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Progressive symptoms in PV: Monitoring for Signs of Advanced Disease

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When a patient walks through my door with a new, worsening symptom, my primary thing is to think of what could be the contributing etiologies to this change in symptom burden. It’s one thing to have fatigue that maybe impacts how you feel in the afternoon. It’s another thing to have fatigue so severe that you can’t get out of bed. So when there is a change in symptom, I need to know about it.

One of the things I think about is whether or not in polycythemia vera: is there a change of blood counts that could be related to this symptom change? Another thing is whether or not this could be related to a change in therapy. Specifically, phlebotomy over time can lead to iron deficiency and patients can actually be symptomatic of that iron deficiency, can manifest with fatigue, restless leg syndrome, problems with concentration, or cognitive issues.

Hydroxyurea is another drug that can lead to severe symptoms or problems in symptoms. So gastrointestinal upset, nausea, diarrhea, can have cutaneous symptoms that are worrisome. It’s very important, too, to monitor for disease progression, and the symptoms can help clue us in to that.

In general, it’s important to know the resistance and intolerance guidelines for polycythemia vera as these changing symptoms might actually lead to a change in therapy or a change in management.

Patients with polycythemia vera can experience a continuum of symptoms that impact how they live with their disease. There can be constitutional symptoms like fevers, chills, night sweats, weight loss. There can be symptoms related to blood clots, things like shortness of breath, chest pain. There can be symptoms related to the abdomen, especially related to enlarged spleen like abdominal pain or discomfort, or feeling full easily.

In general, when we look at symptoms it’s important to see that some symptoms will give us a whole picture of the patient, like fatigue, whereas other symptoms might be more specific, such as night sweats. It’s important to note, too, that although one or two symptoms may not seem bothersome, when taken in aggregate, these can severely compromise patient’s quality of life and ability to function.

head shot of Dr Scherber
Robyn M Scherber, MD, MPH Sr Director, Medical Affairs at Incyte Asst Prof of Medicine at the University of Texas Health Science Center at San Antonio
Dr Scherber is an active researcher focused on developing tools to address symptom burden among patients with essential thrombocythemia, polycythemia vera, and myelofibrosis. She has also been instrumental in the development of strategies to improve quality of life among MPN patients.