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Day + 19 CAR-T for CLL (chronic lymphocytic leukemia) Exiting a State of Torment and Falling into the Arms of Good News

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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.

Every patient participating in a clinical trial has the potential to bring new considerations.
BK’s situation will no doubt prompt much inquiry down an avenue not yet considered.
We are hopeful that when BK is feeling stronger we can fill some of the gritty details and background science of the challenges of the last few days.

Stay tuned. Patty

7 Responses

  1. Brian, Patty, & Family,
    Relieved to hear positive report, but so sorry for the pain, fevers, etc., that you have endured. As you tell us, “Stay strong, we are in this together.” Consider yourselves and your CLL team as true and brave pioneers searching for the “cure”. Thanks, too, for names of meds needed and specifics of ups & downs.
    Continued prayers for your full recovery !—-Shirley

  2. God Bless both of you – so grateful that Brian seems to be experiencing a successful trial. Can’t even begin to imagine the stress you have both experienced over these last couple of weeks – the ups, the downs, the fears. Continued prayers for a marrow filled with nothing but good blood producing soldiers.

  3. This is wonderful news. It sounds like a difficult road, but worth it when you get such great results. Hope the rest of Brian’s recovery is smooth and uneventful!

  4. Fingers crossed!! My God he’s been through hell!

    Maybe Trial Drs should consider incremental re-infusion of the T cells so as not to overload the body all at once. Do it over a several days or more? Just a thought!?!!

  5. Wonderful news. Breathing a sigh of relief for you all now that those days of painful inflammation seem over. Upward and onward. Thanks for paving the way.

  6. Negative MRD in 14 days?!….nothing short of miraculous. I am so very happy for your progress. This is terrific news for us all! Thank you Brian for your journey.

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