Car-T TV special. National Geographic break th... - CLL Support

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Car-T TV special. National Geographic break through series.

Hoffy profile image
32 Replies

1 hour on Car-T. Main guy discussed had CLL. It is totally gone now!!!

Great show. On TV currently or can be watched online I think,

The Show is called Breakthough on the National Geographic Channel

channel.nationalgeographic....

Does require IVIG after monthly I believe since all B-cells are then removed.

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Hoffy profile image
Hoffy
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32 Replies
tekusa profile image
tekusa

We need a new target (for CAR-T therapy) to kill only malignant B Cells not all B cells including healthy ones. Or maybe a way to render the Engineered T cells ineffective after they completed the task (no malignant B cells determined by MRD negative). I know it's preferable to be alive even though receiving IVIG every month, but is it possible to return a person to whole after CART19?

Hoffy profile image
Hoffy in reply totekusa

Yes. Exactly. But it is great that it works at least.

The show is very good and says we are really in the very early stages.

Hopefully CAR-T will be the cure to many cancers.

It worked for jimmy carters brain cancer as well.

tekusa profile image
tekusa in reply toHoffy

I know it is early for CAR-T technology. This being one of the treatments to activate our immune system to fight cancer tumors. But if I am not mistaken the response rate for CLL patients is less than 40%. Acute ALL might be 80%. But Dr. Byrd told me last visit that after Acalabrutinib this would be a treatment he might recommend for me.

The other Immune system treatments are known as checkpoint inhibitors. Keytruda is an example.....

keytruda.com/static/pdf/key...

I was thinking this is what Jimmy Carter was treated with, to cure his melanoma. Also some radiation treatment as well. I don't think there has been much testing of checkpoint inhibitors in CLL to date. But the direction these medications take us are better for sure.

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply totekusa

PD-1 checkpoint inhibitors are showing good response in Richter's, not so great in CLL... very early days.

tekusa profile image
tekusa in reply toCllcanada

Have you any info (update) on ROR1. I viewed some "Tom Kipps video" and other posts on this as a target in CLL. Than I think there was a sale in the technology development of this for use in CAR-T. Also was a target for Vaccine (I think) for use in CLL. Maybe it was found to not work, and went away quietly.

youtu.be/Zji6Fux_WGo

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply totekusa

Dr. Carlos Croce is pumped about Venetoclax and ROR1 monoclonals...

youtu.be/PINfN_N7OEA

UK-Sparky profile image
UK-Sparky

Exciting times, lets hope we can all stay well enough for the day a total cure arrives

UK Marc

shazie profile image
shazie

Saw it last week. Love this program.

Similar program on HBO called VICE. Their season openner from last year was Killing Cancer. Definately watch it if possible.

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer

Monthly IVIG isn't so bad if everything else is going well. But I think this treatment is in it's infancy. Who knows how far they will be able to advance it.

canadagoose profile image
canadagoose

I had it last year. Twelve months later my bloods are normal. I feel wonderful. The treatment is not for the faint of heart. I had all the side effects but made it through. Very glad I did it.

SeymourB profile image
SeymourB in reply tocanadagoose

Are you on any maintenance drugs?

Hoffy profile image
Hoffy in reply tocanadagoose

Congradulations. Do you do IVIG monthly ?

Where did you do the CART?

Is CART less risky than a Bone Marrow transplant?

Seems like it would be.

Cllcanada profile image
CllcanadaTop Poster CURE Hero

Some of the problems are a way to turn off the T cells, control the speed, and lower the cost with an 'off the shelf' solution.

All are being worked on, and various methods are in clinical trials,

Cellectus is working on allogeneic T cells, hopefully targeting CLL B cells.

youtu.be/TzSurHZjoy0

tekusa profile image
tekusa in reply toCllcanada

Video looks futuristic! Man o Man do I wish them success!

Justasheet1 profile image
Justasheet1

Chris,

The off switch. As you call it,"the Holy Grail".

Jeff

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply toJustasheet1

Generally speaking the Holy Grail is a treatment that only targets the malignant cells, leaving the good B cells intact... that way, you could selective kill the CLL, and leave the immune system uneffected.

Most patients die from secondary opportunistic infections, as the immune system collapses... or from bone marrow infiltration...

Either way, removing of just the malignant cells would provide a life long control... and in theory, a cure...

