(BPT) - When you’re living with a rare, chronic blood cancer like polycythemia vera, or PV, you might look good on the outside even when you don’t feel good on the inside. That’s because for some people with PV, their symptoms may not be visible to others, despite having a serious impact on their lives.
This is the case with Julie, who has been living with PV for over 15 years and says that people often don’t understand how much the disease impacts her daily life because her symptoms aren’t visible.
“On the outside, people think I look great and have even questioned why I’m in a cancer center,” said Julie. “They don’t see that I’m often dealing with fatigue, bone pain and itching, among other symptoms, which can make navigating daily life extremely challenging.”
If you’ve been diagnosed with PV, you may be aware that it is a progressive disease — meaning that symptoms can worsen over time. Being able to recognize and carefully track your symptoms can be essential to getting the care you need. It can change the way you see PV.
1. Take a closer look at PV symptoms
In PV, the body creates too many blood cells, which can lead to thicker blood, reduced blood flow and an increased risk of blood clots and other serious complications. This may also cause people to experience troubling symptoms such as headaches or “brain fog.”
PV can also cause the spleen to grow and enlarge, which can lead to symptoms of feeling full when you haven’t eaten (or have eaten very little) and abdominal pain and discomfort. Other PV symptoms include fatigue, itching and night sweats, which can occur due to an overproduction of certain proteins that cause inflammation.
Every person with PV is unique and may experience different symptoms, making it even more critical that you talk to your doctor about the symptoms you are experiencing.
2. Watch for signs that your PV may be changing
Not only can your PV symptoms become more severe over time, they can also change so slowly that you might not even notice them; however, changes in the frequency or severity of your symptoms can be a sign of disease progression.
If you’re living with PV, it’s important for you to track and monitor your blood counts and discuss any new or changing symptoms with your doctor. Registering for this tool at www.voicesofmpn.com/mpn-tracker-tools.aspx can make it easier for you to track your symptoms, and may reveal insights about your condition that can help ensure you have informed and productive conversations with your doctor.
3. Have the right discussions with your doctor
When you have a chronic condition like PV, it is vital to play an active role in your care.
“Having the ‘right’ discussions with your doctor may not always be easy, but coming prepared with questions and having productive conversations has been essential in getting the care I need,” Julie explains.
Ahead of your next appointment, download and complete this discussion guide at www.voicesofmpn.com/pdf/polycythemia-vera-discussion-guide.pdf to help guide the discussion with your doctor and ensure you’re asking the right questions. You can also visit VoicesofMPN.com for more information about PV so that you are better equipped to discuss how your disease may be affecting you with your doctor.
© 2019, Incyte Corporation. MAT-HEM-01127 08/19