Off ibrutinib x 2 weeks, a novel ultra low dose triple therapy for CLL and Richter's and CLL Society recognized for its reliable robust info

[bkoffman]

How about no COVID-19 news in a post:

I updated my blog with good news at cllsociety.org/…/march-9-20... about my latest lab results 2 weeks after stopping ibrutinib.

• Novel Triple Therapy Combination ( cllsociety.org/…/ash-2019-d... shows promise in Phase I Clinical Trial for R/R CLL and Richter’s patients. Now enrolling for Phase II.

• Where we get information about our CLL is important. We are grateful to see that experts, patients, and caregivers are all recognizing the CLL Society as a reliable and robust source of information. See: cllsociety.org/about-us/cll... more we “frontload” our CLL knowledge, the better.

If you do want COVID-19 info, we are constantly updating our special page with general and CLL specific info: cllsociety.org/covid-19/

Stay strong, we are all in this together, even if we are 2 meters apart.

Brian

[Ernest2]

Many thanks Brian for sharing your good news.

Funny I hadn't thought at all about any consideration for overlap of therapy such as Ibrutinib with CAR-T.

Silly question: How often do they check you still have the CAR-T cells in circulation? Assume once the CLL has disappeared, then there is nothing to promote the CAR-T cells. So much to understand.

Hope while you put the travel on hold you can still get out for plenty of fresh air and exercise, and get rid of the cough etc.

Best wishes,

Ernest

[bkoffman CLL CURE Hero in reply to Ernest2]

My CAR-T cells disappeared sometime between 12-18 months. CAR-Ts will also attack normal B cells.

[Ernest2 in reply to bkoffman]

That's doubly interesting. I hadn't appreciated the point about normal B cells.

Can you have a further round of CAR-T then at some future point?

Best wishes,

Ernest

[bkoffman CLL CURE Hero in reply to Ernest2]

Yes, CAR-T can be and has been successfully repeated when patients have relapsed or have had an inadequate response to the first infusion.

[Ernest2 in reply to bkoffman]

Many thanks for clarifying that. I was familiar with a second batch if the response was inadequate but wasn't sure about the possibility of further treatment after relapse, so that sounds good news.

Best wishes,

Ernest

[bkoffman CLL CURE Hero in reply to Ernest2]

Not many cases but it's been done.

[Hidden]

Congrats Brian. So glad you continue to defy those mutated b-cell buggers!

And thanks for the info about the triple therapy trials, a lot of promising info there for a combo that potentially treats such a wide range of lymphomas.

I would be very curious if this is also being adapted in some way to be combined with venetoclax at lower dosing as there's been some discussion of patients reaching uMRD on less than the 400mg/day dosing.

[bkoffman CLL CURE Hero in reply to Hidden]

I think that makes sense, but I know of no such research and funding for lower dose trials can be hard to come by.

[sllincolorado]

Any reason someone would not do Ultra V if they qualify for the study? Of course this is personal. Unmutated, 17p looks like I am just starting to become resistant to acalabrutinib. No other health issues. My doc who is a specialist per Dr. Sharman's list (but not cll society) thinks it is a good fit and I would not have to travel at all. Community currently has low C19 so potential exposure during infusion should be low.

[bkoffman CLL CURE Hero]

I assume you mean the Umbralisib and Venetoclax (U2-V) trial. I would trust anyone Dr. Sharman recommends. I think it's good trial for those who progress on a BTK inhibitor such as acala.

[sllincolorado]

Thank you. Plus Ublituximab.

[bkoffman CLL CURE Hero]

That's right, the 2 in the U