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Good News From My Clinical Trial for CLL as I Head to ASH 2023

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My second set of MRIs, done after more than two months, and eight more full-strength 48 mg infusions of epcoritamab (for a total of 11 doses at 48 mg) from the last imaging showed stability or more shrinking of all my lymph nodes in my neck, chest, abdomen, and pelvis. All nodes are now < 15 mm, under the upper limit of normal size, though some are still “prominent,” whatever that means.

With my normal lymphocyte count of 1.4, I think I am officially in complete remission (CR). The BIspecific T cell Engager antibody (BITE) seems to be continuing to knock back my chronic lymphocytic leukemia.

Side Effects from Epcoritamab for Treating CLL

Except for a small, well-circumscribed itchy rash that shows up at the injection site two days after the subcutaneous injection and disappears over the next 3-4 days, I have not had side effects from the therapy. Unless you count being stuck in traffic to and from the hospital as an adverse event.

Extra Protection Before ASH 2023 Needed for My Impaired Immunity from CLL and Epcoritamab

All CLL / SLL patients are immunocompromised, including me, but when you add a BITE, especially one that targets CD20, one’s immunity takes a second hit. My doctor has started me on immunoglobulin replacement therapy (IVIG) to replace the predicted fall in my antibodies. I get my next infusion two days before I leave for the American Society of Hematology Annual Meeting 2023, or ASH, held in San Diego this year, so I should be all topped off for the meeting. No doubt this precious pooled blood product that was likely collected about a year ago will provide significant but imperfect protection for COVID due to the changes in the virus over the last year and for other infections. I will also be masked and cautious for the five days in San Diego.

Heading to ASH 2023 to Report Latest CLL News

With my CLL well controlled, my IVIG aboard, and my epcoritamab injections now every two weeks, the timing is perfect. I am in good shape heading to ASH 2023. I will report on all the latest news and research from leading hematologists worldwide. This is undoubtedly the leading blood cancer meeting of the year. In-person attendance allows the CLL Society team to get close to the researchers and their groundbreaking work, have our questions answered, and share with you what you need to know now and what might be coming in the future.

Every year, I look forward to ASH as a great chance to meet CLL experts and other advocates worldwide and report on what I’ve learned. I remain vulnerable, but overall healthy, and optimistic about my ability to stay safe in a convention center with some 30,000 hematologists and others.

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.

9 Responses

  1. Doc,
    I am ecstatic to hear this great news during our holiday season. You are a fighter and a friend to us all.

    I look forward to reading your “bottom lines” from the reports at ASH.


  2. What incredibly great news! Thank you Dr. Koffman for being so generous with the rest of us and for your continued support for cll/sll patients beyond your own circumstances. I am very grateful.

  3. Awesome good news. I’m happy for you and your loved ones. Thank you for being such a beacon of hope for all of us. As you say, we are indeed all in this together, but your leadership and courage helps keep us together.

  4. A few years ago I made what you considered to be a generous contribution to the CLL society. You and your wife graciously called me on the phone on the phone (WOW) to say “thank you”. From that time on I felt I somehow knew you and was very concerned to learn that you were going into treatment again. It gives me great pleasure to learn you are doing well! (Me too, by the way. ) Keep on keepin’ on and thanks for all you do for all of us.

  5. I wish you the best in your new treatments. Thank you for being such a leader in this area. So many people have benefitted from your experiences. I hope you have a great 2024.

  6. I can’t thank you enough for your work in this field, the updates about your own journey, and for being a support to all of us traveling this uncertain road.

  7. I just hope that you realize how much hope you give to those of us with troubling mutations by sharing your journey and successes.

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