CAR-T treatment

[X1702]

Hello everyone. I was diagnosed 11 years ago with CLL with 17P deletion. I went through all standard treatments: Venetoclax, Acalabrurinib and now I’m on Pirtobrutinib. I t seems like I developed resistance to all of them. Currently with Pirtobrutinib my condition is stable and my doctor recommended me the new CAR-T treatment for CLL. Does anyone have experience with CAR-T? What is the success rate, the side effects and what happens if the treatment fails to achieve remission?

[Shepherd777]

My wife is in the same situation...about ten years ago DX and then had Imbruvica, then Venetoclax and now Acalabrutinib. However, she is being told that we can go back on earlier treatments as they may work well again.

[CLLerinOz Administrator]

Hi X1702

It sounds as if you're being well looked after, having been put on Pirtobrutinib with a view to future treatment, perhaps CAR-T.

I know that you've asked for personal experiences and answers to some specific questions. As you've not received much in the way of replies yet, I thought I'd provide some links to just some of the research in this area that may give you some answers to some of your questions.

There were a number of papers presented at ASH 2024 late last year which provide a snapshot of the latest research into CAR-T therapy, including a report about some long term data in relapsed/refractory CLL.

See: ash.confex.com/ash/2024/web... and ashpublications.org/ashclin...

There was also a paper written by Arnon P. Kater and Tanya Siddiqi as part of the meeting's education program. It looks at the role of allo-SCT, CAR-T, and T-cell engagers in relapsed/refractory CLL.

The full paper is behind a paywall but the abstract provides an overview of the main points and it can be found in this earlier post: healthunlocked.com/cllsuppo...

If nothing else, it will give you some talking points to discuss with your team.

An earlier review about CAR-T therapy in CLL (from mid 2024) pmc.ncbi.nlm.nih.gov/articl... discusses some of the challenges of CAR-T but notes that recent efforts with later generation therapy has resulted in some very promising results. In particular, it discusses combination therapies, using CAR-T with targeted therapies, like a BTK inhibitor, for example, the newer 'liso-cel' therapy, which has FDA approval in the setting of relapsed/refractory CLL after BTK inhibitor and BCL2 inhibitor therapy and third generation CAR-T therapy.

See also: nature.com/articles/s41375-... and ajmc.com/view/new-generatio...

A paper at the ASH 2024 meeting about lisa-cel therapy can be found here: healthunlocked.com/cllsuppo...

There's also a video interview with Farrukh Awan, MD who discusses, amongst other things, the use of Pirtobrutinib as a bridge to CAR-T.

onclive.com/view/dr-awan-on...

Other papers about CAR-T presented at ASH 2024, some more technical than others, can be found here: ash.confex.com/ash/2024/web...

We will have some members who've experienced CAR-T therapy but you may find you hear from them if you lock your post to our community. This explains more about that, including how to edit your post to lock it: healthunlocked.com/cllsuppo...

CLLerinOz

[Oleboyredw-uk in reply to CLLerinOz]

Hi X1702,

If you have not started reading much about CAR-T check out a cartoon (huge understatement on my part), made, I think by Dr Brian Kauffman’s wife. It is a really easy watch to get an understand of the basics. You can then build on that. Even if you have started reading it is a good check and balance of your understanding.

I live with CLL and had CAR-T in May 2022 as part of the ALLCAR19 trial. I have posted about a dozen times on My CAR-T journey.

I would post more but laptop broken currently so only using phone.

Best to all, Robin

[X1702 in reply to CLLerinOz]

Thank you CLLerinOz and all others who replied to my inquiry. The information you provided is very encouraging and helpful.

X1702

[Pinecrest]

I just joined a clinical trial in which I will receive a T-cell transplant after chemo. The T cells will be from a donor and engineered to attack cancer cells. I’m also 17 p deletion and have failed 3 treatments. I’m on Venclexta now, and when that fails, I’ll get the T-cell transplant. I’ll need to stay near the hospital for at least a month with a 24 hour caregiver after the transplant. Since it’s a new trial, there are no statistics, but it sounds promising.

There are many forms of CAR-T cell therapys in trials.

I can’t add a link, but you can google (Stanford Car T - cell therapy) for more information.