'No Symptom is Too Small’ for Patients With MPNs


Patients with MPNs can potentially experience long asymptomatic periods, and it’s up to patients and providers to remain vigilant as they monitor and manage symptoms.

With myeloproliferative neoplasms (MPNs) — a group of blood cancers that causes the bone marrow to overproduce red or white blood cells or platelets that can often come with long asymptomatic periods — it is crucial for both providers and patients to remain vigilant as they monitor and manage symptoms as they arise.

“MPNs are rare, and the nurse/nurse practitioner takes the time to listen to the patients and educate them about symptom management,” Alfa Lafleur, an advanced practice registered nurse at Florida Cancer Specialists and Research Institute Trinity Cancer Center in Trinity, Florida, told CURE®.

Lafleur explained common symptoms experienced by patients with MPNs, resources that are currently available and more.

Q: What are the common symptoms of MPNs that patients will typically need help managing?

A: MPNs include myelofibrosis, essential thrombocythemia and polycythemia vera, and they share similar symptoms. I like to think of the symptoms in categories. First, inflammation-related symptoms caused by the inherent process of the disease resulting in weight loss, night sweats, fever, fatigue and just feeling unwell. Secondly, microvascular-related symptoms related to dysregulation of the JAK2 pathway causing neuropathy in the hands and feet, headache, vision changes, and sometimes painful rash. Third, symptoms related to enlargement of the spleen like early satiety, left upper quadrant discomfort, fullness or pain. Specifically with polycythemia vera, itching can be really severe.

Q: How can individual presentations differ when it comes to patients with MPNs?

A: If symptoms like fever, chills, night sweats, bruising, bleeding, weight loss and fatigue interfere enough with the patient's day-to-day life, they tend to present to their (primary care provider) for evaluation and then get referred to oncology. Those that experience (deep vein thrombosis), (pulmonary embolism), (myocardial infarction, or heart attack), (cerebral vascular accident, or stroke) or pancytopenia (low numbers of red and white blood cells and platelets in blood) from myelofibrosis or transformation to acute myeloid leukemia, usually end up hospitalized and the oncologist is consulted for further management.

Common symptoms of MPNs may be related to inflammation, the microvasculature and the spleen.

Common symptoms of MPNs may be related to inflammation, the microvasculature and the spleen.

Q: What are some key responsibilities of nurses when it comes to helping patients manage these symptoms?

A: The nurse plays an important role in managing symptoms for these patients along with disease burden spectrum. MPNs are rare and the nurse/nurse practitioner takes the time to listen to the patients and educate them about symptom management.

Q: In terms of symptom navigation and management, what sets MPNs apart from other cancers?

A: Patients with MPNs can live many years with their cancer, undergoing different types of treatments with their associated side effects and symptoms. This experience can be really frustrating and upsetting. There is also the fear that their MPN will transform into a more aggressive cancer such as acute leukemia or that they might experience (a heart attack) or (stroke).

Q: How can a lack of attention to symptoms adversely impact outcomes for patients with MPNs?

A: Although the symptoms of MPNs typically worsen over time, it is not unusual for these patients to be asymptomatic for long periods of time. The nurse remains vigilant in assessing for symptoms as early identification that the disease may be worsening or transforming can result in improved patient outcomes.

Q: How has education and training for symptom management for providers evolved in recent years?

A: The amount of education available from cancer institutes and other MPN foundations has grown exponentially. Education and training (are) available online or in person at conferences. These resources have been invaluable to me as I helped to manage my patients.

Q: What tools and resources, such as apps or support groups, are currently available for patients looking for help as they navigate and manage their symptoms?

A: The MPN Research Foundation not only provides education to providers, they support the patient with hotlines staffed with counselors who provide emotional support or assist in finding resources and support groups. Voices of MPN has a phenomenal app that helps the patient to track their symptoms, educates on the disease process and offers other resources and support to the patient.

Q: What advice do you have for patients regarding how they can best manage their symptoms?

A: My best advice to patients is to remind them that they are not alone in this disease. No symptom is too small to bring to the attention of your nurse who is more than willing to assist with the physical and mental challenges that come.

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