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
Hope you are in the 10% who does CAR-T gracefully. The hospital food there could be better. I think I ate ice cream instead.
Hope they have vegan choices.
Wishing you well oh, Pioneer One!
Looking forward to hearing from Patty for a few days while you fight the fight.
Appreciate the photos of your journey and your enjoyment of nature shoring up your spirit and love of the outdoors.
Feels weird to wish you ill, but John and I hope you get sick🤪 while you strong 💪🏻Tcells kick some booty. Then as soon as you get some proof they are doing the job may you feel great again. Sending our thoughts and prayers to you and Patty.
Fascinating to say the least. Here’s hoping you have some misery (not to severe) to celebrate followed by good news and high fives.