How can people living with myeloproliferative neoplasms (MPNs) better understand their diagnosis, recognize important changes in their health, and feel more confident participating in treatment decisions?
Living with an MPN involves more than managing blood counts and following a treatment plan. You may have questions about what your test results mean, experience symptoms even when your blood counts appear stable, or wonder when it’s time to discuss treatment options or seek specialized care. If you’re supporting someone with an MPN, knowing what to watch for and which questions to ask can also help you play an important role in their care.
Through our program, Staying [ACT]IVATED With an MPN: Overcoming Barriers to Care, MPN specialist Dr. Ghaith Abu-Zeinah of Weill Cornell Medicine and NewYork-Presbyterian Hospital joins PEN Empowerment Lead and host Lisa Hatfield to explore common barriers patients face and practical ways to navigate them.
A hematologist-oncologist and physician-scientist at the Richard T. Silver MPN Center, Dr. Abu-Zeinah discusses the importance of accurate diagnosis, symptom monitoring, treatment decisions, and access to specialized expertise.
Here are five strategies from their conversation to help you better understand your MPN, recognize changes that may need attention, and feel more confident communicating with your healthcare team.
1. Understand What Your MPN Diagnosis Really Means
Receiving an MPN diagnosis can feel overwhelming, especially when patients are unfamiliar with the tests used to establish their condition or the differences between MPN subtypes.
Dr. Abu-Zeinah emphasizes the importance of understanding that MPNs are blood cancers, including essential thrombocythemia (ET), polycythemia vera (PV), and myelofibrosis (MF).
Establishing an accurate diagnosis involves evaluating several pieces of information together, including blood counts, genetic mutation testing, bone marrow biopsy findings, and the patient’s clinical presentation.
Genetic testing often looks for mutations in the JAK2, CALR, and MPL genes. However, some patients do not have these common mutations, and additional testing may be needed. Dr. Abu-Zeinah explains that bone marrow findings are particularly important for distinguishing among MPN subtypes.
Understanding how these findings contribute to a diagnosis can help patients ask more informed questions and better understand their individual disease.
[ACT]IVATION Tip from Dr. Abu-Zeinah:
"...my [ACT]IVATION tip is to get an MPN diagnosis, you need to look at blood counts, presence of a driver mutation, and the bone marrow biopsy findings, and couple that with the clinical presentation."
Questions to ask your care team:
- What tests confirmed my MPN diagnosis?
- Which genetic mutations were identified, and what do they mean?
- What did my bone marrow biopsy reveal about my disease?
Hear more from Dr. Abu-Zeinah: MPN Diagnosis: Understanding Key Tests to Overcome Barriers to Care
2. Track Symptoms and Quality of Life, Not Just Blood Counts
Blood counts are an important part of monitoring MPNs, but they do not always tell the full story of how well a patient’s disease is being managed.
Dr. Abu-Zeinah explains that some patients continue to experience fatigue, brain fog, night sweats, and other symptoms even when laboratory values appear well controlled.
One reason is that symptoms may have causes beyond the MPN itself. For example, patients with PV who undergo repeated therapeutic phlebotomies may develop iron deficiency, which can contribute to fatigue, weakness, and difficulty concentrating.
Other symptoms may be driven by inflammation. Dr. Abu-Zeinah explains that cytokines, which are signaling molecules involved in inflammation, can contribute to symptoms even when blood counts remain stable.
He also discusses how JAK inhibitors are used in myelofibrosis and how symptom improvement is an important consideration when evaluating treatment effectiveness.
Identifying whether symptoms are related to the disease or another underlying cause can help guide more effective symptom management.
[ACT]IVATION Tip from Dr. Abu-Zeinah:
"...my [ACT]IVATION tip is look for other causes for symptoms, and if it is not due to another cause, clearly due to the disease, despite well-controlled counts, think of how to address some of these symptoms, either individually, if it's one symptom, or kind of in a big picture way, if it's multiple disease-related symptoms."
Questions to ask your care team:
- Could my symptoms be related to my MPN or another condition?
- Could iron deficiency or inflammation be contributing to how I feel?
- If my blood counts are controlled but I still have symptoms, what additional evaluation or treatment options might help?
Hear more from Dr. Abu-Zeinah: Beyond Blood Counts: Overcoming Barriers to MPN Symptom Management
3. Recognize Changes That May Signal a Need to Re-Evaluate Your MPN
One challenge of living with an MPN is knowing whether a new symptom or laboratory change reflects fluctuations in disease activity or a possible sign that the disease needs to be reassessed.
Dr. Abu-Zeinah encourages patients to pay attention to symptoms such as unexplained weight loss, night sweats, itching, and fatigue, particularly when these symptoms change or become more pronounced.
Changes in blood counts can also provide important information. For example, declining hemoglobin levels may raise concerns about anemia, while changes in platelet counts or spleen size may warrant closer evaluation.
However, Dr. Abu-Zeinah cautions that worsening symptoms or changing blood counts do not necessarily mean an MPN is progressing. In some cases, symptoms may reflect increased disease activity, while changes in blood counts may be related to treatment.
Your healthcare team will consider several factors, including your symptoms, blood counts, and sometimes a bone marrow biopsy, to determine whether your MPN may be progressing.
