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Cycle 1, 2nd Dose, Days 3-4 of my CLL Trial: The Positive Fire Alarm Harbinger

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I am home primarily hiccup-free, though I still have sleep troubles due to steroids, but I want to share some of my magical thinking.

During my CAR-T therapy, I was woken by a fire alarm at the Residence Inn in Seattle, as I shared in my blog post from more than five years ago: Sleepless In Seattle: Fire Alarm at 3:40 AM.

That trial turned out pretty well for me, giving me a 65-month plus remission and pushing me towards trying this new way to get my immune T cells busy again, killing my cancer. 

Imagine my initial confusion and fear when I was awakened early in the morning of Cycle 1, dose 2, day 3 in the hospital by another fire alarm that, after some 30 minutes, was replaced with an all-clear notice. Relief, and then a sleepy smile with the magical thought that this Fire Alarm was clearly a second clarion call that my CLL would, again, soon be in a long and ignominious retreat.

I tried to get back to sleep, but no luck.

My bone marrow biopsy done just days before the trial, which I just got the results yesterday, showed that my CLL had grown from uMRD-4 in April 2022 to > 9% of my cells, so it is looking more and more like my time to strike was propitious and not wildly premature.

Blood counts are all as expected from the meds I am on. It’s too early to read any tea leaves.

Despite all my steroids, I did have a slight rash and some warm feelings from the tiny 0.8 mg dose of epcoritamab for my chronic lymphocytic leukemia. My slight immune reaction bodes well for the logic of ramping up slowly, perhaps lowering my risk of a more severe cytokine release syndrome (CRS) in the coming weeks as I advance to the full dose.

Rash and warmth are all resolved. There were no other side effects.

I think I am on a winning course and now have the fire alarm sign to prove it.

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.

4 Responses

  1. i am right there with you being a believer in magical thinking and praying that this second fire alarm is a wonderful portent of a long lasting remission. just a few questions….forgive me if i am not keeping straight the details of your treatments but i know you were on a clinical trial for what was to become ibrutanib and had a good seven years with this. i’m not entirely sure why you stopped taking the drug and i can’t help but wonder if you had stuck with it if you could still have keep the monster at bay a bit longer? i guess we’ll never know for sure but i can’t help but wonder….also have you ever tried your hand at venetoclax? surely you must have? how did that work for you if at all? i recall you have many of the bad boy markers of this disease and have been dealt a rough hand…..i don’t envy you having to be on high dose steroids they make me absolutely crazy for so many reasons. i hope you are managing to sleep better somehow and that this new cart t puts your cll in its place for a good long time

    1. Thanks for your kind words. I stopped Ibrutinib because it stopped working due to a mutation in PCG2. I have decided at this time to keep veneoclax in my back pocket and rely on clinical trials for various reasons unique to my CLL.

  2. Hi Brian I read each line with bated breath! My Loxo trial (after 40 mo.) has come to end re research team with WBC 15 ALC 10 and two axilla nodes showing small enlargement. As you know Dr Mato has moved on DrThompson is recommending O&V would recommend Bispecific but felt could not make trips to NYC. Since this I think I would like to try and qualify for called NIH Dr Weistner et all to see what I might qualify for having been going there 15 yrs to donate labs for research. My personal journey has changed with my husband Bob passing last July. I am now relocated to Silver Spring MD so geographically NIH is closer. I really want to maintain my independence so I will be carrying out the decision pretty much alone do you have any thoughts. I have been at this for 23 yrs high risk p53 unmutated and now as result of Loxo treatment have plg2(sp) mutation. Thanks Fran

  3. Good job Brian, your instincts are based on much experience.
    Jane and I are following this leg of your journey with our great interest and our prayers.


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