I have been mostly silent on my blog as there has not been much to report related to my phase 1 clinical trial for my relapsed chronic lymphocytic leukemia (CLL). No news is good news.
Changing the Pace of My CLL/ SLL Treatment
After 12 weeks of weekly subcutaneous shots in the belly, my 4th cycle switched to every second week two weeks ago. I was thrilled to skip a weekly trip to City of Hope for the first time since August, though I will more than makeup for it with three visits next week:
- One for the usual shot of epcoritamab and the associated lab and EKG.
- One for my IVIG (intravenous immunoglobulin). As expected, my immunoglobulin G (IgG) level has fallen with the fall of my B cells, increasing my infection risk. B cells make immunoglobulins or antibodies; all B cells, healthy and cancerous, are targeted by epcoritamab. The IVIG ups my low antibody levels and mitigates my infection risk.
- And one for my restaging with another set of MRI imaging.
But after my busy upcoming week, I will only get poked and jabbed every two weeks. In April, it drops to every four weeks.
Since week 7, I have had no reaction to the injections other than a small, raised, itchy red rash just below the injection site. Some loratadine and topical steroid cream, and it’s gone in a few days.
Other Non-CLL Health News
With two weeks between doses, I took the middle day to receive GSK’s RSV vaccine. However, I think my chances of getting any protective antibody response while on an anti-CD20 monoclonal antibody is nearly zero. Still, maybe I’ll get some protection from my T cells being exposed to the vaccine. I had a very sore, swollen red arm for four days post-vaccination, but nothing else. My poor wife had debilitating fatigue and malaise for two days.
I also made an appointment to see a cardiologist about some “atypical” chest pain that I am not at all worried about, but I would advise any 72-year-old patient of mine to have it assessed.
Restaging My CLL / SLL
There is no question that I responded quickly and profoundly to my bispecific T cell engager therapy with epcoritamab based on my first scans’ results. But as appealing as my rapid response is, and it being the mandatory precondition needed to ask for more of my therapy, what matters now is how the trend continues. The next scans and blood work should answer these questions:
- Will my nodes continue to shrink? At what pace? One is still enlarged, and many are borderline prominent.
- Will my already low normal absolute lymphocyte counts stabilize or drop even more?
- Will all my B cells, or at least all the malignant ones, become undetectable? They are already very low, less than 25 per microliter of blood, but still present.
- When will it be time to check for MRD in the blood? In the marrow?
- How does all this translate into my progression-free survival, my time to the next treatment, and, most importantly, to my overall survival?
It’s a great feeling that these questions are now on the table. I am hoping for and honestly expecting promising answers from the imaging. This is based on my trial experience so far and the research presented at iwCLL on others, much like me, taking epcoritamab for their relapsed CLL / SLL. The odds are in my favor.
Notice I don’t mention a cure. I am long over hoping for that from almost any CLL therapy. If a transplant and CAR-T didn’t cure me, I am not counting on an antibody, no matter how amazingly engineered and potent, to wipe out each and every CLL cell. I am okay with that. Long-term disease control is what I’m after. I’m kicking the can down the road until the next best treatment comes along.
My MRI results should be back just before heading to ASH 2023. I will share the news here.
Stay strong. We are all in this together.
Brian Koffman MDCM (retired) MS Ed (he, him, his)
Co-founder, Executive VP and Chief Medical Officer
CLL Society, Inc.