The Indolent Nature of Chronic Lymphocytic Leukemia
Participants consider the indolent nature of chronic lymphocytic leukemia (CLL) and how that influences treatment.
PUBLISHED February 21, 2020
Harry P. Erba, M.D., Ph.D.: Doreen, in speaking with patients, do they consider their illness a chronic one that they’re going to have for a while?
Doreen Zetterlund: Yes, I think inherent in the name is that this is going to be a lifetime condition. Long remissions are hoped for, and that’s what we’re all striving for. But it is something that you have to adjust to in your life, to make accommodations for that in your life for treatment, for checkups, and for regular medical intervention.
Harry P. Erba, M.D., Ph.D.: Nathan, how did that information, that’s a chronic illness, affect your lifestyle?
Nathan Ferguson: The chronic portion came probably about a month after I was diagnosed. The first month it was hard dealing with that. And as I got more knowledge and understood the chronic nature of it, it became easier to tolerate. And with the knowledge and these new treatments that have come out, I went from feeling that it was going to be a short-term issue to whatever my options were treatment-wise. And with the new treatments, things are getting pushed out farther and farther. Because of my age at diagnosis, 45 years old, I tend to be on the lower end of the diagnosis range. I have a longer time to deal with it. Knowing that there are more treatments out there, it has switched I believe to a chronic illness, I’m more at peace with it.
Harry P. Erba, M.D., Ph.D.: It’s a very common reaction, by the way. And just yesterday I was sitting with one of my own patients with a different chronic leukemia, and six months into her chronic therapy for that she said, “When I was diagnosed I was in the go-go-go mode: I’m going to tackle this, I’m going to learn about it.” And now it’s six months later, and that might affect how you feel over time. Has that affected you, your relationship with Lisa, or family?
Nathan Ferguson: It has. I look at my initial diagnosis in two stages. The first was the devastating news. I was 45 years old, I had two kids in elementary school, and at that time as I started researching, I came in right as these novel therapies were starting to come online outside of clinical trials. And that was back when you would type in “CLL” on the internet and it would say, “You’re dead in 7 years.” Misinformation was out there. So the first three weeks were really rough on me. I got the knowledge and the current data as things progressed, but it was definitely a trying time initially. And like I said, the knowledge and getting the provider that I needed, that helped.
Harry P. Erba, M.D., Ph.D.: Lisa?
Lisa Ferguson: I didn’t understand the chronic portion of it in the beginning. The first provider that Nathan saw, she very much made it seem like we’re going to do chemotherapy and then you’re good to go. As he was seeing his second provider—he had a second provider, and then we went for a third opinion with Dr. Flinn—the reality of it sunk in for me. And I certainly was grateful that Dr. Flinn could explain that this is becoming more of a disease that you have to manage for the rest of your life. Because of course, I feel like we’re young in the sense that he was 45 years old, I was 35, and our children are young. So initially it was very difficult for me to imagine if the worst were to happen. And we had also just moved to a new state, I’d started a new job. It was a very challenging time for us in general.
But I think as time went on we understood that it is unlikely for him to die any time soon. And I think when you’re constantly dealing with something every day, it just becomes your new normal. It’s not like you feel this shock or overwhelming grief forever. Initially you do. I think, too, we have children who are young, so it forced us to not focus too heavily on it. The kids still needed us, still had their own problems and things that we had to deal with, and that was helpful. But yes, initially it was a very shocking thing to deal with and it was rough.
Harry P. Erba, M.D., Ph.D.: We’re going to come back to talking about your children. Ian, I want to come back to you though. It sounds like Nathan went into therapy quite quickly, and we’ll talk about why that might be, but does everyone need therapy immediately?
Ian W. Flinn, M.D., Ph.D.: No, thankfully not. Many patients are diagnosed these days through a health maintenance examination. They get a CBC [complete blood count] drawn. Their physician realizes they have a mildly elevated white blood cell count. They’re completely asymptomatic and really have no need for therapy at that time.
We know through decades of clinical trials that we do not need to start therapy at the time of diagnosis. This is one of the hardest concepts to get across to patients to begin with. They say, “You just diagnosed me with a cancer, and you want to do nothing? You must be crazy.” Everything anyone has ever learned about treatment of cancer is that early therapy is the key to long-term success. Diagnosis early and then treatment. But this one of the exceptions. And we know that our therapies today are excellent. They are really good. They’re so much better than they were a decade ago.
But people aren’t necessarily better off being treated early in the course of the disease than waiting till they start to show signs or symptoms of it. I tell patients that if you come in to me and the first thing I ask you is, “Can you tell that there’s anything wrong?” and they say, “No, I can’t,” then there’s no medicine that I can give you that’s going to make you feel better than that. And so, we’re oftentimes better off waiting until there are other clinical manifestations; they start to develop problems from the disease, and then we start therapy at that time.
Harry P. Erba, M.D., Ph.D.: Ian used some of those words, “watch” and “wait.” Camille, what do patients tell you about this watch and wait approach?
Camille Ballance, MSN, FNP-BC: What’s interesting is that we’ve had some patients come to see us who actually want to watch and wait, where they’ve been to other providers and they know enough about the disease or they want to push treatment off. I just try to tell patients that, like Dr. Flinn said, as long as they’re feeling good and there are no obvious reasons to start treatment, then it’s not going to harm them in the long term. Because I think that’s a question they have, right? What kind of damage is this going do to me if we don’t do anything right now? And so, you just have to reassure them that there are not going to be any long-term issues with survival or organ damage if we don’t do anything.
Harry P. Erba, M.D., Ph.D.: But Doreen, some patients say it’s not watch and wait, it’s watch and worry.
Doreen Zetterlund: Yes.
Harry P. Erba, M.D., Ph.D.: So how do we deal with that?
Doreen Zetterlund: I think the most important thing is to educate yourself. And with chronic lymphocytic leukemia [CLL], we usually have time before we need treatment. It’s so important to educate yourself and make sure that you’re getting accurate information. The CLL Society was formed by a group of patients, led by a doctor who was a patient with CLL himself, and knew the importance of trying to get accurate information out there because there is so much on the internet that will increase that worry.
If you educate yourself before you need treatment, I call it frontloading your education before you need it. Learn the options out there. Learn your markers and what the best options are for your CLL. And then you can sit back and wait and know what to look for. Of course, your care provider will be watching you closely. And then when it’s time to start treating, you have whatever treatment is suggested. You have an idea of, what are the side effects of that treatment? What are the benefits of combination treatments? I think education is the most important thing in that watch and wait period.
Harry P. Erba, M.D., Ph.D.: Camille?
Camille Ballance, MSN, FNP-BC: I would add to that because I completely agree, but I also think it’s important to be careful of where you are going for your education. As you were saying, there is so much information, but not any wisdom behind it or context. The people can get really afraid.
Doreen Zetterlund: And cllsociety.org is the organization: there are all sorts of resources, videos, a glossary of terms, treatments, and doctors who specialize in CLL. There’s so much information there, and that group has culled the information to make it current and accurate.