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.
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 😜
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.
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;
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.
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.
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.
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
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.
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.
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.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.