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Zelboraf then IPI then Taf/Mek – question?

Forums General Melanoma Community Zelboraf then IPI then Taf/Mek – question?

  • Post
    arthurjedi007
    Participant

      I was wondering if anyone has experienced a treatment path of Zelboraf then IPI then Tafinlar/Mekenist? Especially for those who took Zelboraf and it did not shrink anything and everything just increased.

      I'm very concerned that if Zelboraf did not shrink anything then taking Tafinlar/Mekenist will not help and may even mess up IPI. I've also seen charts where if a Braf stops working changing to a different Braf does not seem to help much. But in my case Zel did not stop working it just never worked according to my Dr.

      Currently I finished the regular IPI and get my 1st scan for it on Feb 3rd. I'm really hoping and praying this 1st scan the Dr said they don't put a lot of weight on is good. My Dr has not mentioned Tafinlar/Mekenist since starting IPI but before that he was all for it except at that time it had not been approved in combo. Thus he figured IPI was best for me. I know others have had great success with the Taf/Mek combo but I'm really concerned about that Zel, Ipi, Taf/Mek treatment path. I've never heard of anyone doing that path thus I'm posting this. The Dr did say if I increase on IPI he knows a trial where I can take PD1 (Nivo version) which I'm all for that if needed.

       

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        Mat
        Participant

          Arthur, a few notes (and, of course, I'm not a doctor):

          1.  Taf/Mek act differently than ipi.  There is a school of thought that if the Taf/Mek are working (killing tumors, which throws off antigens or whatever), it gives something for your ipi-treated immune system to better aim at.  Of course, no one really knows since trials combining these 3 meds have just recently started.  (And, the Tak/Mek need to "work" for the particular patient for this theory to hold.)

          2.  I've seen Catherine Poole at Melanoma International Foundation (a reliable source) report that there are (currently) no PD-1 trials for ipi refractory patients (those who have used ipi).  Hopefully your doctor is right, or maybe newer ones are opening?  To the extent you need to move to a trial, you should consider contacting her.

          Mat
          Participant

            Arthur, a few notes (and, of course, I'm not a doctor):

            1.  Taf/Mek act differently than ipi.  There is a school of thought that if the Taf/Mek are working (killing tumors, which throws off antigens or whatever), it gives something for your ipi-treated immune system to better aim at.  Of course, no one really knows since trials combining these 3 meds have just recently started.  (And, the Tak/Mek need to "work" for the particular patient for this theory to hold.)

            2.  I've seen Catherine Poole at Melanoma International Foundation (a reliable source) report that there are (currently) no PD-1 trials for ipi refractory patients (those who have used ipi).  Hopefully your doctor is right, or maybe newer ones are opening?  To the extent you need to move to a trial, you should consider contacting her.

            Mat
            Participant

              Arthur, a few notes (and, of course, I'm not a doctor):

              1.  Taf/Mek act differently than ipi.  There is a school of thought that if the Taf/Mek are working (killing tumors, which throws off antigens or whatever), it gives something for your ipi-treated immune system to better aim at.  Of course, no one really knows since trials combining these 3 meds have just recently started.  (And, the Tak/Mek need to "work" for the particular patient for this theory to hold.)

              2.  I've seen Catherine Poole at Melanoma International Foundation (a reliable source) report that there are (currently) no PD-1 trials for ipi refractory patients (those who have used ipi).  Hopefully your doctor is right, or maybe newer ones are opening?  To the extent you need to move to a trial, you should consider contacting her.

              kellygrl
              Participant

                My husband started on that path after 14 mos on Zel..   2 IPI infusions and it was just too slow acting for aggressiveness of his brain mets. So, started Tafinlar/Mekenist begining of Nov, so far so good. In the meantime my husbands onc sent us to Mayo Clinic for options.. etc. The melanoma specialist there said once this Tafinlar/Mek combo shrinks and/or stabilizes tumors to ADD IPI to treatment plan…   "load him up with ammo" were his words. Says can be a hard sell to insurance, but said my husband is high risk and with doctors letters.. etc..  it usually works. He said he will get the miles from IPI.

