yervoy are the most successful treatments to date.

      • September 23, 2011 at 11:17 am
      JerryfromFauq
      Participant

      DNA Mutation is not automatically done, yet.  One day it will be, but not at many locations now. Specialized labs are required for conducting the DNA mutation tests.   The site of the melanoma primary can also play an  important part in which onco-protein and DNA mutation you should have.  For general melanoma locations BRAF is the most common, for others like Mucosal melanoma, Acral lentiginous melanoma (AL), and chronically sun-damaged (CSD) sites C-kit is oncoproteins and DNA mutations are likey to be present. 

      http://www.asco.org/ascov2/Meetings/Abstracts?&vmview=abst_detail_view&confID=65&abstractID=31944

      These are the two general categories of Mutations that Targeted drugs are available for.  There are other mutations that they are researching and working on targeted drugs for.  For the general melanoma patients without these two types of mutations,  IL-2 and Yervoy are the most successful treatments to date.

        • September 23, 2011 at 4:33 pm
        Steve W
        Participant

        Good info….thanks.

        • September 23, 2011 at 4:33 pm
        Steve W
        Participant

        Good info….thanks.

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