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Here is the post that I started from my hospital bed while in the midst of my Cytokine Release Syndrome (CRS) from my CAR-T therapy for my CLL (chronic lymphocytic leukemia).
“should NEEDINGING T LEsrt 2 yeRS mre than hundred pPtiinrts, but theese RE H JUAT GUESTS nd mY BE Wy off”
It trying to say nothing like this … needing at least 2 years and 100 patients more, but these are just guesses and may be way off.
First, the obvious: When you are out of it, you don’t always know how out it you are. I had long phone conversations that I barely recall.
Second, CRS and the related neurotoxicity can be subtle but still have profound effects on intellect and emotions. I was often tearing up and completely emotionally labile with little insight into my behavior.
Third, not just CRS from CAR-T, but CRS from other potent therapies such as flavoperidol and others with the risk of tumor lysis syndrome (TLS) and even some old school chemo such as fludarabine also can be associated with similar spells of confusions and unpredictability.
So here is my strong advice:
- Don’t do any work when you are sick with CRS or even from some chemo.
- Have someone you trust proof read everything you write.
- Avoid phone calls with anyone other than your care providers and loved ones.
Fortunately, almost everyone fully recovers. I have heard from CAR-T patients who were in long comas that are now 100% back.
So whatever work you are doing, it can wait.
Concentrate on getting well and recovering.
We are all in this together