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Prevalence, Diagnosis, and Management of CLL, MCL, and SLL


Brian Koffman, MD, and Callie Coombs, MD, provide the prevalence and incidence rates of chronic lymphocytic leukemia (CLL), mantle cell lymphoma (MCL), and small lymphocytic lymphoma (SLL), and describe how the diagnosis and management of CLL/MCL/SLL impacts a patient’s quality of life.

Ryan Haumschild, PharmD, MS, MBA: Dr Coombs, I’ll turn to you. What is the prevalence of CLL [chronic lymphocytic leukemia], MCL [mantle cell lymphoma], and SLL [small lymphocytic lymphoma] in the United States?

Callie Coombs, MD: The annual cases, best estimated by the SEER [the Surveillance, Epidemiology, and End Results] data set, captures a lot of our population. It estimates just over 20,000 cases a year of CLL. Mantle cell lymphoma is quite a bit less common, about 4000 cases per year. To add to what Dr Koffman mentioned about the CLL/SLL patient journey, mantle cell lymphoma is different. It’s considered intermediate, between aggressive and indolent, but more often patients need treatment at first presentation. However, a subset have what’s called indolent lymphoma, and those patients typically have a leukemic non-nodal presentation. They can survive and thrive without treatment on an observation period in some cases. There are differences in the clinical presentation, but I agree about how difficult it can be to hear “watch and wait.” It’s important to spell out that that’s not doing nothing. That’s something I try to emphasize—how important that is.

Brian Koffman, MD: I’ll add 1 thing. I’m going to focus on CLL and SLL. That’s what I know. The incidence is about 20,000, but the prevalence is growing. That’s good because of all the great new therapies we have. First, we’ve diagnosed it early. Fifty years ago, people came in with massive adenopathy or recurrent infections. Now it’s a routine blood test. You go for a hernia surgery, get a lab test, and they said we better recheck your blood count. We noticed something. Many patients are asymptomatic at the time of diagnosis. We’re finding it earlier. We’re finding it in younger people. Not only that, but we’re living longer because of the great therapies we have. So 20,000 of us are being diagnosed every year, but only 6000 or 7000 are dying every year. Those numbers are growing. To be qualified as a rare cancer or a rare disorder, you have to be fewer than 200,000. We’re pushing that 200,000 limit, and we’re probably going to pass it soon.

Ryan Haumschild, PharmD, MS, MBA: I appreciate that background. It’s so important to have these new therapies. That’s the exciting part of being in this space: how do we allow people to live longer but also improve quality of life? Quality of life is a consideration that sometimes we don’t give enough credence to. Being able to function in our jobs, to treat patients, to be an active member of our society and our family is really important. Dr Koffman, can you talk about how the diagnosis and management of CLL, MCL, and SLL impact a patient’s quality of life?

Brian Koffman, MD: The impact will vary from patient to patient, depending on how aggressive their CLL and SLL is. We have to talk about the impact before and during the pandemic. For a lot of patients, the CLL was an annoying thing patients had to manage. But it wasn’t that much different from managing their blood pressure. They’d see a doctor, they’d get their blood work done, [and they’d have] an occasional scan but not too often. It would be a background issue and not really have a tremendous effect on them. But it’s a cancer of the immune system, and the COVID-19 pandemic has had a tremendously negative deleterious effect on patients. To a large extent, patients are still very frightened about COVID-19, and with good reason. As a result, we’re dealing with a lot of depression and anxiety.

We’re dealing with a delayed second diagnosis. Patients aren’t taking care of their blood pressure, their diabetes. They’re not getting their mammogram or Papanicolaou test. They’re afraid to go to a clinic because they can get COVID-19 in a medical facility. That’s a huge issue. This immunocompromised state is raised to the forefront. Patients with CLL before lived a normal life, but now they’re fighting to get on a plane to go to a grandkid’s birthday party. It’s different world since the pandemic [started in 2020].

Ryan Haumschild, PharmD, MS, MBA: It’s important that we consider that. Quality of life leads to how well patients will sustain on therapy, how well their motivation for completing therapy would be, and ultimately how well they could do in their course of treatment.

Transcript edited for clarity.

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