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Heidi’s MPN Story – An Increasing Trend in Patient Advocacy

What other cancer, in the 21st century, is so misunderstood that your local doctor will struggle to diagnose you, possibly tell you he has a few other patients with it, then advise you to do nothing but get a therapeutic phlebotomy and take a baby aspirin? You get online to learn that you (supposedly) have a few years to live, but your doctor tells you that you are fine – people can live decades with Polycythemia Vera, and probably have a pretty normal life. Well, that was my experience.

I will not forget how much it scared me. I was diagnosed in 2008, at 40 years old.  It just happened to be the same week I lost my health insurance.…

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Featured

 Big pharma's newest marketing tactic: infiltrating soap operas like General Hospital

Last March, Vinay Prasad, a doctor in Portland, Oregon, caught wind of an episode on the long-running soap opera General Hospital. One of the main characters on the show, a fellow at his hospital told him, had been diagnosed with an extremely rare bone marrow cancer, polycythemia vera. Prasad’s mind started spinning. And he felt suspicious. Of all the diseases out there, why would the writers at General Hospital feature an illness that affects only two in 100,000 people?

 Nobody Wants Cancer. But a ‘Big C’ Label Has Surprising Upsides.

Classifying a rare blood disorder as a cancer opened new doors for disease investigation, treatment and hope for a cure. Nobody likes to hear a cancer diagnosis, particularly for a disease they thought was benign. In fact, when I first saw my blood disorder referred to as a cancer, I wrote to the MPN Research Foundation, a nonprofit research and advocacy group, and suggested they remove the “Big C” word from their website. How, I thought, could they be so misleading? That’s when I discovered I was behind the times.

 Questions to Ask your Doctor for a PV Appointment

When we have an appointment scheduled with our doctor it is helpful to have a list of questions to be properly prepared. It also helps to know what to expect as far as PV Symptoms you may experience. Here is a checklist you can use and symptoms you may experience as a normal part of having PV.

Articles of Interest

What Are The Key Factors in Predicting Polycythemia Vera Progression?

A new study has shed light on the factors that may predict polycythemia vera (PV) disease progression. The REVEAL study, presented at the 2024 European Hematology Association Congress, has identified five key characteristics that could help doctors better understand which patients are at higher risk of their condition worsening over time.

Current and future treatment options for polycythemia vera

Patients with polycythemia vera (PV), a myeloproliferative neoplasm characterized by an elevated red blood cell mass, are at high risk of vascular and thrombotic complications and have reduced quality of life due to a substantial symptom burden that includes pruritus, fatigue, constitutional symptoms, microvascular disturbances, and bleeding.

Diagnosis and Management of Polycythemia Vera

The course of PV is variable. Some patients exhibit few symptoms, such that the condition is discovered only after blood work is performed during a routine medical examination. In other patients, signs, symptoms, and complications of PV arise from the high number of RBCs and platelets in the blood. In patients with milder symptoms, PV can persist for many years without distinct stages or clear progression.

Doctors Blamed Menopause for My Symptoms for a Year. I Actually Had Blood Cancer

But when Cox woke up in the middle of the night and her head hurt so badly that she couldn’t even see, she had her husband take her to the ER. That kicked off her diagnosis journey, and Cox ultimately learned that she had polycythemia vera (PV), a rare blood cancer. In the three years since she was diagnosed, Bren has tried different treatments, learned how to become her own advocate, and created an Instagram account to help others with the disease. Here’s her story, as told to health writer Alice Oglethorpe.

For Patients With Rare Blood Cancer, New Drug Offers Relief

For patients with a rare type of blood cancer, treatment might finally be coming out of the Dark Ages. People with the chronic condition polycythemia vera make too many red blood cells, thickening their blood and increasing the risk for clots, heart attacks or strokes. The main treatment consists of regular blood draws—essentially bloodletting—to keep the disease in check. But a new drug from Protagonist Therapeutics and Takeda can slow down a patient’s production of red blood cells and nearly eliminates the need for phlebotomies, new data show, potentially reducing patients’ fatigue and other consequences of routine blood draws.

Polycythemia vera: historical oversights, diagnostic details, and therapeutic views

Polycythemia vera (PV) is a relatively indolent myeloid neoplasm with median survival that exceeds 35 years in young patients, but its natural history might be interrupted by thrombotic, fibrotic, or leukemic events, with respective 20-year rates of 26%, 16%, and 4%. Current treatment strategies in PV have not been shown to prolong survival or lessen the risk of leukemic or fibrotic progression and instead are directed at preventing thrombotic complications.

