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What Happens During Watch and Wait?

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Published on July 2, 2018

In some cases, chronic lymphocytic leukemia (CLL) patients are put on a “watch and wait” period and given no immediate treatment for their cancer. What is being monitored during this time? Who is typically put on active surveillance? A panel of CLL experts, including Dr. Alessandra Ferrajoli, Dr. Jackie Broadway and Dr. Micheal Keating, explain why watch and wait is recommended for some CLL patients and what is being observed by their medical team. How can patients stay on top of their cancer care with no treatment? The panel also shares why it’s critical to continue to have regular checkups during watch and wait and factors that indicate it’s time to treat. Additionally, Dr. Nicole Lamanna, discusses the potential upside to being on watch and wait, and what may happen while patients are being monitored. 

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.

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What a wonderful time we had! We were excited like fans at a rock concert, but our rock stars were the medical experts.

— Lynn, CLL town meeting attendee

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Transcript | What Happens During Watch and Wait?

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.

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:

Earlier, I talked about my journey, and the two years that you had me on watch and wait, Dr. Keating. Who here has been on watch and wait? Raise your hand. Do we really call it watch and wait? Do we call it watch and worry? Do we have other, less savory euphemisms for what’s going on?

Dr. Keating:                 

Actually, I think we call it watch and investigate.

Jeff Folloder:               

Well, what are you doing? What are you doing, during watch and wait? What are you doing with us?

Dr. Broadway-Duren:

So, also, during the time of monitoring, during watch and wait, patients are intermittently getting labs evaluated, and they’re calling us with the results. No, so we’re monitoring the labs for any elevations in the absolute lymphocyte count, monitoring symptoms. Because some patients may not have a significantly high white blood cell count. But they may contact us, and say, I’m so tired, I can—I’m in the bed by 10:00 in the morning, or I’m having drenching night sweats, so all of those things are being considered during the watch and wait phase, and also contribute to time to start some type of treatment, which maybe just an antibody, but it’s something.

Dr. Lamanna:              

I think the other way to—I always phrase to my folks about watch and wait, or watch and worry, is that the longer—if you really are fine, and again, that’s relative, but if you’re doing well, I always say, well, let us continue to do what we need to do on the research end of things, as we develop and find better therapies, newer drugs.

 So, while you’re on the sidelines, that allows us to find newer therapies, that might get approved, that may have—are obviously better for the disease, less side effects, maybe, potentially curative—I love when you use the word curative, and we can talk about that. So, but the point is, is that if you don’t need treatment, that’s extra time that we can work on trying to better the disease, and you don’t need treatments. Because all treatments, even with the orals, whatever treatments you wanna call treatment, chemo, not-chemo, whatever term you wanna use, has side effects. And so, if you don’t need treatment, and there’s some data that perhaps, although we’ll see, with some of these new targeted therapies, whether starting treatment is really beneficial if we do that earlier. So, we don’t know the answer to that yet. But, hopefully soon. If you don’t need treatment, it certainly allows us more time to find better therapies, and you to be on the sideline, enjoying life, as it is, right now.

Okay. And that’s the important part, that I know Jeff wants to stress, too, is enjoying the quality of your life.

Dr. Ferrajoli:               

It’s also important to remember that we need to observe everyone, to pick out those very few lucky ones that truly have a smoldering disease, and they do not need any intervention. So, if we would treat, or apply intervention, just at the initial diagnosis, we will actually not be able to identify the smoldering cases. There are a few, but they are there.

Dr. Keating:                 

I think that one of the things that is a weakness of the format that we have for the Patient Power, is that most of the people here, many of the people that are listening in, are being seen by doctors, and groups of people that are fairly well versed in CLL. But, a lot of people are not, and so, a lot of people come to see us from a little country town in West Texas, for example, and we say, watch and wait. And, we never hear from them again, because they don’t think that anything’s happening. But, we—in our spare time, we have a database of around about 20,000 patients, that we try and continue to follow as the labs come along and notice if something is happening. So, even if you’re not coming back to the expert centers, just to make sure that the results of the tests that are being done are sent along to them, then we can think about them. And, you don’t necessarily have to make a 750-mile drive to Texas, or a 5-mile drive in Manhattan, which takes about the same length of time. If you stay in touch with all of the doctors that you’ve been talking to, it’s a really good thing. 

Dr. Broadway-Duren:

Yeah, I think that’s important.

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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