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braf status change

Forums General Melanoma Community braf status change

  • Post
    braunerk
    Participant

      Has anyone had there braf status change from negative to positive. I had testing done in 2012 and it came back braf negative. They just did testing again and I came up postiive for braf 600e. Different tumor tested this time. I have done ippi and keytruda and am currently doing tvec but I am progressing. So should I do the braf drugs now? 

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    • Replies
        Polymath
        Participant

          Hmmm, makes you wonder if original, or this diagnosis is faulty.  A second check may be in order although I have no idea if BRAF status could actually evolve, and there are several mutations.  If confirmed, as you probably know, BRAF inhibitors are effective in reducing tumor burden quickly and effectively, but they tend to become ineffective rather quickly.  I was amazed by their immediate effect shrinking tumors in days, not weeks or months.  But progressed after just 3 months.  So if your tumor burden is high it could be a way to knock them down, which may then set the stage for another (most effective yet) immunotherapy, ipi/nivo combo.  I failed on both as single agents, but am having a partial response to the combo therapy on my smaller tumors.  Its worth a shot.  Best to you in the battle.

          Gary

           

           

          Polymath
          Participant

            Hmmm, makes you wonder if original, or this diagnosis is faulty.  A second check may be in order although I have no idea if BRAF status could actually evolve, and there are several mutations.  If confirmed, as you probably know, BRAF inhibitors are effective in reducing tumor burden quickly and effectively, but they tend to become ineffective rather quickly.  I was amazed by their immediate effect shrinking tumors in days, not weeks or months.  But progressed after just 3 months.  So if your tumor burden is high it could be a way to knock them down, which may then set the stage for another (most effective yet) immunotherapy, ipi/nivo combo.  I failed on both as single agents, but am having a partial response to the combo therapy on my smaller tumors.  Its worth a shot.  Best to you in the battle.

            Gary

             

             

            Polymath
            Participant

              Hmmm, makes you wonder if original, or this diagnosis is faulty.  A second check may be in order although I have no idea if BRAF status could actually evolve, and there are several mutations.  If confirmed, as you probably know, BRAF inhibitors are effective in reducing tumor burden quickly and effectively, but they tend to become ineffective rather quickly.  I was amazed by their immediate effect shrinking tumors in days, not weeks or months.  But progressed after just 3 months.  So if your tumor burden is high it could be a way to knock them down, which may then set the stage for another (most effective yet) immunotherapy, ipi/nivo combo.  I failed on both as single agents, but am having a partial response to the combo therapy on my smaller tumors.  Its worth a shot.  Best to you in the battle.

              Gary

               

               

              Kim K
              Participant

                Yes, Braf status can change.

                I don't know if within a tumor itself can over time, but melanoma mutates so frequently (and is why hard to kill) it isn't a surprise.  The testing was probably accurate.

                As our disease evolves it is always changing, the kinds of mets you had to start aren't necessarily the exact same tumor spread all over your body but rather variations on a theme and why some meds work for a while then stop, then if restarted can still have positive effect.  Our medications are a driver for selection of resistant melanomas.

                That being said, if it buys time and we can find a way to nip it in the bud to keep it from mutating along the way, awesome.  It is also why it may be better to agressively treat minimal tumor burdens before the nature of our tumors becomes very diverse.

                Your positive Braf status should result in shrinkage for those tumors carrying the mutation.

                You are not the first to have had that happen to, and it may have just given you another tool to push back your disease.

                Good luck.  Amazing insurance let you run a second set of tumor markers, most won't which is a crime.  We should be able to study new tumors and one's not responsing so we can attack with the appropriate weaponry.

                 

                Kim K
                Participant

                  Yes, Braf status can change.

                  I don't know if within a tumor itself can over time, but melanoma mutates so frequently (and is why hard to kill) it isn't a surprise.  The testing was probably accurate.

                  As our disease evolves it is always changing, the kinds of mets you had to start aren't necessarily the exact same tumor spread all over your body but rather variations on a theme and why some meds work for a while then stop, then if restarted can still have positive effect.  Our medications are a driver for selection of resistant melanomas.

