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:
- My 1st outpatient dose
- My 2nd full strength dose of 48 mg
- The beginning of my second cycle
- 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.