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William.F

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      William.F
      Participant

        Taf/MEK has been working in our case since May of 2014…not offering advise; just reporting that in this particular case the patient has been "issue-free" for an extended period of time. Consideration was given to removal from Taf/MEK but the decision was made to continue and that remins the case today…If it'snot broke, ride it out until something changes (and hopefully for the better)… Best wishes…

        William.F
        Participant

          Wifw on TAF/MEK combo with Lombardi/Georgetown and Dr. Atkins…NED just at the 2 year mark…stay tough…

           

          William.F
          Participant

            Wifw on TAF/MEK combo with Lombardi/Georgetown and Dr. Atkins…NED just at the 2 year mark…stay tough…

             

            William.F
            Participant

              Wifw on TAF/MEK combo with Lombardi/Georgetown and Dr. Atkins…NED just at the 2 year mark…stay tough…

               

              William.F
              Participant

                Do not get too excited if the ipi does not work as well as you hope for…my spouse went thru the four infusions from February 2014 thru late April 2014…in early May there was an incident of blockage and on May 7 it was decided that after one week off all meds the BRAF/MEK combo would begin…we were devastated…and foolishly so. When one door closes, another opens…and each case is completely different (from what we have learned since this nightmare started in late 2013). BRAF/MEK treatment began May 15…on that date my spouse had an energy level of 2 on a scale of 1 to 10, (with 1 the lowest and 10 being her normal). Scans were done June 23, and the results were AMAZING!. Along the way she gained weight and her energy level went to 8…ipi did not work, but BRAF/MEK did…and at some point BRAF/MEK will stop being effective and the next option will be there for us…and hopefully you…so stay strong, keep positive…

                William.F
                Participant

                  Do not get too excited if the ipi does not work as well as you hope for…my spouse went thru the four infusions from February 2014 thru late April 2014…in early May there was an incident of blockage and on May 7 it was decided that after one week off all meds the BRAF/MEK combo would begin…we were devastated…and foolishly so. When one door closes, another opens…and each case is completely different (from what we have learned since this nightmare started in late 2013). BRAF/MEK treatment began May 15…on that date my spouse had an energy level of 2 on a scale of 1 to 10, (with 1 the lowest and 10 being her normal). Scans were done June 23, and the results were AMAZING!. Along the way she gained weight and her energy level went to 8…ipi did not work, but BRAF/MEK did…and at some point BRAF/MEK will stop being effective and the next option will be there for us…and hopefully you…so stay strong, keep positive…

                  William.F
                  Participant

                    Do not get too excited if the ipi does not work as well as you hope for…my spouse went thru the four infusions from February 2014 thru late April 2014…in early May there was an incident of blockage and on May 7 it was decided that after one week off all meds the BRAF/MEK combo would begin…we were devastated…and foolishly so. When one door closes, another opens…and each case is completely different (from what we have learned since this nightmare started in late 2013). BRAF/MEK treatment began May 15…on that date my spouse had an energy level of 2 on a scale of 1 to 10, (with 1 the lowest and 10 being her normal). Scans were done June 23, and the results were AMAZING!. Along the way she gained weight and her energy level went to 8…ipi did not work, but BRAF/MEK did…and at some point BRAF/MEK will stop being effective and the next option will be there for us…and hopefully you…so stay strong, keep positive…

                    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?

                      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?

                        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?

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