Understanding Stage 1 Polycythemia Vera: What Every Patient Should Know

Polycythemia vera (PV) is a rare blood disorder classified as a myeloproliferative neoplasm, which means the bone marrow produces too many blood cells, particularly red blood cells. This overproduction increases blood thickness, which can lead to complications such as blood clots, strokes, or heart attacks if left untreated. Stage 1 PV, sometimes referred to as early or low-risk PV, is typically identified through routine blood work before serious complications develop.

For newly diagnosed patients, understanding what PV is and how it progresses is essential. PV is a chronic condition, meaning it is long-lasting and requires ongoing management rather than a one-time treatment. However, with proper monitoring and therapy, most patients with stage 1 PV can live normal, healthy lives. Early diagnosis allows for interventions that reduce the risk of clotting, control symptoms, and improve overall quality of life.

PV is most commonly associated with a mutation in the JAK2 gene, which drives overproduction of red blood cells. Less commonly, white blood cell or platelet counts may also be elevated. Many patients may not experience symptoms in the earliest stage, which is why regular check-ups and blood tests are crucial for detection and ongoing monitoring. Common early symptoms, when present, include headaches, dizziness, fatigue, blurred vision, or a sensation of warmth or redness in the face and hands.

Comprehensive Treatment Options for Stage 1 Polycythemia Vera

Treatment for stage 1 PV focuses on reducing risks, preventing complications and managing symptoms. The goal is to maintain blood counts within a safe range and support cardiovascular health. Treatment decisions are individualized, based on factors such as age, underlying health conditions, symptom severity and the presence of risk factors for blood clots.

1. Phlebotomy

Phlebotomy is often the first-line treatment for stage 1 PV. This procedure involves removing small amounts of blood, usually around 250 to 500 milliliters, to reduce the hematocrit—the proportion of red blood cells in the blood. Lowering hematocrit helps reduce blood viscosity and the risk of clot formation. Phlebotomy is generally well-tolerated, but some patients may experience temporary lightheadedness, fatigue or minor bruising at the needle site.

2. Low-Dose Aspirin Therapy

Low-dose aspirin is commonly prescribed to help prevent blood clots by reducing platelet activity. Unless contraindicated by other conditions such as gastrointestinal bleeding or allergies, aspirin therapy is considered a safe and effective preventive measure. Patients should be aware of potential side effects, including mild stomach upset or increased bleeding risk, and should report any unusual bruising or bleeding to their healthcare team.

3. Cytoreductive Therapy

Cytoreductive medications, such as hydroxyurea, may be considered for patients who are at higher risk of clotting, cannot tolerate frequent phlebotomy, or exhibit high platelet or white blood cell counts. Hydroxyurea works by slowing the production of blood cells in the bone marrow. While effective, it may cause side effects such as fatigue, mouth sores, skin changes or temporary suppression of white blood cells. Your oncologist will carefully monitor your blood counts to minimize risks.

4. Lifestyle Modifications

Lifestyle adjustments play a critical role in managing PV. Patients are encouraged to stay active, maintain a healthy weight, avoid smoking, and follow a balanced diet rich in fruits, vegetables, and whole grains. Proper hydration is also essential, as thicker blood increases the risk of clot formation. Stress management and regular cardiovascular exercise can further reduce complications.

Recognizing and Managing Potential Treatment-Related Side Effects

Although treatments for stage 1 PV are generally safe, patients should be aware of potential side effects and communicate any new symptoms to their oncologist. Monitoring is key to preventing complications and maintaining quality of life.

• Phlebotomy: May cause temporary dizziness, fatigue or mild bruising at the needle site. These effects are usually short-lived and manageable.
• Low-dose aspirin: Can occasionally lead to gastrointestinal discomfort or minor bleeding. Patients should avoid taking additional anti-inflammatory medications unless advised.
• Hydroxyurea or other cytoreductive agents: Side effects can include fatigue, skin changes, mouth sores or temporary decreases in white blood cell counts. Regular blood tests help detect issues early and allow dose adjustments.

