Managing polycythemia vera (PV) often resembles a tightrope walk. One moment you may be sharing meals and laughter with loved ones, and the following moment fatigue or a pounding headache can drain your energy. While daily fluctuations throughout the day are unpredictable, modifying schedules and everyday practices can support your well-being for you while still allowing participation in the pursuits that matter most in life and enjoyment, and keep you active.
According to Naseema Gangat, a professor of medicine at Mayo Clinic, individuals with polycythemia vera (PV) generally do not need to limit their normal activities. Instead, they should be mindful of their body’s signals and pace themselves to avoid exhaustion.
Naseema Gangat advises that fatigue and stamina can serve as indicators of one’s physical state. She emphasizes the importance of maintaining a healthy hematocrit level, as poorly controlled blood counts may exacerbate symptoms and increase the risk of complications, saying ‘Fatigue and stamina can be your guide’.
“Any significant change in symptoms or blood counts should be discussed with the healthcare team,” she said.
This involves balancing active days with rest days to prevent burnout, a common pitfall for individuals with chronic illnesses.
People with chronic illness often fall into a difficult cycle, she explained. “When they feel good, they push themselves really hard, and then they crash for a couple of days (or longer),” she said. To help prevent this cycle, plan for more physically active days as well as days when the body has time to rest and recover.
Setting realistic expectations is key, warns Dr. Cannity, cautioning against perfectionism. Even small actions, such as gentle stretches or mindfulness exercises, can be beneficial on challenging days, and as she says, ‘still count’, and ‘And beware of perfectionism here’.
Fatigue is a prevalent symptom of myeloproliferative neoplasms (MPNs), but there are practical strategies to manage it. If stamina decreases or recovery becomes difficult, individuals should consult their healthcare provider for additional support.
Naseema Gangat states that most people with PV can continue working full-time without requiring special accommodations. However, both the condition and its treatment can impact energy levels, leading to fatigue and reduced stamina, as Dr. Gangat notes, ‘can cause fatigue and reduced stamina’.
If fatigue begins interfering with work, the following accommodations may help: flexible work hours, short rest breaks, and working from home when possible. These are similar to reasonable accommodations that other people with cancer may request at work. If fatigue is affecting the ability to do a job, discuss it with the care team before making major decisions about hours or workload.
Treatment Goals and Options
The main goals of PV treatment are to reduce the risk of blood clots and control symptoms, according to Dr. Gangat. Keeping the hematocrit below 45 percent often helps. This is usually done through a procedure called phlebotomy, which can lower the risk of clots. It may also improve headaches and other symptoms related to blood circulation.
Low-dose aspirin is commonly used to help prevent blood clots. It can also improve circulation-related symptoms. If these approaches are not enough, a doctor may recommend cytoreductive therapies. Dr. Gangat said hydroxyurea and interferon are common first-line options. These treatments may also improve PV-related symptoms and quality of life.
Quality of Life and Support
Finding joy after a PV diagnosis does not have to be complicated, Dr. Cannity said. She recommends starting small by noticing moments that can get lost in the busyness of everyday life. Examples include the smell of coffee in the morning or a new episode of a favorite show.
Dr. Cannity emphasizes the importance of seeking support from others and communicating openly about one’s needs. She encourages individuals to ask for help when needed, whether it’s someone to listen or offer encouragement, and warns against withdrawing from social connections, saying ‘Don’t forget to kindly ask for what you need from others’.
Avoid the temptation to shrink back from the world, Dr. Cannity said. The best thing one can do during times of stress is to re-engage with those supports and keep doing what is known to work. If reconnecting feels out of reach right now, start with one small step. Coping with the stress of a diagnosis is a skill that can take time to build. The MPN community can also help connect with people who understand what is going through.