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Over the last 5 days, Brian was often in excruciating pain, requiring high doses of Dilaudid to control. He was essentially immobile and needed extra help to get out of bed and to attend to normal bodily functions. However, after knocking back some of the CAR-T cells with a therapeutic regimen of dexamethasone, followed by tocilizumab, followed by a final dose of dexamethasone, he was able to get off all the opioid pain meds and start to walk again.
Although discharged from the hospital, he is still suffering from significant anemia, elevated inflammatory markers, and an instability of his temperature control mechanism, leading to chills and profound drenching sweats. Overall, he is much improved.
The great news that we received today is that his Day + 14 his blood work showed that not only were his CAR-Ts expanding but that there is no longer any evidence of CLL in his peripheral blood.
The journey to these dark and difficult places seems to have been worthwhile:
Brian says that there are 4 boxes that we should aim to check off in order to conclude that his CAR-T experience is the home run that we are looking for:
1 Did the re-infused CAR-T cells expand inside his body? We know that this has happened.
2 Was there CRS (cytokine release syndrome)? In Brian’s case, this has occurred once, possibly twice.
3 Are the CAR-T cells killing his CLL? We know that that has happened in the peripheral blood.
4 Will the killing be deep enough in all the measurable spaces that CLL likes to hide: the blood, the bone marrow, and the lymph nodes? We only have information on the peripheral at the moment, but the pattern is encouraging and there is much reason to be optimistic about the outcome of this difficult journey.
Stay tuned. Patty