Smart Patients Get Smart Care™

The World’s Leading Authority for Chronic Lymphocytic Leukemia Patients

I Am Not Alone in My Epcoritamab Clinical Trial for My Chronic Lymphocytic Leukemia (CLL)

In science and medicine, information is constantly changing and may become out-of-date as new data emerge. All articles and interviews are informational only, should never be considered medical advice, and should never be acted on without review with your health care team.

It’s been a challenging seven weeks since starting my trial of epcoritamab, a bispecific T cell engaging (BITE) monoclonal antibody.

I was counting on my immune system to rev up to the challenge and probably cause some significant collateral damage when attacking my chronic lymphocytic leukemia (CLL) through the predictable associated cytokine release syndrome (CRS). CRS was essentially 100% certainty based on the prior experience with epcoritamab in other CLL patients in the phase 1 trials. I chose this therapy because I had seen the benefits of my immune system when it triggered a much more severe CRS after my CAR-T treatment five-plus years ago, which gave me a very deep and durable remission. I was expecting and hoping for some CRS.

What I wasn’t counting was being kicked around by CRS repeatedly after cycles 3, 4, 5, 6, and 7. I had mild grade 1 with fever, chills, shakes, and night sweats that were unpleasant and disruptive but tolerable. As a result, we decided to hit pause for week eight and skip my dose that was due two days before boarding a plane so that I could safely fly to Boston for iwCLL with good odds that I wouldn’t have to bring a change of pajamas for every night gone due to drenching night sweats, and wouldn’t be febrile or shaking when speaking in front of hundreds of hematologists from around the world.

I like immune therapy. No DNA damage, no off-target effects, and hopefully no new mutations triggered. The last is less certain. Blood cancers have been recorded as losing the target of the antibody, CD20 in this case, as an escape mechanism from the benefits of CAR-T and monoclonal antibodies, leading to relapses.

Next week, right after returning from Boston, I am restaged and reimaged with MRI, and I should know whether this has been the success I believe it will be.

Right now, I am enjoying a respite that I hope will lead to a further calming of my CRS with my next dose and beyond. While no more CRS may not directly improve my ability to achieve a long remission, it would surely improve my ability to enjoy it. There is no doubt in my doctors’ or my mind that the CRS will eventually fade away. It can’t happen soon enough, but it is a distant second to my wish that the therapy is profoundly effective.

Stay strong; we are all in this together.


2 Responses

  1. Great to hear the news Brian and also your preserved optimism.
    Very good for you. (And us)

    Dr. David’s recommended that I go off Acalabrutinib For 7 days before my covid shot this coming week and 7 more days after it. Similar to the Improve trial in UK, in hopes of making some antibodies. It is daunting going off my life preserver. I am at day 4 off.
    Interestingly Jen Woyach recommended to stay on. I Geisel that’s the nature of testing new ideas.


  2. Seven weeks of CRS is certainly not an easy road, but you’ve kept focused on your destination and have managed to teach patients and other clinicians how best to make the journey. I’m in awe of your taking a break and flying to Boston to speak to the hematologists. When you’re at the podium, I hope you have a moment to feel the good will of those near and far, surrounding you.
    Travelin’ mercies,

Leave a Reply

Your email address will not be published. Required fields are marked *