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Living with a myeloproliferative neoplasm, such as essential thrombocythaemia (ET), polycythaemia vera (PV) or myelofibrosis (MF) may be accompanied by a range of physical and emotional challenges. You may be overly fatigued, have a low mood, be anxious or have a reduced quality of life due to a combination of physical and emotional factors. Here are some ideas contributed by Brenda Keenan, an oncology specialist nurse with fifty years of experience in caring for patients with cancer. Her daughter has ET.
Try exercise
Exercise may be the last thing on your mind if you are feeling really fatigued and unwell, but some gentle exercises can be a tremendous help in improving your wellbeing (ask your medical care team first).
The goal of exercise in this case is to maintain your muscle mass and body composition and help your heart move blood through your body. You will want to begin with extremely gentle movement and build very gradually. Check with your doctor for more specific advice.
If you are in bed: There are gentle exercises you can do without getting out of bed. Try simple range-of-motion exercises, such as wrist rolls, shoulder shrugs, elbow bends, arm lifts, opening and closing of the hands, wriggling toes, and leg lifts.
If you are walking: If you are able to walk around for part of the day, or if you’ve recently had surgery but are not ready for anything strenuous, there are exercises you can do in a sturdy chair or in bed that help you stretch and strengthen: move your arms, legs, head, and torso while seated, and use weights and exercise bands if you want, and your GP and haematologist approve.
If you’ve undergone surgery: (for instance after surgery following a heart attack) it may take time before you can start exercising. Ask your physician before beginning any physical activities. As you feel better you may want to try out a fitness centre or gym, where you can try new programmes. It is important to let the staff know you have an MPN and of course check with your doctors first.
Heart and lung treatments: If you are receiving treatments that affect your lungs or heart, or you are at risk of lung or heart disease, check with your doctor before starting any exercise programme. Ask for your blood test results and ask whether it is safe to exercise. Report trouble signs to your doctor, such as swollen ankles, unexplained weight gain, or shortness of breath while at rest or with a small amount of exertion. You may be at risk of bleeding if you are taking blood thinners. Avoid falls or injury. If you notice swelling, pain, dizziness or blurred vision, call your doctor immediately.
Ask for help with side effects
If you are receiving medication you may be having unpleasant side effects. It’s important to get side effects under control. Don’t try to tough it out. Ask your GP or haematologist for suggestions or medications that can help you. Ask about alternatives to the medication you are taking. If the suggestions you’re given do not provide enough relief, you can seek out complementary therapies that might help.These approaches can be helpful in reducing side effects:
Be alert for potential problems
Avoid vigorous exercise if your blood counts are low and you are at risk of infection, anaemia and/or bleeding. Your MPN care team will tell you about your platelet, red cell and white cell levels and whether it is safe to exercise.
For more encouragement about the benefits of exercise read our Real Life stories for ideas on what other MPN patients are doing to feel better.
