Smart Patients Get Smart Care™

The World’s Leading Authority for Chronic Lymphocytic Leukemia Patients

DAY ZERO: CAR-T cells are aboard and getting ready to seek out and destroy all my CLL (chronic lymphocytic leukemia) cells

This content was current as of the date it was released. In science and medicine, information is constantly changing and may become out-of-date as new data emerge.

MARCH 22, 2018

Well it’s done. No looking back.

My genetically altered T cells were infused between 1:56 PM and 2:20 PM Pacific Time. A total of 250 ccs of a slightly whitish liquid.

Like my transplant, the infusion itself was mildly anticlimactic.

No bells rang, at least none in the range that we humans can hear. Maybe at a different frequency there was heard a clarion cry to rest up and get ready for the battle of your life.

Even though I like to frame myself as a hardened scientist, I have to admit that my son, Will’s comic book informs how I think of the whole CAR-T process.

I visualize the battle-ready serial killers resting and growing, stimulated by my CLL tumor burden, to prepare for the upcoming fight.

Labs remain stable. Still tired. Still nauseated, but that is easing.

Off nearly all my meds except for ibrutinib, a higher dose of acyclovir to prevent a herpes zoster infection, and allopurinol to lower uric acid levels when the killing begins in earnest.

Keeping the short as I need to rest.

Today, I have a clear and positive vision of my deep and durable remission from this amazing scientific adventure.

Thanks again for all the support and prayers and well wishes. I can’t tell you how much they all mean.

Stay strong

We are all in this together.

Brian

Patty and Me and my CAR-Ts

9 Responses

  1. Wow! The day has come. I love and believe in your “clear and positive vision of deep and durable remission”. That is powerful and productive. Looking forward to tomorrow and the next day. Continuing to think good thoughts and sending prayers your way.

  2. So very proud of you and your contributions – Patty as well – I know first hand that this is a “family” battle. God bless you both.

  3. I feel for what you’re going through. You’re a tough warrior and you’re in my thoughts and prayers. Tell those T cells to clean house!!
    Keith

  4. Hang in there Buddy. Reading all your comments and related posts is the best treatment for those of us in w-a-w. You are the scout. Show us the way.
    By the way, is that picture behind you in the hospital room upside down????

  5. Glad the infusion was anticlimactic, Brian. I continue to hang on your every word as you bravely bear the standard for CLL patients into this new future of exciting therapies. Given my own CLL remains W&W, and likely Ibrutnib is in my future sooner rather than later, your journey remains a keen interest. I think of you every day, send you good energies from Texas (in the form of warm breezes!) and hope your path with CAR-T continues smooth and straight. Thank you for everything you do for the CLL community.

  6. You both look great and ready for the dance!
    Prayers are up and out, and you are surrounded in white, healing light.
    Onward!
    With love and support,
    Doreen

  7. Brian,
    Many thoughts and prayers are with you as you go through this and may you obtain a permanent remission and a quick recovery.
    We truly are all in this together.
    Darrell

Leave a Reply

Your email address will not be published.