~chris

Justasheet1 profile image
Justasheet1 in reply toCllcanada

Is that the ROR-1 protein? I thought Dr Kipps found that mainly on CLL cells.

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply toJustasheet1

Listen to Croce... you need a one two punch... again like everything in CLL, it works for some but not all...

there are two different approaches, cirmtuzumab (ROR1) is a monoclonal, and MDA has a Car-T targeted to ROR1.

I read something that ROR1 also is found elsewhere, but it was just mentioned a few years ago.. I don't recall the context.

My money is on acalabrutinib (ACP-196) and venetoclax in combination, and perhaps a combo from TG... Gilead has irons in the fire as well, they could mount a combo from their pipeline...

But we are looking 3-5 years out..at least to the clinic...

Justasheet1 profile image
Justasheet1 in reply toCllcanada

Chris,

He's a passionate speaker. I hope he's correct. 🙏🏻

Jeff

tekusa profile image
tekusa in reply toJustasheet1

I was watching a Dr Gribbens video 10 minutes ago and I heard his disbelief regarding Mir 15 & 16. Dr. Gribbens mentions Dr Croce by name.

If you hear it differently please say so!

He believes it comes down to Mir 15 & 16

youtube.com/watch?v=PINfN_N...

He doesn’t believe it……… highly respected CLL researcher

youtu.be/QE7LIDiOEPk

Hoffy profile image
Hoffy in reply totekusa

It was a bit confusing.

tekusa profile image
tekusa in reply toHoffy

It was... Dr. Gribbons was not able to get a firm response on Origins of Malignancy. But on Dr. Gribbons video at approx 2mins 40 secs he mentions Dr. Croce's findings. I read that to mean there must be more to Mir 15 - 16 in CLL. Maybe nothing, but dashed my hopes.

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply totekusa

MIR15/16 were big news in 2004 or so, they are on chromosome 13... as I recall.

sciencedirect.com/science/a...

The NYTimes did a piece on Dr. Croce, might have been fake news for all I know... but he certainly is colourful...

nytimes.com/2017/03/08/scie...

radio.wosu.org/post/amid-et...

Justasheet1 profile image
Justasheet1 in reply toCllcanada

Certainly makes you question what he says.

virdieblue profile image
virdieblue

I missed the connection between RoR-1 and Car-t. Is Car-t what they are calling the Ror treatment?

Virginia

tekusa profile image
tekusa in reply tovirdieblue

Hi Virginia,

CAR-T is designed to go after a target. The targets are the small proteins or whatever we call it (antigens is what Dr, Croce referred to it), that are on a B-cell. Original design CAR-T would go after CD19 and would kill cells having this (CD19) on the cell. Problem is all B cells have this. Kills the good ones and the bad ones. ROR1 is thought to exist only on Bad B cells (CLL cells). If you make T cells using the CAR process to attack ROR1 proteins, you don't kill the good B cells. Need the good ones to make Immunoglobulins (Antibodies) to fight off infections. Keeping the good ones you will not need monthly IVIG.

I hope my explanation is what you are asking about, and if not I apologize to explain what you might already know.

virdieblue profile image
virdieblue

Thank you - I missed the connection. So Car-t can be for any protein targeted-

for people interested to follow first ever CART approval for ALL being discussed at FDA live today. Hopefully this will pave the way for similar CLL therapy shortly

statnews.com/live-blog-land...

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply to

The Food and Drug Administration advisory panel voted 10-0 on Wednesday to recommend approval of the treatment developed by the University of Pennsylvania and Novartis Corp.

The one-time treatment would be for children and young adults with advanced leukemia.

CLL has a ways to go yet..but the door has opened

medpagetoday.com/PublicHeal...

in reply toCllcanada

major milestone. beginning of new era

in reply toCllcanada

clinicaltrials.gov/ct2/show...

Hoffy profile image
Hoffy

There is a clinical trial at the hutch in Seattle with ROR1 ad the target :

clinicaltrials.gov/ct2/show...

UC San Diego is supposed to start soon as well.

This could be very good because it is a target that only appears on CLL cells and not her regular Bcells. The problem with the regular car – T therapy is it wiped out all of the B cells thus requiring IVIG injections for life.

I'm not an expert but this could be very good.

These are exciting times !!

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