BRAF confusion

› Forums › General Melanoma Community › BRAF confusion

  • Post
    • June 8, 2013 at 6:10 pm
    ecc26
    Participant

      Hello,

      Hello,

      For those who haven't seen my earlier posts I'm a stage IIIb who progressed to stage IV last fall. I completed 3 courses of IL2 and all seemed to be going well until a week after the last course when new tumors started to sprout like weeds in my subQ. 3 or 4 weeks later a CT showed that despite having 15 new tumors, nearly all of them were subQ with only 2 very small masses on the surface of the lung. In preparation for exploring the possibilities of clinical trials an MRI was done which unfortunately found 7 brain mets. This has disqualified me from trials for the time being and the recommendation was to begin whole brain radiation (too many mets for surgery or gamma knife) and Ipi at the same time. This will begin on Monday.

      My question of the moment is regarding BRAF: Apparently both my local oncologist and the specialist who administered the IL2 each tested me seperately for the BRAF mutation. My local oncologist recieved a BRAF negative report while the specialist recieved a BRAF positive report. When my local oncologist asked the speicialist about the contradicting reports the specialist told him it happens about 15% of the time that testing different parts of the same tumor will give different results. Has this happened to anyone else? Does it have any implications on the possible effectiveness of the BRAF inhibitors? Any insight anyone has would be helpful as I would like to know if I can use the BRAF inhibitors should I need them.

    Viewing 8 reply threads
    • Replies
        • June 8, 2013 at 7:17 pm
        MichaelFL
        Participant

          Make sure thay both tested for the right and same mutation (V600E) and get another test.

          • June 8, 2013 at 7:17 pm
          MichaelFL
          Participant

            Make sure thay both tested for the right and same mutation (V600E) and get another test.

            • June 8, 2013 at 7:17 pm
            MichaelFL
            Participant

              Make sure thay both tested for the right and same mutation (V600E) and get another test.

              • June 8, 2013 at 7:57 pm
              POW
              Participant

                When were these 2 BRAF tests done? Were you tested for any other mutations like c-Kit?

                • June 8, 2013 at 7:57 pm
                POW
                Participant

                  When were these 2 BRAF tests done? Were you tested for any other mutations like c-Kit?

                  • June 8, 2013 at 7:57 pm
                  POW
                  Participant

                    When were these 2 BRAF tests done? Were you tested for any other mutations like c-Kit?

                    • June 9, 2013 at 11:39 pm
                    JerryfromFauq
                    Participant

                      Search for "positive BRAF" and for "negative BRAF"  Seems there are several tests out with one being more sensitive than the other.  We have several people that have had negative results on one test and positive results on the more sensitive one.  Find out which tes were performed by each Oncologists testing service 9and which service each used.)

                      • June 9, 2013 at 11:39 pm
                      JerryfromFauq
                      Participant

                        Search for "positive BRAF" and for "negative BRAF"  Seems there are several tests out with one being more sensitive than the other.  We have several people that have had negative results on one test and positive results on the more sensitive one.  Find out which tes were performed by each Oncologists testing service 9and which service each used.)

                        • June 9, 2013 at 11:39 pm
                        JerryfromFauq
                        Participant

                          Search for "positive BRAF" and for "negative BRAF"  Seems there are several tests out with one being more sensitive than the other.  We have several people that have had negative results on one test and positive results on the more sensitive one.  Find out which tes were performed by each Oncologists testing service 9and which service each used.)

                          • June 8, 2013 at 8:30 pm
                          ecc26
                          Participant

                            I don't know for sure since I dont' have the reports in front of me, but I believe both tests were done at the end of November/early December 2012,  before I began IL2 therapy for progression into stage IV. I have not yet been tested for NRAS or cKIT. They're on the list, but BRAF seemed the bigger deal at the time. Now that things are continuing to… let's just say not improve… NRAS and cKIT testing will likely happen and probably we (me and my local oncologist) will have those done through one of the specialists I've seen. Apparently the cKIT in particular is easy to get wrong. 

                            • June 8, 2013 at 8:30 pm
                            ecc26
                            Participant

                              I don't know for sure since I dont' have the reports in front of me, but I believe both tests were done at the end of November/early December 2012,  before I began IL2 therapy for progression into stage IV. I have not yet been tested for NRAS or cKIT. They're on the list, but BRAF seemed the bigger deal at the time. Now that things are continuing to… let's just say not improve… NRAS and cKIT testing will likely happen and probably we (me and my local oncologist) will have those done through one of the specialists I've seen. Apparently the cKIT in particular is easy to get wrong. 

                              • June 8, 2013 at 8:30 pm
                              ecc26
                              Participant

                                I don't know for sure since I dont' have the reports in front of me, but I believe both tests were done at the end of November/early December 2012,  before I began IL2 therapy for progression into stage IV. I have not yet been tested for NRAS or cKIT. They're on the list, but BRAF seemed the bigger deal at the time. Now that things are continuing to… let's just say not improve… NRAS and cKIT testing will likely happen and probably we (me and my local oncologist) will have those done through one of the specialists I've seen. Apparently the cKIT in particular is easy to get wrong. 

                                • June 9, 2013 at 1:35 am
                                NYKaren
                                Participant
                                  Hi,
                                  I was first tested negative, then 2 years later, positive. Obviously that’s not the case with you, but, firstly, it can depend on the test that was used, and secondly, I was told that rarely a negative test can be incorrect simply because that piece of tissue in the pathology was negative, but that a positive result cannot be incorrect. Personally, I’d go with the positive. If you are retested, have it done by the specialist, he will use the same brand test and that’s the result I would trust.
                                  Karen
                                  • June 9, 2013 at 1:35 am
                                  NYKaren
                                  Participant
                                    Hi,
                                    I was first tested negative, then 2 years later, positive. Obviously that’s not the case with you, but, firstly, it can depend on the test that was used, and secondly, I was told that rarely a negative test can be incorrect simply because that piece of tissue in the pathology was negative, but that a positive result cannot be incorrect. Personally, I’d go with the positive. If you are retested, have it done by the specialist, he will use the same brand test and that’s the result I would trust.
                                    Karen
                                    • June 9, 2013 at 1:35 am
                                    NYKaren
                                    Participant
                                      Hi,
                                      I was first tested negative, then 2 years later, positive. Obviously that’s not the case with you, but, firstly, it can depend on the test that was used, and secondly, I was told that rarely a negative test can be incorrect simply because that piece of tissue in the pathology was negative, but that a positive result cannot be incorrect. Personally, I’d go with the positive. If you are retested, have it done by the specialist, he will use the same brand test and that’s the result I would trust.
                                      Karen
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