If you are coping with polycythemia vera (PV), it is important to keep track of your symptoms and how they affect your daily activities. Over time, this will help your health care team know how to best manage this long-term diagnosis so that you can experience the best quality of life.

Here are some common symptoms of PV, along with practical steps you can take to cope with them:

Fatigue. Start a gradual exercise program. Walking can improve your strength and energy level and can also improve blood flow, which decreases the risk of blood clots. Exercising and stretching the legs and ankles improves blood circulation.

Gout. Signs of gout include swelling in one or many joints or pain in the big toe. Your doctor can prescribe various medications to control a flare-up of gout; allopurinol (Zyloprim and others) is often prescribed to prevent future attacks.

Itching. To keep your skin from drying out and becoming itchy, lower the temperature of your shower or bath water, especially in the winter. After bathing, pat yourself dry and use lotion to keep your skin moist. Try not to scratch; scratching can damage the skin and increase the risk of infection. Over-the-counter antihistamines like diphenhydramine (Benadryl and others) can help with severe itching. Talk with your doctor before taking any medications to make sure they won’t interfere with your treatment.

Headaches and vision problems; burning, redness or swelling of the hands and feet. Aspirin may help with these symptoms. Your doctor can determine the dosage that is best for you.

Emotional distress. Sometimes, talking with a family member, friend or loved one can help. You may also benefit from the help of a professional oncology social worker.

It’s important to focus on your overall health, which will help you better manage your PV:

Exercise and eat a healthy diet to maintain your weight. In general, the guidelines for people with PV are the same as for everyone else: eat a low-fat diet in sensible portions with fruits, vegetables, grains and legumes.

Drink plenty of fluids. It’s important to stay well hydrated to keep your blood from thickening. Plain water, non-alcoholic drinks and sugar-free beverages are among the best choices. Try to drink six to eight eight-ounce glasses of fluids each day. It’s fine to sip them slowly throughout the day.

Avoid tobacco. Smoking can cause the blood vessels to narrow, increasing the risk of heart attack or stroke due to blood clots. Smoking also can lead to lung and many other cancers, as well as the chronic lung disease emphysema.

Protect yourself from the sun. Exposure to ultraviolet (UV) rays from the sun, tanning beds and sun lamps can damage your skin. Avoid the sun during the peak hours of 10 a.m. to 4 p.m. and use sunscreen with an SPF (sun protection factor) of 30 or higher. When you are outdoors, wear protective clothing, a broad-brimmed hat and UV-blocking sunglasses.

Take extra care of your hands and feet. People with PV who have poor circulation may be more prone to injuries from cold and heat. Wear warm gloves, socks and shoes during the winter months. Avoid hot tubs and heated whirlpools. Stay in close touch with your health care team. Your doctor has created a detailed treatment plan that will allow you to live a healthier and more productive life. To maintain your health, report to your health care team any new

Stick with your treatment plan. Be sure to keep all your appointments for blood tests, doctor’s visits and treatments such as phlebotomy or interferon injections. Adhering to the plan is the best way to improve your health and quality of life.

Here are some other potential symptoms of PV that you should report to your doctor immediately:
• Changes in vision or difficulty with speech
• Weakness or numbness on one side of the body
• Chest discomfort or difficulty breathing
• Severe pain or swelling in the stomach or spleen
• Swelling, tightness or redness in a limb, particularly the leg
• Change in color of the fingers or toes
• Bleeding or blood in the stool
• Weight loss
• Fevers or drenching sweats
• Symptoms of anemia such as lightheadedness or an increase in fatigue

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This fact sheet was made possible by Incyte Corporation.

The information presented in this publication is provided for your general information only. It is not intended as medical advice and should not be relied upon as a substitute for consultations with qualified health professionals who are aware of your specific situation. We encourage you to take information and questions back to your individual health care provider as a way of creating a dialogue and partnership about your cancer and your treatment.

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