Marsena Pelton, MSN, RN, OCN: Dr Sharman, what is chronic lymphocytic leukemia [CLL] and how does it affect patients?
Jeff Sharman, MD: Chronic lymphocytic leukemia is a cancer of the immune system. Specifically, it’s a cancer of what we call B cells. Within the immune system, you have the primitive immune system and the adaptive immune system. The primitive immune system just sort of jumps on the bacteria and gobbles it up.
The adaptive immune system is what helps you learn and adapt. It’s why we get vaccinations — to get our immune system prepared for the next time we encounter something. B cells are specifically the cells that make antibodies. B cells are also the cells that can go ahead and create chronic lymphocytic leukemia. It tends to be a slow-growing cancer for most patients. It is an accumulation of these cells in places where they don’t belong. Frequently, we’ll identify patients with blood count abnormalities. Their white blood cell count will be too high.
Alternatively, sometimes we see that those (cells) can collect in lymph nodes and patients can end up with enlarged lymph nodes, or they can collect and accumulate in the spleen, so patients get an enlarged spleen, or the bone marrow where they may impact the production of other cells, so patients may have low red blood cells or low platelets. Overall, it’s a cancer that accumulates in those places and then at some point in most patients, may need to be treated.
Marsena Pelton, MSN, RN, OCN: Dr Sharman, what are the signs and symptoms of CLL?
Jeff Sharman, MD: Over time, as patients have CLL that may accumulate with time, we don’t always actually jump into treatment right away. It’s kind of an unusual cancer in that simply having the diagnosis doesn’t mean that you need to jump into therapy. Consequently, you can watch it and over time, the symptoms that evolve can be abnormal lymph nodes, swollen lymph nodes in the neck or armpits or groin. They can also be within the chest or the back of the abdomen where patients may be less aware of them, but sometimes we follow those with CT [computerized tomography] scans.
It can cause low blood counts in the other cells, so patients can have low red blood cells and be anemic or they can develop low platelets and be more at risk of bleeding. Beyond those, sometimes we see patients at increased risk of infection. This is a cancer of the immune system, so maybe we shouldn’t be surprised that the immune system doesn’t work perfectly well. It can also be associated with this sort of difficult-to-characterize fatigue. Fatigue unfortunately is a common symptom and sometimes it’s a little bit difficult to tell what’s causing the fatigue, whether it’s caused by the leukemia or other things going on in the patient’s life. But those are the symptoms that are probably the most common to patients with CLL.
Chronic lymphocytic leukemia for many patients is a slow cancer and not one that requires therapy right away. In fact, in probably the majority of cases we’ll simply observe a patient over time. This idea of watch and wait, or treat when you need to treat, rather than treat just because it’s there is something that takes a little bit of time to explain to a patient as to why that can be the case.
Marsena Pelton, MSN, RN, OCN: Dr Sharman, how are patients typically diagnosed with CLL?
Jeff Sharman, MD: For a patient who is diagnosed with CLL, oftentimes they may be referred to a medical oncologist just because they have abnormal blood counts or it’s common that they may have had a test performed called flow cytometry, which is a test oftentimes just on bloodwork that’s able to tell us the diagnosis.
In terms of talking to patients about what to expect, the reality is many patients are going to live asymptomatically with their disease and their disease is going to be followed by bloodwork alone. We’ll be following them over the future to sort of try to understand their particular disease, how quickly it is or isn’t growing. Then that’s going to lead into when and whether or not a therapeutic intervention is going to be necessary.
And so, for many patients who were asymptomatic to begin with, where this was incidentally discovered and it’s really just learning to live with a new diagnosis of cancer that you’re not necessarily jumping into therapy, it can be some of the more awkward emotional complexities to overcome for these patients. Hopefully over time, if in fact their disease isn’t needing therapy, and probably when most patients are diagnosed, we might estimate that one-third of patients may not ever need therapy. One-third of patients might not need therapy now, but quite possibly will need therapy over the next few years. Then there is a group of patients who might need therapy up front.
Amongst those patients who are able to watch and wait for a number of years, we can hopefully continue to do that simply by monitoring their blood counts. They may not necessarily even have an experience of having symptoms from their disease in many cases.