Re: Epcoritimab Trial: I just learned about the... - CLL Support

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Re: Epcoritimab Trial

bagelstreet225 profile image
15 Replies

I just learned about the Epcoritimab trial.

The results are extraordinary. We are moving closer to a functional cure. The author said that if we combine a btk inhibitor, bcl-2, and CAR T, we could be looking at a CURE.

cllsociety.org/2024/10/soli...

What are your thoughts?

Best,

Pat

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15 Replies
LeoPa profile image
LeoPa

My insurance company would never pay for that combo. It is so expensive that I'm simply not worth that much. If every CLL patient was to get it all insurance companies would go bust in no time. So I wouldn't hold my breath. There will be so many strings attached to it even if it works, that most will not get it. Those are my thoughts 😜

Mandy56 profile image
Mandy56 in reply toLeoPa

I’m in the UK and NICE have already apparently already approved its use in the NHS for patients who have had two previous Failed treatments. I think it’s very hopeful and cheered me up this morning, so thank you for sharing.

Newdawn profile image
NewdawnAdministrator in reply toMandy56

I’d understood that NICE had only given approval for Epcoritamab for treating relapsed or refractory diffuse large B-cell lymphoma after 2 or more systemic treatments.

There are trials for people who are relapsed or refractory to other CLL treatments but unless I’ve missed an update, the NICE approval is only for patients with DLBCL subject to certain criteria;

nice.org.uk/guidance/ta954

It’s such a promising treatment I hope I’m wrong on this.

Newdawn

Mandy56 profile image
Mandy56 in reply toNewdawn

Hi Newdan

I just looked quickly this morning and saw that NICE had said in March they had authorised it. Clearly I haven’t looked into it as carefully as you, so apologies if I’ve misled anyone.

Newdawn profile image
NewdawnAdministrator in reply toMandy56

Not to worry Mandy, we have to hope this is something for our future treatment arsenal. In the meantime, there is the EPCORE trial which I’m linking which gives access to both relapsed/refractory patients and those with DLBCL/Richters. I’m not sure where they’re at with recruiting but it offers real hope. I know we presently have members on this trial and it’s something I discussed with my haematologist when I relapsed fairly aggressively recently.

clinicaltrials.gov/study/NC...

Regards,

Newdawn

Skyshark profile image
Skyshark in reply toNewdawn

NICE have been busy and really got their finger out for DLBCL during the last 2 years.

1st relapse within a year of treatment are eligible for CAR-T (£280k).

nice.org.uk/guidance/ta895

Everyone that has a 2nd relapse can also have CAR-T.

nice.org.uk/guidance/ta872

There is also Glofitamab + Obin after 2nd relapse.

nice.org.uk/guidance/ta927

Pola-R-CHP polatuzumab vedotin (Polivy) with rituximab, cyclophosphamide, doxorubicin and prednisolone has been approved for first line use for patients that have an IPI score between 2 and5.

nice.org.uk/guidance/ta874

ashpublications.org/thehema...

Usual first relapse treatment is polatuzumab vedotin with bendamustine plus rituximab

Research123 profile image
Research123 in reply toLeoPa

When the telephone first came out, a far-sighted mayor said it was such a marvellous invention that one day, every town would have one...... The thing here is that there is yet more progress, and as things progress, costs too come down and eventually they become available. This is just another trial. I don't pretend to understand the results other than people who were presumably not responding to other meds are responding to these. This seems like more progress in the right direction. Costs do come down with time, and as that happens more becomes available, although of course I expect insurance companies are not in a hurry to pay for any treatment that is more expensive, but given drug companies dependant on them, it's in their interest to make it viable

Skyshark profile image
Skyshark in reply toLeoPa

There are trying to develop "off the shelf" CAR-T that may reduce the cost to about one tenth of current costs $300K > $30k.

sciencedirect.com/science/a...

BeckyLUSA profile image
BeckyLUSA in reply toLeoPa

I agree. CAR T just by itself is very expensive and is not an easy process. Being on the trial would be great! It will be interesting to see what happens if/when approved by FDA. It will be a money game.

bagelstreet225 profile image
bagelstreet225 in reply toLeoPa

Understandable. As always, thank you for responding.

Best,

Pat

Skyshark profile image
Skyshark

If I'm reading slide 9 right, 3 of the 16 patients developed RS. 2 of them having reached a CR and uMRD.

de170d6b23836ee9498a-9e3cbe...

CD20 monoclonal antibodies get the lot (my highlight)

work by latching onto the CD 20 protein on the surface of the cancerous CLL cells and normal B cells and labeling them for destruction by passing T cells.

Both CLL and DLBCL are usually light chain restricted.

I'd prefer to see a new generation of monoclonal antibodies that target Lambda or Kappa light chains. They have developed CAR-T that target these, so why not monoclonal antibodies? Then the CLL and about half the normal B-cells would be targets. That would leave at least some of the normal B-cells and immune system intact.

This would also provide a desperately needed alterative mAb for RS patients when they are CD20 -ve and Rituximab is precluded. CHOP alone has a very poor outlook.

aacrjournals.org/clincancer...

Greenbunnies profile image
Greenbunnies in reply toSkyshark

I thought the problem with MAbs is they tend to be large molecules so can't penetrate the lymph nodes or bone marrow ...

thompsonellen2 profile image
thompsonellen2

I am currently on pirto and venetoclax. Retails for 40K a month (I have commercial health insurance but battle to get pharma company to pay for the part of pirto they won't). Can't stay on them forever because of RT risk and epcoritimab or CAR-T is up for me next depending on if there is a trial I qualify for the former. It is not a walk in the park and according to Brian @ CLL Society, maybe not a cure on its on (you can read his blog about his trial journey on the CLL Society website). As much as I've been a guinea pig for trials, with a 3 in 16 chance of getting RS, I'm not sure my doc would sign me up for that one.

Smakwater profile image
Smakwater

My thoughts are the question "Can I have a cure, without the cost(s)" Emphasis on the (s).

Thanks for asking.

youtube.com/watch?v=45Nj9ya...

JM

bagelstreet225 profile image
bagelstreet225 in reply toSmakwater

Costs. Yes, I get it. Healthcare/medicine has a lot to do with politics/ the politics and finances of medicine. It's grossly unfair and uncalled for.

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