I am back at City of Hope. I am dead tired from the on-and-off roller coaster ride of excessive steroid doses, but the end of the dexamethasone is in sight. Eight more days of Decadron in the next 11, then unless I have some untoward reaction, I will stop getting dosed inpatient and needing premedication. YAHOO!
Tomorrow, I receive the 3rd step up to 3 mg of epcoritamab SQ for my chronic lymphocytic leukemia (CLL). 3 mg is only 1/16th of the target dose of 48 mg, but it is a 3.75 x increase from the prior dose last week of 0.8 mg. Originally, tomorrow would have been the full dose, but they amended the protocol to add another week to the ramp-up to lower the risk of CRS.
My scans and bone marrow biopsy results showed my decision to start the trial now was not premature, as my CLL is clearly on an upward trajectory. I can’t wait to get the therapeutic dose aboard and see what this BITE can chew up.
When I am awake enough at home, I try to walk, weight train, and especially get my heart rate up through HIIT (high-intensity interval training), as exercise should boost my immunity that the CLL and steroids are knocking down.
When I am an inpatient, I just make quick loops around my hospital floor with my IV pole, and I use a stretchy cord for some resistance work.
Despite my fatigue, I was still sharp enough to beat Patty at a game of UPWORDS in hospital.
And I am trying to finish all my writing and editing in the hours I feel well.
Overall, I’m not doing too bad so far.
Thanks, everyone, for the well wishes and kindly comments. I read them all, and they touch my heart.
Stay strong; we are all this together.