CLL Prognosis: What Can Genetic Testing Reveal About Progression?

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At a recent town meeting in Atlanta, GA, chronic lymphocytic leukemia (CLL) experts Dr. Jonathon Cohen, Dr. Kerry Rogers and nurse practitioner Mona Shums gathered to discuss the impact of genetic mutations on a patient’s prognosis, disease behavior and treatment decisions. What testing is recommended for patients on watch and wait? The panel explains what patients and care partners should bring up with their healthcare team, indications of disease progression and ways to identify high-risk and low-risk patients. Watch now to find out more.

This town meeting was produced in partnership with Winship Cancer Institute of Emory University and sponsored by AbbVie, Inc., Pharmacyclics, LLC and TG Therapeutics. 

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Produced in association with Winship Cancer Institute

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:

So, we’re doing all this wonderful watch and wait, or watch and worry as the patients call it. And you guys are monitoring all this stuff, what testing should we, as patients and caregivers, be discussing with our CLL team? What kind of diagnostics need to be done and why are they important?

Mona Shums:              

I mean, I think it’s important to obviously have a close relationship with your physician because one, you listen to your own body to know when things start changing and when you should be able to contact your physician and say something is different, and then that prompts them to maybe delve a little bit further into what are we missing? Do we need to do things outside of the routine diagnostic stuff that we’re doing to see is there a progression of disease, or do we then now need to start treatment? And then other things like side effects increase your chance of infection; and so that’s another component where if they start developing recurrent infections that don’t seem to be getting better then that could be indicative of something else going on.

Jeff Folloder:               

So, we’re doing the standard blood test, what did you call it? The CBC with a differential? Or something like that? Which pretty much everyone in here has probably had. But there are other tests with fancy acronyms, there’s the FISH test, and the FLOW test, and all these, and the bone marrow biopsy. Do we need to be discussing these with our team? And when is it appropriate to have a FISH test? When is it appropriate to do the FLOW test? When is it appropriate to have you stick the corkscrew in our hip bone? 

Mona Shums:              

Yeah, I think initially the initial diagnostic workup is pretty comprehensive; important to have a baseline, to know what your baseline is.

Jeff Folloder:               

So, what does a FISH test tell us? 

Mona Shums:              

So, important things like what makes you high-risk? When would you consider starting treatment versus doing the watching and waiting, or watching and worrying? So, looking at high-risk markers, cytogenetics, genetic disorders that would probably have your physician initiate treatment sooner rather than later, or vice versa. You are low risk, and that you could do more watching and waiting, as opposed to initiating treatment. 

Dr. Rogers:                 

Can I add something?

Jeff Folloder:               

Absolutely!

Dr. Rogers:                 

Yeah, so first of all it’s never a bad time to discuss these things with your doctor, really just even if it’s not the right moment to do these things it’s always a good moment to talk about these things if they’re on your mind. So, I think the discussion of the them can be definitely like you said, the first comprehensive visit even if you’re on observation and aren’t getting a treatment. And then any other visit that you think of them, right? So, maybe you just came here and you’re saying you’re really fired up to talk about these tests now with my doctor.

When to do them is a little bit different. So, some of those FISH testing, they do look for markers, which I think we’re gonna talk about in more detail a little later, so I don’t wanna spoil the whole surprise. But they do help you know how long you can expect to be in watch and wait, and it’s an average, so it’s not everybody. So, it can say hey is it probably gonna be like two years, or closer to 10 years before you have to do something? Now, each person is an individual but it helps give you a little idea how long before you develop those things I was things I was talking about potentially.

And then the FISH panel testing and something called IGHB Mutation Status helps us pick, and we can explain those later, so don’t think I’m not gonna talk about it more. Those help you pick which treatment might be best for you, in fact, as a CLL specialist I have a lot of trouble helping someone decide what treatment to take when it’s time to do treatment if I don’t have those test results. If you have some time to discuss treatment before you really need it, that’s a good moment to make sure that testing is done so that you know which treatments to talk about. Because it now plays a big role in what you pick as a treatment.

And then a lot of people like having them done when they get diagnosed so that they know what to expect from their CLL in the future. So, it’s not something that has to be done for everyone when they’re diagnosed but some people really want that information. And I’ve had two groups of people when you recommend observation, or watch and wait. One group of people says, okay what are we looking for? When do I come back here? And start worrying about what their fatigue level is and all these other things. And one group of people say, sweet, thank you very much, whenever you wanna see me back is fine, I’m just gonna leave here and go back to do and I’m not gonna think about this again until you say I have to come back here.

So, you’ve got two responses that, and people that you think won’t need treatment for quite some time that are in the excellent, I’m just gonna leave here and put this out of my mind for three months until I come back; probably don’t want those FISH testing and everything at the time they’re diagnosed. People that really are planners and want to know what to expect in the future usually do want that testing. And I don’t know if you guys have other approaches to that.

Dr. Cohen:                  

The other thing I would say is at any time your physician asks you to do a test, ask why are we doing this test and how is it going to help you take care of me? 

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.

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Page last updated on January 17, 2019