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Day + 18 CAR-T Part I/ for CLL (chronic lymphocytic leukemia) Perplexing Inflammatory Reaction

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April 9, 2018

We certainly have a puzzling situation on our hands. When Brian was admitted to hospital on Friday (Day + 15) he had severe, total-body muscle pain, swelling in the knees and ankles, and a very diminished ability to locomote, so was transported by (non-emergency) ambulance. The most severly affected areas were his neck, shoulder-blades and knees. Fever followed.  Heavy-duty pain meds were given so that physical therapy could be started, and I’m happy to say that over these 3 days he has regained much of his mobility and is not in much pain.

But what is this? CRS (cytokine release syndrome)? Or something else?

The most severe inflammation is following the path of old injuries and surgeries (football injuries, cross-country ski injuries, knee surgeries)… with the cruelest pain in the knees, which raises the question of whether CAR-Ts might excite inflammation where arthritis exists.

Each day has brought consults with thoughtful specialists… but no definitive answers yet. Stay tuned.





8 Responses

  1. God bless and strengthen you, Brian, and hold all of you in His loving hands as you journey through this trial. I’m praying for you to feel less pain soon. You’re so brave!

  2. Thank you so much for the update but so sorry to know that Dr. Koffman has had to experience so much pain. Glad to know he now has had some relief. Looking forward to hearing more about the medical opinion on the inflammation. Hope this is something that is very temporary and the remainder of Dr. Koffman’s CAR-T journey is an easy one.
    Love and thoughts to the Dr. Koffman and family! I am sure you are looking forward to getting him home!

  3. Warm wishes and good thoughts to all of you.
    Brian your bravery is amazing; I’m pulling for you and keeping you in my thoughts every day, hoping the worst is behind you.

  4. So sorry you guys are having to go through this – wish it were a calmer trip for both of you. I’m a nurse with many years of experience and i thought I might share this thought with you – just a thought. My mom had rheumatoid arthritis and every time she had to undergo a medical procedure, she got a double whammy – her arthritis went into high gear – perhaps when the body is given a huge job, the arthritis seizes the moment – again, just a thought. In the meantime, please know that you are in the hearts and prayers of oh sooooo many folks. Lots of virtual hugs going your way.

  5. This sure is puzzling. I wonder if this has happened with others doing CAR-T? Hoping this is short lived, and you get back to the pain free life you richly deserve.

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