If money is not an issue, why not CAR-T as a f... - CLL Support

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If money is not an issue, why not CAR-T as a first line of treatment?

nuji profile image
nuji
12 Replies

Life is more precious than money. So, if shortage of funds was not a criteria, would CAR-T be the first line of treatment for CLL?

Since CAR-T is supposed to be a cure for CLL???

Just thinking out aloud.

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nuji profile image
nuji
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12 Replies
lankisterguy profile image
lankisterguyVolunteer

Hi nuji

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I found these useful replies in the box on this page labeled "Related Posts"

*CAR-T treatment for CLL

healthunlocked.com/cllsuppo...

*Car T-cell, what’s the deal? Isn’t this the CURE?

healthunlocked.com/cllsuppo...

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The bottom line is that BTKi and BCL2 treatments work very well for about 90% of patients. CAR-T works well for about 30% of patients and has some serious side effects in the first month after the modified cells are re infused.

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You can read the latest updates here: cllsociety.org/?s=CAR-t

Make certain to read the blog and treatment experience from Dr. Brian Koffman the founder of the CLL Society and a successful CAR-T patient. healthunlocked.com/cllsuppo...

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Len

nuji profile image
nuji in reply to lankisterguy

🙏🙏🙏

mickimauser11 profile image
mickimauser11 in reply to lankisterguy

Results are mixed and sometimes you cannot make CarT s because of T cell exhaustion plus with the new bispecific antibodies which connect immunecells and are applied by infusions or a weekly shot and seem to be very successful I assume that this will be the future recommended treatment also costwise

nuji profile image
nuji in reply to mickimauser11

Yes, the bispecific antibodies which bring the faulty B cells to our own TCells sounds very interesting. Let’s pray that a cure is found soon.

Snakejaw profile image
Snakejaw

I won’t pretend to be an expert here, and it seems like car-t needs more work before it’s an effective front line treatment for cll. There’s also possible nk treatments or even Crispr that are appearing on the horizon. As a young person with this disease (36), I’m hopeful some of these become options before I start treatment, and you bring up some valid questions on what treatment should be started first. Right now it’s the variety of novel agents, but tomorrow it could change. Depending when I start needing treatment, I’ll need to survive for decades to reach a normalish life expectancy. That’s daunting, but I’m optimistic out of necessity that more treatment options will appear before I run out of time or choices. I try to have faith in medical science and the incredible advances that have been made recently. It’s a better time to have cll now than ever before.

nuji profile image
nuji in reply to Snakejaw

You will surely live up to a ripe old age. A positive attitude and faith will get you there. Living in the present and dreaming and fantasising about your old age and believing that the technologies will evolve before you need them will take you to your desired old age. Cheers my friend. Live long, live happy, and prosper.

Snakejaw profile image
Snakejaw

Thanks nuji, appreciate it. I’m just as interested in car-t as you, and am excited for whatever the next wave of treatments ends up being. Till then let’s keep living 😀

Davidcara profile image
Davidcara

CAR T is not a walk in the park. Would try to avoid going through that.

rafew profile image
rafew

Far more profitable for the drug companies to treat than to cure. 😀

AussieNeil profile image
AussieNeilPartnerAdministrator in reply to rafew

rafew and Spark_Plug , as others have shared, CAR-T is not an easy treatment and currently it comes with a much higher risk than approved treatments. A cure is not guaranteed if you survive the procedure, which I consider is still experimental. Bone marrow transplants also offer the chance of a cure (also not guaranteed), but are less often done in CLL nowadays because of the risk of the procedure (which increases with age) and targeted therapies have improved so much compared to earlier treatments.

Despite CAR-T having its start over a decade ago with CLL patients (with one of the trial patients still alive over 10 years later), it doesn't work as well in CLL as it does with other cancers. A big problem with CAR-T for CLL is that CLL exhausts the T cells, which you need working well for CAR-T to work! Arguably having an approved treatment beforehand puts you in a better position for CAR-T to have a higher likelihood of success. Also, CAR-NK may be more effective for CLL - we don't know yet as it's new.

With respect to drug company bottom lines, certainly they prefer to sell maintenance drugs rather than drugs used in a limited term treatment, which is why there's not enough research into new antibiotics. Thankfully drug companies don't decide our treatment, medical specialists do. That's why CAR-T and CAR-NK research is continuing, CRISPR and other exciting new technologies are being researched and why there are so many trials of fixed term combination treatments for CLL, with the aim of curing us, or at least giving us a long remission/drug taking holiday.

Neil

LeoPa profile image
LeoPa

Because money IS an issue and not everyone's life is more precious than money. Not even to him/her. Hence those who pass voluntarily.

AussieNeil profile image
AussieNeilPartnerAdministrator

Jammin', Thanks for expanding on your reply to clarify your perspective and for further highlighting Len's mention of the current effectiveness of CAR-T. My concern was that this crucial point of low effectiveness of CAR-T had been lost in the later replies.

I consider that we are currently going through a huge transition to personalised medicine for CLL. It is going to take time to work out which markers to use to predict the optimum treatment choice. That's because with CLL being a chronic cancer, it can take 5 or more years to see who progresses and who goes on to have a long lasting remission, even a cure.

Neil

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