Nona Baker, a patient and patient advocate based in the United Kingdom, provided insight into the real-life impact of PV and its treatments in an interview with CURE. “I’d had problems with ulcers on my feet because the blood was so thick, and I was permanently going up and down to the hospital having those seen to. It was difficult. The side effects were quite difficult too. Because I was quite young, but there are always side effects to drugs, and they affect different people in different ways.”

She continues to highlight additional challenges: “One of the other side effects that’s been problematical is my skin. I cannot go out in the sun because of actinic keratosis, which has progressed to basal cell carcinomas.”

Understanding these potential side effects empowers patients to proactively manage their health and ensures that treatments are both safe and effective.

What Patients Need to Know Following a Diagnosis of Stage 1 Polycythemia Vera

Accurate diagnosis of PV involves multiple steps, as several conditions can mimic elevated red blood cell counts. The diagnostic process typically includes:

1. Blood tests: Complete blood count (CBC) to evaluate red blood cells, hemoglobin, hematocrit and other blood cell lines.
2. Bone marrow biopsy: Examines the marrow to confirm excessive blood cell production and assess cellular structure.
3. Genetic testing: Detects mutations in the JAK2 gene, which are present in the majority of PV cases and help confirm the diagnosis.
4. Additional assessments: Oxygen saturation and iron studies may be performed to rule out other causes of elevated red blood cell counts.

Understanding your diagnosis helps you actively participate in treatment decisions. Patients are encouraged to ask their oncologist to explain the results of each test and what it means for their care plan.

Patient Guidance for Moving Forward with Stage 1 Polycythemia Vera

Living with stage 1 PV is highly manageable when patients adhere to treatment, maintain regular follow-up, and make lifestyle adjustments. With appropriate care, most patients enjoy normal life expectancy and can prevent serious complications.

Key steps to manage PV effectively include:

• Regular monitoring: Blood tests, bone marrow assessments and physical exams to track disease progression.
• Symptom tracking: Recording headaches, fatigue or any changes in circulation can help the oncologist adjust treatment.
• Treatment adherence: Following phlebotomy schedules, taking medications as prescribed, and communicating side effects.
• Heart-healthy lifestyle: Balanced diet, exercise, smoking cessation and proper hydration to reduce clotting risk.

PV management is a partnership. Open communication with your healthcare team ensures that treatments are tailored to your needs, risks are minimized and quality of life is preserved. Patients are encouraged to ask questions, seek second opinions if desired and consider support resources, including patient groups and educational materials.

What Patients with Polycythemia Vera Should Know

Stage 1 polycythemia vera, while a chronic condition, is highly manageable with early intervention and regular monitoring. Patients who understand their disease, actively participate in care decisions, and maintain a healthy lifestyle can live well and reduce the risk of complications. Education and collaboration with your oncologist are the most powerful tools in navigating your PV journey, ensuring that you remain informed, proactive, and supported every step of the way.

In her conversation with CURE, Baker encouraged other patients to remain hopeful about the future of PV treatment: “My hope is there will be a [drug] that… provides a better quality of life [with PV]. The future has never been brighter. I was diagnosed in 1991, and the drugs that were prescribed in 1991 would not be given a young person these days. So, I am hopeful that soon, there will be something really exciting that will change the lives for people, like myself, with PV.”

Editor's note: This article is for informational purposes only and is not a substitute for professional medical advice, as your own experience will be unique. Use this article to guide discussions with your oncologist. Content was generated with AI, reviewed by a human editor, but not independently verified by a medical professional.

References

“Patient Advocate Shares Why The Future Is Bright For PV,” by Alex Biese. CURE; Nov. 21, 2025. https://www.curetoday.com/view/patient-advocate-shares-why-the-future-is-bright-for-pv

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