                Praying you get GREAT results on those scans!

                kellygrl
                Participant

                  My husband started on that path after 14 mos on Zel..   2 IPI infusions and it was just too slow acting for aggressiveness of his brain mets. So, started Tafinlar/Mekenist begining of Nov, so far so good. In the meantime my husbands onc sent us to Mayo Clinic for options.. etc. The melanoma specialist there said once this Tafinlar/Mek combo shrinks and/or stabilizes tumors to ADD IPI to treatment plan…   "load him up with ammo" were his words. Says can be a hard sell to insurance, but said my husband is high risk and with doctors letters.. etc..  it usually works. He said he will get the miles from IPI.

                  Praying you get GREAT results on those scans!

                  kellygrl
                  Participant

                    My husband started on that path after 14 mos on Zel..   2 IPI infusions and it was just too slow acting for aggressiveness of his brain mets. So, started Tafinlar/Mekenist begining of Nov, so far so good. In the meantime my husbands onc sent us to Mayo Clinic for options.. etc. The melanoma specialist there said once this Tafinlar/Mek combo shrinks and/or stabilizes tumors to ADD IPI to treatment plan…   "load him up with ammo" were his words. Says can be a hard sell to insurance, but said my husband is high risk and with doctors letters.. etc..  it usually works. He said he will get the miles from IPI.

                    Praying you get GREAT results on those scans!

                    dhrahn
                    Participant

                      Hi Arthur-

                      My husband has been on the same treatment as you.  Zelboraf did work for him though.  Both our oncologist told us that because he has already become tolerant to Z it would probably only give him 1-2 months of good treatment.  We just signed up for a trial at The Angeles Clinic in Los Angeles that is a new drug MSB0010455 or something similiar plus stereotactic body radiation.  We looked all over for PD-1 or PDL1 trials with no luck.   It might be something worth looking into?  It is for people that have already done ipi.  We are seeing Dr. Hamid and he has been awesome!  Best of luck to all of us!

                      dhrahn
                      Participant

                        Hi Arthur-

                        My husband has been on the same treatment as you.  Zelboraf did work for him though.  Both our oncologist told us that because he has already become tolerant to Z it would probably only give him 1-2 months of good treatment.  We just signed up for a trial at The Angeles Clinic in Los Angeles that is a new drug MSB0010455 or something similiar plus stereotactic body radiation.  We looked all over for PD-1 or PDL1 trials with no luck.   It might be something worth looking into?  It is for people that have already done ipi.  We are seeing Dr. Hamid and he has been awesome!  Best of luck to all of us!

                        dhrahn
                        Participant

                          Hi Arthur-

                          My husband has been on the same treatment as you.  Zelboraf did work for him though.  Both our oncologist told us that because he has already become tolerant to Z it would probably only give him 1-2 months of good treatment.  We just signed up for a trial at The Angeles Clinic in Los Angeles that is a new drug MSB0010455 or something similiar plus stereotactic body radiation.  We looked all over for PD-1 or PDL1 trials with no luck.   It might be something worth looking into?  It is for people that have already done ipi.  We are seeing Dr. Hamid and he has been awesome!  Best of luck to all of us!

                          JerryfromFauq
                          Participant

                            I was told in December that If I wanted to get in a PD-1 trial I would have to stope my current treatment that hs kept me staable for 5 years, try nd fil  Ipi  so that I would meet the PD-1 trial criteria to get the PD-1.  (NOPE, won't consider doing that.)

                             

                            JerryfromFauq
                            Participant

                              I was told in December that If I wanted to get in a PD-1 trial I would have to stope my current treatment that hs kept me staable for 5 years, try nd fil  Ipi  so that I would meet the PD-1 trial criteria to get the PD-1.  (NOPE, won't consider doing that.)

                               

                              JerryfromFauq
                              Participant

                                I was told in December that If I wanted to get in a PD-1 trial I would have to stope my current treatment that hs kept me staable for 5 years, try nd fil  Ipi  so that I would meet the PD-1 trial criteria to get the PD-1.  (NOPE, won't consider doing that.)

                                 

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