Is There Hope for a CLL Cure?

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Dr. Michael Keating, Founder, CLL Global Research Foundation

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Jeff Folloder, Moderator and CLL patient advocate

Experts responded to listener questions during our January 13, 2023 virtual town hall. Watch the full webinar here.

Jeff:    
Is there a hope for a cure for CLL?
Dr. Keating:   
Well, I think it’s very difficult because to say that you’ve cured it means that the patient never gets a recurrence of the disease until they die. But no one wants to have that as an end point. So, I think we just need to say to define a surrogate. And I think probably a patient still continuing in complete remission for more than 10 years and the disease doesn’t recur when you take them off treatment – I think that’s an effective treatment, because the patients are living a normal life by and large, and that’s what they’re very interested in.
From the point of view of what Dr. Jain was talking about before with the local physicians, I think it’s very important that an institution, such as MD Anderson, plays a pivotal role in educating the local physicians, because there are confusions as to what is the best BTK inhibitor, and eventually it’ll be which is the best BCL-2 inhibitor. So that I think one of the things that I want to institute through CLL Global is a very wide-spread education program for patients so that they understand what needs to be done.
Many patients, for example, don’t want to have a marrow done, so we have to demonstrate to them that we get additional information from the marrow that’s going to tell us the best way to treat them. And I think there are so many different clinical trials that are published in journals that the average local oncologist doesn’t read, so I think it’s important for us to have things like this for patients about a general approach to CLL and advice to them as patients early on. They’ll have different decisions they have to be making with their local doctor and the academic centers over a period of 15 to 20 years now, so we have to develop relationships with the community physicians.                                                                                            
You know, believe it or not, CLL is a disease of older people. They don’t like to travel to big cities, and many of them are on fixed incomes, and they can’t afford to stay in nice hotels and go to restaurants when they come down here. So that we have to – when Dr. Jain was putting up the list of priorities, I’m sure the vast majority of people in even our own department of leukemia who are not specializing in CLL would know what to recommend.
So, we really do need to get a glossary of terms. What does MRD mean, you know – some of the terms like even “the mutation status,” that’s not something that’s easily explained, but I think we can explain it to patients in ways that they understand. So, I want to see if the CLL Global can mount a program such as this. So I think if we just had scheduled things, like MD Anderson Talks to Patients with CLL and other series, MD Anderson Speaks to Local Physicians About CLL.
I think education of the emerging treatments and carrying the sense to the patients and the community physicians that patients are being effectively treated, and we have to make this accessible to the whole state of Texas. And that’s what I’m going to do with my spare time over the next five years or so.
Jeff:    
That sounds great, Dr. Keating. I guess I can put a very sharp point on this. It sounds to me like we are continuing to make progress, and we’re getting closer to that cure that is at the heart of your CLL Global mission. So, thank you from one of your former patients.

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