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.
Brian
4 Responses
Thanks so much for doing this I hope you know how helpful it is for all of us with cll/sll. I of course do not know you but I’m in several groups of support that know you well. And I have seen several interviews you have conducted. Best of luck as things go on we will be following closely and sending our support!
Thank you for creating this website. It’s informative, education, and encouraging. Thank you for everything you do. Solider on!!!
Pat
Diagnosed with CLL / SLL (SLL) in May 2023
Patient- New York University Langone Medical Center
we must have been twins in another life! i also bring stretchy bands to do strength training during my hospitalizations. kuddos to you for your win in upwards despite the mental and physical challenges of steroids. i despise being on them though when it is necessary i have been grateful to have them. i’ve had several bad bouts of severe allergic reactions to various antibiotics including total body rashes that itched horribly for weaks and that was with both oraland IM steroid shots. i cringe to think how things would have gone without the steroid. hang tough my friend there is light at the end of the steroid tunnel!
Thinking of you and ADMIRING you every day. Thanks.