3 Things to Understand About Rare, Chronic Blood Cancers, According to a Patient

Understanding these three things helped Donna, a patient with polycythemia vera (PV), find the right treatment for her myeloproliferative neoplasm (MPN).
Image Credit: Getty Images/LIVESTRONG.com Creative

When it comes to her outlook on life, Donna* always sees her glass as half full. She's such an optimist, in fact, that you might not guess upon first meeting her that in her mid-sixties, she's living with a rare, chronic blood cancer.


Her journey began in 2011, when she started to feel symptoms — such as chronic hypertension, fatigue and dizziness — that were mistaken for other health problems. As a speech-language pathologist (or speech therapist) and motivational speaker, Donna travels frequently across the country as a speaker for educators. Her symptoms became so debilitating that she struggled to walk the hundred yards to her mailbox. "I used to get halfway and have to sit down in the middle of the road and start crying," she says. Despite many visits to her doctor, she never received a clear explanation for her symptoms until she was referred to an oncologist who ultimately diagnosed her with polycythemia vera. From that point on, she began her journey in understanding how to live with a rare cancer and how to manage this diagnosis.


Polycythemia vera, or PV, is part of a group of rare, chronic blood cancers known as myeloproliferative neoplasms, or MPNs. They develop when the body's bone marrow does not work properly, causing it to produce too few or too many red or white blood cells or platelets depending on the form of MPN, according to the MPN Research Foundation.

MPNs can affect people at any age, but are more common in people over 50. There is no cure, but people with MPNs can generally live for a long time with proper treatment. More than 200,000 people in the United States are estimated to be living with an MPN, according to the Leukemia & Lymphoma Society.


Beyond the numbers and the science, there are three key things Donna wants people to know about her experience of living with an MPN like PV.

1. Speak Up About How You're Feeling

Donna had been sick with various symptoms that were attributed to other conditions for years before she went to her nurse practitioner and said, "You know, someone's missing something," she says. She felt that she was dealing with something more pervasive, so she requested additional lab work.


Upon further review of her blood work, Donna's nurse referred her to a hematologist oncologist — a doctor who specializes in treating blood cancer — who in turn referred her to an MPN specialist. After a bone marrow biopsy, the specialist was able to provide the answers Donna was looking for: She had been living with PV.

Her oncologist prescribed a type of oral chemotherapy called hydroxyurea (HU). "Even though I tried to keep an open mind, my body would not tolerate it, and within a week of taking it I felt worse," Donna says.


After three months of her bloodwork being within healthy levels, but side effects from the HU like fatigue and body aches persisting and worsening, she told her doctor that she could not bear the side effects on a daily basis. That's when stopped receiving HU treatment and was prescribed a medication called Jakafi® (ruxolitinib), a prescription medicine used to treat adults with PV who have already taken hydroxyurea and it did not work well enough or they could not tolerate it.


"In PV, control of the hematocrit — volume of blood taken up by red blood cells — is thought to be very important," Peg Squier, MD, PhD, and group vice president for U.S. medical affairs at Incyte, the makers of Jakafi, says. "In clinical trials, Jakafi was shown to help control patients' hematocrit without requiring phlebotomy — the common treatment practice of taking blood out of the veins to decrease blood volume. Jakafi also helped reduce enlarged spleen in these patients — a commonly experienced symptom amongst patients with PV."


"Physical exhaustion, mental fatigue, itching, abdominal discomfort, night sweats and bone or muscle pain can all be symptoms of PV," Squier says. "These common symptoms can easily be attributed to something else, such as menopause or aging, which can result in PV going undetected by health care providers. This is why it's so important for people living with PV who experience new or changing symptoms to proactively bring them up to their health care teams."

Though her symptoms can sometimes greatly affect her daily life, Donna works closely with her health care team to manage her condition. She credits that to learning more about the disease — which she had never heard of before her diagnosis — and finding the right treatment for her.


