Tuesday: A plan is set

As of yesterday, we now have a plan. I am officially on the CAR-t trial. I needed some disease to get on the trial, and the bone marrow from Friday was 1.5% leukemia cells, so I’m in. And it should stay that way unless I get some gnarly, consistent GVHD between now and CAR-t cell infusion (you can’t be on the trial with GVHD because it’s too risky for further inflammation and side-effects. And thankfully my leukemic load was lower than the 10% of 3 weeks prior, so my disease burden is less now, and the leukemia is at bay.
Yesterday I met with the attending doctor on immunotherapy, Dr. Shadman. I like Dr. Shadman, and we both remembered each other from my induction therapy at UW for the first go around, 6 years ago. He was a fellow then, on the ward rotation, and performed my first lumbar puncture and also did a couple bone marrows. He’s competent, direct, and has a decent bed-side manner. I’m fortunate it was him because he was a fellow under Dr. Shustov, so they have good communication, and I feel well listened to, and under good care.

While the cell collection day was planned for today, Dr. Shadman thought it was better to delay that because I had chemo just last week, which messed with my T-cell production. Therefore, my new cell collection day is August 1st. After collection, a nearby start-up, Juno therapeutics, will genetically reengineer (supe-up) my CAR-t cells so they recognize the cancer cell as foreign and thus attack it. Quick background on CAR-t therapy: they will do this through adding a CD19 protein receptor, or chimeric antigen receptor (CAR), that matches a CD19 protein on most leukemia cells, including mine. It causes the T-cells to attach and then kill the leukemic cells. The receptors are synthetic molecules that don’t exist naturally, but they can be added to my current T-cells through this cell engineering. After they have been made and then multiplied in the lab, I will have them infused back into me, where they continue to multiply, and kill abnormal leukemia cells. The infusion is currently scheduled for the end of August/early Sep.

I’m really happy about the delay bc it allows me to make some of the events I was looking forward to in August. As this would be my 3rd August out of the last 4 to be tainted and cut-short by a leukemia relapse, I’m happy that it looks like I can have a normal August, a wonderful month in the PNW. I can now make the two weddings: one in Portland for Briana’s friend Lydia, and one of my dear friends Anna and Louis, just down the street, where lots of my Pomona friends will be flying in. I’ll be available to use a ticket to Phantom of the Opera for my brother’s birthday, a musical I’ve been waiting to see for awhile and it’s is coming to Seattle for a week in mid-August. Then finally, Briana and I decided earlier in the year to take the plunge and schedule an entire week at the family reunion (in the past we’ve only done long weekends). It’s in Leavenworth this year, and I look forward to a relaxing week hanging with the fam, extended fam, and having many babysitters around for Alpen.

I’ll share more as the info comes in. For now, this is all I know. Not much is happening until the cell collection in early August, but I might add some things to the blog in between then and now