Anyone see this?: topicalthunder.com/2019/05/... - CLL Support

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Anyone see this?

CCLandwell profile image
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topicalthunder.com/2019/05/...

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CCLandwell profile image
CCLandwell
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AussieNeil profile image
AussieNeilPartnerAdministrator

That report on the holy grail of making CAR-T therapy financially viable is frustratingly lacking in any useful detail: what blood cancers and what specifically is being done to make CAR-T therapy something that can be given as a standard prescription, without having to extract and modify on a 1 on 1 basis each patient's T cells for reinjection. Then there's the challenges of ensuring a higher success rate without the risk of severe, possibly fatal reactions. Good to see that research is continuing, especially in Australia :) . It was Australian research behind Venetoclax's success.

Lots of previous posts on CAR-T can be found here:

healthunlocked.com/cllsuppo...

Neil

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer

Too good to be true? The research into CarT is very promising, but we aren’t there yet. Tabloid sensationalism.

Time17 profile image
Time17

This is promising but other results to date show a lot more research needs to occur before CAR-T has good success rates for CLL. I asked my Heamatologist about CAR-T and CLL and his response was they are not there yet in regards to CLL. They are having good success with ALL and Diffuse B-Cell lymphoma. However it is great to see that more research is happening in this area.

HopeME profile image
HopeME in reply toTime17

Didn't Dr Koffman have good success with CAR-T after failing a Bone Marrow Transplant? I seem to remember him recommending to someone that they try CAR-T before a Bone Marrow Transplant but I could be mistaken. Obviously cost is a major issue.

AussieNeil profile image
AussieNeilPartnerAdministrator in reply toHopeME

Yes, Dr Koffman successfully underwent CAR-T therapy just over a year ago. (His other possible option was Venetoclax). Concurrently Lisa Mincove in the same hospital and also undergoing CAR-T therapy unexpectedly lost her life on what is still a developing procedure, with a lower rate of success than seen in other blood cancers. Lisa Mincove was posthumously awarded a CLL CURE Hero award. Dr Koffman, Dr John Byrd and Chris Dwyer (Cllcanada) were the other award recipients.

Bone marrow transplants can be curative, but are less used nowadays, as the new CLL treatments have shown such dramatic improvements, particularly for those with 17p del/ TP53 mutated CLL. Bone marrow transplants don't necessarily work (Dr Koffman's failed as you noted, but recipients can also be left with Graft vs Host challenges) and the risk of death increases with age. Thus transplants tend to be offered to young patients with aggressive CLL.

Neil

HopeME profile image
HopeME in reply toAussieNeil

Thank you Neil. Is Dr. Koffman considered cured?

AussieNeil profile image
AussieNeilPartnerAdministrator in reply toHopeME

Too early to say. With acute cancers, people can be considered cured if there's no evidence of the cancer after 5 years. CLL has a reputation of always coming back and that, along with the slower growth associated with a chronic cancer, means that those who have seen 10 to 15 years of remission after FCR treatment aren't considered cured, but I'm sure we'd all like to be in that situation!

17Pisme profile image
17Pisme

My doctors at MDA believe we are 2 years away from true CAR-T success (or at least greater success than present).

HopeME profile image
HopeME in reply to17Pisme

Great to hear the folks at MDA think we are that close. They are certainly among the heavy weights in the CLL World.

Time17 profile image
Time17

I agree with AussieNeil. I have been trying to research CAR-T outcomes for CLL as I have been told an Allogeneic transplant is my best chance of survival for my aggressive CLL. Most information seems to be yes it has promise for CLL. Hopefully in the future CAR-T and NK cell therapies will offer CLL patients such as myself a better chance of survival without the side effects and complications that many experience with donor transplants. Trust me the research cannot come quick enough for those of us who wish to avoid a transplant. I also give credit to anyone trying to reduce the cost of CAR-T which is currently unaffordable for most of us.

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