                  That being said, if it buys time and we can find a way to nip it in the bud to keep it from mutating along the way, awesome.  It is also why it may be better to agressively treat minimal tumor burdens before the nature of our tumors becomes very diverse.

                  Your positive Braf status should result in shrinkage for those tumors carrying the mutation.

                  You are not the first to have had that happen to, and it may have just given you another tool to push back your disease.

                  Good luck.  Amazing insurance let you run a second set of tumor markers, most won't which is a crime.  We should be able to study new tumors and one's not responsing so we can attack with the appropriate weaponry.

                   

                  Kim K
                  Participant

                    Yes, Braf status can change.

                    I don't know if within a tumor itself can over time, but melanoma mutates so frequently (and is why hard to kill) it isn't a surprise.  The testing was probably accurate.

                    As our disease evolves it is always changing, the kinds of mets you had to start aren't necessarily the exact same tumor spread all over your body but rather variations on a theme and why some meds work for a while then stop, then if restarted can still have positive effect.  Our medications are a driver for selection of resistant melanomas.

                    That being said, if it buys time and we can find a way to nip it in the bud to keep it from mutating along the way, awesome.  It is also why it may be better to agressively treat minimal tumor burdens before the nature of our tumors becomes very diverse.

                    Your positive Braf status should result in shrinkage for those tumors carrying the mutation.

                    You are not the first to have had that happen to, and it may have just given you another tool to push back your disease.

                    Good luck.  Amazing insurance let you run a second set of tumor markers, most won't which is a crime.  We should be able to study new tumors and one's not responsing so we can attack with the appropriate weaponry.

                     

                    Polymath
                    Participant

                      I want to chime back in regarding KimK comments.  There may be a lot of truth to the scenario that "all tumors are not created equal".  I had radiation treatment to three separate, large, sub-cutaneous tumors.  All three reacted differently in regard to the time it took for them to fully/partially respond even though doses,  proximity, and sizes were roughly equal.  This puzzled even my radiation oncologist and was not expected.  I mention this in particular as you are getting T-vec which means you likely have these same sub-q tumors and I would add that radiation in combination with ipi/nivo alone or together has boosted overall systemic response rates in many.

                      Gary

                      Polymath
                      Participant

                        I want to chime back in regarding KimK comments.  There may be a lot of truth to the scenario that "all tumors are not created equal".  I had radiation treatment to three separate, large, sub-cutaneous tumors.  All three reacted differently in regard to the time it took for them to fully/partially respond even though doses,  proximity, and sizes were roughly equal.  This puzzled even my radiation oncologist and was not expected.  I mention this in particular as you are getting T-vec which means you likely have these same sub-q tumors and I would add that radiation in combination with ipi/nivo alone or together has boosted overall systemic response rates in many.

                        Gary

                        Polymath
                        Participant

                          I want to chime back in regarding KimK comments.  There may be a lot of truth to the scenario that "all tumors are not created equal".  I had radiation treatment to three separate, large, sub-cutaneous tumors.  All three reacted differently in regard to the time it took for them to fully/partially respond even though doses,  proximity, and sizes were roughly equal.  This puzzled even my radiation oncologist and was not expected.  I mention this in particular as you are getting T-vec which means you likely have these same sub-q tumors and I would add that radiation in combination with ipi/nivo alone or together has boosted overall systemic response rates in many.

                          Gary

                          ed williams
                          Participant

                            Hi Braunerk, just a little data from this years ASCO!!!!! Best Wishes!!! Ed    http://global.onclive.com/conference-coverage/asco-2016/longterm-data-deepen-dabrafenibtrametinib-benefit-in-melanoma

                            ed williams
                            Participant

                              Hi Braunerk, just a little data from this years ASCO!!!!! Best Wishes!!! Ed    http://global.onclive.com/conference-coverage/asco-2016/longterm-data-deepen-dabrafenibtrametinib-benefit-in-melanoma

                              ed williams
                              Participant

                                Hi Braunerk, just a little data from this years ASCO!!!!! Best Wishes!!! Ed    http://global.onclive.com/conference-coverage/asco-2016/longterm-data-deepen-dabrafenibtrametinib-benefit-in-melanoma

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