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Taf/Mek in brain – works for me! S

Forums General Melanoma Community Taf/Mek in brain – works for me! S

  • Post
    DZnDef
    Participant

      Late February, after having stopped Taf/Mek for several weeks to see if Keytruda had finally kicked in, I had a 2.7cm tumor pop up in the brain along with five or six sub-centimeter tumors.  I immediately stopped Keytruda and re-started Taf/Mek.  A series of delays resulted in my having brain surgery April sixteenth.  The preop scan indicated the large tumor was 2.3cm and did not mention any other tumors (it was not comparative and was performed at a different facility than the February 27th scan.)  post op scan mentioned no tumors.  I asked my neurosurgeon if I would be scheduled for gamma knife (standard protocol with him for surgical site "clean up").  He said he wanted to wait for one more set of scans in two months to decide.  I felt I was being turned into a test case but I was not concerned as I was back on my wonder drugs.  Even if my neurosurgeon did not believe Taf/Mek could work in the brain, I did so I wasn't worried about putting off gamma knife.  I was hoping it might even not be necessary.  I had a fresh brain scan at a different facility but one I've used before this past Monday the 18th and gave them a CD copy of my February 27th scan for comparison.  Of course my neurosurgeon was on vacation all week but I had requested a copy be mailed to me.  I received it yesterday and the report noted no evidence of disease.  They listed every tumor from the February report as resolved (except for one resected).  So my brain is NED.  I'll find out about the rest of me in a couple of weeks.  So for those folks that have the BRAF mutation that are responders to Taf/Mek, my experience is that it works in the brain too.

      Cheers!

      Maggie

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    • Replies
        Julie in SoCal
        Participant

          NED Brain is awesome!!!  So glad to hear this news May the rest of your body follow!

          One legged happy dancing here in SoCal!

          Peace!

          Julie

            DZnDef
            Participant

              Thanks Julie!  Did they get that sucker out?  I am glad that Taf/Mek is working for me still and I'm happy to have it dissolve the tumors in my brain but I know I need something more to really be free of this maddening disease.  I truly believe there is something out there that will finish the job for me, just not sure what it is yet.  Very happy with Taf/Mek in the meantime.  The combo has worked for me for over a year and a half so far, well beyond the average so I am quite lucky.  I am a rather lazy person.  Maybe my cancer is too lazy to mutate again!  Thanks for the one-legged happy dance.

              Cheers!

              Maggie

            jennunicorn
            Participant

              That is great news Maggie!!

                DZnDef
                Participant

                  Thank you, Jenn.

                killmel
                Participant

                  Congrats Maggie! If you don't mind asking, where did you have your scans done?

                    DZnDef
                    Participant

                      Thanks Anon.  Before I say where I had my scans done, may I ask why you're interested?

                      Cheers!

                      Maggie

                      DZnDef
                      Participant

                        Also, Anon, which scans are you referring to?  The February 27th scans that found the scary stuff?  Or the preop and postop scans which were not comparative?  Or the June 18the scans that showed everything resolved?  Three different Imaging locations.

                        Cheers!

                        Maggie

                      sister of patient
                      Participant

                        That is great news Maggie!! Thank you for letting us know. It's exactly what I'm watching for now – results from anyone who's had recurrence!! I'm "all digits crossed" for the rest of you being NED too!!! Best thoughts and wishes always!

                        Barb

                          DZnDef
                          Participant

                            Hey Barb, thanks so much for your good wishes.

                            Cheers!

                            Maggie

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