Skip to Navigation Skip to Search Skip to Content
Search All Centers

"Watch and Wait" With a CLL Diagnosis

Read Transcript
View next

Published on April 21, 2020

Key Takeaways

“We know from studies that have been done over decades that patients who are treated early don't necessarily do better than patients who are watched and waited until they have progression of disease,” says Dr. Ian Flinn, a chronic lymphocytic leukemia (CLL) expert from Tennessee Oncology, explaining why CLL patients are often told to "watch and wait" when they are first diagnosed.

In this segment from a recent town meeting, Dr. Flinn and Nurse Practitioner Camille Ballance define the watch-and-wait period, explain why it’s used as a starting point for many CLL patients, and share which signs and symptoms indicate disease progression and a need to start treatment. Watch now to learn from CLL experts.

This program is sponsored by AbbVie, Inc., Genentech, Inc. and Adaptive Biotechnologies. These organizations have no editorial control. It is produced by Patient Power in partnership with Tennessee Oncology, Bag It and CLL Society. Patient Power is solely responsible for program content.  

Featuring

Transcript | "Watch and Wait" With a CLL Diagnosis

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.

Esther Schorr:

Hi there, this is Esther Schorr. Recently, Andrew and I co-hosted a virtual town meeting and learned from leading CLL experts about treatments, clinical trials and lots more. Let's listen in as we navigate through a CLL diagnosis.

Andrew Schorr:

More treatments than ever before, and so that just reinforces, even at this time of virus, of a dialogue with your doctor about what your personal situation is and what's right for you, correct? It's all about communication. 

Dr. Flinn:

Absolutely. I mean, and for most patients with CLL, you could delay therapy a month or two in this period before starting if you needed to for the vast majority of people. Usually, it's not an emergency to begin treatment, but then once you make the decision there's a huge array of treatment options, and I think more and more of these are using mostly these targeted therapies, either single agents or in combination.

Andrew Schorr:

So CLL is a problem with your lymphocytes, correct? And they've gone kind of kaflooey, and we're trying to correct that if we can. 

Camille Ballance:

I like that word, kaflooey. 

Dr. Flinn:

Kaflooey is a technical term, right?

Andrew Schorr:

Yeah, that's a technical term.

Esther Schorr:

Kaflooey, very technical. 

Dr. Flinn:

I mean, you have a malignancy of the lymphocyte. We're back to the whole immune system. You have a malignancy of the immune system. Thankfully, for most patients, the diagnosis does not mean you need to be treated right away. You can often be watched for periods of sometimes years before requiring any therapy, it's going to vary dramatically, some of these decisions, based on some underlying prognostic factors that you might have, some changes in your chromosomes and other prognostic factors. It could change what type of therapy you need and how much therapy you need, and when that starts. 

Andrew Schorr:

Right. So, Camille, you're there when people are told they have CLL. So, what happens then? People are shocked, okay, and you said, "Well, we need to do some tests." What tests are normally done to get a clearer picture of what's going on for that patient, Camille? 

Camille Ballance:

So we do next-generation sequencing, usually it's a peripheral blood flow, which is nice with CLL, and we can get everything that we need to look for some of the mutations that classify patients as good risk or poor risk.

Andrew Schorr:

Okay, and people, some of us, start watching our white blood count, and I know my number went up way over 200 over four years. I didn't have any treatment for four years, but it's not simply about the number, is it?

Camille Ballance:

No, it's not. It's about all of the counts, so it's about the platelets, if the platelets are rapidly dropping. If the hemoglobin's rapidly dropping, and if patients just don't feel well. I mean, if you have a high white count but your other counts are stable and you're feeling well, then there's not much of a reason to start therapy. If you're doing okay and you're functioning, then you can live like that, some patients, for a really long time. 

Esther Schorr:

So is that where we get to the watch and wait, or watch-and-worry situation? I mean, I know with Andrew, we had four years of that diagnosis, checking blood counts every, what, three to six months? And you wait, and you watch, and you worry. So is that the situation you're talking about, where there's weighing the treatment against where you're at in the progression?

Camille Ballance:

Yeah.

Andrew Schorr:

Well Ian, let me ask you this, what are the indications for treatment? And maybe you could comment, if a woman were diagnosed with breast cancer, she wants it out tomorrow, or many other kinds of cancers. But here in CLL we're saying, "Well, we're going to wait." So help us understand that, and then when do you stop waiting?

Dr. Flinn:

Yeah, no, important point. So usually when we first meet a patient and we're starting to talk to them and you say, "Listen, we don't want to do anything," people think that's crazy, right? I mean, anything you ever have learned about cancer therapy is that the early intervention is the key to success. And CLL and low-grade lymphomas are two exceptions to this rule. We know from studies that have been done over decades that patients who are treated early don't necessarily do better than patients who are watched and waited until they have progression of disease, signs and symptoms of the CLL that's causing issues for them. 

It's not that our therapies aren't good, they're actually excellent right now, they're just not better early than when you use them later. And so that leads to, "Okay, if you're not going to start therapy initially, then when do you start therapy?" So there's a limited number of indications. Basically anemia, a hemoglobin of less than, say, 11, is an indication. Having low platelets, usually platelet count less than 100,000. Big, bulky lymph nodes. I mean, they have to be really pretty big for one to want to start this.

There's also rapid doubling of the absolute lymphocyte count, this is usually just a lead indicator that you're going to get in trouble with anemia or thrombocytopenia, or one of these other symptoms later. It's rare that I ever start patients purely for fatigue. It's happened, I have done that, but usually the profound fatigue is associated with one of these other symptoms.

I guess the other issue is, it was simpler when you had a discussion with patients when it was chemoimmunotherapy that we were using, the decision, it was easier, right? I mean, patients would say, "I don't want chemotherapy, I'll wait." Now when some of the therapies are better tolerated, then sometimes there's a tendency to want to start earlier. I guess I try to resist that and wait until someone truly has significant need and issues that need to be addressed.

Andrew Schorr:

So how important is a patient having a bone marrow biopsy, basically a needle in your hip to take a look at the cells, how important is that now, Ian? 

Dr. Flinn:
It's not that important to begin with, right? So we used to do it to make the diagnosis. You do not need to have a bone marrow biopsy to make the diagnosis. Now, if you're using one of the targeted agents, then even then, say you're getting ibrutinib (Imbruvica), then you don't necessarily have to have one. Many doctors still like to have one prior to going on treatment so they know what the issues are, so if they run into trouble later down the line, they know what the starting point was. And I think it's reasonable at that point, although not necessarily 100 percent.

But then, if the goal of the therapy is to get someone into a complete remission, or an MRD-negative complete remission, then you have to get a bone marrow biopsy, it's the only way to see whether you've gotten rid of every last cell, or at least every last cell that we can find, and that's when it'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.

Recommended for You

View next