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Braf/Mek duration and what’s next
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Braf/Mek duration and what’s next

› Forums › General Melanoma Community › Braf/Mek duration and what’s next

  • Post
    • January 21, 2016 at 4:25 am
    specka
    Participant
      What’s the typical plan? If there is response to the braf and mek.. then what? I have read it stops working after a few months. Do doctors typically start immunotherapy when that happens?
    Viewing 11 reply threads
    • Replies
        • January 21, 2016 at 9:21 am
        davekarrie
        Participant

          Great question, I started taf/mek in early November and having great response, we just started Keytruda in addition to Taf/mek last week and will likely go off Taf mek after another month or 2.  My feeling is to get off taf/mek before it stops working then you have that to fall back on. Seems to me most stay on taf/mek too long then it comes back more aggressive, I am not waiting for it to come back more aggressive.

          • January 21, 2016 at 9:21 am
          davekarrie
          Participant

            Great question, I started taf/mek in early November and having great response, we just started Keytruda in addition to Taf/mek last week and will likely go off Taf mek after another month or 2.  My feeling is to get off taf/mek before it stops working then you have that to fall back on. Seems to me most stay on taf/mek too long then it comes back more aggressive, I am not waiting for it to come back more aggressive.

              • January 21, 2016 at 6:42 pm
              Mat
              Participant

                I agree with this strategy. 

                • January 21, 2016 at 6:42 pm
                Mat
                Participant

                  I agree with this strategy. 

                  • January 23, 2016 at 2:20 am
                  jamieth29
                  Participant
                    I also think this is a very reasonable way to go.
                    • January 23, 2016 at 2:20 am
                    jamieth29
                    Participant
                      I also think this is a very reasonable way to go.
                      • January 23, 2016 at 2:20 am
                      jamieth29
                      Participant
                        I also think this is a very reasonable way to go.
                        • January 21, 2016 at 6:42 pm
                        Mat
                        Participant

                          I agree with this strategy. 

                        • January 21, 2016 at 9:21 am
                        davekarrie
                        Participant

                          Great question, I started taf/mek in early November and having great response, we just started Keytruda in addition to Taf/mek last week and will likely go off Taf mek after another month or 2.  My feeling is to get off taf/mek before it stops working then you have that to fall back on. Seems to me most stay on taf/mek too long then it comes back more aggressive, I am not waiting for it to come back more aggressive.

                          • January 21, 2016 at 9:25 am
                          emagdnim83
                          Participant

                            My father was on Zelboraf for three months (BRAFi only, not BRAF-MEK combo) and at three months, new mets appeared on his skin. As far as i know BRAF-MEK combo works a few months longer before the cancer gets resistant. He had to stop Zelboraf and after one week later got his first infusion of Nivolumab. Zelboraf did stop the mets from growing but didn't shrink anything. Nivolumab didn't work also because the mets literally exploded all over his body after BRAF-i didn't work anymore.

                            From this experience, i would advise to switch to immunotherapy while Inhibitors still work and maybe get it in combination for the first one or two infusions of immunotherapy to avoid the cancer from growing rapidly after stopping the inhibitor therapy.

                             

                            Hope it works better for you. Best wishes.

                             

                             

                            • January 21, 2016 at 9:25 am
                            emagdnim83
                            Participant

                              My father was on Zelboraf for three months (BRAFi only, not BRAF-MEK combo) and at three months, new mets appeared on his skin. As far as i know BRAF-MEK combo works a few months longer before the cancer gets resistant. He had to stop Zelboraf and after one week later got his first infusion of Nivolumab. Zelboraf did stop the mets from growing but didn't shrink anything. Nivolumab didn't work also because the mets literally exploded all over his body after BRAF-i didn't work anymore.

                              From this experience, i would advise to switch to immunotherapy while Inhibitors still work and maybe get it in combination for the first one or two infusions of immunotherapy to avoid the cancer from growing rapidly after stopping the inhibitor therapy.

                               

                              Hope it works better for you. Best wishes.

                               

                               

                              • January 21, 2016 at 9:25 am
                              emagdnim83
                              Participant

                                My father was on Zelboraf for three months (BRAFi only, not BRAF-MEK combo) and at three months, new mets appeared on his skin. As far as i know BRAF-MEK combo works a few months longer before the cancer gets resistant. He had to stop Zelboraf and after one week later got his first infusion of Nivolumab. Zelboraf did stop the mets from growing but didn't shrink anything. Nivolumab didn't work also because the mets literally exploded all over his body after BRAF-i didn't work anymore.

                                From this experience, i would advise to switch to immunotherapy while Inhibitors still work and maybe get it in combination for the first one or two infusions of immunotherapy to avoid the cancer from growing rapidly after stopping the inhibitor therapy.

                                 

                                Hope it works better for you. Best wishes.

                                 

                                 

                                • January 21, 2016 at 3:02 pm
                                Bubbles
                                Participant

                                  This post has a discussion by two top melanoma specialists about BRAFi (targeted therapy). You can listen to the webinar or check out my synopsis. Midway there is a link to more info re BRAFi…and at the end of that post…another link to information you may find helpful. 

