“I have got to admit it’s getting better.” Lennon/McCartney
My dose of 100 mg of prednisone, a potent steroid, will calm a world of inflammation. And I was undoubtedly inflamed, but not for long, and I feel much better now. The odds are in my favor that the worst is behind me. The cytokine release syndrome, or CRS or less politely called cytokine storm, that had me shaking two nights ago with fever and a racing heart was technically only Stage 1 CRS, as mild as it gets. There was no drop in blood pressure or need for supplementation or other support to move it to a higher stage. Stage 1 or 2 CRS is typical for bispecific antibodies such as epcoritamab, where CRS tends to be milder than that seen with CAR-T.
The steroid to prevent and calm CRS still makes sleep a challenge, but with no hiccups and no pain to keep me awake, when I did sleep, it was sound.
While my need to be inpatient for future dosing is over, the protocol seems to demand a 5th week of steroids taken outpatient for the 2nd full dose of 48 mg. to knock back my chronic lymphocytic leukemia (CLL). Around 16% of lymphoma patients can get CRS recurrently, and it’s usually after this next dose, but I am betting I won’t be that unlucky 1 in 7. ICANS or neurotoxicity also can occur later, but it is even rarer. I will be alert and prepared for both, but I think I have endured the worst of any chomping that this BITE (bispecific T-cell Engager) is aiming at me.
I have been forcing myself to walk daily even when I am in no mood. Also, doing weight training, but not enough high-intensity interval training. It’s important and boosts immunity.
Saving the best news for last: It looks like it might already be working. Dr. Danilov isn’t committing, but he thinks one of my only two palpably enlarged nodes, the one in my right axilla (armpit), is softer and smaller. I agree. YAHOO! It’s working its magic within a day after a single therapeutic dose. My lymphocyte count has fallen, too, but the high prednisone dose can cause a transient dip of no clinical significance. So, I’ll need to see if it continues to trend down before celebrating that as a definite win. Yet there is still good reason to believe that my CLL is being nibbled away by my immune system with a helpful push from an engineered monoclonal antibody. My restaging MRI in October will reveal a more detailed story after five full doses. That result will be significant.
This is all I could ask for at this point. The nasty but tolerable 100% anticipated CRS is probably in the rearview mirror and hints at some early efficacy.
There are more trial labs tomorrow, but nothing I’ll see to report. My poor veins are taking a beating. The next subcutaneous injection is on Tuesday, so there will be fewer blog posts in the future. And that is a good thing.
Stay strong. We are all in this together.