It’s been a year since I enrolled as the first chronic lymphocytic leukemia (CLL) patient in the epcoritamab clinical trial on August 14, 2023, and all is well. It’s hard to believe it’s been that long already.
I had to wait a day to receive my first subcutaneous injection mini dose of 0.16 mg, which was given on August 15, 2023. A very low dose was chosen to reduce the risk of any reaction, especially cytokine release syndrome (CRS). It represented a meager 1/300th of the target dose of 48 mg.
The buildup to full strength was painfully slow, taking almost two months, with dose escalations happening in the hospital every week and any potential reactions being managed by, in my opinion, wildly excessive doses of steroids that were much harder on me than the treatment itself. It was a rough start with much downtime, which you can read about in my earlier blog posts. But I got through it with my wife Patty’s support and the City of Hope team led by Dr. Alexey Danilov.
Once I reached the target dose, all the pre-medications, including the steroids, were stopped, and the injections into the skin of my belly were done outpatient. Life was immediately much better. Later, the shots were changed to every two weeks and in May 2024, to every four weeks. Yahoo! I was getting my life back.
When I was last restaged at about six months into the trial, my lymph nodes had all shrunk back to normal size. There was almost no measurable residual disease (MRD) detected down to one in a million cells in my peripheral blood by clonoSEQ. However, between 45-50 cancer cells per million were still detectable in my bone marrow. Flow cytometry was uMRD-4 in both the blood and marrow. Recent scans remain stable; routine blood tests are consistently within normal limits except for the expected low immunoglobulins. I have neither cancerous nor healthy B cells due to the epcoritamab that targets all my B cells. My T cells are also likely exhausted from the constant stimulation caused by the bispecific antibody that engages them. Therefore, I get replacement therapy with IVIG every six weeks to protect against infections. To say my immunity is compromised is a gross understatement.
Infections, including some fatalities, are being reported more often in the trial, reflected in the updated consent I was asked to sign this week that emphasized the increasingly recognized infection risk. I remain masked, careful and infection-free. I am still a Novid, but respiratory illness remains my biggest worry, especially with all the traveling that I am doing.
The muscle aches and pains that plagued me in the early months are mostly restricted to the few days after the shots. An annoying raised red local rash around the injection site and generalized itch for a few days still recur.
It’s a small price to pay for such a whopping knockback of my relapsed CLL. Some mathematical modeling suggests that for every log (tenfold) reduction of the CLL, the benefit is one to two more years of remission. I’ll take that.
Life is pretty much back to normal. I do my CLL Society work. I visit with family, though we don’t venture out too much socially due to my vulnerability. I walk a few miles at our local botanical garden most days. My workouts are back on schedule, and I’m pumping as much iron as I ever was before the steroids and treatments decimated my muscles.
Most days, my arthritis is more on my mind than my CLL, and that’s a good thing.
I am very pleased with my choice, with the care from Dr. Danilov and the team at City of Hope, and most of all, with the love and support of family and friends.
Clinical trials can be tough on the patient and their family, but they have served me well for the majority of my 19-year CLL journey. You might want to consider looking at clinical trials for yourself. I am hopeful that this trial intervention will be the best yet. As I am the trial trailblazer, there is no data yet on the durability of response, but there is reason to be optimistic. More patients have now enrolled, and results have continued to be encouraging. Recent results from similar CLL trials in Europe show high rates of complete responses and undetectable MRD.
You can learn more about the trial I am on by viewing: Safety and Efficacy Study of Epcoritamab in Subjects With Relapsed/Refractory Chronic Lymphocytic Leukemia and Richter’s Syndrome (EPCORE™ CLL-1)
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.
8 Responses
Doc,
You are a trailblazer and amazing. I have been continuously checking your blog for updates and am thrilled to read your great news.
If this is time limited therapy, I hope that some of your immunity may return.
May God continue to bless you and your family and thank you for your contributions all these years. I feel like you have been with me every step of the way in my journey.
So happy to read this update! I wish you continued outstanding results and success leading the charge!
Great blog. It’s good to be able to follow people like you who are on the cutting edge of CLL treatments and are among the first to give accounts of their experience. So this blog is very informative.
So glad to hear your response is good. I, too, have had CLL for 20 years and in treatment & clinical trials since 2012. As I tell anyone who’s interested, I’m beyond grateful for these new treatments which came along at exactly the right time. (I can’t believe I get to still “be here”!). But, there is always a cost. Still, so far, it’s worth it.
I’m very grateful for you and the educational system you’ve created for the benefit of all of us. What a wonderful human you are and an amazing thing to have done. Wishing you continued success and a good quality of life!
Reading and learning about your clinical trial journey with the new drug Epcoritamab is impressive. Thank you. I have been living with CLL for almost ten years. I experienced temporary remission after two cycles of BR with Rituximab in 2018. Now, I am looking for new treatment options as my CLL has returned.
It was reassuring to learn about the research on new drugs carried by our saviours, and I am grateful to these researchers. I pray for your full recovery.
Thank you for sharing this new stage of your incredible journey and for all that you have done for all of us with CLL.
Dr. Koffman, I wish you well with both your CLL, and immunity battles! I am so grateful that your CLL society has been providing much needed information in the 12 years since I was diagnosed with CLL! I am fortunate to have a cancer center nearby for blood draws, diagnosis, and infusions; but my choice of Venetaclax after a relapse from Chlorambucil in2021 was due to what I learned from CLL Society presentations. I know that my well-meaning local oncologist would have suggested that I start on Ibrutinib because that was the routine thing to do for CLL treatment. You certainly have had the hard road for treatment of your CLL! Keep fighting CLL, and sharing what you learn. You are still a doctor finding cures, and preserving life for many patients!
Thank you Dr. Koffman, truly appreciate your willingness to share all of your experiences over these many years back to your entering Car-T trial. You have been a major help for me as I progress through the last 14 years with CLL. All my best to Patty and the rest of your family. Continued best wishes and continued strength and recovery. All my best.