Polycythemia Vera

Patient Perspectives


Hear from real patients who share their perspectives on their polycythemia vera (PV) journey with Jakafi® (ruxolitinib).

Image of Lee

This is your life on the line. Question everything.

LISTENING TO MY BODY:
Lee’s PV Journey

As a former triathlete, Lee had always been in tune with his body, often knowing intuitively when something was “off.” However, when he suffered a serious and unexpected medical emergency at the age of 45, it was puzzling to say the least. Blood tests revealed several possible diagnoses, including polycythemia vera (PV).

Despite a previously clean bill of health, Lee’s doctors suggested a retest and a consult with a hematologist. After seeking a second opinion from a myeloproliferative neoplasm (MPN) specialist, his PV diagnosis was confirmed, and he was started on hydroxyurea (HU). However, despite a series of dosing adjustments, his body was telling him that something still wasn’t right.

“I felt like I had the flu for 5 months. I was so sick from hydroxyurea. I knew I was going to have to push for a change.”

Fortunately, Lee’s network included other medical professionals in the pharmacy and hematology professions. He shared how he was feeling on HU and learned that his body was likely reacting to the treatment. A consult with his MPN specialist confirmed his theory: he was intolerant to HU.

”You have to identify when this is not working for you anymore. This is your life on the line. Question everything.”

Having researched his options ahead of time, Lee had already discovered Jakafi® (ruxolitinib) as a potential treatment option—and he was eager to explore the possibilities. With his MPN specialist encouraging the switch, Lee’s local hematologist agreed to the change and he was started on Jakafi right away. He was happy with the results he observed while being treated with Jakafi.

Since then, Lee has continued to do his own research, including gathering additional insights and information from online MPN forums and support groups. He also continues to work closely with his care team in his ongoing search for answers, often sharing his ever-increasing binder of research papers. He has been taking Jakafi ever since.
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Image of Rebecca

You have to stand up for yourself.

DISCOVERING THE ADVOCATE WITHIN:
Rebecca's PV Journey

In 2004, irregularities in Rebecca’s blood work led her family doctor to refer her to a cancer center. She was diagnosed with polycythemia vera (PV) and was abruptly told that she had just 6 years to live. Stunned, she didn’t think to question her prognosis. Instead, she quietly accepted the news, despite feeling confusion and denial.

“I kept thinking, this has to be wrong. This can’t be.”

For some time, Rebecca simply followed orders, managing her extremely high hematocrit levels with twice-weekly phlebotomies, which always made her anxious. But as time passed—and her fears about the future increased—she decided to take control and move her journey in a different direction. She got a second opinion.

“You have to stand up for yourself. Nobody is going to do it for you.”

After doing some research, Rebecca found a Healthcare Professional who specialized in PV and who became a partner in her treatment journey. After treatment with hydroxyurea (HU) failed to work well enough, she discovered what may be possible with Jakafi® (ruxolitinib).

“Jakafi became available right at that time. I never had to have another phlebotomy.”

Rebecca’s ongoing journey with PV is now approaching 16 years. She has been taking Jakafi since 2014.
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Image of Cindy

The IncyteCARES representative worked with my insurance company.

FOLLOWING HER INSTINCTS:
Cindy’s PV Journey

When blood tests from her annual physical revealed an unusually high hematocrit level, Cindy’s family doctor immediately suspected cancer. He referred her to a local oncologist who she felt was less familiar with her rare condition.

When B-12 shots were the only recommended course of therapy, Cindy felt that there had to be more that she could be doing. Although she still didn’t fully understand what was going on with her body, she did know that she wasn’t feeling any better. She also knew that she needed to take additional action, and seeking the help of a specialist seemed like a good place to start.

“Something was telling me that’s not enough.”

In pursuit of a second opinion, Cindy went to a major cancer center, where additional lab work confirmed that she had polycythemia vera (PV), a rare, chronic blood cancer. She was immediately started on hydroxyurea (HU) and encouraged by the myeloproliferative neoplasm (MPN) specialist to attend her first patient meeting to learn more about her condition.

“Once [my Healthcare Professional] knew what it really was…I knew I was in the right hands.”

Cindy remained on HU for several years, until she started to experience troubling side effects. At the time, she had been mourning the recent loss of her husband of 35 years. Assuming that it was simply part of her grief, she opted not to share how she was feeling with her care team. As time passed, however, she started to suspect that it could be treatment related. Once again, her instincts urged her to take action and talk to her Healthcare Professional.

“I was feeling run down. I could hardly do anything. That's how bad I was feeling.”

Her MPN Specialist confirmed that treatment with HU was no longer controlling her PV and recommended a switch to Jakafi® (ruxolitinib). Although she was initially anxious about making a change, she was ready to explore a treatment possibility with Jakafi. She was glad that she did.

Another pleasant surprise was that her care team enrolled her in IncyteCARES, the patient support program for eligible patients taking Jakafi. As a result, Cindy got information and support to help her throughout her treatment journey with Jakafi.

"I didn't ask them. The IncyteCARES representative worked with my insurance company to provide the support that I needed. I am so thankful."

As part of IncyteCARES, Cindy also receives ongoing assistance with ordering and refilling her Jakafi prescription every month. Today, she continues to see her specialist every few months. And when she has a question about her health, she no longer delays taking action. She does her own research online and doesn’t hesitate to call her Healthcare Professional for answers.

She has been taking Jakafi since 2017.

“I feel so blessed for Jakafi.”
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INDICATIONS AND USAGE

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 also 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.

Important Safety Information

Jakafi can cause serious side effects, including:

Low blood counts: Jakafi® (ruxolitinib) may cause your platelet, red blood cell, or white blood cell counts to be lowered. If you develop bleeding, stop taking Jakafi and call your healthcare provider. Your healthcare provider will perform blood tests to check your blood counts before you start Jakafi and regularly during your treatment. Your healthcare provider may change your dose of Jakafi or stop your treatment based on the results of your blood tests. Tell your healthcare 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 healthcare provider if you develop any of the following symptoms of infection: chills, nausea, vomiting, aches, weakness, fever, painful skin rash or blisters.

Skin cancers: Some people who take Jakafi have developed certain types of non-melanoma skin cancers. Tell your healthcare provider if you develop any new or changing skin lesions.

Increases in cholesterol: You may have changes in your blood cholesterol levels. Your healthcare provider will do blood tests to check your cholesterol levels during your treatment with Jakafi.

The most common side effects of Jakafi include: for certain types of MF and PV – low platelet or red blood cell counts, bruising, dizziness, headache, and diarrhea; and for acute GVHD – low platelet, red or white blood cell counts, infections, and fluid retention.

These are not all the possible side effects of Jakafi. Ask your pharmacist or healthcare provider for more information. Tell your healthcare provider about any side effect that bothers you or that does not go away.

Before taking Jakafi, tell your healthcare 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 tuberculosis (TB) or have been in close contact with someone who has TB, have or had hepatitis B, have or had liver or kidney problems, are on dialysis, have high cholesterol or triglycerides, had skin cancer, or have any other medical condition. Take Jakafi exactly as your healthcare provider tells you. Do not change your dose or stop taking Jakafi without first talking to your healthcare 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 Full 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.