Need Urgent help for CAR-T therapy: Hello! My... - CLL Support

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Need Urgent help for CAR-T therapy

nuji profile image
nuji
8 Replies

Hello!

My friend, a 57 year old male, who resides in India, has been suggested CAR-T therapy as a last resort.

Here’s his cancer chronology

9/2009 - DX - Grade 2 Follicular Lymphoma.

9/09 to 11/2016 - W&W

11/2016 - NHL - infiltrating liver

11/2016 to 3/17 - 6 rounds of R-CHOP

4-17 to 11-17 - 3 rounds of Rituximab

3-18 to 5-18 - 3 rounds of R-DHAP

7-2021 - disease progression and planned for BMT after control of cancer. Diffused Large B Cell Lyphoma GC type Hans Classifier.

12-21 to 4-22 - 5 rounds of R-DHAP with no control over cancer. BMT not possible and CAR-T only option left.

where can one go for CAR-T immediately?

Any idea of how much it would cost? It will have to be self paid since there is no insurance cover.

Urgent directions required.

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nuji
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8 Replies
AussieNeil profile image
AussieNeilAdministrator

Can any of our members help with this query?

Nuji, this is a support community for Chronic Lymphocytic Leukemia, not Follicular Lymphoma. I expect but don't know if sites that do CAR-T for CLL will also do this for Follicular Lymphoma/Diffused Large B Cell Lyphoma.

I hope your quest is successful.

Neil

Jm954 profile image
Jm954Administrator

Your friend has a Richter's transformation of his follicular lymphoma which will be very difficult to treat if it has not responded to the very intensive chemotherapy that he's already had.I am not a doctor but I understand that part of the difficulty with CAR-T is that can be difficult to harvest enough T cells, then it takes time to engineer the T cells . In addition, the disease really needs to be in remission/under control for it to be effective.

There is a Facebook group called Richter's transformation and they have some expertise there including instances of people successfully treated with Pirtobrutinib to gain control prior to CAR-T or transplant.

Sorry we can't be more helpful, I wish your friend the best. He's lucky to have you on his team.

Jackie

nuji profile image
nuji in reply to Jm954

Thanx Jackie. Will ask him to look into it

Hoffy profile image
Hoffy

CLL Society has a lot of information on CAR-T on their web site,

cllsociety.org/?s=CAR-+T

Deborah did her CAR-T in England I believe,

leukaemia.org.au/stories/de...

Maybe they are still doing clinical trials. City of Hope is doing CAR-T clinical trials in California,

Best wishes,

Hoffy

nuji profile image
nuji in reply to Hoffy

Thanx Hoffy. Will do the needful.

Naka profile image
Naka

See if he can get to Dr Siddiqi at City of Hope in SoCal. She's one of the top CLL Specialist in the US and a Car-T researcher

nuji profile image
nuji

Thanx Lenaka for the information.

My friend is no more. He passed on to the next world three months ago.

Newdawn profile image
NewdawnAdministrator in reply to nuji

So sorry to hear this nuji. I’ll turn off replies to your post now to prevent any further responses.

You were obviously a very caring friend to him.

Newdawn

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