PV Reporter

10/14/2026

🧊 MPNs: What You See Is Only the Tip of the Iceberg

Your blood counts may look good on paper. But that doesn't always mean you feel good.

For people living with polycythemia vera (PV), essential thrombocythemia (ET), or myelofibrosis (MF), there's often much more happening beneath the surface.

Fatigue that doesn't go away. Brain fog that makes everyday tasks difficult. Itching, headaches, bone pain, night sweats, and the emotional toll of living with a chronic blood cancer.

These are real challenges, even when others can't see them.

An MPN is more than a blood count. And managing the disease means listening to the patient, not just looking at the numbers.

💬 Let's hear from our MPN community: What's ONE symptom or challenge you wish more people understood?

❤️ Share this graphic with family, friends, or anyone who needs a better understanding of what living with an MPN can be like.

🌐 Learn more: https://pvreporter.com

Your trusted source for MPN news, research, education, and patient advocacy.

Trusted, patient-founded MPN resource on polycythemia vera, myelofibrosis & essential thrombocythemia with the latest research, treatments, and support.

10/13/2026

Congratulations to the 2026 MPN Heroes!

The myeloproliferative neoplasm (MPN) community is stronger because of individuals like these who dedicate their time and expertise to supporting people living with MPNs. Learn more about the 2026 MPN Heroes here: https://share.incyte.com/525n9e

10/12/2026

🔬 Could a saliva sample make tracking JAK2 mutation levels easier?

A new study involving Dr. Angela Fleischman followed 12 MPN patients on interferon for 12 months using at-home saliva collection. The results are encouraging, but this is a small, early study that needs validation in more patients.

Worth watching, with some perspective: this approach could make molecular monitoring more convenient, but it would not replace blood counts or CBCs.

Intensive longitudinal monitoring of somatic mutation variant allele frequency (VAF) is needed to characterize clonal dynamics during therapy in myeloproliferative neoplasms (MPN). Salivary digital PCR, corrected for buccal epithelial DNA contamination by epigenetic cell counting (ECC), has not been...

10/06/2026

🔎 An $11.7 million NIH grant will help WashU researchers study MPN progression. Exciting news, but describing all MPNs as “high risk” for acute leukemia is a bit misleading.

Risk differs considerably between ET, PV and myelofibrosis. I explain the new research and share a patient advocate’s perspective, with newer data to put that risk in context.

https://pvreporter.com/washington-university-mpn-grant-11-7m-for-new-research/

If you value MPN reporting through the lens of a seasoned patient advocate, follow PV Reporter for more and feel free to share this article.

The $11.7 million Washington University MPN grant will study inflammation, blood clots and disease progression. Learn what it could mean for patients.

09/28/2026

Explaining an MPN to family or friends isn’t always easy. Polycythemia vera (PV), essential thrombocythemia (ET), and myelofibrosis (MF) are related blood cancers that affect the bone marrow. They fall under the umbrella of myeloproliferative neoplasms, or MPNs, but each has different features. This graphic offers a simple starting point for that conversation.

Of course, a picture can’t capture everything about living with an MPN. The fatigue, symptoms, and uncertainty aren’t always visible to others. Save or share this graphic to help someone better understand. What’s one thing you wish more people understood about living with an MPN?

Learn more: pvreporter.com

09/25/2026

A hematocrit below 45% matters. So does how you feel. 🎯

As someone living with PV, I want patients to know reaching the target doesn’t necessarily mean all of your symptoms go away.

Share this with someone living with PV, and use it to start a conversation with your doctor at your next appointment.

Is your polycythemia vera hematocrit below 45% but symptoms persist? Learn how individualized care can address symptoms alongside your blood counts.

09/20/2026

09/13/2026

BESREMi is now FDA approved for adults with essential thrombocythemia (ET).

What does this mean for patients? Our latest article explains the trial results, dosing, side effects, and questions to discuss with your hematologist.

Learn more:
https://pvreporter.com/fda-approves-besremi-for-essential-thrombocythemia-et/

Please share with someone living with ET.

BESREMi for essential thrombocythemia: learn what FDA approval means for adults with ET, including dosing, trial results, side effects, and patient access.

09/09/2026

September is Blood Cancer Awareness Month, and tomorrow is MPN Awareness Day.

To recognize both, MPN Cancer Connection is proud to introduce 👉A Guide to Polycythemia Vera (PV), a free educational resource for patients and caregivers.

Whether you are newly diagnosed or have lived with PV for years, this guide can help you better understand symptoms, blood counts, diagnosis, treatment options, and life with PV. It can also help you prepare for more informed conversations with your healthcare team.

📖 Read the guide online or download your free copy:
https://mpncancerconnection.org/2026/09/polycythemia-vera-guide/

Thank you to our generous supporters, PharmaEssentia, Incyte, and Takeda, for helping make this important patient resource possible.

Please share this guide with another patient, caregiver, family member, or support group. One share could help someone find information they need.

Explore our polycythemia vera guide to learn about PV symptoms, diagnosis, risk factors, treatment options, blood counts, monitoring, and living with PV.