Good Morning

[Doremefasol]

I am at this point in my disease that I have to look into CarT treatment. I know that CLL's response to CarT was only about 40%, but the research is moving forward, and now there are few CarT available exclusively for CLL and SLL.I remember when they started with CarT, people here said it was an unpleasant experience. I hope that after a few years, researchers developed medication to ease side effects.

Anyone here who has had a recent treatment with CarT? Was it really bad?

Please, tell me what to expect.

Thank you,

Doremefasol

[lankisterguy Volunteer]

Hi Doremefasol

Here is the list of 307 past postings that mention CAR-T:

healthunlocked.com/cllsuppo...

& 817 at healthunlocked.com/cllsuppo...

there is lots of good info and several members posted their experiences.

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One of our long time, regular contributors is  Oleboyredw-uk

and he has posted many updates like this one: healthunlocked.com/cllsuppo...

See his entire list here: healthunlocked.com/user/Ole...

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Len

[Doremefasol in reply to lankisterguy]

Thank you, I will look into it .

[Oleboyredw-uk in reply to lankisterguy]

Hi Len, thank you for pointing to my posts, always nice to know somebody has used them.

I'm still around watching the daily digests but don't tend to post so much these days. I have my aches and pains as we all do, however most are age driven.

The two biggies in terms of risk are ICANS and CRS, however my experience suggests inroad into reducing the risks have happened.

If you have any questions about my experience Doremefasol please let me know. Worth pointing out, there are multiple Therapies, the one I had was engineered in the UK and included modifications designed to reduce ICANS and also to reduce T-Cell exhaustion by releasing the cell it was attacking quicker.

All the best to everyone, robin

[thompsonellen2]

I am also exploring later stage alternatives to begin in 2025. I have been led to believe it is not a walk in the park, but neither are the other two remaining options for me (epcoritimab trial which I don't qualify for yet or SCT). Based on my SCT, I would rather sign on for CAR-T. My first choice is a trial spot should one open, but 100% of patiences have Cytokine Release Syndrome, so pretty much it will be a slog regardless. I try to focus on the fact there are still options which there wouldn't have been not so long ago.

[nvp815 in reply to thompsonellen2]

Hi Ellen,

Please feel free to reach out if you want to discuss my experience at UPenn.

Wishing you well

Nan

[Doremefasol in reply to thompsonellen2]

Somehow, I missed your post, hence the late response.

Take all the opportunities available with medication. The two options that you mention are for the last.

Apparently, they do have CarT with reduced side effects. There is hope on the horizon.

[nvp815]

Good Morning Doremefasol,

I know how overwhelming this decision can be! I opted for a CAR-T clinical trial at the University of Pennsylvania last year. I received my T cells back on June 5, 2023. I have been in remission ever since. I did experience ICANS (neurotoxicity) and CRS (cytokine release syndrome ). Despite those side effects, I would do it again in a heartbeat. Being off medications and feeling "normal" for the past year and a half has been amazing. I do have several posts from during that time, which you can reference. If you have any specific questions, please feel free to reach out to me in a private chat.

All the best to you,

Nan

[Doremefasol in reply to nvp815]

Thank you very much for your positive thought. I will contact you through chat.