6/28 back in the hospital

I’m back in the hospital and it sucks. Well the situation sucks, the hospital is a good thing - safe environment to take this new drug and a big room: I’m back in 8SA with a montlake view. Getta see the sailboats and crew teams practice throughout the day. I’ve been here for 3 days already but was too feverish and tired to write. My nurse last night was the first nurse I had in this unit back in 2012. We both remembered each other because I was her first patient in a brand new unit (I was the first patient in that room) and she was my welcome-nurse to UW, so memorable for me.  We’ve both aged and now have 2 year-olds. Just another clock of how time passes.

Now for the situation. After our trip to Mexico in March, my bone marrow came back with 0.06% cancerous cells. I was really hoping to get a year out of the CAR-Ts but I only got 6 months. Just like the transplant, 6 months remission again. The presence was startling cause I felt fine--you can’t feel cancer loads that low--but that’s why we were aggressive in checking before I had symptoms. We caught it at a low amount. My doctor, Dr. Cassaday, was looking for ALL-relapse enrollments in his clinical trial examining immune pathway blockers. It’s the first trial in the country to test Pembrolizumab with people with ALL. It has shown promising results with other cancers, like tumor cancers and melanoma. Considering all the treatments that haven’t worked for me, we both felt that if this drug was going to work for anyone with ALL, it would be me. Long story short, it didn’t work and on Friday the 21st we discovered my bone marrow had increased to 8% and we had to change course.

That course is Blinatumomab, a usually well-tolerated immunotherapy treatment.  Blina, as it’s called around here, is expensive and the team went to work right away to get insurance approval for both the hospital stay and the outpatient. It’s a 28-day constant infusion that starts in the hospital and then moves to self regulation at home. It shouldn’t be that much different than what I was doing post transplant, except a little easier cause the bags come primed and only need to be replaced every 7 days. The initial hospital stay is 10 days, and that is worked in to manage side-effects. That’s where I’m at right now. Day 4 of the hospital stay. I’ll get into more deets later, just wanted to get something up on the blog so peeps have backstory to what has been going on for the last 4 months.