Something new..Very interesting
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Something new..Very interesting

› Forums › General Melanoma Community › Something new..Very interesting

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      • July 3, 2014 at 1:28 am
      leslieann79
      Participant

        That is interesting! I'm excited to see how far doctors are coming with treatment for later stage melanoma. I know I'll always have to take something to either keep the tumors from growing or to keep new ones from arriving. They are right, drugs eventually stop working as good. I've experienced that a few times. This BRAF gene is a pain in the you know what to keep under control!

        • July 3, 2014 at 1:28 am
        leslieann79
        Participant

          That is interesting! I'm excited to see how far doctors are coming with treatment for later stage melanoma. I know I'll always have to take something to either keep the tumors from growing or to keep new ones from arriving. They are right, drugs eventually stop working as good. I've experienced that a few times. This BRAF gene is a pain in the you know what to keep under control!

            • July 3, 2014 at 3:24 am
            Ginger8888
            Participant

              It's all still a little confusing to me,was diagnosed in Jan 2014 and was told i'm not BRAF and i am currently stage 3C..I did the 30 interferon and it failed so i'm doing my second dose of Yervoy tomorrow..Looks like the docs are coming closer to finding a "cure" hopefully..

              • July 3, 2014 at 3:24 am
              Ginger8888
              Participant

                It's all still a little confusing to me,was diagnosed in Jan 2014 and was told i'm not BRAF and i am currently stage 3C..I did the 30 interferon and it failed so i'm doing my second dose of Yervoy tomorrow..Looks like the docs are coming closer to finding a "cure" hopefully..

                • July 3, 2014 at 3:24 am
                Ginger8888
                Participant

                  It's all still a little confusing to me,was diagnosed in Jan 2014 and was told i'm not BRAF and i am currently stage 3C..I did the 30 interferon and it failed so i'm doing my second dose of Yervoy tomorrow..Looks like the docs are coming closer to finding a "cure" hopefully..

                  • July 3, 2014 at 11:45 am
                  William.F
                  Participant

                    First time I have responded with a question/comment here (on behalf of my spouse): Spouse diagnosed Stage 4 Metatstatic Melanoma in early January 2014, rec'd 4 treatments of ipi which appeared to be ineffective shortly following 4th infusion. Began taking BRAF/MEK combo on May 15, 2014…Immediate improvement in energy level and appetite.had lost 50 lbs off a small frame over 5 months. Scans on June 23 showed "significant' improvement to mets across the board. All 6 'visable' mets literly gone. Obviously encouraged beyond comprehension. We are excited for ourselves AND others like us that had no previous knowledge or experience with this disease. Question: What are the issues with keeping the BRAF under control? And for anyone currently on this combo (or anyone that has been on this combo for a period of time and no longer on it): What is the 'real time' effectiveness of this combo? Understand every patient is different, but my understanding is that the BRAF/MEK combo is effective for a period of time 'less than 12 months". Is this even close to being correct? And understand MK- 3475 is a possible 'follow-on' treatment should this combo lose its' effectiveness…Comments?

                    • July 3, 2014 at 11:45 am
                    William.F
                    Participant

                      First time I have responded with a question/comment here (on behalf of my spouse): Spouse diagnosed Stage 4 Metatstatic Melanoma in early January 2014, rec'd 4 treatments of ipi which appeared to be ineffective shortly following 4th infusion. Began taking BRAF/MEK combo on May 15, 2014…Immediate improvement in energy level and appetite.had lost 50 lbs off a small frame over 5 months. Scans on June 23 showed "significant' improvement to mets across the board. All 6 'visable' mets literly gone. Obviously encouraged beyond comprehension. We are excited for ourselves AND others like us that had no previous knowledge or experience with this disease. Question: What are the issues with keeping the BRAF under control? And for anyone currently on this combo (or anyone that has been on this combo for a period of time and no longer on it): What is the 'real time' effectiveness of this combo? Understand every patient is different, but my understanding is that the BRAF/MEK combo is effective for a period of time 'less than 12 months". Is this even close to being correct? And understand MK- 3475 is a possible 'follow-on' treatment should this combo lose its' effectiveness…Comments?

                      • July 3, 2014 at 7:50 pm
                      Ginger8888
                      Participant

                        I don't have anything i could help you with because i just finished my second dose of Yervoy today but i hope someone else can..Good luck..I'm still trying to understand all this stuff myself..I was diagnosed in Jan 2014 so i'm still kind of new here. sorry

                        • July 3, 2014 at 7:50 pm
                        Ginger8888
                        Participant

                          I don't have anything i could help you with because i just finished my second dose of Yervoy today but i hope someone else can..Good luck..I'm still trying to understand all this stuff myself..I was diagnosed in Jan 2014 so i'm still kind of new here. sorry

                          • July 3, 2014 at 7:50 pm
                          Ginger8888
                          Participant

                            I don't have anything i could help you with because i just finished my second dose of Yervoy today but i hope someone else can..Good luck..I'm still trying to understand all this stuff myself..I was diagnosed in Jan 2014 so i'm still kind of new here. sorry

