BRAF

  • Post
    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?

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    • Replies
        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

          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

            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.

                boot2aboot
                Participant

                  do this immediately along with an HLA bood test

                  boots

                  boot2aboot
                  Participant

                    do this immediately along with an HLA bood test

                    boots

                    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

                      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

                      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.

                        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.

                          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.

                              Steve W
                              Participant

                                Good info….thanks.

                                Steve W
                                Participant

                                  Good info….thanks.

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