So far, so good. 11 hours post-dosing, labs show no hint of Tumor Lysis Syndrome (TLS), and more importantly, I feel fine with 100 mg of oral prednisone as premedication to lower the risk of Cytokine Release Syndrome (CRS) and ICANS (Immune effector Cell-Associated Neurotoxicity Syndrome. That, plus 50 mgs of IV Benadryl, snowed me for almost 6 hours.
I pushed to be switched to prednisone instead of dexamethasone, which is notorious for causing hiccups for some unfortunate souls like me. Also, it kept me up for days. So far, the change is working out well. Still, the next 24 hours or so are when any toxicities from epcoritamab, the bispecific to crush my chronic lymphocytic leukemia (CLL), are most likely to show up.
If all goes well tomorrow, I will be done with in-hospital treatments and head home for good. I still need steroids next week, but they’ll be outpatient. There will be many days of outpatient visits and labs.
I spent much time late last week preparing for this high-risk week of my 16-fold increase in the antibody: medically, physically, psychologically, logistically, and even spiritually. Like the very best preparations, none of them were needed.
My nervous side now worries that I haven’t gotten sick enough to know that the EPCOR is working on my CLL. But I did have a mild reaction last week, which is encouraging in a perverse way. I will just have to wait to see what my labs and imaging show over the next month.
After my long Benadryl-induced sleep, I forced myself to cruise the hospital corridors with my trusted IV. Patty joined me for one of my two long sojourns. Her picture of me above is from the closed STARBUCKS on the City of Hope campus. It’s not a pretty route, but it reminds me of walking ZAZEN, though that was outdoors with no IV pole. Both were contemplative and immune boosting.
It’s all good.
Stay strong. We are all in this together.
Brian Koffman
One Response
Seems like 1 week to taper down from 100mg of prednisone is pretty quik.