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Part 2: Why Seattle for My CAR-T Therapy to Demolish My CLL?

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I am hoping that writing about my choice of Seattle will distract me from my waves of nausea and other gut issues after two days of chemo – FC (fludarabine (30/M2) and low dose cyclophosphamide(300/M2).

The one drug that was supposed to help, the Zofran for my nausea, actually made things worse with constipation.

That too, pardon the double entendre, will pass.

So far there has been no real drop in my cell counts which is good and a slight unexpected dip in lymphocytes which is also good.

No major trends or signposts in those results, but I’ll take. Could have been worse.

Can’t say I am looking forward to day three of lympho-depleting chemo to clear space of the Car-T cells coming later this week, but I knew what I was signing up for when we flew here almost 3 weeks ago.

So why did I choose Seattle for this roller coaster ride called CAR-T trial?

Other options would have been much easier and certainly less expensive.

Nothing beats being home when you feel sick and vulnerable.

While convenience and the comforts of home should not be discounted as therapeutic, I decided this time other factors outweighed the excellent care I could have received locally.

First is that the Seattle Cancer Care Alliance (SCCA)/Hutch has a depth of experience with CAR-T therapy second to none. And as my excellent trial doctor for March (docs rotate on the immunotherapy service for 1 month), Dr. Utkarsh Acharya, says in such an infant field, there is more art than science. I want a team caring for me that has experience.

Second is what this trial is not: it is not a dose finding trial- they have that nailed- but not without the sacrifice of more than a few brave patients who came before me and got too many CAR-Ts, sometimes with fatal consequences, and those who got too few with limited efficacy.

The same Goldilocks’ analogy.

Third reason:

Based on the published data you can see with the links from U. Penn and the Hutch, I absolutely wanted to be sure that ibrutinib was part of the trial. Response rates in CLL more than double.

Dr. Maloney gave me three reasons that ibrutinib was so important.

  1. Exhausted T cells may become revitalized and more responsive. This is critical to the success of any cellular therapy and is the reason after the initial excitement about CAR-T based on the excellent, durable response published in NEJM way back in 2011, the response rates in CLL have been disappointing and much lower, only about 30%, compared to other CD19 + blood cancers. The reason is probably the immune dysfunction in CLL of the T cells that may be partially reversed by ibrutinib.
  2. Ibrutinib may dampen the severity on the cytokine release syndrome (CRS). Seeing that CRS and the related neurotoxicity are the leading causes of misery and death with CAR-T, modulating them makes sense.
  3. Ibrutinib keeps the CLL under at least partial control while waiting the two plus weeks for the manufacturing and processing of the CAR-T cells for infusion.

As a CLL patient, I would not consider a CAR-T trial, without ibrutinib.

Next this trial is outpatient. I prefer a hotel to a hospital and the food and choice of clothing is certainly better. We have a kitchen.

Next, SCCA has the only dedicated immunotherapy unit that exclusively handles CAR-T patients and the view from the 6th floor waiting area is amazing.

Finally, Seattle is a very vegan friendly, cool place to visit, full of beautiful parks and friendly people, even if the circumstances for the visit stink.

Well, the writing and the Kytril for nausea may have helped. It’s not gone but it’s better.

More on why I chose CAR-T ahead of other therapies soon.

Stay strong.

We are all in this together.


12 Responses

  1. I understood that you have relapsed while taking ibrutinib?
    For C481 binding site mutation or some other reason I guess, I don’t understand therefore what use Ibrutinib is now?
    Your’s is the best CLL site on the web, without a doubt.

    1. Good question. I have PCLG2 downstream gain of function mutation in the BTK pathway that makes ibrutinib less effective at controlling the CLL, but does not render it useless. It still helps control the CLL, albeit to a lesser extent- that is why it never advised to stop ibrutinib until an new therapy is in place. For CAR-T it is the immune-modulation effects on the T cells are why it so critical . Those benefits are completely independent on C481 or other causes of it becoming refractory.

  2. Everything you are doing, and all that you are experiencing, physically and emotionally, is of great interest to us all. A big salute to you for stepping up to the “blog bar”, even when nausea and other forces are getting in the way. Tagging along with you is really helpful and enlightening. Thank you friend. It is true….. we get by with a little help form our friends.

  3. My husband and I wish you well and are following your journey. Thank you so much for sharing it with the CLL community.

  4. Thank you for your updates and clear explanations as you follow your journey.
    Our thoughts and prayers are with you both, and your family now, and even more beginning 3/22.
    Terry & Linda Lee

  5. Brian & Patty,
    Thank you for your bravery and keeping us posted on your progress.
    The education you are giving us is invaluable, even when you’re not feeling your best to say the least.
    Wishing you wellness,

    1. I mentioned this earlier. 17p and 11q among others, but they were not seen on my BMB here which is puzzling for sure

  6. Dr. Kaufman,

    Thank you for your candor and efforts for us. Your clinical trial lists Durvalumab as the only additional therapy with the CAR T Cell therapy. How is it that you keep taking Ibrutinib? Allowed or required? Are other meds like Idelalisib or Venetoclax allowed?

    Malcolm Newton

    1. This trial demands you take ibrutinib for multiple reasons: disease control,immune-modulation to encourage the CAR-Ts and to mitigate the CRS. Outcomes are better with ibrutinib aboard. I think other CLL drugs need to be held. I have posted more on this when I talked about why I chose this trial

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