A Heterogeneous Condition: How CLL Can Vary From Patient to Patient

Published on

Topics include: Treatment and Understanding

Watch and wait is recommended for some patients while others start treatment immediately after diagnosis, and some achieve a long remission but require retreatment down the line. Why is the course of treatment different from patient to patient? How many types of chronic lymphocytic leukemia (CLL) are there? A panel of experts including Dr. Michael Keating, Dr. Nicole Lamanna and Dr. Alessandra Ferrajoli explain the spectrum of the disease and correlating treatment strategies, and how strategies have improved with innovative therapies. Dr. Lamanna also shares advice for those living with CLL and coping with watch and wait.

 

Provided by CLL Global Research Foundation, which received support from AbbVie Inc., Gilead Sciences, Inc.,Pharmacyclics LLC and TG Therapeutics. It is produced by Patient Power in collaboration with The University of Texas MD Anderson Cancer Center.

View more programs featuring , , and

Produced in association with and

Transcript

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Jeff Folloder:

Let’s talk about retreatment for just a little bit. People go through watch and wait, people get to the point where they do need a treatment, they go through treatment, they get a reasonable response, and then, six months—year, two, three, four, 10 years down the line, it’s back. Are those people still treatable?  

Dr. Keating:                 

Yes.

Jeff Folloder:               

And one of the people that I have in mind right now is the gentleman who started Patient Power, Andrew Schorr. Andrew went through one of the original FCR treatment protocols, and I believe he got 17 years of good results out of it, and he’s going through treatment again. 

Dr. Keating:                 

Yeah. Part of that’s because he has an additional abnormality in his blood, that’s not CLL. 

Jeff Folloder:               

Okay.

Dr. Keating:                 

So that’s the complicating factor in that, and they should never have lasted that long in remission statistically. 

Jeff Folloder:               

Statistically.

Dr. Keating:                 

But we’re really happy that he did. 

Jeff Folloder:               

I get very giggly, when I hear doctors talk about, well, we achieved this particular result in you, but we’re not 100 percent certain why. My CLL clinical trial, I’m at six years, and another doctor here, Dr. Wierda, would say, yes, Jeff, you’re at the far-right side of the bell curve, and we don’t know why. But that’s okay, right? 

Dr. Lamanna:              

Yeah, I mean, I think this is part of the tricky part about CLL, right? The disease is really not one disease in everybody, because then we would be finding cures for everybody, and so, there is the bell—there’s this curve, and there’s some folks, as Alessandra mentioned, there’s a small percentage of folks who never need treatment for this disease. And, believe me, if we all could find a blood test that we knew that, then we’d do it, and be like, you’re fine, we don’t need to see you again, you’re fine, you’re gonna live with this, and you’re fine. 

But, there’s that huge spectrum of people who get diagnosed, and have extremely aggressive disease, and need treatment within a few years of diagnosis, and then there are people who can go 10, 15, 20 years before they need treatment. Which tells you how heterogenous this disease is, and how much we’re still learning, and obviously, we’ve come a long way in these therapies, that are now available to you all. Really, really phenomenal therapies, that have pushed the curves. And so, there’s a lot of hope, and a lot of availability for you all. But yes, so, somebody does need treatment again, and you might have been in an era where you’ve gotten some of the older therapies, or just a single agent, or an antibody, or combinations. You have all these new potentials of newer therapies. So, yes, there’s a lot of – although we, of course, it’s disappointing to need retreatment, again, but it’s not something that obviously can’t be done. We’re still very hopeful that people will do well, so you have to look at it that way. 

Dr. Ferrajoli:               

And, in the past, it used to be that when you had very few treatments available, you sometimes had to use the same treatment, so the second time, the benefit didn’t last as long. And now that we’re changing completely the type of therapy for some people, they actually the benefit of the second, the treatment, can last longer than the benefit of the first treatment. 

Dr. Keating:                 

Months.

Dr. Ferrajoli:               

So, it’s truly a battle, and a strategy, and everyone has its own story, but there are a lot of options.

Dr. Lamanna:              

And, the other thing that I like to say to folks, is that we liken this, or I try to tell my patients, if you’re in that watch and wait period, or watch and worry period, think of it like, you have a chronic condition, you’re just not needing anything for it right this moment. So if you have other chronic medical problems, like high blood pressure, diabetes, heart disease, that you’re currently taking medications for, you’re just not currently needing any treatment for your CLL right now. And, when you do, we’re treating you for that. So, you have to really think of this as a chronic condition, 

Until we get the majority of folks, right, until we cure everybody, it’s a chronic condition that you need to live with, that hopefully, as we develop better therapies, that your quality of life improves. When you need treatment, you need treatment, when you don’t, you don’t.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Related Programs

Genetic Testing: What Version of CLL Do I Have and How Do I Treat It?

What do doctors look for in genetic tests for CLL patients? How do the results affect the course of treatment? Find out now from CLL expert Dr. Jennifer Brown.

Published:

Understanding CLL Treatment Strategies: Why Watch and Wait When There Are Effective Therapies?

CLL expert Dr. Thomas Kipps discusses the research and rationale behind the watch-and-wait treatment strategy.

Published:

CLL Treatment Goals

Following a treatment plan is like the road map on a patient’s unique journey with CLL. What factors do doctors consider when making treatment goals? Watch now to hear CLL experts Dr. Michael Keating and Dr. Nicole Lamanna discuss the types and objectives of CLL therapy.

Published:

Advertisement
Join Our Community Register for Events Read Our Latest Blog
Advertisement

Page last updated on July 20, 2018