4 Ways Polycythemia Vera Can Affect Your Quality of Life — and What You Can Do About It
Just like any chronic health condition, polycythemia vera (PV) can have a negative impact on your everyday life. Research has shown that PV is associated with a lower quality of life in measures, including health, cognitive, emotional, and physical functioning.
Symptoms such as fatigue, itchy skin, and mental health issues can make it difficult to function, but they can be managed. “This is a chronic condition that people can live with,” says Jacqueline S. Garcia, MD, a medical oncologist at Dana-Farber Cancer Institute in Boston.
Here are some common challenges of living with PV and ways to cope, so you can stay healthy and live well as you manage this condition.
1. Fatigue Can Interfere With Daily Activities
Fatigue is one of the most common symptoms of PV. “Polycythemia vera is a blood disorder that stems from an error in the bone marrow,” says Dr. Garcia. As a result, bone marrow overproduces red blood cells, causing the body to use up your iron supply. This results in iron deficiency, which leads to fatigue, she explains.
Another factor that can contribute to fatigue is phlebotomy treatment, which is a procedure that involves drawing blood to reduce blood cells and blood volume. A common side effect of this treatment is increased fatigue and iron deficiency, according to Garcia.
The degree of fatigue can vary from one person to another and depend on age, menopausal status, other health conditions — such as cardiovascular disease or diabetes — and more factors, says Garcia.
What to do about it: When it comes to polycythemia vera fatigue, research found that fatigue was a bigger problem for people who had a higher BMI, continued to drink alcohol or use tobacco, and didn’t exercise.
Maintaining healthy lifestyle habits may help you feel more energized every day. For instance, Garcia recommends exercising in moderation, as long as you have your doctor’s okay and don’t push yourself if you feel faint.
Another way to combat fatigue is by making sure you’re eating enough iron, which is important for energy production. “Food sources of iron are recommended instead of an iron supplement, and patients should not exceed the dietary reference intake of iron,” says Stacy Morig, an oncology dietitian with Dartmouth Cancer Center in Lebanon, New Hampshire. (Over time, too much iron can also lead to problems, such as damage to the heart, liver, and pancreas.)
The recommended dietary allowance (RDA) for iron is 8 milligrams for adult men and women, but that number increases to 18 milligrams for women ages 19 to 50.
In addition, Morig recommends eating a well-balanced diet, consuming regular meals throughout the day, managing stress (to the best of your ability), and getting adequate sleep to help reduce fatigue.
2. Itchiness Can Cause Discomfort
As many as 68 percent of people with PV may experience itchiness, especially when skin gets wet, according to research. And in up to 15 percent of cases, the itching may be particularly severe. Frequent itching can be distracting and may even interfere with your sleep. Plus, scratching your skin can put you at risk for bleeding, infection, skin discoloration, and more.
What to do about it: To reduce itching, the Leukemia & Lymphoma Society recommends bathing or showering in cool water with gentle soap, frequently moisturizing your skin, and avoiding hot tubs and whirlpools. If lifestyle tweaks don’t help, talk to your doctor about medications and in-office treatments, such as antihistamines and phototherapy.
3. Regular Blood Draws Can Be a Burden
A common treatment for PV is regular blood draws, which are used to reduce the risk of blood clots — one of the main complications of PV — which can cause life-threatening events, such as a heart attack, stroke, or pulmonary embolism. These blood draws are crucial, but they can also affect the quality of your life.
For one, having to schedule your life around blood draws — as frequently as once a week initially, before they can gradually be spaced out to about once every 4 to 8 weeks — can affect your work and home routines, especially since these appointments can take hours out of your day. Then, there are side effects to contend with: Research has shown that more than half of patients reported experiencing fatigue within 24 hours after a phlebotomy. Many other side effects were also cited, including bruising, dizziness, and dehydration.
What to do about it: Regular visits for phlebotomy are not pleasant and can have an impact on every aspect of your life — work, home, social routines — but Garcia notes that the frequency will decrease over time. After initial treatment, your provider will introduce a medication that helps control blood cell counts. This will eventually reduce the need for phlebotomy treatment, potentially to as little as one or two times a year, if PV is managed well.
“The burden decreases. We tailor the frequency based on what the patient’s needs are,” says Garcia.
In the meantime, she says, there are ways you may be able to work with your medical providers to reduce the treatment burden, such as finding a local blood center for the phlebotomy procedure. “There are ways we can do this to avoid interrupting someone’s life too much,” she says. Bottom line: Be honest with your doctor about your barriers to treatment, so they can work with you to find a solution.
4. The Stress of PV Progression and Complications Can Affect Mental Health
PV is a blood cancer, and that word itself can lead to distress. “Anyone with a cancer diagnosis will have an appropriate amount of stress associated with it,” says Garcia. “Our job is to get patients into a controlled situation, so they’re at a much lower risk for disease progression and blood clots.”
Potential PV complications can also be stressors. These include blood clots and progression to other diseases, such as acute myeloid leukemia, a fast-growing blood cancer.
What to do about it: Perspective and knowledge can be helpful in managing stress. While research has shown that people with PV may have a shorter life expectancy, experts say that with the treatments that are available today, that doesn’t have to be the case. According to an article in the journal Leukemia, normal life expectancy is possible.
Another strategy that may help is talking to your medical team. “Having a good relationship with your clinician can help you live with your disease, as opposed to waiting for something to happen,” says Garcia. “We can get people to have a good life expectancy with adequate support to reduce the anxiety surrounding it,” she says. If you’re experiencing stress, anxiety, or depression that’s affecting your daily life, ask your doctor to refer you to a mental health professional, support group, and other resources.
The Takeaway
Polycythemia vera is a chronic, rare blood cancer that can be managed with proper treatment.
Due to symptoms such as fatigue and the possibility of complications and progression, though, the disorder can negatively affect your quality of life.
With proper treatment and management strategies, PV can be controlled so that symptoms such as anxiety, fatigue, and stress can be reduced and quality of life can be improved.
