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.
Brian
6 Responses
as a fellow stepaholic i know the internal frenzy that would ensue from a step count of 29! but you’ve got your steps mapped out both in the hallways and in your treatment so you’ll be ahead of the game! i’m so familar with the crazy delays of hospitals. the pharmacists have to verify and triple check everything (which is good but takes so much time). i would come to the hospital with my medication list in hand, and it would take them 3 days sometimes more before all my meds (and unlike you i took many meds i’m embarassed put a number down) were rx’d and dispensed to me. i know you’ll knock that 6000 out of the park very soon. i used to play step games of estimating various hall pathways and seeing how close i could get on the actual count. at least you have patti to keep you company my hospitalization unfortunately were a solo affair.
brian; i’m curious as to how your itp would come back after you’ve undergone stem cell transplant and previous cart? my limited understanding of itp is that it is immune mediated but wouldn’t those immune cells have been wiped out? or is there some other mechanism involved? or maybe becuse the cll came back you again were capable of mounting an immune response against your platlets? i know your itp worries were a large part of why you are undergoing the cart again. i am curiouis about all of this. i tried to read a bit about itp but i thought you might best explain it to me if you can. i hope you don’t mind me asking this. do you think the cll coming back is your cart t cells transforming to cll again or is it from bits of your original cll cellls that didn’t get wiped out fully by the ablative treatments of the stem cell transplant/cart protocols?
. do you think the cll coming back is your cart t cells transforming to cll again or is it from bits of your original cll cellls that didn’t get wiped out fully by the ablative treatments of the stem cell transplant/cart protocols?
Thanks for the update Brian and thanks again for being a pioneer. Thinking of you constantly and sending love and prayers from the other side of the globe – if you have an ipad and haven’t seen it yet, my tip on netflix is 4 seasons of Fauda – you have to be able to be awake enough to read subtitles though as it’s all in Hebrew and Arabic!
Dr. Koffman: You are a brilliant, shining example to us all. Much deep gratitude to you for sharing your journey with us and letting your true light shine through it all. You are in my thoughts. All the very best to you.
Hope you are still managing this well! You have so much strength & courage- qualities that a lot of your fellow CLL friends will need to call on. Thankfully there are clinical trials that we can explore if existing therapies are not working for us.
Lots of healing hugs for you!!