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Together, We’re Sitting on Years of Experience

HEAR OUR STORIES

Together, We’re Sitting on Years of Experience

HEAR OUR STORIES

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About The Purple Chair

About
The Purple Chair

Brought to you by Brought to you by

Meet Chuck, Donna, Mark, and Tami, 4 inspiring individuals who share their emotional journeys with a rare, chronic blood cancer. The Purple Chair series explores their collective experiences, from diagnosis through to the discovery of a path forward with Jakafi—the first FDA-approved prescription medicine for adults with intermediate or
high-risk myelofibrosis (MF) and the first FDA-approved prescription medicine for adults with polycythemia vera (PV) who have already taken a medicine called hydroxyurea (HU) and it did not work well enough or they could not tolerate it. Find out what became possible for them—and explore what may be possible for you.

Watch the Series

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TRAILER

TRAILER

In The Purple Chair

What do these 4 patients with PV or intermediate or high-risk MF have to say from The Purple Chair?

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EPISODE

1

EPISODE 1

How Our Journeys Began

How does it feel to learn that you have a rare, chronic blood cancer?

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EPISODE

2

EPISODE 2

Finding a Path Forward

Can asking questions lead to self-advocacy?

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EPISODE

3

EPISODE 3

Discovering the
Power of Partnership

Who says experience is everything?
They do.

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EPISODE

4

EPISODE 4

Reflecting on the Possibilities

How did exploring their treatment possibilities change their perspectives?

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img_epi5_carousel_hover Image of a woman standing outside for The Purple Chair Episode 5 – We Are Not Alone
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EPISODE

5

EPISODE 5

We Are Not Alone

How can connecting with others help inform the journey ahead?

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Meet Our Storytellers

Image of Chuck, "The Advocator" from The Purple Chair video – with text – Taking Jakafi for PV since 2020. Image of Chuck, "The Advocator" from The Purple Chair video – with text – Taking Jakafi for PV since 2020.
Image of Chuck, "The Advocator" from The Purple Chair video – with text – Taking Jakafi for PV since 2020. img_chuck_expanded_m@2x

Chuck, “The Advocator”

Taking Jakafi for PV Since 2020

MEET CHUCK +

“It was important for me to not just trust the doctor, but to also advocate for myself about what was going on in my body. I’m the CEO of my medical team.”

CLOSE -

After a routine physical in 2014 revealed elevated red blood cell counts, Chuck’s primary Healthcare Professional sent him to a specialist for further evaluation. At the time, he didn’t think it was anything serious. That is, until he realized he was being referred to an oncologist. Weeks later, after several appointments and a positive test for the JAK2 mutation, Chuck was diagnosed with polycythemia vera (PV). He was told that it was a rare blood condition that could be managed with phlebotomy. The word cancer never came up. Chuck accepted what he was told and didn’t ask too many questions.

After about 5 weeks of phlebotomies, Chuck was started on hydroxyurea (HU), which he took for years, despite suffering various side effects. During this time, he consulted with a number of Healthcare Professionals, hoping to find someone with experience treating PV. A little more than a year after his diagnosis, Chuck finally connected with a hematologist who confirmed that PV was, indeed, a rare, chronic blood cancer. That’s when things finally clicked in his mind—and he knew it was time to become a more informed and vocal advocate for his own care, starting with getting the facts about what was going on inside his body.

Chuck began doing more of his own research. He started asking more questions during medical appointments. He also joined several online PV support groups and attended online medical webinars. As he began taking a more active role in his own care, he also started noticing and keeping track of how his disease was changing—and communicating those changes to his care team. This enabled Chuck and his Healthcare Professional to take action when his spleen became enlarged.

One day, while doing online research, Chuck came across information about Jakafi. All-too-frequent phlebotomies—along with ongoing HU side effects—led him to consider the possibility of making a change. So, he did his research. He asked questions. He even discussed it in his support groups. And in 2020, his Healthcare Professional prescribed Jakafi. Since starting treatment, his blood counts are well controlled, and he has not required any more phlebotomies.

As an Ambassador for Jakafi, Chuck hopes to inspire others to become educated and empowered advocates for their own care.

Image of Donna, "The Communicator" from The Purple Chair video – with text – Taking Jakafi for PV since 2020. Image of Donna, "The Communicator" from The Purple Chair video – with text – Taking Jakafi for PV since 2020.
Image of Donna, "The Communicator" from The Purple Chair video – with text – Taking Jakafi for PV since 2020. Image of Donna, "The Communicator" from The Purple Chair video – with text – Taking Jakafi for PV since 2020.

Donna, “The Communicator”

Taking Jakafi for PV Since 2020

MEET DONNA +

“I'm now on the path to possible because I was on a path to impossible.”

CLOSE -

As a former public speaking teacher Donna had always been a great communicator. She had a lifelong passion for acquiring knowledge—and an enthusiasm for sharing it. That’s why, in her retirement, she became a motivational speaker for the education sector. Ironically, however, she had been keeping quiet for several years regarding growing concerns about her own health.

In December 2019, after noticing a trend of irregularities in her blood counts, she finally motivated herself to speak up. She reached out to her Healthcare Professional, who confirmed that further evaluation was needed. Donna was referred to a hematologist/oncologist, who then sent her to an MPN specialist. She was officially diagnosed with polycythemia vera (PV) in April 2020. She had never heard of PV before and immediately began educating herself about her new health status.