"I am proud that I had the courage to tell my doctor my initial treatment just wasn't working for me," she says. "I was able to find a treatment that keeps my blood counts within a healthy range without the debilitating side effects I experienced with hydroxyurea. I think I have the same fatigue any other 66-year-old who travels for work all over the country would feel — which would not be possible if I hadn't spoken up."

About Jakafi

Jakafi can cause serious side effects including low blood counts and infection. Some people who take Jakafi have developed certain types of non-melanoma skin cancers. Increases in blood cholesterol levels can also occur. In patients who took another JAK inhibitor to treat rheumatoid arthritis, there was an increased risk of potentially fatal cardiovascular events like heart attack or stroke in patients with risk factors for these events who smoke now or smoked in the past, as well as an increased risk of blood clots in legs or lungs and new (secondary) cancers like lymphoma, especially in patients who smoke now or smoked in the past. The most common side effects of Jakafi for certain types of MF and polycythemia vera include: low platelet or red blood cell counts, bruising, dizziness, headache, and diarrhea.

Call your Health Care Professional for medical advice about side effects.

To learn more about these and other risks, please read the Important Safety Information below and click for Full Prescribing Information for Jakafi.

2. Do Your Research

When Donna was first diagnosed with PV, she began researching the condition on credible health websites, watching webinars from noted physicians around the country and learning more from her own doctors.



In her research, she took the time to understand the signs and symptoms, as well as what treatment options are available.

Donna brought up Jakafi to her oncologist when the hydroxyurea was making her feel sicker than ever, and they agreed Jakafi would be a good option for her.

"Within two weeks I noticed my body aches from my HU starting to improve," Donna says. "I started to be able to walk from my house to my mailbox. When I made it to the mailbox the first day I thought, 'OK, this is a small win I should celebrate.' It was a measurable improvement."

3. Advocating for Yourself Is Empowering (and Essential)

Doing her research via credible sources gave Donna the confidence to be honest with her health care providers when she felt like something was off, and the knowledge to discuss potential options with them.

"Patients not only know better than anyone else how they are feeling, they know about their experience with the condition in all the moments when they are not in the clinic being observed by the care team. They bring that expertise to the discussion with the health care provider when they decide together what to do next regarding treatment," Squier says. "This is true for all conditions but especially with diseases as rare, symptomatic and individual as PV."

"If I hadn't been an advocate for my own health, we probably wouldn't be having this conversation today," Donna says. "So, I say to everyone, be your own strong voice. Do not be intimidated by the medical profession. Know that your life is valuable, and you are responsible for your own health."

By working with her doctors and taking an active role in her health, Donna was able to find the treatment that makes her feel like her most vibrant self. Click here to hear more about her journey.


To learn more, visit The Purple Chair, a series that explores the emotional experiences of individuals from diagnosis through to the discovery of a path forward with Jakafi.

Please read the Important Safety Information below and click for ‌Full Prescribing Information‌.

About Jakafi

Indications and Usage

Jakafi is a prescription medicine used to treat adults with polycythemia vera who have already taken a medicine called hydroxyurea and it did not work well enough or they could not tolerate it.

Jakafi is used to treat adults with certain types of myelofibrosis.

Jakafi is used to treat adults and children 12 years of age and older with acute graft-versus-host disease (GVHD) who have taken corticosteroids and they did not work well enough.

Jakafi is also used to treat adults and children 12 years of age and older with chronic GVHD who have taken one or two types of treatments and they did not work well enough.


Jakafi can cause serious side effects, including:

Low blood counts:‌ Jakafi® (ruxolitinib) may cause low platelet, red blood cell, and white blood cell counts. If you develop bleeding, stop taking Jakafi and call your health care provider. Your health care provider will do a blood test to check your blood counts before you start Jakafi and regularly during your treatment. Your health care provider may change your dose of Jakafi or stop your treatment based on the results of your blood tests. Tell your health care provider right away if you develop or have worsening symptoms such as unusual bleeding, bruising, tiredness, shortness of breath, or a fever.

