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Cycle 1 of My Epcoritamab Trial for CLL is Done, and Thank Goodness

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My first 28-day cycle of the four-dose ramp-up of epcoritamab for my chronic lymphocytic leukemia (CLL) can’t fade away fast enough for my liking. Between my rock and my hard place, CRS (cytokine release syndrome or cytokine storm), and the steroids to prevent and manage CRS, it’s been a rough four weeks, including 12 days in the hospital, 16 days on high-dose steroids, and much of the month reeling from my lack of sleep and the side effects of going on and off the meds to prevent the side effects of other meds.

Six days after my latest injection, the first dose of full-strength epcoritamab, I was still running the occasional low-grade fever and too often feeling like I lost a battle royale with a kangaroo with an attitude. And that’s only stage 1 CRS.

I am feeling better this evening on my trial’s rollercoaster of ups and downs with no fever, significant pain, headache, chills, nausea, shakes, hiccups, stomach pain, reflux malaise, numbness, and tingling. I’m just tired and sore and generally punk.

I don’t want to jinx things, but maybe I am through the worst for real this time.

Tomorrow is a big deal. It is:

  1. My 1st outpatient dose
  2. My 2nd full strength dose of 48 mg
  3. The beginning of my second cycle
  4. I will have to have the last dose buffered with steroids unless I have grade 2 CRS.

All of this is major progress. All of this is small potatoes if this gives me a deep and durable response. Keep your eyes on the prize.

An unlucky 16% of lymphoma patients get CRS more than once. I now think I am at risk of being that 1 in 7 due to the prolonged CRS-like reaction to this last dose. Hope not. Regardless, this week should be the, as Winston Churchill said, “the end of the beginning.” To which I say, YAHOO!

Almost all of the CRS has historically happened in the first 28-day cycle, which used to include the second full-strength 48 mg. dose when CRS can still occur. With the stretching out of the ramp-up by adding another week with the 3 mg step-up, that second 48 mg. dose is the dose I receive tomorrow, now as the first dose of the second cycle.

After this week is done, the risks are low, and the path is straight with none of the adornments of add-on medications.

At my request, Dr. Danilov is switching my Benadryl to Claritin tomorrow, so I won’t lose four hours of my day snoozing and another four being dopey after I do wake up. It also means I can drive myself to and from City of Hope.

Also, I asked if he could reduce the prednisone to reduce the risk of CRS, and it turned out that he could and still stay inside the trial protocol. Not much of a dose drop, from 100 mg a day to

80 mg, but I’ll take it.

ACTION POINT: Ask in your trial if you are having an issue with meds can an “equivalent” but different drug be used, or can the dose be reduced. The answer is sometimes yes, but you must ask, as the change might only be allowed if the patient is not tolerating the recommended line of treatment. The squeaky wheel….  Remember, I was able to have my dexamethasone changed to prednisone last week.

I am gritting up for tomorrow. It will be a long day at the hospital, thankfully outpatient.

Stay strong. We are all in this together.


13 Responses

  1. Right there with you, Brain. Looking for every update with hope the worst is behind you. If there is any one I know who can weather this “storm” and achieve the goal of a good long remission with this protocol – it is you, my friend. A couple more (short) dances with this bear and you will be back to your life and family. Virtual hugs.

  2. Hi Dr Brian,
    Your comments are so helpful to all patients in clinical trials. I am sending this on to my cousin. She is in week 2 of a clinical trial for a recurrence of NSCLC but her symptoms are most everything you describe. The staff seems as though they are clueless to dealing and preparing her for the obvious AE. With the help of your blog, I have been able to ease her into reasonable expectations and uplift her spirits. Your kindness and gift for teaching reaches beyond …
    Thank you. Diana

  3. Thinking of you today and hope it goes better than expected. I hope you realize what inspiration you are to all CLL patients. Thank you so much for your generosity of knowledge and strong spirit. Hoping that this is “the end of the beginning” for those side effects.

  4. One heck of a journey Brian and one that I know you’ll complete with flying colours. Your blog is not only interesting but also humours. Fingers crossed for the coming weeks and months.

  5. Hi Dr. Brian, Congratulations on completing the first 28 days! I just came across your blog. My husband has been in the 48mg trial for Epcoritamab at MSK for some time now. That first cycle and the CRS is rough. Please reach out if there is any information that we can share from his journey.
    Regards, Marcia

  6. dear brian;

    your blogs are packed with helpful info even when you are personally faced with such difficulties. god bless you. i hope the worst is behind you. i realize i got confused with all this talk of crs i thought you were doing another cart plus a bispecific antibody but it seems its ‘just’ the bispecific antibody (not to minimize by saying this). my bad for crs is not just reserved for cart but also ventoclax and maybe others…..even though i’ve spent hours and hours reading and listening to videos, blogs articles etc. i’m sure there is so much i don’t know or grasp. thanks to you i feel myself to be a bit more of a smart patient who will hopefully get smart care.

  7. I am in my second week of the epcoritamab. I was told CRS usually happens with first full dose. I am running a low grade fever and my heart rate is at 100. I’m hoping it’s just a fluke but I’m afraid it might be a precursor for things to come. I’m also on venetoclax.

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