                            • July 4, 2014 at 12:03 am
                            Bubbles
                            Participant

                              Here's a post I made on my blog that might help answer your questions:

                              http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/braf-inhibitors-for-melanoma-dabrafenib.html

                              I wish you and yours my best.  Celeste

                              • July 4, 2014 at 12:03 am
                              Bubbles
                              Participant

                                Here's a post I made on my blog that might help answer your questions:

                                http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/braf-inhibitors-for-melanoma-dabrafenib.html

                                I wish you and yours my best.  Celeste

                                • July 4, 2014 at 12:41 am
                                Ginger8888
                                Participant

                                  Thank you

                                  • July 4, 2014 at 12:41 am
                                  Ginger8888
                                  Participant

                                    Thank you

                                    • July 4, 2014 at 12:41 am
                                    Ginger8888
                                    Participant

                                      Thank you

                                      • July 4, 2014 at 12:03 am
                                      Bubbles
                                      Participant

                                        Here's a post I made on my blog that might help answer your questions:

                                        http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/braf-inhibitors-for-melanoma-dabrafenib.html

                                        I wish you and yours my best.  Celeste

                                        • July 9, 2014 at 12:10 pm
                                        rick1981
                                        Participant

                                          Hi,

                                          We're in a similar place, my wife was operated on right away after discovering melanoma on her back in January 2014. Proclaimed 'clean'. Then on June 4th diagnosed with mets, after 2 weeks of fever and severe weakness, and is now Stage 4 with problems in liver, lungs, bones. She started with the BRAF/MEK combo on June 14th and the visible mets just under her skin (size of a raindrop) disappeared within days. Blood levels also improved and she's back to being 80% of her healthy self. We haven't had a CT scan yet but sure it will take longer for the bigger mets to reduce in size. We're also looking at 'what's next' (ipi/nivo / Mercki pd-1?) but hope this combo will work for a long time to come. Heard about 2-3 years in some good cases. Let's keep each other posted. Good luck! Rick

                                          • July 9, 2014 at 12:10 pm
                                          rick1981
                                          Participant

                                            Hi,

                                            We're in a similar place, my wife was operated on right away after discovering melanoma on her back in January 2014. Proclaimed 'clean'. Then on June 4th diagnosed with mets, after 2 weeks of fever and severe weakness, and is now Stage 4 with problems in liver, lungs, bones. She started with the BRAF/MEK combo on June 14th and the visible mets just under her skin (size of a raindrop) disappeared within days. Blood levels also improved and she's back to being 80% of her healthy self. We haven't had a CT scan yet but sure it will take longer for the bigger mets to reduce in size. We're also looking at 'what's next' (ipi/nivo / Mercki pd-1?) but hope this combo will work for a long time to come. Heard about 2-3 years in some good cases. Let's keep each other posted. Good luck! Rick

                                            • July 9, 2014 at 12:10 pm
                                            rick1981
                                            Participant

                                              Hi,

                                              We're in a similar place, my wife was operated on right away after discovering melanoma on her back in January 2014. Proclaimed 'clean'. Then on June 4th diagnosed with mets, after 2 weeks of fever and severe weakness, and is now Stage 4 with problems in liver, lungs, bones. She started with the BRAF/MEK combo on June 14th and the visible mets just under her skin (size of a raindrop) disappeared within days. Blood levels also improved and she's back to being 80% of her healthy self. We haven't had a CT scan yet but sure it will take longer for the bigger mets to reduce in size. We're also looking at 'what's next' (ipi/nivo / Mercki pd-1?) but hope this combo will work for a long time to come. Heard about 2-3 years in some good cases. Let's keep each other posted. Good luck! Rick

                                              • July 3, 2014 at 11:45 am
                                              William.F
                                              Participant

                                                First time I have responded with a question/comment here (on behalf of my spouse): Spouse diagnosed Stage 4 Metatstatic Melanoma in early January 2014, rec'd 4 treatments of ipi which appeared to be ineffective shortly following 4th infusion. Began taking BRAF/MEK combo on May 15, 2014…Immediate improvement in energy level and appetite.had lost 50 lbs off a small frame over 5 months. Scans on June 23 showed "significant' improvement to mets across the board. All 6 'visable' mets literly gone. Obviously encouraged beyond comprehension. We are excited for ourselves AND others like us that had no previous knowledge or experience with this disease. Question: What are the issues with keeping the BRAF under control? And for anyone currently on this combo (or anyone that has been on this combo for a period of time and no longer on it): What is the 'real time' effectiveness of this combo? Understand every patient is different, but my understanding is that the BRAF/MEK combo is effective for a period of time 'less than 12 months". Is this even close to being correct? And understand MK- 3475 is a possible 'follow-on' treatment should this combo lose its' effectiveness…Comments?

                                              • July 3, 2014 at 1:28 am
                                              leslieann79
                                              Participant

                                                That is interesting! I'm excited to see how far doctors are coming with treatment for later stage melanoma. I know I'll always have to take something to either keep the tumors from growing or to keep new ones from arriving. They are right, drugs eventually stop working as good. I've experienced that a few times. This BRAF gene is a pain in the you know what to keep under control!

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