March 25, 2018
I was infused with my CAR-T cells on Thursday, March 22. Today is Sunday March 25 and I feel pretty good except for some fatigue, GI issues and lightheadedness. No fever and my counts remain good except for a creeping anemia that might be completely accounted for my daily blood draws and flushing on my PICC line.
The night of Day Zero was pretty awful. – Low grade fever, significant nausea, profound fatigue, and a feeling like I had been at the losing end of a bare first fight with a wrestle mania champion. I felt like I been repeatedly tackled by the frontline of a Super Bowl champion. Everything hurt. I ached in places I never ached in before or since and got almost no sleep.
But since then I have gradually if incompletely recovered. Still check my temp 2 x a day. Still at the clinic 7 days a week.
Now I ironically finding myself hoping to get sick, much sicker again. Although we know some patients never show clinical signs of Cytokine Release Syndrome (CRS) and still do well, there is a significant correlation between getting sick and getting better.
The peak time for CRS is over the next week, 5-10 days out though it can occur as soon as 3 hours and as late as 3 weeks after Getting the re-engineered cells. 90% of CAR-T patients here at SCCA/Hutch get hospitalized, usually for more than a week.
So if I get sick and Patty takes over the blogging for a spell, know that I am happy, that I am celebrating my misery- that it is a good thing.
In fact my biggest worry is that I might repeat my transplant experience of 10 years ago and reject the new T cells again. No pain, no gain.
Don’t want to do that.
So wish me ill for the next week, then quickly wish me a swift recovery
Stay strong. We are all in this together
Cherry Blossoms at UW quad March 24, 2018