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Day + 10 of CAR-T for CLL – Slower Moving but Getting Better

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April 1, 2018

Many days in bed challenge the muscle tone and the mind (the caregiver’s and the patient’s).

Heather slept over last night, taking good care of her dad, as you can imagine. I arrived this morning and learned that he had developed a headache in the occipital region overnight and I found him very sleepy.

I called the doctor who had just seen him. Could a headache and sleepiness be symptoms of neurotoxicity? He reassured me that he had just rounded on him, put him under the proverbial cognitive microscope and that Brian had passed the test with flying colors! Yes, our sleepy guy knew his “serial 7s”, could easily spell “world” backward and was completely behaviorally appropriate.

Lack of activity (essentially sleeping all day) leads to poor muscle tone and lazy bowels. No kidding, these are BK’s own words.

Sleepy? Constipated? Here’s hoping that having walked several laps around the ward will help with both.

The good news is that Brian has had no fever for 48 hours now and his inflammatory markers have stabilized or have begun to fall. Except for a significant drop in his neutrophil count (just above 500) and a rise in his lymphocyte count (which likely represents the expansion of his re-engineered t-cells), his hematological tests and blood chemistries all remain stable.

If the trend continues, we should be back at the hotel by tomorrow night. Brian may have glided through a “sweet spot’ in the cytokine storm, with significant fevers, chills and rising inflammatory markers, but never becoming hemodynamically unstable or neurotoxic.

Here is some recent thinking on CAR-T (Chimeric Antigen Receptor Therapy): There is reason to believe that having CRS (cytokine release syndrome) is what is important, not the severity of the storm.

Let’s hope we will soon see CLL (chronic lymphocytic leukemia) in the rear-view mirror.

And let’s hope Brian sleeps better tonight. Patty



11 Responses

  1. How many successful trials are needed before the FDA, Medical Professionals and Insurance Companies start looking at approving this particular CAR-T protocol as the standard of care for CLL patients? Which Pharma Company is providing the CAR-T product for this trial? I hope BK gets to sleep at the hotel tonight.

    1. Hi, John. Thanks for your questions. There are 3 commercial companies that are manufacturing CAR-Ts and several academic centers that are making small batches of CAR-Ts. After working with the FDA and completing a number of small Phase I and Phase II trials, they can have a general idea of the pathway to getting the drug to market. JUNO is the manufacturer of the CAR-T cells in my clinical trial, as well as the more widely disseminated JCAR017 trials. This phase of the process probably needs at least 2 more years and a hundred more patients, but these are just guesses and may be way off.

      1. Thanks for the info. I hope you’re getting your mobility back. I hope the inflammation and pain is dissipating.


  2. Just catching back up. Seems like a bit of rough water has been navigated well. Really appreciate and enjoy the team blogging by Heather and Patty. The report on family Passover activity and Brian sleep talking was especially endearing.

  3. Very encouraging news! Wonderful that Brian had the strength to walk several laps around the ward!

  4. Hag Sameach,
    Glad things are turning around fast. Even that beautiful view can get old when you are in the hospital. Keep it up.

  5. I am so happy your family is together and those around you helped bring Seder to you. Your circle of love makes you all strong. We are all so proud of Brian and eagerly share your updates in CLL circles.
    Love and hugs to you all. Onward!

  6. Dear Brian, I’ve been following you all along with hopes for the kind of encouraging news that Patty delivered today. Much appreciation to you and your family for posting updates at the same time that they are caring for you. You are not just fighting for yourself, but for all of us, too. I know you are staying strong. This is certainly the appropriate time of year to mark your rebirth!

  7. I have been following closely……and feel that you all are an inspiration. What Brian is going through, forges the path for the rest of us. He is a true explorer….next comes the pioneers, and then the colonists. I am hopeful my own husband with CLL will benefit from this knowledge. I was touched by your family’s celebration and that his grand daughter played such a role.

  8. I have been away for several days and have been looking forward to reading how Brian is doing. Thank G-d he is progressing well! May Blessings keep coming y’alls way!
    Adam – Birmingham Alabama

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