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Chuck: People often ask me about my medical team, and I always tell them that I'm the CEO of my medical team because my doctor doesn't know what's going on in my body. I need to care about myself to make sure that I get the best care possible.

Onscreen text: Chuck was diagnosed with polycythemia vera (PV) in 2014.

Onscreen text: THE PURPLE CHAIR

EPISODE 3: Discovering the Power of Partnership


Tami: There was a point in time where I felt like I was this orphan. You know, it was a really rare disease.

Onscreen text: Tami was diagnosed with high-risk myelofibrosis (MF) in 2015.

Tami: It is so important to have someone who knows what you're dealing with.

Onscreen text: When you’re living with a rare, chronic blood cancer…


Chuck: When I was initially diagnosed, I was kind of confused…not knowing exactly what direction I should go.

Donna: I remember the nurse practitioner saying “I don't really know what this is…it's not in my area.”

Onscreen text: Donna was diagnosed with PV in 2020.

Tami: He’d never treated this particular illness before.

Mark: First thing I did was I found a new doctor, somebody that was aware of PV and MF.

Onscreen text: Mark was diagnosed with intermediate-risk MF in 2017.

Onscreen text: Polycythemia vera and myelofibrosis are rare, chronic blood cancers that are part of a group of diseases called myeloproliferative neoplasms (MPNs).

Tami: Your responsibility for you lies within you. And if you're not willing to take it on, then who will?


Chuck: Specialization is very important in medicine, and a doctor who specializes in MPNs may be able to give me some information that will be very helpful to me.

Donna: I'd never been to a place that has the word cancer written on it, and part of me said you don't belong here. And then I remember thinking, this is a good place to get to come if you need it. It was a specialized oncologist that I knew maybe would have more answers.

Chuck: I did a lot of visiting different doctors. In fact, what a joy it is to know that this person I'm talking to knows exactly what I'm talking about.

Mark: I became much more optimistic. I could really see the path forward in my journey.

Donna: And for a patient who’s pretty…uncertain, that brought a lot of certainty to my world.

Tami: I walked out of there that day hopeful. I walked out of there positive. I walked out of there with confidence.


Donna: When you're looking for a doctor to lead your healthcare team, it's very important that you feel so connected with her.

Tami: You have to be willing to spend the time, to build a relationship with your doctor. You have to be involved. You have to ask questions.

Chuck: I always make sure that I have at least a little bit of documentation about what's been going on since my last visit. Have things gotten worse? Do I have new concerns?

Tami: You have to treat your doctor’s exam like just what it is—an exam. You have to prepare for it.

Mark: You have to be able to tell your doctor about any changes, the most minute, you know, doesn't have to be an old symptom. It could be something new that wasn't happening before.

Chuck: They need to ask specific questions about their prognosis, about their treatments, about their blood counts.

Tami: My doctor is actually the one who suggested I keep a notebook. He says, I can't prepare for your visits the way you can.

Donna: It's not my doctor's responsibility to do that for me. She's my support system in health care. But I have to take charge of my own health.


Mark: I would definitely say that we're partners.

Tami: You can’t expect one human being to carry the full load. You have to be willing to be involved.


Chuck: Perspective is everything. I've learned that one of the best ways to cope with this disease is to not consider anything impossible.

Donna: My oncologist gave me a phrase that will probably stay with me for the rest of my life—"It is incurable, but it is treatable and manageable." She said it like, we've got this.

Tami: I had gone to see my doctor, and he said, I think I have an idea.

Tami: He said, we're going to try something different. And it's called Jakafi.

Onscreen text: NEXT EPISODE

Reflecting on the Possibilities

Onscreen text: Brought to you by Jakafi® (ruxolitinib)


Onscreen text and narrator: Jakafi® (ruxolitinib) is the first FDA-approved prescription medicine for adults with PV who have already taken a medicine called hydroxyurea (HU) and it did not work well enough or they could not tolerate it. Jakafi is also the first FDA-approved prescription medicine for adults with intermediate or high-risk MF.

Onscreen text and narrator: 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 at, 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, or call 1-800-FDA-1088.

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

Onscreen text: Register for educational tools and resources to support your healthcare journey


This video is sponsored by Incyte Corporation. Jakafi and the Jakafi logo are registered trademarks of Incyte.

© 2022, Incyte Corporation. MAT-JAK-02976  02/22


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Who says experience is everything? They do. Find out why choosing the right healthcare partners made a meaningful difference for these 4 patients with a rare, chronic blood cancer diagnosis.

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