WHAT
ELSE CAN
I DO?
Today’s conversations can help SHAPE YOUR
TOMORROW
Find the right fit with your care team
While you’re in control of your PV journey, your doctor is an essential piece in helping everything fall into place. Look for a doctor you can trust to build a lasting partnership with.
If your current doctor doesn’t feel like the right fit, you have the power to seek a second opinion. It’s important that you feel comfortable making shared decisions and that your treatment goals are aligned.
Set treatment goals that matter to you
Treatment isn’t just about hitting certain numbers. It’s also about how you feel and what you want out of life. Personal goals help guide your care—and help your doctor understand what matters most to you.
Some examples of personal goals:
Targeting the underlying disease
TIP: Ask your doctor about a treatment option that targets the cause of PV where it starts in the bone marrow.
Normalizing all 3 blood cell counts
TIP: Managing PV means maintaining a healthy balance of red blood cells, white blood cells, and platelets.
Minimizing the number of phlebotomies
TIP: Needing more frequent phlebotomies can be a sign of PV progression.
Reducing your symptoms
TIP: Remember to speak up about all your symptoms and avoid saying “I’m fine” when your doctor asks.
Finding a treatment that doesn’t interfere with your life
TIP: Because PV is a lifelong condition, consider how a treatment schedule and requirements will fit in with your lifestyle and what’s important to you.
Having treatment work for the long term
TIP: PV is a chronic blood cancer, making it essential to understand which treatments work for the long term.
Speak up about how you’re feeling
Try not to minimize how you’re feeling by saying “I’m fine” when your doctor asks you. Be open with your doctor about any symptoms you’re experiencing, even those you may not think are related to your PV. It helps them better understand how you’re really doing and whether your treatment is working.
Track what you’re feeling
Writing down your symptoms, including when they occur, how often, and how they affect your daily life, can help you have a more meaningful conversation at your next appointment. Try a symptom tracker or take notes in your phone.
What to include:
- When did symptoms start or get worse?
- What triggers or relieves them?
- How do they impact your work, mood, or sleep?
Missing pieces? Ask some questions
Gather critical information about your PV by asking your care team some of the following questions.
Questions about what you can do
- How often should I come in for a PV-related visit?
- How should I monitor my PV?
- What types of symptoms or changes should I notify you about?
- What can I do to proactively manage my PV for the long term?
Questions about what your doctor can do
- How often will I be getting complete blood countsA blood test that measures your red and white blood cells, platelets, hemoglobin, and hematocrit. (CBCs)?
- Will you track my complete hematologic responseWhen all 3 blood cell counts (red, white, and platelets) have returned to normal levels and you haven’t required a phlebotomy in the past 3 months. (CHR)?
- If I consult with a specialist in myeloproliferative neoplasmsA group of cancers that start in the bone marrow, where blood cells are made. (MPNs), are you willing to coordinate with them?
Make every visit count
Here are a few tips to help guide the conversation with your doctor:
Be your own advocate for the long term
PV is a lifelong condition. That means your needs and goals may change over time. Continue to check in with yourself and speak up when things shift. You know your body best, and your voice matters.