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There’s A Storm A Coming. But it’s Tropical, Not Cytokine

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I was just readmitted to hospital for my second dose in cycle one of epcoritamab to treat my relapsing chronic lymphocytic leukemia (CLL). Patty dropped me off early at the hospital to get ahead of the once-in-a-century southern Californian tropical storm bearing down directly on our home and City of Hope Medical Center. The county alert on our phones advised us to stay home unless ordered to evacuate. The roads are getting worse by the hour. Hurried drivers were already hydroplaning in front of us.

The worst of the rain and wind should be coming soon, so I am glad Patty is safely home, and I’m securely ensconced in my hospital bed after a few hours of waiting in the lobby for the actual physical bed to be delivered to the room.

I figure that counting on a bed late tonight or tomorrow freeing up was a gamble with the hospital full and a most sensible reluctance to send folks home into a storm with probable flooding.

Did I mention we also had a 5.1 earthquake in the area? We are fine, and so is the hospital, but the 5th floor, where I’ll be for the next two nights, was felt to be noticeably swaying, according to my nursing team. I was oblivious in the first-floor lobby.

If all goes according to plan and the trial protocol, I will receive 0.8 mg of the bispecific antibody targeting both my CLL and T-cells early tomorrow morning. While that is a 5-fold increase from last week’s dose of 0.16 mg, it is still only 1/60th of the target therapeutic dose of 48 mg. True, the chances are not zero, and it is best to be prepared, but the likelihood of my getting any kind of cytokine storm, now more genteelly called cytokine release syndrome or CRS, is remote. CRS is familiar to me from my CAR-T experience and occurs when the body is flooded with inflammatory enzymes (cytokines), occurring most often after immunotherapy. It is also seen with and has been a cause of considerable mortality and morbidity with COVID-19. It is always unpleasant and even fatal, but most of the CRS seen with epcoritamab occurs when I finally get the full dose, in my case, week 4. This week and next, any adverse events (hopefully nothing worse than last week’s hiccups and insomnia, both of which are now just a memory) I suffer are much more likely to be the result of the high-dose steroids (16 mg of dexamethasone) and the Benadryl given to protect me from CRS and other possible sequelae of the treatment itself none of which are going to happen.

That calculation all changes when I get the full dose. That’s when > 60% of the CRS occurs. And so far, 100% of CLL patients in the early trials had some degree of CRS, though it was always mild (grade 1 or 2).

So, the brunt of the tropical storm has not delayed the game plan through prepositioning of the subject (me) in the hospital, the earthquake was a wake-up jolt and nothing more, and CRS or cytokine storm, while possible, is not much of a worry. All good to go.

Stay strong. We are all in this together.


One Response

  1. Thank you for educating all of us while likely feeling pretty yucky. Prayers continue for a successful and CRS free trial process. You are so appreciated!

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CLL Society - Living With CLL

When appropriate, the CLL Society will be posting updates and background information on the present Coronavirus pandemic focusing on reliable primary sources of information and avoiding most of the news that is not directly from reliable medical experts or government and world health agencies.