The Tricky Ethics of Big Pharma Soft-Selling on Soap Operas

The logical counterpoint to all of this anti-pharma hysteria is that General Hospital and Incyte are guilty of nothing more than disseminating information.

Will Self: The trouble with my blood

I inwardly congratulated myself for having done just that. But still, polycythaemia vera – what was that? A disease that sounded like a Greek goddess spliced with an East End pub-landlady, a disease that resulted from a single gene mutating and instructing your bone marrow to indulge in a mindless overproduction of red blood cells. A disease that was rare, chronic, incurable and, while no one yet understood the exact reasons for the mutagenesis, disproportionately present among Ashkenazi Jews. I liked that – in my transgenerationally facetious way: my mother had passed a generous dose of Jewish antisemitism down to me, and along with it this Jewish disease had been bred in the bone.

Resources

4 Things to Know About a Rare Blood Cancer Diagnosis

If you’re living with polycythemia vera, myelofibrosis, or essential thrombocythemia, you may have never heard of your condition before being diagnosed—which makes sense. Collectively known as myeloproliferative neoplasms, or MPNs, these rare blood cancers are, well, very rare. About 20,000 Americans are diagnosed with an MPN each year. (For some context, in 2024, an estimated 313,510 people in the US will learn that they have breast cancer.)

5 facts about MPNs, a group of rare blood cancers few Americans know

MPNs are a closely related group of progressive blood cancers in which the bone marrow does not function properly and overproduces certain types of blood cells. They are often characterized by blood clotting, bleeding, spleen enlargement and/or bone marrow scarring.

PV in Focus

Join us for PV IN FOCUS, an in-person day of community and education...

PV Reporter

PV Reporter was created to provide “easy access” to pertinent information on Polycythemia Vera (PV), Essential Thrombocythemia (ET) and Myelofibrosis (MF).

PV State of Mine

Your PV State of Mine is about where you are on your journey with polycythemia vera (PV). It's about recognizing how you feel—and understanding how PV affects your daily life.

Rethink PV Pro

The primary aim of PV management is to maintain HCT below the 45% threshold. CRT (e.g., hydroxyurea, interferon therapy, and JAK inhibitors) is recommended to reduce HCT for patients ≥60 years old, those with prior thrombosis, intolerance to phlebotomy, progressive splenomegaly, or persistent symptoms despite first-line care15

Voices of MPN

Learn how to get involved in the MPN community to connect with other people with MPNs and find tools that help you advocate for yourself and your condition. Approximately 100,000 people in the United States are living with this rare disease. PV can occur at any age, but it is more common in people over 60 years of age. It affects slightly more men than women.

MPN Connect

Polycythemia vera (PV) is a trilineage, Philadelphia chromosome–negative myeloproliferative neoplasm (MPN) characterized by chronic, unregulated proliferation of erythrocytes along with leukocytes and/or platelets without significant bone marrow fibrosis.

MPN Research Foundation

We’re a patient-centered research foundation that exists to change the prognosis for those affected by MPNs.

MPN Voice

Information, community and advocacy for MPN patients. The volunteers who founded MPN Voice* (previously known as MPD Support Charity and MPD Voice), wanted to provide a source of professionally backed information, build and facilitate an MPN community and advocate for patients affected by this rare group of blood cancers*. MPN Voice is still run by volunteers comprising MPN patients and healthcare professionals who continue to share this vision. Myeloproliferative neoplasms (MPNs) were formally known as myeloproliferative disorders (MPDs).

Leukemia & Lymphoma Society

With careful medical supervision, PV can usually be managed effectively for many years. For some PV patients, however, the PV may progress to a more aggressive blood disease, such as myelofibrosis, acute myeloid leukemia or myelodysplastic syndromes.

National Heart, Lung, and Blood Institute

Polycythemia vera (PV) also is known as primary polycythemia. A mutation, or change, in the body's JAK2 gene is the main cause of PV. The JAK2 gene makes a protein that helps the body produce blood cells. What causes the change in the JAK2 gene isn't known. PV generally isn't inherited—that is, passed from parents to children through genes. However, in some families, the JAK2 gene may have a tendency to mutate. Other, unknown genetic factors also may play a role in causing PV.