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Redefining Watch and Wait

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Published on February 19, 2020

Key Takeaways

  • Some CLL patients will never need treatment. And those who do, might not need treatment immediately.
  • If you are in the watch and wait—or active observation—period, use this time to study the disease and the latest therapies so you are prepared to make decisions if and when you do need treatment.
  • In addition to your friends and family, look for support from those on your care team, including doctors, nurse practitioners, social workers and psychologists.

In this segment from our "Facing CLL Together" Town Meeting in Arlington, Texas, Dr. Nicole Lamanna, a chronic lymphocytic leukemia (CLL) expert from Columbia University Medical Center, explains why she uses the term “active observation” rather than the more commonly used “watch and wait” to define the period between diagnosis and treatment.

Because this phase can last for years, and some patients may never need treatment, it can be stressful for CLL patients and their families, earning watch and wait the nickname “watch and worry.” Dr. Lammana feels strongly about redefining this phase of the CLL journey and hopes others will join her. Watch now to hear from a CLL expert.  

This program is sponsored by AbbVie Inc., Genentech, Inc. and Adaptive Biotechnologies. These organizations have no editorial control. It is produced by Patient Power and Patient Power is solely responsible for program content.

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Transcript | Redefining 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.

Carol Preston:                         
Watch and worry is what many people call it.

Dr.  Lamanna:             
It really should be active observation. I make this plea all the time because you guys are worried, and that makes sense; and so, active observation. I like to use a different term, because you know if you don’t need therapy you get to—and again part of that—totally different cancer. Which is why they shove everybody out the door going "we’ll do a CBC in three months, because you don’t need treatment, I don’t have much time for you." But the active observation is very important because if—until we have a cure that everybody can get therapy as soon as you need it, and it’s done, and we can move on, there are patients that never need therapy, there are a quarter of patients who never need treatment for their CLL.

And so, if I knew who those individuals were, then we could do a test, a blood test, and say that "You don’t need treatment, you’re fine, live your life," that would be wonderful. But until then, active observation is very important because we then, remember on the back end you guys get to watch all of what we’re doing to move the field forward, all the new therapies that are evolving, all of what we’re learning and pushing forward that you may benefit from if you need treatment sometime in the future. Then you get to watch all of that on the sidelines. If you don’t need a therapy, that may—even some of these oral therapies may give you a side effect right now. If you don’t need it; you don’t need it.

So, I think it should be active observation, and with that comes the caveat of the support and the caregivers, and our extended providers; the nurse practitioners, the social workers, psychologists. I know we’ll get into all that stuff, but our active observation period is very important, and we just need to help support you through that active observation period; because the watch and wait is a terrible term.

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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