I checked into the hospital yesterday with no tests or anything scheduled. The sole rationale for coming in the day before was to enjoy an early start the next morning on the workup that needed to be done the same day and before my dosing. The lab and EKG would be done soon after daybreak with the plan to get my trial med into me before 10 AM. Then, I could go home the following morning after 24 hours of observation for CRS or other issues. Also, it’s way better than all those high-dose steroids used to prevent any reaction to my ramped-up dose of 3 mg of epcoritamab SQ, the experimental bispecific antibody I chose to decimate my chronic lymphocytic leukemia (CLL), early in the day if I want even to consider sleeping and having some kind of normal day and night equilibrium.
It wasn’t to be. First, the trial sample blood tubes went missing, and no orders could be released until they were found. Next, once all my normal or near-normal results were back, the sponsors and local team needed to sign off on proceeding. The pharmacist has to prepare the meds. Then, at the last minute, there was a question and some confusion as to whether I could reduce the excessive steroid dose. After some hurried consultations, it wasn’t reduced. Darn.
So, sometime after 4 PM, I finally was dosed. Thankfully, I slept like a baby for a few hours after the IV Benadryl, now wired from 16 mg of IV dexamethasone.
Labs are pretty stable pre-dosing and 6 hours later.
There are no reactions to note. I will be home tomorrow late afternoon after they check my labs 24 hours post-dose, so another day is mainly spent in the hospital. But I’ll be home before dark and able to walk and maybe swim.
Do you want to guess how many steps I took waiting in my room, hoping I would be medicated sometime soon? 29 steps. That’s it. Hospitals are unhealthy places. They encourage poor eating and inactivity, are home to dangerous pathogens, and interrupt sleep in all kinds of creative ways.
Still, I am grateful for this opportunity, and when I chose this trial, I accepted that I would get pretty much what was offered. There is little room for negotiation, especially when I am the first CLL patient. I get it. The staff here being so kind and thoughtful helps. And besides, these issues are trivial in the big picture. Whether it works and whether I can tolerate it matters in the long run.
With the steroids keeping me wired and wide awake, I will start my laps around the hospital. Yesterday, I got over 6000 steps with all my laps on the 4th floor at City of Hope. Let’s see if I can match that today. It will take about 16 loops around the corridors. It’s boring but immune-boosting.
It’s all good. I remain upbeat about my chosen course.
Stay strong; we are all in this together.