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I Missed It by That Much: CR but No uMRD by 1 per Million

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After 18 months, the visits every four weeks for the epcoritamab trial to treat my CLL have become routine, with boringly normal labs and physical exams. The only excitement has been waiting for the results of the occasional scan and MRD testing by clonoSEQ.

My last MRI scan (I opted for the slightly lower resolution of MR to avoid the ionization radiation associated with CT scans) showed stability over the previous ten months with no enlarged nodes or other concerns. YAHOO!

Testing for measurable residual disease (MRD) through next-generation sequencing (NGS) with clonoSEQ revealed zero to one cell per million in the blood, which has been stable for the better part of the year. Very, very good. Close, but no cigar. As the clumsy hero Maxwell Smart of the 60s TV spy comedy GET SMART would say, holding his fingers close together: I missed it by that much.

So, my chronic lymphocytic leukemia is officially in complete remission (CR) with very low levels of detectable MRD. In fact, by standard testing by flow cytometry, I would be undetectable MRD-4 because my CLL is only detectable at the level of 10-6. As the morose Russian author Fyodor Dostoevsky would say: “I swear to you that too great a lucidity is a disease.”

What does it mean? Well, to start, I am the only one in the trial with a complete remission who is uMRD-4 and not uMRD-6. Between this test and the one 10 months ago, there was one clonoSEQ in September 2024 that showed the slightest increase to 1-2 cancer cells per million. Thankfully, that now seems to have been a statistically meaningless blip, not the start of an upward trend. Or maybe my increased high-intensity interval training exercises and change in supplements made a difference. I will never know.

Don’t get me wrong. Above all else, I am extremely grateful for my extremely low level of CLL. But I also recognize that while the data are thin, the dynamics of disease control with epcoritamab are not the same as seen with a BTKi, where it’s expected that small amounts of disease might hang around for years and be of no concern. The norm for those who do respond well in my trial is to keep pushing the cancer levels lower and lower.

Maybe my nearly two decades of CLL and its multiple therapies have hardened the toughest of my cancer cells, making them difficult to kill or to flush out of their tiny protective niches in the nodes or the bone marrow where they can hide from the big bad antibodies.

This is probably as good as it’s going to get.

However, the benefits of continued therapy are becoming less clear, especially when weighed against the real risks of infections and second cancers associated with my profound immune suppression.

Next August, it will be two years since I started the trial. That might be a good time to restage my CLL and decide if it’s quitting time. A long treatment-free glide is the most likely outcome, giving me a chance to get caught up on vaccinations, enjoy time off therapy, travel, and not be tied to hospital visits every 28 days.

And when I do relapse, because I certainly will eventually, I should have many good options. If the glide lasts a few years, and it might, I could even possibly restart epcoritamab “off label” outside of the trial.

But one step at a time. Right now, the main takeaway is to celebrate how well I am doing with my CLL remaining stable at such extremely low levels.

It isn’t perfect, but it’s pretty darn good.

Stay strong; we are all together.
Brian Koffman, MDCM (retired), MSEd

18 Responses

  1. Congratulations Dr. Koffman! Wishing you many years of remission. I am RR. My own MRD with flow cytometry, after 6 months of Obin and 21 months of Ven was negative

    SAMPLE: Peripheral Blood

    INTERPRETATION:
    NEGATIVE for persistent/recurrent CLL / SLL (see comment).

    I too, know it won’t last forever but I am dang happy for the time. Peace and strength to you. Thank you for sharing your journey.
    Karla Pamer

  2. Brian … thrilled with your attitude & results. Many of us will be following you down trails that you blazed … Lynn

  3. Thank you for the hope.

    Of course, I am wondering about your supplement regimen.

    I have been in treatment for one year (Zanubrutinib).

  4. Way to go, Dr. Kaufman! So happy for you, and appreciative of your continued courage in fighting your CLL! You’re helping pave another new way for the rest of us! Thanks for your updates.
    Best regards, Gerry T.

  5. Excellent news and wishing you many years in remission. And as someone who is yet to receive any treatment for my CLL, thanks for sharing your journey.

  6. I truly appreciate your updates. I finished Gazyva and Venetoclax September of 2023. My mrd is steadily rising. My oncologist repeats the clonoSEQ every three months. I stopped the Venetoclax at 5 cells per million. Now about at 65,000 per million. And I feel a neck node. I had many many very large( to me) neck nodes prior to my first treatment. I have two clones per testing. Possibly related to an initial finding of mutated and unmutated IGHV. Who knows. My oncologist in Boca Raton seems to be riding the wave of wait and watch again. I also see Dr Jacqueline Barrientos in Miami annually. Trying to enjoy the trip but it’s a real head game. I’m a now retired dentist so scientific and a bit perfectionist to say the least by nature. I certainly relate to everything you have shared. Hopeful we all have a normal life and can be happy and optimistic!

  7. Celebrating with you!! Thrilling to hear!! I hope you can take that break from treatment and just soak up so much LIFE with your lovely wife…maybe not even think of CLL until lab check-ins. Wishing you all the VERY BEST!

  8. Thank you for sharing. I’m sure this has been a battle, but you give everyone hope. Continue to push on!

  9. No matter how few CLL cells are found in the peripheral blood or marrow even zero no one is cured until the immunoglobulins return to normal levels. And that hasn’t happened at this time. So monthly 30-35 mg of IVIG are still required to avoid the three most famous words in the CLL world…infection, infection, infection. We have marvelous treatments even for 17p deletion patients but no cure.
    Michael T. Sweig

  10. I am so happy to read this wonderful news for your trial, especially being uMRD! Your detailed story is especially meaningful to me, as I’m looking at a 5th treatment, and Epcoritamab is likely to be offered as an option. Thank you so much for helping many others like me who are facing newer treatments. I will be printing your latest update and referring to it oftentimes.
    Best to you, and here’s to vaccinations/travelling come next August.

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