Hello everyone.
I have not been around for a while as work has really occupied every waking second (when I'm not in the doctor's office). Mat contacted me to see how I was doing and suggested I post an update though.
For those who don't know me, I was diagnosed in 2011 as a stage IIIb, who progressed to stage IV in 2012. I've been through the full year of interferon, a full course of IL-2, a full course of Ipi (combined with Leukine), whole brain radiation, 2 rounds of SRS, and the BRAF/MEK combo- all of which failed miserably. Last June I was accepted into the Merk PD-1 (now Keytruda) expanded access program. Things went well until September when they found a mass that had "grown" rapidly in just a couple of months. One craniotomy later the results were that it was all dead tumor, and Keytruda had gotten FDA approval so we picked up where we left off with the infusions but happily at our home office instead of 6 hrs away. I have been getting the regular 3 week injections and scans every 4th dose since then.
For the most part, everything was showing relatively steady improvement (inside the brain and out) until the last 2 scans where things just appeared stable. I had another round of scans this past week and things are shrinking again. In the brain I'm down from multiple masses to just one that's almost invisible, in my body I'm down from over 30 mets to just 4 that are still visible and those have shrunk by nearly 2/3 since starting the infusions last June. Everyone seems amazed by what this drug has been able to do for me. One of the best parts is that I have few to now side effects and am able to live my life however I want to.
One day, I hope I can come off therapy and possibly consider having children, something my husband and I have not even dared think about until now. I don't know if it's the infusion getting into my brain or not, but something is, and I'll take it either way!
Best of luck to everyone out there fighting this battle! Keep fighting- find your way to win!
-Eva
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