Living with polycythemia vera

Polycythemia vera (PV) is a rare, slow-growing blood cancer that causes your body to produce too many red blood cells. It also often elevates white blood cells and platelets, the cell fragments that help your blood to clot, causing the blood to thicken and increasing the risk of blood clots.  

Living with PV can affect many aspects of your life, both through its physical symptoms and because of side effects from your ongoing PV treatments. Understanding what to expect may be helpful for confidently navigating daily life with PV.

What daily life with PV can involve

Many people with PV find that both disease symptoms and side effects from treatments can affect day-to-day life.

Common daily symptoms of PV include:

• intense itching, known as pruritus, especially after a warm bath or shower
• extreme fatigue
• painful inflammation in the joints
• headaches and vision problems
• excessive bleeding or bruising
• numbness, tingling, or burning sensations in the hands or feet

In addition, some PV treatments may cause substantial side effects. Depending on which approaches are used to manage your cancer, you may experience some of the following side effects:

• fatigue
• itching
• hair loss
• restless legs
• blurred vision
• weight changes
• gastrointestinal problems
• iron deficiency

Sometimes, it’s difficult to know if what you’re experiencing is a treatment side effect or a symptom of PV. If you experience any changes or new symptoms, talk to your healthcare team.

Tracking symptoms and blood count changes

Ongoing monitoring is an important component of managing PV. Your doctor may want you to have periodic blood tests to measure your blood counts to make sure your treatment is working well.

This will help your doctor determine whether you may need phlebotomy, a procedure that removes a certain amount of blood to reduce red blood cell levels, or any adjustments to your treatment plan.

In addition, consider keeping a record of your PV symptoms over time to share with your care team. Worsening PV symptoms may be a clue that your treatment is no longer working or that your disease has progressed.

Discussing your symptoms regularly with your care team also gives you a chance to let them know if you are having difficulty managing symptoms or side effects, and to discuss potential changes.

Reducing blood clot risk in daily life

Because PV makes your blood thicker than normal, it increases your risk of developing abnormal blood clots. Clots can cause a range of different problems, including more severe complications such as stroke and heart attack, so reducing your risk of blood clots is an important part of staying healthy with PV. 

Treatment and lifestyle choices for PV that may reduce your risk include the following:

• Stay consistent with any testing and PV treatments recommended by your doctor.
• Avoid smoking or vaping.
• Follow your care team’s recommendations for monitoring and treating any other conditions that affect your cardiovascular health, such as high blood pressure, high cholesterol, or diabetes.
• Take steps to maintain a normal weight.
• Follow a heart-healthy diet.
• Get regular exercise.

Managing fatigue, itching, and discomfort

PV fatigue, itching, and pain can be irritating or disruptive. Good self-care for PV may help ease these symptoms.

If you experience significant fatigue, you may benefit from strategies such as:

• getting plenty of rest and maintaining good sleep habits
• staying well hydrated before and after phlebotomy, and avoiding exercise for 24 hours afterward
• asking your care team about ways to safely take iron supplements
• asking your doctor about medications that reduce blood cells, which may reduce how often you need phlebotomy
• inquiring about accommodations at work or school

Strategies for easing itching and pain from pruritus include the following:

• avoid hot baths and showers and use lukewarm water instead
• keep your skin moisturized
• try to avoid scratching, which can damage the skin and make itching worse
• ask your doctor about medications to reduce itching

Preparing for appointments and blood tests

Managing PV may involve frequent medical appointments and blood tests. If you have trouble keeping track of your schedule, ask a family member or friend to help you stay organized.

As you prepare for appointments, consider keeping a journal of your symptoms and treatment side effects. You may also want to make a list of questions or concerns you want to discuss. During the visit, taking notes, asking for written instructions, or bringing a support person may help you remember important information.

Work, travel, and physical activity

PV fatigue may make it difficult to keep up with commitments such as work, school, or travel. It may be helpful to ask for work or school accommodations to allow extra time for rest.

Because phlebotomy can worsen fatigue, you may want to avoid scheduling important events shortly after treatments. Staying physically active may ease PV symptoms, including fatigue. Talk to your doctor about safe ways to stay active with PV.  

Emotional health and support

Living with PV can be mentally and emotionally taxing. If you are struggling to manage your condition or experiencing anxiety, depression, or other mental health issues, consider discussing mental health support for PV with your care team.

When to seek emergency medical attention

PV can sometimes cause dangerous health complications. If you are experiencing symptoms of a blood clot, heart attack, or stroke, get immediate medical attention.

Some therapies used to manage PV can also cause severe mental health difficulties, including suicidal thoughts, for some people. If you experience this, get help right away.

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Rare Cancer News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.