Identifying Possible Signs of MPN Progression
Author: Voices of MPN
When you’re living with a myeloproliferative neoplasm (MPN), it’s important to talk with your healthcare team about new or changing symptoms and the impact they may have on your life. Open, honest communication with your care team can help ensure that you have the right management approach throughout your MPN journey.
No matter how your MPN symptoms may affect your life right now, it’s important to know that these rare, chronic blood cancers are progressive diseases. This means that MPNs can get worse over time. They may also transform into another type of blood cancer.
EMPOWER YOUR ONGOING CARE
Every MPN journey is unique, with some people experiencing severe symptoms and others having mild or no symptoms at all. As MPNs progress, symptoms may get worse—interfering with daily activities, quality of life, and well-being.
Symptoms of MPNs such as polycythemia vera (PV), essential thrombocythemia (ET), and myelofibrosis (MF) may emerge over time—and even in between medical appointments. You can empower your ongoing care by monitoring your symptoms and reaching out to your healthcare team as needed to communicate new developments.
Here’s how you can take an active role in your care to be better prepared for conversations with your MPN healthcare team:
IDENTIFY NEW OR CHANGING SYMPTOMS
- They may be possible signs of disease progression (worsening)
- For instance, have you noticed pain under your ribs, an early feeling of fullness, or are you more fatigued than usual?
- Keep track of your symptoms with the MPN Tracker Tools or the Voices of MPN Mobile Tracker app
NOTE SPECIFICS ABOUT HOW SYMPTOMS IMPACT YOUR DAILY ACTIVITIES AND QUALITY OF LIFE
- Quantify the impact of specific symptoms—how often have you had to cancel events or social plans because you’re not feeling well? How many days a week or month do you have abdominal pain that prevents you from doing the activities you enjoy?
- Use the convenient activities charts in the MPN Tracker Tools and the Voices of MPN Mobile Tracker app to easily record how your MPN affects your daily life
TRACK REGULARLY TO IDENTIFY TRENDS IN YOUR MPN
- Consistent monitoring of symptoms and their impact with tools like the Voices of MPN Mobile Tracker app can help you and your care team become aware of trends in the status of your MPN
- The more information you have, the more prepared you’ll be to have meaningful conversations with your healthcare team
Remember to share your tracking information with your healthcare team. Speak up and spell out any and all symptoms that you are experiencing even if they’re not related to your MPN—because they could be!
DISCUSS SYMPTOMS AT EVERY MPN APPOINTMENT
As an advocate for your own care, it’s essential to partner with your healthcare team and identify any new or changing symptoms that could be possible signs of disease progression. That’s why it’s important to track your symptoms and mention them every time you see your MPN healthcare team.
Honest and open communication with your MPN care team is vital. Sharing these insights may enable your team to better manage specific symptoms, help you resume activities, and possibly avoid complications. It may also impact your ongoing care management approach.
FINE IS NOT ENOUGH: ADVOCATE FOR YOUR MPN CARE
It can be challenging to open up to your Healthcare Professional about the symptoms of your MPN and how they may be impacting your life. Some patients may find it easier to say “I’m fine” rather than speaking up and spelling out the impact of their disease.
But fine was not enough for Louise, Mickey, Asha, and Christine—four real patients featured in the podcast called Why FINE Is Not Enough When Speaking About the Impact of Your MPN Symptoms. Tune in, hear their stories, and be inspired.
Why FINE Is Not Enough When Speaking About the Impact of Your MPN Symptoms