[ACT]IVATION Tip from Dr. Abu-Zeinah:
"...the [ACT]IVATION tip here, because if you're going to track signs and symptoms of progression, I would say track your symptoms, track your blood counts for anemia, or even low platelets and track your spleen."
Dr. Abu-Zeinah further explains that monitoring spleen changes is primarily the responsibility of the treating physician.
Questions to ask your care team:
- Which symptoms or blood count changes should I pay closer attention to?
- How can we distinguish treatment effects from possible disease progression?
- When might additional evaluation, including a bone marrow biopsy, be needed?
Hear more from Dr. Abu-Zeinah: MPN Progression: Overcoming Barriers to Recognizing Warning Signs
4. Revisit Your Treatment Plan and Understand Your Options
MPN treatment decisions may arise at different points throughout the course of the disease, from initial diagnosis to changes in symptoms or treatment response.
Dr. Abu-Zeinah explains that management approaches may include aspirin, therapeutic phlebotomy, or observation with supportive care. Other treatment discussions may involve MPN-directed medications, clinical trials, or, for some patients, transplantation.
The timing of these conversations can vary depending on the patient’s condition and individual circumstances.
He also highlights the importance of understanding how treatment response is evaluated, including which findings suggest that a patient is doing well and which may indicate a less-than-optimal response.
Consulting an MPN specialist can provide another perspective when patients are considering treatment options or determining whether their current approach remains appropriate.
Questions to ask your care team:
- What are the goals of my current treatment?
- How will we know whether my treatment is working as expected?
- At what point should we revisit my treatment options or consider a specialist consultation?
5. Build a Care Team That Includes MPN Expertise
Access to specialized expertise can be a significant barrier for people living with MPNs, particularly those receiving care in community practices or living far from major treatment centers.
Dr. Abu-Zeinah encourages patients to consider establishing a relationship with an MPN specialist, particularly at diagnosis and during important treatment decisions.
A specialist consultation may help clarify a diagnosis, review test results, or provide additional insight into treatment goals and options. In some cases, this may include expert review of bone marrow biopsy findings.
Dr. Abu-Zeinah also explains that an MPN specialist and a community hematologist can work together to coordinate care. Seeking a second opinion does not necessarily mean changing physicians.
Depending on location and medical licensing requirements, telemedicine may make some specialist consultations more accessible.
He emphasizes that maintaining contact with an MPN expert over time can help ensure the specialist remains familiar with the patient’s condition and available to provide guidance when needed.
If you’re a care partner, you can also help by keeping track of questions, supporting conversations with the healthcare team, and helping your loved one access additional information when needed.
[ACT]IVATION Tip from Dr. Abu-Zeinah:
"...my [ACT]IVATION tip for this question is, establish an MPN expert, a physician consultant that you might want to speak to at different time points, particularly early on, and then during the course of therapy."
Questions to ask your care team:
- Would consulting an MPN specialist be helpful in my situation?
- Could an expert review of my test results or bone marrow biopsy provide additional information?
- Can my local hematologist and an MPN specialist work together to guide my care?
Hear more from Dr. Abu-Zeinah: MPN Second Opinions: Overcoming Barriers to Expert Care
Continue the Conversation: Explore PEN’s MPN [ACT]IVATED Resources:
- Staying [ACT]IVATED With an MPN: Overcoming Barriers to Care
- MPN Diagnosis: Understanding Key Tests to Overcome Barriers to Care
- (en español) Diagnóstico de NMP: cómo comprender las pruebas clave para superar las barreras de atención
- Beyond Blood Counts: Overcoming Barriers to MPN Symptom Management
- (en español) Más allá de los recuentos sanguíneos: cómo superar las barreras para el manejo de los síntomas de las NMP
- MPN Progression: Overcoming Barriers to Recognizing Warning Signs
- (en español) Progresión de las neoplasias mieloproliferativas: cómo superar las barreras para reconocer las señales de alerta
- MPN Second Opinions: Overcoming Barriers to Expert Care
- (en español) Segundas opiniones sobre las NMP: cómo superar las barreras para acceder a la atención especializada
Looking for more information and support as you navigate life with an MPN? PEN’s [ACT]IVATED MPN Resource Guide, available in English and Spanish, brings together educational resources to help patients and care partners stay informed, ask questions, and take a more active role in their care.
Take the Next Step: Explore the [ACT]IVATED MPN Resource Guides:
- Dr. Ghaith Abu-Zeinah | [ACT]IVATED MPN Resource Guide II
- Dr. Ghaith Abu-Zeinah | (en español) [ACT]IVATED MPN Resource Guide II
Stay [ACT]IVATED Throughout Your MPN Journey
Whether you’re newly diagnosed, have been living with an MPN for years, or are supporting someone you love, understanding your options and knowing when to ask questions can make a meaningful difference.
From making sense of test results and managing symptoms to recognizing changes in your health and seeking specialized care, staying [ACT]IVATED means taking an active role in conversations about your care.
Remember, you don’t have to navigate an MPN alone. By staying informed, speaking up about your concerns, and working closely with your healthcare team, you can feel more prepared and confident as your needs change.
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