MPN-Related Fatigue Has a ‘Profound Effect’ on Patients’ Quality of Life

Patients with myeloproliferative neoplasms (MPNs) experience a number of symptoms—and fatigue is one of them, explains Patrick Buxton, RN, BSN.

MPNs are types of blood cancer and occurs when there is an abnormal change in stem cells within the bone marrow, according to the Leukemia and Lymphoma Society. This abnormal change can lead to increased amounts of white cells, red cells and platelets. The main three types of MPNs include essential thrombocythemia, myelofibrosis and polycythemia vera.

In an interview, Buxton, who is a clinical nurse coordinator with the hematology department at Fred Hutchinson Cancer Center, spoke with Oncology Nursing News about the symptom of fatigue that patients with MPNs often experience.

Oncology Nursing News: How does fatigue affect a patient’s quality of life?

Buxton: Fatigue has a profound effect on patients’ quality of life. A lot of people don't realize that if you have chronic fatigue, especially from MPNs, it can actually be debilitating. They [may] not have the energy to go out and work, participate in family events and life in general. And they just don't really feel well. Just overall.

It is important to monitor these patients’ labs to make sure that they stay within the range for their condition to ensure that they don’t end up developing those symptoms again, because when your blood counts become so high that your blood basically becomes a sludge, you definitely feel it.

Fatigue is a very subjective side effect. How do you try and understand the severity of an individual’s fatigue?

We ask questions of how it is interfering with their day-to-day life. Do they have the energy to go about their day? Do they need to take breaks and several naps? There was once a patient that had fatigue so bad, she could barely get out of bed in the day. We were able to help get her condition under control, and then she was able to get back to her life. It was very hard for her to be in bed because she had 2 small kids.

We were able to kind of dial in her disease and get her started on a medication regimen. She was able to tell with actually her levels of fatigue how her blood counts were doing. She could tell when they were starting to creep up a bit. And we would address her adjust her medication based on labs. But sometimes she would call and say ‘Hey, could I get my labs a couple weeks early? Because I'm noticing my symptoms are starting to come back up a little bit.’ She would be very proactive about trying to keep that under control.

What are some ways a nurse can help patients work through and control fatigue?

A lot of it is to assess how it is affecting their daily life. Sometimes fatigue can also bleed into other things; it is hard to differentiate. Especially with MPNs, [ensuring that] patients maintain good hydration and adequate nutrition is very important. Because once you kind of get stuck in a downward spiral, it can be very hard to get out. Making sure that you educate patients and making sure that they are trying to get a good amount of exercise daily—even if it’s just getting out of bed, pushing yourself a little bit each day to try to get that energy going again, and making sure that you eat and drink enough to keep going [is important].

Hydration cannot be stressed enough, a lot of people don’t hydrate with water, as I have come to realize, and so there’s been a lot of education of patients have like, ‘Oh, I drink all the soda.’ And I’m like, ‘That's not really helping. You need to drink water, especially when you have this condition, you need to keep on top of things.’

What advice would you offer other nurses who work with patients with MPNs?

Build up that trust with those patients. Have the patient trust that you will take their symptoms seriously when they report them to you.

A lot of patients don’t necessarily like to open up — to say, just the nurse — about their fatigue. But if they are not necessarily within a short distance of your clinic—we have a lot of patients that are in eastern Washington—establishing that line of connection, can be key. Just being like, ‘Hey, let us know, even if you don’t think it’s important,’ ‘Let us know because you don't know if it’s a sign of something greater, you know your own body.’ And ‘You can tell us when something’s not right, we can always do labs and see. And based on those results, maybe we might do a medication change.’ We might tell you to follow up with your primary care, but we’ll always do something with those lab results.