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BRAF NEGATIVE

Forums Cutaneous Melanoma Community BRAF NEGATIVE

  • Post
    gemmy32
    Participant

      Hello everyone my mother in law has been diagnosed BRAF neg she has a tumour on her right lower lobe still awaiting her treatment. What's does it really mean BRAF negative am I right in thinking it's slow growing cells. Would surgery be the best option as she only has the one tumour an she had the skin cancer 10 years ago. She has been waiting 7 weeks now for her treatment. 

      Thanks 

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    • Replies
        mary1233
        Participant

          Hello Gemmy – Braf is a common mutation among melanoma patients – about 50% of patients carry that mutation and there are immunotherapy treatments that address that.

          If you are braf negative there are other mutations that you could have (NRAS or C-kit) just for example or you could be in the wild type category which essentially means none of the above. You need to ask you doctor what your mutation is, rather than is not, because the answer to that question determines appropriate treatments for you. Braf negative is an incomplete diagnosis and you need more information.

          Good luck and stay positive. Every month new information comes out of effective treatments. You just need to know which ones apply to you.

          I don't know where you are going for treatment, but I believe all melanoma patients should be a major cancer center that does research and runs clinical trials. These are the people who are up on the latest treatments and can get you into a trial because it is the best for YOU.

           

           

           

          mary1233
          Participant

            Hello Gemmy – Braf is a common mutation among melanoma patients – about 50% of patients carry that mutation and there are immunotherapy treatments that address that.

            If you are braf negative there are other mutations that you could have (NRAS or C-kit) just for example or you could be in the wild type category which essentially means none of the above. You need to ask you doctor what your mutation is, rather than is not, because the answer to that question determines appropriate treatments for you. Braf negative is an incomplete diagnosis and you need more information.

            Good luck and stay positive. Every month new information comes out of effective treatments. You just need to know which ones apply to you.

            I don't know where you are going for treatment, but I believe all melanoma patients should be a major cancer center that does research and runs clinical trials. These are the people who are up on the latest treatments and can get you into a trial because it is the best for YOU.

             

             

             

            mary1233
            Participant

              Hello Gemmy – Braf is a common mutation among melanoma patients – about 50% of patients carry that mutation and there are immunotherapy treatments that address that.

              If you are braf negative there are other mutations that you could have (NRAS or C-kit) just for example or you could be in the wild type category which essentially means none of the above. You need to ask you doctor what your mutation is, rather than is not, because the answer to that question determines appropriate treatments for you. Braf negative is an incomplete diagnosis and you need more information.

              Good luck and stay positive. Every month new information comes out of effective treatments. You just need to know which ones apply to you.

              I don't know where you are going for treatment, but I believe all melanoma patients should be a major cancer center that does research and runs clinical trials. These are the people who are up on the latest treatments and can get you into a trial because it is the best for YOU.

               

               

               

              arthurjedi007
              Participant

                Waiting 7 weeks for treatment seems odd to me. She needs to be seeing a melanoma specialist. For 1 tumor depending on where it is surgery is possible but not a complete solution in my opinion. In my opinion such a surgery or even without surgery an immunotherapy like yervoy and possibly followed up by keytruda is one viable treatment path. The other is a clinical trial. BRAF negative just means the tumor does not express that mutation thus the braf pills such as tafinlar/mekenist and zelboraf are not a treatment option. I'm not aware of any research associating BRAF negative to be slow growing but I could be wrong.

                Artie

                arthurjedi007
                Participant

                  Waiting 7 weeks for treatment seems odd to me. She needs to be seeing a melanoma specialist. For 1 tumor depending on where it is surgery is possible but not a complete solution in my opinion. In my opinion such a surgery or even without surgery an immunotherapy like yervoy and possibly followed up by keytruda is one viable treatment path. The other is a clinical trial. BRAF negative just means the tumor does not express that mutation thus the braf pills such as tafinlar/mekenist and zelboraf are not a treatment option. I'm not aware of any research associating BRAF negative to be slow growing but I could be wrong.

                  Artie

                  arthurjedi007
                  Participant

                    Waiting 7 weeks for treatment seems odd to me. She needs to be seeing a melanoma specialist. For 1 tumor depending on where it is surgery is possible but not a complete solution in my opinion. In my opinion such a surgery or even without surgery an immunotherapy like yervoy and possibly followed up by keytruda is one viable treatment path. The other is a clinical trial. BRAF negative just means the tumor does not express that mutation thus the braf pills such as tafinlar/mekenist and zelboraf are not a treatment option. I'm not aware of any research associating BRAF negative to be slow growing but I could be wrong.

                    Artie

                    Bubbles
                    Participant

                      Artie and Mary summed this up very nicely.  Being BRAF negative does make some of the BRAF inhibitors of little value.  But the immunotherapies (anti-PD1 and ipi) work just as well no matter the BRAF mutation.  I agree that seeing a melanoma specialist will be very helpful.   I also agree that the lack of speed with which the doc is progressing is a little concerning.   I wish you and your mother-in-law my best.  Celeste

                      Here is a post, which in the first part…explains what BRAF means…..unfortunately, it seems that the treatments then disussed would not help your mom-in-law if she is BRAF negative…..but there are many other options out there that will!!!  If you're interested:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/braf-inhibitors-for-melanoma-dabrafenib.html

                      Bubbles
                      Participant

                        Artie and Mary summed this up very nicely.  Being BRAF negative does make some of the BRAF inhibitors of little value.  But the immunotherapies (anti-PD1 and ipi) work just as well no matter the BRAF mutation.  I agree that seeing a melanoma specialist will be very helpful.   I also agree that the lack of speed with which the doc is progressing is a little concerning.   I wish you and your mother-in-law my best.  Celeste

                        Here is a post, which in the first part…explains what BRAF means…..unfortunately, it seems that the treatments then disussed would not help your mom-in-law if she is BRAF negative…..but there are many other options out there that will!!!  If you're interested:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/braf-inhibitors-for-melanoma-dabrafenib.html

                        Bubbles
                        Participant

                          Artie and Mary summed this up very nicely.  Being BRAF negative does make some of the BRAF inhibitors of little value.  But the immunotherapies (anti-PD1 and ipi) work just as well no matter the BRAF mutation.  I agree that seeing a melanoma specialist will be very helpful.   I also agree that the lack of speed with which the doc is progressing is a little concerning.   I wish you and your mother-in-law my best.  Celeste

                          Here is a post, which in the first part…explains what BRAF means…..unfortunately, it seems that the treatments then disussed would not help your mom-in-law if she is BRAF negative…..but there are many other options out there that will!!!  If you're interested:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/braf-inhibitors-for-melanoma-dabrafenib.html

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