CAR T-cell therapy

[htam]

Hello

I have been diagnosed with CLL/SLL previously I treated with Imbruvica( with previous R-CHOP), the drug start to make a side effects after I got infected with COVID-19 , I had a recurrent infection for 6-7 months after with sever neutropenia .

Now its appear a new lymph nodes involvement with the disease ,now my doctor recommend for me CAR T-cell therapy

So I'm interest to know all about the treatment , how it effect on the body with prognosis ( good / bad ) , side effects that commonly complain of.. is it worth or not? as I saw its a new protocol for a treatment pls if any one can share to help

if any one can help me ??

[Hidden]

cllsociety.org/2022/08/car-...

[htam in reply to Hidden]

Thanks for replying

I would like to see some stories from real persons who treated with it , more than scientist and research

[HopeME in reply to htam]

hi Htam

There is a member, Rob in the UK, who has carefully detailed his Car-T journey. Unfortunately, I can’t recall his exact user ID. Can someone help with this information?

Thanks,

Mark

[PaulaS Volunteer in reply to HopeME]

Oleboyredw-uk

[SofiaDeo]

If you search "CAR-T" you can find the posts related to it, including any personal stories. It's fairly new, so not a huge number of patients.

The moderator of the link Hawkeagle gave to you, has had CAR-T. If you search within that link, the CLL Society website also has some posts about CAR-T with at least one patient story.

[Oleboyredw-uk]

As PaulaS wrote, I have a little experience of CAR-T. I am on the ALLCAR19 trial and received my first CAR-T cell infusion on 3rd May 2022.

My journey is in a series of posts which you can find looking up my username. There are ten posts so far.

Start with healthunlocked.com/cllsuppo...

Then

healthunlocked.com/cllsuppo...

If you are not bored with that there are eight more (2-9).

Best to all, rob

[htam in reply to Oleboyredw-uk]

Hello Rob

Thanks for sharing your experience I checked it now its a full of all what I was looking for

How do you feel now ?

[Oleboyredw-uk]

Hi Htam, I'm feeling good thank you. There is a really good cartoon description of CAR-T that I highly recommend as an 'easy-in' intro. I watched it after quite a bit of hard reading and it made everything gel. Watching before is a better idea. It is the second video on this page:

cllsociety.org/treatment-an...

titled 'The CAR-T Comic Book'. Do not let it's name cause you to underestimate it.

best, rob

[HopeME in reply to Oleboyredw-uk]

The Car- T comic book really boils it down and makes it understandable. A nice overview produced by the Koffmans. Thanks Rob.

Mark