Tag Archive for: watchful waiting

Anxious From CLL Watch & Wait? How to Cope.

Anxious From CLL Watch & Wait? How to Cope. from Patient Empowerment Network on Vimeo.

Many CLL patients who are put on “watch and wait” following a diagnosis. Dr. Catherine Coombs explains this approach and provides advice on how patients can cope with the emotional impact of waiting to treat their disease. 

Dr. Catherine Coombs is an Assistant Professor of Medicine in the Division of Hematology at The UNC Lineberger Comprehensive Cancer Center. Learn more about Dr. Coombs here.

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What would you say to a patient who has a lot of anxiety about having to wait for treatment? 

Dr. Coombs:

The first thing I would say is that anxiety is normal. More often patients are anxious than not because it’s really hard to be told you have a leukemia and that we’re not going to do anything about it. I think that’s really hard to hear. The way that I try to counsel people is that my role as the doctor is to do no harm. If you have a leukemia and there’s no proven way to make you live longer by giving therapy early on, if you’re in that early stage of CLL where you’re asymptomatic, by offering therapy, all I could do is make you worse.  

I could give you a new side effect, I could add a new cost burden. Until I have data to prove that that’s going to make your life longer, which we do not have yet (maybe that will be different five to 10 years from now, but we do not have that yet), I could only hurt you. So, that’s not what I want to do. I want to have you live and thrive.  

The better thing to do, based on what we know now and what we know our therapies can and can’t do is to do the watchful waiting. But the anxiety is normal. Depending on how severe the anxiety is, I have had patients meet with – at least at UNC we have something called the Cancer Center Support Program, which is a group of psychiatrists, psychologists, therapists that can help talk over what it means to have a cancer diagnosis and not necessarily need therapy.  

Then I also provide education on the other health issues that can come up as part of being a CLL patient even on that watchful waiting program. The thing that we talk about the most is the increased risk for infections, which in the era of the COVID pandemic is a major concern. Luckily, we have a lot of ways to decrease the health risk for COVID, whether it’s due to the administration of vaccines, or monoclonal antibodies, which I think we’ll talk about more later.  

There’re a lot of ways that people can live with it. I do think the anxiety is normal. At least in my own practice, I’ve found that most of the time the anxiety lessens with time. Because it becomes a part of who you are. It doesn’t have to be all of who you are: people can live their lives largely the way they did before with a bit of extra knowledge about things that can come up in the future but may never come up at all.  

What Is Watch and Wait in CLL?

What is Watch and Wait in CLL? from Patient Empowerment Network on Vimeo.

Chronic lymphocytic leukemia (CLL) patients often experience watch and wait, but what is it? Watch to learn about watch and wait and what CLL patients can expect during this period.

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Chronic lymphocytic leukemia (CLL) patients will often have a period of monitoring called watch and wait. Watch and wait is also known as watchful waiting or active surveillance. During watch and wait, CLL care providers check blood counts and perform medical examinations on a regular basis to gauge whether any disease progression of concern occurs.

One of the reasons that CLL is sometimes referred to as a “good cancer” is due to the fact that many CLL patients remain in watch and wait for a period of years rather than months. Though some CLL patients refer to watch and wait as “watch and worry,” CLL research has proven active surveillance as optimal for some CLL disease states. This strategy of watch and wait is the standard of care when a patient experiences no symptoms and only has small changes in blood counts.

Brian Hill, MD, PhD:

“We’re taught in much of medicine and in much of cancer that early diagnosis and early treatment is very important. And it is very important for many conditions – breast cancer or we’re taught let’s get our mammograms.

And have an early detection and immediate treatment to cure breast cancer. Similarly, colon cancer – get your colonoscopy, get your diagnosis sooner rather than later. And have surgery so you can have a higher likelihood of a cure. In the case of chronic lymphocytic leukemia, it’s never been shown despite multiple attempts over many decades, that treating someone with CLL is – earlier, is going to impact the outcomes and the big picture. But we do know that treating CLL earlier can lead to more side effects earlier.

So, in other words, if you feel fine and your blood counts are just a little abnormal, and there’s not compelling indication to treat, we can safely observe patients until an indication for treatment exists.”

CLL care providers will monitor blood counts and symptoms carefully to determine when a patient should move from watch and wait to active treatment.

Should Patients “Watch and Wait” Before Starting CLL Treatment?

Should Patients “Watch and Wait” Before Starting CLL Treatment? from Patient Empowerment Network on Vimeo.