Initially, Donna’s PV was treated with phlebotomy and hydroxyurea (HU). Unfortunately, she spent several months struggling with severe HU side effects that made it nearly impossible to complete her motivational speaking obligations. She reached out to her Healthcare Professional to set up time to discuss her other treatment possibilities. That’s when she learned about Jakafi and consulted with her Healthcare Professional about taking her PV journey in a different direction.

After making the switch to Jakafi, Donna’s HU side effects resolved and her blood counts have stabilized. She has been able to return to her motivational speaking duties and credits Jakafi with helping to make that possible. She has been taking it since 2020.

As an Ambassador for Jakafi, Donna hopes to motivate other patients and caregivers to understand the importance of self-advocacy and ongoing healthcare communication. She also hopes to inspire others to discover what may be possible with Jakafi.

Image of Mark, "The Coach" from The Purple Chair video – with text – Taking Jakafi for Intermediate-Risk MF since 2017. Image of Mark, "The Coach" from The Purple Chair video – with text – Taking Jakafi for Intermediate-Risk MF since 2017.
Image of Mark, "The Coach" from The Purple Chair video – with text – Taking Jakafi for Intermediate-Risk MF since 2017. Image of Mark, "The Coach" from The Purple Chair video – with text – Taking Jakafi for Intermediate-Risk MF since 2017.

Mark, “The Coach”

Taking Jakafi for Intermediate-Risk MF Since 2017

MEET MARK +

“I just said I'm just going to tackle it. I'm going to live life.”

CLOSE -

As a social worker and youth sports coach, Mark always had a passion for community service and helping others. That’s why, after he was diagnosed with intermediate-risk myelofibrosis (MF) in 2017, he decided that he was going to use his own experiences to help inspire and support other patients and caregivers.

Mark’s journey actually began in 2013, after symptoms of bleeding, burning/tingling extremities, and itching after showering led to an unexpected diagnosis of polycythemia vera (PV). For 2 years, he managed his condition with a strict regimen of phlebotomy, aspirin, and dietary changes. However, during a routine physical in 2017, the clinician observed that his spleen had become enlarged. He was immediately sent to the hospital for further evaluation. Additional testing confirmed that his PV had transformed into MF.

Having always been an active sports buff, Mark knew that certain aspects of his current lifestyle would need to change—especially with regard to contact sports and potential spleen injury. However, never one to shy away from a challenge, he knew that somehow, he would find a path forward.

Mark committed to learning as much as he could about his MF diagnosis, including his treatment options. Together, he and his Healthcare Professional decided to explore what was possible with Jakafi.

Since starting Jakafi in 2017, Mark’s symptoms and spleen size have improved. Today, he continues to provide youth coaching, but does his best work from the sidelines.

As an Ambassador for Jakafi, Mark hopes that his story can help inspire others to become informed advocates for their own health journeys.

Image of Tami, "The Forward Thinker" from The Purple Chair video – with text – Taking Jakafi for High-Risk MF since 2015. Image of Tami, "The Forward Thinker" from The Purple Chair video – with text – Taking Jakafi for High-Risk MF since 2015.
Image of Tami, "The Forward Thinker" from The Purple Chair video – with text – Taking Jakafi for High-Risk MF since 2015. Image of Tami, "The Forward Thinker" from The Purple Chair video – with text – Taking Jakafi for High-Risk MF since 2015.

Tami, “The Forward Thinker”

Taking Jakafi for High-Risk MF Since 2015

MEET TAMI +

“I said... I'm going to find out a way to move forward… I was going to take charge again.”

CLOSE -

After suffering through decades of increasingly severe migraines, a 3-day-long episode in 2011 finally prompted Tami, a licensed mental health professional, to seek medical attention. However, she was unprepared when her urgent care visit ultimately led to a diagnosis of essential thrombocythemia (ET). Always one to look on the bright side, she allowed herself one good cry before concluding that self-pity wasn’t going to help. Instead, she was determined to find a positive path forward.

Despite her upbeat attitude, Tami’s condition eventually began to worsen. After 4 years, she began suffering from debilitating bone pain and night sweats, in addition to ongoing fatigue and a feeling of fullness that affected her ability to eat. She felt powerless to manage her symptoms and feared that she might require an assisted living facility.

Still determined to find hope, Tami partnered with her Healthcare Professional to reevaluate her current treatment—and her diagnosis. That’s when she learned that her ET had transformed into high-risk myelofibrosis (MF). She also learned that her spleen had become enlarged. With a new diagnosis, Tami also discovered new treatment possibilities, including a promising path forward with Jakafi.

After taking Jakafi, Tami’s MF symptoms have significantly improved. Her spleen has stopped increasing in size. She is also now able to enjoy hiking and being outside in nature. She has been taking Jakafi since 2015.

As an Ambassador for Jakafi, Tami hopes that her story of perseverance and positivity can help other patients find hope and possibility.

We’re Saving a Seat,
Just for You

Your story could help educate and inspire others. Learn how you can join a growing network of Incyte Mentors by becoming an Ambassador for Jakafi.

Discover if Jakafi
Is Right for You

Explore helpful materials to guide you on your journey with Jakafi.

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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.

Important Safety Information

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 healthcare provider. Your healthcare provider will do a blood test 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.

Cancer: Some people have had certain types of non-melanoma skin cancers during treatment with Jakafi. Your healthcare provider will regularly check your skin during your treatment with Jakafi. Tell your healthcare 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 healthcare 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 healthcare 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 healthcare provider for more information. Call your doctor for medical advice about side effects.

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 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 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.