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Cycle 3, Dose 1 Day 4 Epcoritamab Trial for CLL (Chronic Lymphocytic Leukemia): All Good

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My last three doses of full-strength epcoritamab (48 mg) have been nonevents. There was some mild fatigue and itching the next day, but there is really nada to report. No cytokine release syndrome (CRS), for sure. All good.

Here’s the news I have to share.

My labs are all essentially within normal limits, except my immunoglobulins, which are low. My IGG has been in the 300s since starting the trial, which is not surprising as the antibody targets all B lymphocytes, and without B lymphocytes, you can’t make new antibodies very well. Immune globulins are essentially antibodies. My IGG was 527 at the beginning of this year, so it’s fallen quite a bit. The low end of normal is 700. I am definitely in the range where I could use extra protection against infections, especially as I head into the holiday season and ASH.

As a result, I am starting on IVIG, a pooled blood product made from other kind folks’ antibodies to provide passive immunity against whatever the many donors were exposed to and fought off, including COVID-19. The problem is that it is from blood donated about a year old, so it may not protect against the latest variants. I am booked for a 6-hour visit at City of Hope for the infusion. They are usually scheduled every 4-6 weeks.

I had an endoscopic examination of my upper GI tract due to my low iron counts to see if there was any source of blood loss. The doctor found some very mild gastritis and esophagitis that need no treatment and are completely benign but could explain the low iron. I had a normal colonoscopy three years prior, so I must repeat that.

Finally, the flow cytometry test used to look at the mix of lymphocytes found that my T cell population was normal, but my B cells were very low at < 25 per μl of blood. This is not the same as the flow cytometry for measurable residual disease (MRD). To be clear, there are persistent B cells in my blood, but not many. And not many B cells mean not many cancerous B cells.

I am also happy to report that I have only three more weekly doses of epcoritamab, then I get to switch to dosing every other week until late April, when I get to go four weeks between doses.

So all is good. I hope to continue not to have much to report until my subsequent scans to reassess my lymph nodes, likely in late November or early December. I am anticipating only more good news.

Expect fewer blog posts as the trial moves into a more pleasant, boring rhythm. I love boring.

Stay strong, we are all in this together,

Brian Koffman MDCM (retired), MS Ed
Co-Founder, Executive VP, and Chief Medical Officer
CLL Society, Inc.

19 Responses

  1. I am glad to hear you are getting to boring. I have been lucky enough in my 17 year journey with CLL to have been boring most of the way. It is definitely a good place to be.

  2. Glad to read that you are enjoying the gift of being bored. Thank you for sharing your experiences with us during your trial journey.

  3. So happy for you that the worse seems behind you and only good boring events in future. Appreciate your thoughts on Nurix-was just accepted in degrader trial 2017 and it is put on hold for manufacturing process update? Progressing on Loxo so hopefully this is a quick fix?

  4. Dr. Koffman…we are grateful for all you do for your fellow CLLers…the hope, knowledge and comfort you bring. We are praying for you and sending you healing energy your way ❤️🙏🏼

  5. This is all very fascinating Brian. I am excited to see the most desirable outcome for you.

    Thank You for all of your effort and sharing.

  6. Dr. Koffman, You are such an inspiration and I am so thankful to you for sharing your journey with us. It truly helps me feel that there is hope and that I am not alone. God bless you.

  7. Thank you Dr Koffman for being a leader and role model in our cll adventure. God bless you and bless this treatment you are taking.

  8. We have been following your journey! Thank you for sharing and we are so happy your doing better and responding to the new treatment!

  9. I just checked in to see how you’re doing and hope that no news is still good news. As you always have, thank you so very much for sharing this journey and lots of information. I wish you success in treatment, long life, and many more “boring”, non-news days. My CLL (& seven other subsequent cancers) have taught me to appreciate the in-between times to the fullest! Congrats on what appears to be a helpful treatment!!

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