What do chronic lymphocytic leukemia (CLL) patients need to know about watch and wait? Dr. Matthew Davids shares the meaning of watch and wait, when it’s appropriate for CLL patients, and which factors are monitored to ensure the best care.

Dr. Matthew Davids is Director of Clinical Research in the Division of Lymphoma at Dana-Farber Cancer Institute. Learn more about Dr. Davids here.

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We have a question from the audience. Linda writes, “I’ve heard that CLL doesn’t need to be treated right away. Is that true?”

Dr. Davids:

That is true for the majority of CLL patients, and it’s actually a very counterintuitive thing. We’re conditioned that if you have cancer that it’s important to be proactive and get rid of it as quickly as possible, the sooner the better, and that is actually not the case in CLL. And we didn’t just take a guess that that’s the best approach. This is actually something that’s been studied in clinical trials. There were several clinical trials launched in the ‘70s and ‘80s looking at an early intervention strategy using a chemotherapy-based approach to see if treating at the time of diagnosis would be better than waiting until patients developed more significant symptoms.

And all of those studies did not show a benefit to early intervention.

Now, more recently those studies have been challenged as somewhat out of date, which is a fair criticism because they used an older chemotherapy drug. And so, there is a newer study now going on in Europe that is looking at early intervention with the drug ibrutinib, which is one of our novel agents for CLL, looking to see if early intervention with ibrutinib (Imbruvica), particularly for patients who have a higher risk form of CLL, may be beneficial.

But we have seen some data now already presented from this study that do not show any improvement in how long the patients live by treating with ibrutinib early, and we do see some of the typical side effects that we’re accustomed to seeing with ibrutinib. So, even with the newer data that we’re seeing, we still do not recommend early intervention for patients with CLL.


I’ve heard this term “watch and wait.” What does that mean?

Dr. Davids:

Yeah, it’s not the best term because it’s very passive. That refers to this observation strategy. I like to think of it more as “active surveillance.” It seems more proactive because you’re doing something about it.

You’re really checking the blood counts, you’re getting your physical exam, you’re checking in on symptoms, these sorts of things, and really keeping a close eye on the disease. And that’s the approach that we like to take

with our patients to really keep them engaged, making sure they’re staying up-to-date on their screenings for other cancers, making sure they’re getting vaccinations, these sorts of things are all the things we do with active surveillance.


How is someone monitored during this watch-and-wait period?

Dr. Davids:

It varies depending on individual patients. We’ve alluded to the fact that there’s different genetic subgroups of CLL already, so there are some patients that have higher-risk disease. The example of that usually is deletion 17p that people may have heard of on the FISH test. For those patients I usually am seeing them every three months or so, physical exam, checking on their history, checking their blood work. But there’s quite a few CLL patients who have lower-risk disease. If they have for example mutated IGHV, if they do not have the 17p for example, those patients may be able to be seen once every six months or so with a similar setup.

I don’t routinely get CAT scans on a regular basis for most patients. Most patients don’t need bone marrow biopsy tests unless they’re starting treatment. So, it’s mostly it’s exam, talking to patients, and checking the blood work.

What Prostate Cancer Populations Will Benefit Most From Telemedicine?

What Prostate Cancer Population Will Benefit Most From Telemedicine? from Patient Empowerment Network on Vimeo

With a lack of staging in prostate cancer, which patients can benefit the most from telemedicine visits? Dr. Leanne Burnham maps out factors that may make some patients lower risk and situations that may warrant other patients to be seen in person to receive optimal prostate cancer care.

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Dr. Leanne Burnham

So, prostate cancer is a very diverse disease. It presents itself differently in the clinic in each individual patient, so who is considered low risk, who is considered high risk is really a personal conversation that you have with your physician one-on-one, and it’s based on a lot of different factors. It’s not as cut and dry as some other cancers where you may break the disease down by just stage, simply stage I, stage II, stage III, stage IV. There’s a lot that goes into determining how aggressive someone’s prostate cancer tumors are. That being said, if you are considered to be low risk, you may be undergoing active surveillance by your physician or watchful waiting and in that situation, telemedicine would probably be a perfect approach where you get your labs done every few months or whatever your physician decides. And they can track your PSA velocity or doubling time and seeing if your PSA is growing, by growing I mean increasing in circulation or if it’s not which would be ideal. If you are more high risk, then you may need to increase your telemedicine visits. And, of course, if you are taking therapies that cannot be done from home, then you would need to go to a clinical setting, so that would include radiation of course, and chemotherapy, immunotherapy, perhaps. If you’re enrolled in a clinical trial where you need to go on-site to receive the medication, then that’s something that cannot just be done by telemedicine, you would have to go in-person.