Happy New Year!
The beginning of a new calendar year is not a good reason to make radical changes, but it may mark a timely moment to reflect on what’s gone well and what could be better going forward.
My trial news is boring which is always good. My labs remain steady with a reassuringly low end of normal lymphocyte count so there is not much room for the cancer to hide. I am mildly anemic again 4½ months into the trial. I expect it’s just a blip, not a trend, so I will watch it.
My cardiac workup, including a stress echocardiogram, proved I was in good condition and demonstrated no evidence of cardiac disease other than my blood pressure rose too much with the peak of my heart rate. I am watching my BP more closely and might be augmenting therapy. Cancer patients are at higher risk for heart disease, and vice versa.
Over the last few weeks, my joint and muscle pains have significantly increased and spread across my upper and lower limbs and up and down my neck and back. It’s challenging to pin down a cause: increased frequency of weight training sessions, a very bad massage that made things much worse instead of better, general wear and tear and aging, damp weather, or increased inflammation from general activation of my T cells caused by the epcoritamab flaring up my already advanced widespread osteoarthritis. Muscle and bone pain are listed as one of its most common side effects, but I wonder if that listing is related to cytokine release syndrome (CRS). I didn’t have these pains for several weeks, and my doctors say they aren’t seeing them in other epcoritamab patients. That said, I had horrific musculoskeletal pain with my CAR-T therapy, a more potent T cell activator, and milder but significant problems with several other meds I have taken, including ibrutinib. My muscles and joints are my Achilles heel (pun intended). It’s no fun hurting, but I can live with it.
Results from my MRD (measurable residual disease) testing are pending. It’s early, but all seven CLL patients in the European study of epcoritamab who were in complete remission, like me, also achieved undetectable MRD with flow cytometry down to 1 in 10,000 cells. Fingers crossed.
Overall, despite some hills to climb, the timing and decision to start this particular trial where and when I did looks like a smart move with great promise. Others seem to agree. I may have been the first CLL patient in this trial, but I understand there is a significant waiting list for the trial now. I like to think my blogging played a role in improving awareness and accrual.
Looking toward the future, my first effort is to find a path to better pain control. It’s tough to ignore, and it keeps me awake. OTC meds aren’t cutting it. And I am already on a very stringent anti-inflammatory regimen. I’m researching my options.
Second, I need to figure out the best way to trace the progress of my trial, as I can’t rely on routine imaging or bloodwork to reveal continued improvements. MRD testing, including ClonoSeq, will be part of the evaluation, but at what cadence and when in the blood and when in the marrow?
The next big effort is gauging my safety regarding infection risk with increased engagement in the world. I survived ASH with 30,000 docs and others without catching the wave of increasing COVID-19, but I was carefully and constantly masked. IVIG also helped. I would love to discard my mask indoors, but I am not ready. Outdoors, I am much less worried. I restarted swimming laps at the local club to test if less walking helps my knee pain. My walking goal last year was to exceed 2022 by 1,000 steps a day, and I did that by almost 1,200. I plan to back off this year and see if conserving is truly preserving. I pushed myself pretty hard last year, which isn’t always good.
2023 is in the books. Expectations were generally exceeded. 2024 may or may not need some tweaking of my course. I am getting ready for all possibilities and am upbeat about the prospects.
Stay strong; we are all in this together.
Dr. Brian Koffman MDCM (retired) MS Ed
Co-founder, Executive VP and Chief Medical Officer
CLL Society, Inc.