Stage four and still here but bummer recurrence

Hi all,

Have not been active on the board much due to a string of great scans, working on physical therapy and wanting to pretend.  I think the last time I posted a status, I was doing quite well with all brain tumors resolved and supposed "remnants" in my lung(oldest tumors).  Well, I had great scans in October and even better on December 26th (not even remnants visible).  I was a super responder to Taf/mek and I was also on Pembro (Keytruda).  The idea being that Taf/mek would get me started, but not likely be a long-term solution given my tumor burden was moderate to lightly heavy when I started it so it was hoped that I would respond to Keytruda in the meantime for a longer-term effect.  After just three infusions of Keytruda at the end of 2016, I was taken off the taf/mek due to adverse effects (fevers, shaking chills).  The Keytruda had not yet taken effect as I immediately began to grow tumors again requiring a craniotomy (which really wasn't bad and went quite well) and a second round of gamma knife (first round was September or October 2016 when brain tumors were discovered.). I had a largish tumor in the right pre-frontal lobe that got angry after the first round of gamma knife and refused to go away.  I started calling it Tenacious T.  So in February of 2017, Tenacious T. got another round of gamma knife as well as a first-time shot for a few new ones at the time.  Back on Tafinlar/Mekinist combo at both the reduced dose of Tafinlar, plus ten mg. prednisone and a new schedule of two weeks on and one week off.  Also continued Keytruda.  Stellar results from July 2017 to December 2017. At that point, my oncologist wanted me off the combo to see if Keytruda was doing its thing.  Given my history of going off it before with rapid growth of a new brain tumor, I was nervous and requested if I could stop the combo closer to my next scans in case anything grew, it wouldn't have time to get too huge was my thinking.  He liked that idea.  So I stopped the combo altogether just over three weeks ago (six weeks before next scheduled scans).  Saw the doc for my three-week Keytruda infusion on February 27th but had developed symptoms making him insist on a head scan that day.  Tenacious T. was back and causing havoc to my left side.  Loads of fluid around the tumor so did not get Keytruda infusion and instead got a Decadron infusion.  Did not have radiologist report finished before I left.  Got a call that there were six more itty bitty ones.  Started Taf/mek again on Wednesday.  Very minor improvement since the visit.  Have an appointment with their brain radiologist this coming Wednesday (my brain guy is out all week).  Not sure if he will recommend gamma, whole brain or craniotomy.  Assuming Taf/mek comes through again, not sure what's next for possible long-term treatment.  What a wild ride.  Frustrating to be back at square one.  I'm sure something will work for me, just not sure what and need to stick around long enough to try the "next thing".  Everyone responds so differently to different things.  This is definitely not one-stop-shopping medicine.

Sorry to be a downer with this update.  I much prefer giving good news.  You might appreciate that I am a huge fan of Tafinlar/MEKINIST.  Hope you all beat this beast for good.

Oh, as an aside, I am in a trial where they try to detect melanoma in the blood.  It's blind so I don't know my specific results but I pretty much do now. They haven't drawn my blood for it since December so I don't know if it ended or I was kicked out or what.  Forgot to ask as this last visit was all about Tenacious T.

Cheers!

Maggie