                                  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/pick-your-poison-weber-and-agarwala.html

                                  I wish you well.  Celeste

                                  • January 21, 2016 at 3:02 pm
                                  Bubbles
                                  Participant

                                    This post has a discussion by two top melanoma specialists about BRAFi (targeted therapy). You can listen to the webinar or check out my synopsis. Midway there is a link to more info re BRAFi…and at the end of that post…another link to information you may find helpful. 

                                    http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/pick-your-poison-weber-and-agarwala.html

                                    I wish you well.  Celeste

                                      • February 18, 2016 at 12:28 am
                                      Lolabelly
                                      Participant

                                        This is a brilliant share! Thank you!

                                        • February 18, 2016 at 12:28 am
                                        Lolabelly
                                        Participant

                                          This is a brilliant share! Thank you!

                                          • February 18, 2016 at 12:28 am
                                          Lolabelly
                                          Participant

                                            This is a brilliant share! Thank you!

                                          • January 21, 2016 at 3:02 pm
                                          Bubbles
                                          Participant

                                            This post has a discussion by two top melanoma specialists about BRAFi (targeted therapy). You can listen to the webinar or check out my synopsis. Midway there is a link to more info re BRAFi…and at the end of that post…another link to information you may find helpful. 

                                            http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/pick-your-poison-weber-and-agarwala.html

                                            I wish you well.  Celeste

                                            • January 21, 2016 at 3:35 pm
                                            marta010
                                            Participant

                                              My husband has been on Tafinlar for 2+ years with stable or minor reductions to his tumor load so the duration clearly can vary from person to person.  He has never been able to tolerate the combo of Taf/MEK.  Treatment plan is to continue until resistance occurs and follow with PD1. 

                                              • January 21, 2016 at 3:35 pm
                                              marta010
                                              Participant

                                                My husband has been on Tafinlar for 2+ years with stable or minor reductions to his tumor load so the duration clearly can vary from person to person.  He has never been able to tolerate the combo of Taf/MEK.  Treatment plan is to continue until resistance occurs and follow with PD1. 

                                                  • January 22, 2016 at 4:09 am
                                                  sayres
                                                  Participant
                                                    I was on immunotherapy (nivo/ippi) for 3 treatments with no change in my mets (liver, lungs, lymph nodes), suffered major side effects so stopped treatment. I started on taf/mek combo at Thanksgiving. Stopped on Christmas eve due to severe side effects. Started back on tafinlar 2 weeks ago and I seem to be tolerating that with minimal side effects. Going to reintroduce the Mek again Jan 28th at half dose and see if I can tolerate. I haven’t had a scan since starting the combo at Thanksgiving but oncologist says that he can feel my liver is back under my ribcage which means the drugs are working. Apparently my liver was very distended to start with and was easily felt by my oncologist when he examined me and now he can hardly feel it. Thus, a remarkable improvement according to him. He stated that he has had patients on this drug combo for up to 4 years. I also asked him if immunotherapy repeat was in my future and he said it wasn’t out of the picture and that there were many options still out there.
                                                    • January 22, 2016 at 4:09 am
                                                    sayres
                                                    Participant
                                                      I was on immunotherapy (nivo/ippi) for 3 treatments with no change in my mets (liver, lungs, lymph nodes), suffered major side effects so stopped treatment. I started on taf/mek combo at Thanksgiving. Stopped on Christmas eve due to severe side effects. Started back on tafinlar 2 weeks ago and I seem to be tolerating that with minimal side effects. Going to reintroduce the Mek again Jan 28th at half dose and see if I can tolerate. I haven’t had a scan since starting the combo at Thanksgiving but oncologist says that he can feel my liver is back under my ribcage which means the drugs are working. Apparently my liver was very distended to start with and was easily felt by my oncologist when he examined me and now he can hardly feel it. Thus, a remarkable improvement according to him. He stated that he has had patients on this drug combo for up to 4 years. I also asked him if immunotherapy repeat was in my future and he said it wasn’t out of the picture and that there were many options still out there.
                                                      • January 22, 2016 at 4:09 am
                                                      sayres
                                                      Participant
                                                        I was on immunotherapy (nivo/ippi) for 3 treatments with no change in my mets (liver, lungs, lymph nodes), suffered major side effects so stopped treatment. I started on taf/mek combo at Thanksgiving. Stopped on Christmas eve due to severe side effects. Started back on tafinlar 2 weeks ago and I seem to be tolerating that with minimal side effects. Going to reintroduce the Mek again Jan 28th at half dose and see if I can tolerate. I haven’t had a scan since starting the combo at Thanksgiving but oncologist says that he can feel my liver is back under my ribcage which means the drugs are working. Apparently my liver was very distended to start with and was easily felt by my oncologist when he examined me and now he can hardly feel it. Thus, a remarkable improvement according to him. He stated that he has had patients on this drug combo for up to 4 years. I also asked him if immunotherapy repeat was in my future and he said it wasn’t out of the picture and that there were many options still out there.
                                                      • January 21, 2016 at 3:35 pm
                                                      marta010
                                                      Participant

                                                        My husband has been on Tafinlar for 2+ years with stable or minor reductions to his tumor load so the duration clearly can vary from person to person.  He has never been able to tolerate the combo of Taf/MEK.  Treatment plan is to continue until resistance occurs and follow with PD1. 

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