Infection‌: You may be at risk for developing a serious infection during treatment with Jakafi. Tell your health care provider if you develop any of the following symptoms of infection: chills, nausea, vomiting, aches, weakness, fever, painful skin rash or blisters.

Cancer:‌ Some people have had certain types of non-melanoma skin cancers during treatment with Jakafi. Your health care provider will regularly check your skin during your treatment with Jakafi. Tell your health care provider if you develop any new or changing skin lesions during treatment with Jakafi.


Increases in cholesterol:‌ You may have changes in your blood cholesterol levels during treatment with Jakafi. Your health care provider will do blood tests to check your cholesterol levels about every 8 to 12 weeks after you start taking Jakafi, and as needed.

Increased risk of major cardiovascular events such as heart attack, stroke or death in people who have cardiovascular risk factors and who are current or past smokers while using another JAK inhibitor to treat rheumatoid arthritis:‌ Get emergency help right away if you have any symptoms of a heart attack or stroke while taking Jakafi, including: discomfort in the center of your chest that lasts for more than a few minutes, or that goes away and comes back, severe tightness, pain, pressure, or heaviness in your chest, throat, neck, or jaw, pain or discomfort in your arms, back, neck, jaw, or stomach, shortness of breath with or without chest discomfort, breaking out in a cold sweat, nausea or vomiting, feeling lightheaded, weakness in one part or on one side of your body, slurred speech

Increased risk of blood clots:‌ Blood clots in the veins of your legs (deep vein thrombosis, DVT) or lungs (pulmonary embolism, PE) have happened in people taking another JAK inhibitor for rheumatoid arthritis and may be life-threatening. Tell your health care provider right away if you have any signs and symptoms of blood clots during treatment with Jakafi, including: swelling, pain, or tenderness in one or both legs, sudden, unexplained chest or upper back pain, shortness of breath or difficulty breathing

Possible increased risk of new (secondary) cancers:‌ People who take another JAK inhibitor for rheumatoid arthritis have an increased risk of new (secondary) cancers, including lymphoma and other cancers. People who smoke or who smoked in the past have an added risk of new cancers.

The most common side effects of Jakafi include:‌ for certain types of myelofibrosis (MF) and polycythemia vera (PV) – low platelet or red blood cell counts, bruising, dizziness, headache, and diarrhea; for acute GVHD – low platelet counts, low red or white blood cell counts, infections, and swelling; and for chronic GVHD – low red blood cell or platelet counts and infections including viral infections.

These are not all the possible side effects of Jakafi. Ask your pharmacist or health care provider for more information. Call your doctor for medical advice about side effects.

Before taking Jakafi, tell your health care provider about:‌ all the medications, vitamins, and herbal supplements you are taking and all your medical conditions, including if you have an infection, have or had low white or red blood cell counts, have or had tuberculosis (TB) or have been in close contact with someone who has TB, had shingles (herpes zoster), have or had hepatitis B, have or had liver or kidney problems, are on dialysis, have high cholesterol or triglycerides, had cancer, are a current or past smoker, had a blood clot, heart attack, other heart problems or stroke, or have any other medical condition. Take Jakafi exactly as your health care provider tells you. Do not change your dose or stop taking Jakafi without first talking to your health care provider.

Women should not take Jakafi while pregnant or planning to become pregnant. Do not breastfeed during treatment with Jakafi and for 2 weeks after the final dose.

Please see the accompanyingFull Prescribing Information, which includes a more complete discussion of the risks associated with Jakafi.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call ‌1-800-FDA-1088‌.

You may also report side effects to Incyte Medical Information at 1-855-463-3463.

Incyte and the Incyte logo are registered trademarks of Incyte.

Jakafi and the Jakafi logo are registered trademarks of Incyte.

© 2024, Incyte. MAT-JAK-04976 03/24

*Patient's last name has been redacted to respect her privacy.




Is this an emergency? If you are experiencing serious medical symptoms, please see the National Library of Medicine’s list of signs you need emergency medical attention or call 911.