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My CLL is Not Gone; Close, but Not Gone

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We always know that although my chronic lymphocytic leukemia (CLL) wasn’t detectable in my bloodstream after about six months in my epcoritamab trial, it almost certainly was still hiding below the level of detection. It may have disappeared from our vision, but it wasn’t all gone.

On April 10, 2024, my bone marrow biopsy told a different story. Even though a pathologist reviewed my slides and found no CLL, and my flow cytometry showed no clonal population of CLL cells, measuring down to approximately one in 10,000 cells, my clonoSEQ next-generation sequencing (NGS) did find between 44 and 50 CLL cells among a million. It was detectable using the most sensitive testing, albeit at very low levels.

The same clonoSEQ test had been essentially negative in my peripheral blood six weeks earlier, demonstrating how much harder it is to eradicate every last cancer cell from its protective niches in the marrow and, by the way, in the lymph nodes. I also had three more cycles of epcoritamab when the bone marrow biopsy was done compared to the blood testing.

CLL is relatively easy to eradicate by antibodies when it’s floating free in circulation with no supportive “nurse-like” cells protecting it.

Detectable CLL doesn’t change my plans. It doesn’t mean the Bispecific T-cell Engager (BiTE) isn’t working. It only means that driving the CLL down to today’s technology’s best undetectable level is taking longer. Just a few years ago, I would have been blissfully labeled as undetectable measurable residual disease (uMRD) by the best testing that science could offer at that time. And even today, despite some measurable disease, I am still classified as being in complete remission (CR). Officially, it’s a CR with detectable MRD. Strange, isn’t it?

There are three possible reasons why I still have a scant amount of measurable disease in the marrow:

  1. There was more disease in my marrow to handle when I started the trial. 20%-30% CLL involvement was a lot of cancer to deal with. That would translate into 200,000 to 300,000 cells per million, so the reduction, while not to zero, is still rapid and impressive. The difference between the amount of disease in the peripheral blood and in the bone marrow is similar to that seen in other blood cancers during treatment.
  2. It is working more slowly than I hoped it would.
  3. Some cells are resistant.

I not only hope, but I believe the first explanation is the most likely. There are no data to guide me. Remember, I am the first CLL patient in this trial and the first to get a bone marrow biopsy. Based on what happens with BiTEs in other blood cancers, it can take a year to reach uMRD in the bone marrow.

So, now I need to wait some six months to recheck. Patience is not my strong suit.

Starting in May, the frequency of my subcutaneous injections dropped from two to four weeks, so there will be lower levels of epcoritamab in my system, but it will also target much less cancer. The drug-to-target ratio can be important in immunotherapies.

Though mildly off-putting (I am constantly swinging for the fences), I remain upbeat about the trial and the likelihood of getting a durable remission. While this is not exactly the result I had hoped for, the disappointment is in the speed, not the direction of the positive changes.

Stay strong; we are all in this together.


18 Responses

  1. Brian, do you foresee BiTE tx’s becoming the standard of care for 2nd or 3rd line therapy.
    Obviously, it seems quite effective and if durable the toxicities might be a reasonable risk?

  2. Brian, So good to hear how well you are doing on this treatment and good to hear hope for another new treatment. Do you expect to sometime in the future to get off the drug?


  3. Excellent update, Brian. You are a (maybe THE) trail-blazer for advanced treatments. Slow but steady seems to be the nature of your journey. It is one we all hope will one day allow you to use that sacred word in cancer treatment . . . “Cured”.

    As always, the very best to you going forward and a special thanks for the superb support at CLL Society and for sharing your long and winding road of treatment with the CLL community.

    Stay Safe & Be Well

  4. Brian, so happy to hear about your news. Interestingly, I just got the good news yesterday that I am uMRD with a bone marrow biopsy included. They did not do the clonoSEQ test, so I won’t know the results of that. I was on Gazyva, then Ven for 2 years. But, as you pointed out- not gone, but close. I may have (who knows) some time before treatment is needed again. But, thanks to you and others doing these clinical trials, more treatments, and perhaps more effective treatments will be available in the future. Thanks, and all the best to your lovely spouse.

  5. Monsieur le Docteur Brian
    je vous suis de France et vous félicite ,vous êtes de ses personnes utile au monde grâce à vous j’ai
    pu comprendre ma maladie …(LCC ) (trisomie) (non muté) …1 MOIS TRAITEMENT CHIMIO 3 SÉANCES PUIS 8 ANS IMBRUVICA ;Traitement difficile à supporté car très grande fatigue.
    En France il n’y a pas de site comme le votre. merci Monsieur le Docteur Brian . SOINS

  6. Brian

    Thx for sharing.

    I similarly did not reach in bone marrow, despite having reached it in peripheral blood.

    One of my lingering questions is whether or not continue on the clock is going to completely eradicate what’s left in the bone marrow or whether it would be better to stop the Ven and try another class of drug Or just take Until I start to progress again.

    I’ll be very interested in what transpires in your near future.

    Thank you so much

    Mike Green

  7. i noticed typos

    not reaching uMRD in marrow despite having reached it in blood

    and on the clock should be on Ven. I’m 15 months into V+O for R/R after 3 cycle of FCR in 2018

    lastly, I’ve really started to contemplate quality of life and a break from treatment, especially after all of the long years of Covid as a more important goal than complete achievement of MRD.

    Thanks and good luck and God bless your treatment and journey


  8. So pleased how well you are doing on this treatment. However, the results of your bone marrow test has made me a little discouraged. In March my blood test showed “negative for residual chronic CLL / SLL at a sensitivity level of 0.01%.” I have been on Acalabrutinib (Calquence) for 9 years and am (was) elated by the results. However, I realize that doesn’t mean there are NO remaining cells, as was proven by your bone Marrow biopsy. I will keep your results in mind as I discuss my test results with my doctor at my next visit in August.

    1. I, too, have been on single agent but mine was ibrutinib since 2015. I recently asked for a MRD test. In peripheral blood, I was 0.01%, too. Five or six years ago, I was 0.02%. I have been on 140mg (1 pill a day) since end of 2018. Just changed to Zana, full dose, this month. Much more tired and platelets and RBC down a tiny bit. Creatinine and BUN up a bit, also. See doctor Monday.

  9. Thank you so much for sharing! You’re a magnificent role model for all of us. I admire you!

  10. Brian,
    Still, quite an amazing result. Seems like we need to buy segments of time to get further down the road, in hopes of the next great thing invented by the time if/when become resistant. You’re doing a fantastic job. Everyone is grateful to you. Keep punching!!

  11. Thanks for sharing your treatment journey and results. You are an example to all of us. Thank you for the vast amount of CLL information that you have shared with all of us. We are better informed patients. Many of us can say, “My CLL is gone, but not all gone.” Your words help us go forth with faith that we will continue to be able to function and accomplish things even if we have bumps, big or small, along the way.

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