T CELL's Mechanically Engineered.: Hi All, some... - CLL Support

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T CELL's Mechanically Engineered.

Vindicatrix profile image
8 Replies

Hi All, some time ago I read a very interesting article, (It may even have been on this Website.)

It was regarding a Trail done many years ago, in one of the Scandanavian Countries, I think.

Three men with CLL had their T Cell taken out and either re-booted, or fake ones replacing them.

When re tested, none had CLL,, and 10 years after the event, one of the CLL'rs was very healthy, and doing extreme sports whilst still in remission.

I think they all had been tod that they were cured. (I know unlikely) but that was what they had been told. said.

I put this to my Haemo man, and he confirmed this information in total, but seemed to dismiss the value of the trial, and told me that it was never followed up. He did not say why, and I did not push the point, as I felt, he wanted to move on.

My question to you all is this:, Is there is any substance to this, that you know off.

Any info, gratefully received. Regards All, Ron

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Vindicatrix profile image
Vindicatrix
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8 Replies
AussieNeil profile image
AussieNeilPartnerAdministrator

Hi Ron,

This may be the post to which you are referring, regarding the inaugural CAR-T trials in the USA, 11 years ago:

healthunlocked.com/cllsuppo...

"that it was never followed up" is entirely incorrect. The development of various CAR-T and now CAR-NK treatments for a range of cancers has continued over the past 11 years. CLL specific CAR-T trials are running currently in the USA, the UK and Australia that I know of.

Rob, one of our UK members and a past volunteer, is providing us with regular updates of his CAR-T trial progress: healthunlocked.com/cllsuppo...

Dr Brian Koffman continues to do well, 4 years after his CAR-T treatment: cllsociety.org/2021/03/car-...

DebinOz has also provided updates on her successful CAR-T treatment:

healthunlocked.com/cllsuppo...

Neil

Sushibruno profile image
Sushibruno in reply to AussieNeil

Wow Neil it's been 4 years for Brian? Unbelievable how fast that went. I hope it proves to be the cure in the future. I know it's risky (not for everyone) but I hear they trying to treat better. Am I right?

Vindicatrix profile image
Vindicatrix in reply to AussieNeil

Thanks a lot, it answers my queries. Regards Ron

al444 profile image
al444

I know a brain cancer Specialist in Harvard told me to go for car-t if I need a treatment on day and advise to check if we have this treatment in UK

Oleboyredw-uk profile image
Oleboyredw-uk in reply to al444

To the best of my knowledge ALLCAR19, the trial I am on is the only way to get CAR-T therapy in UK if you have CLL. It is a Stage 1 trial, testing for safetly. CAR-T has been used more with other blood cancers. There were 50 places on ALLCAR19, 10 for CLL patients.

However, my information is from when I was researching it in Dec/Jan so there may have been changes.

My hope for the future is that something comes from the current CAR-T therapies that is easier on the patient, less risky, less time consuming and therefore less costly. I read something yesterday about some work that had been done (not in humans) that could put CAR-T cells back that were deactivated and could be activated/deactivated by a drug. If this comes to trial in the future it could be another great step forwards.

best to all, rob

al444 profile image
al444 in reply to Oleboyredw-uk

Tkx for your info , I’m still on W W but my platelets going but no other symptoms. Still thinking on the future

Vindicatrix profile image
Vindicatrix in reply to Oleboyredw-uk

Thank's Rob, very helpful. Regards Ron

MichelleM61 profile image
MichelleM61

This is very interesting. I too am WW and keep looking for info if and when I might need something. Best of luck to you 🙏🏻

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