Polycythemia Vera

Talk to a Patient Taking Jakafi

Everyone’s journey with polycythemia vera is different

Because polycythemia vera (PV) is a rare, chronic blood cancer, you and other patients or caregivers may feel alone or isolated. That’s why it can be so helpful to get support from a community where you can talk about common experiences.

Now you can register to talk with a patient who is taking Jakafi® (ruxolitinib). The Incyte Mentor Program is for adults living with PV who have already taken hydroxyurea (HU) and it did not work well enough or they could not tolerate it. It is also for adults with intermediate or high-risk myelofibrosis (MF), or their caregivers.

Through supportive, informative phone calls, this program provides the opportunity to connect with a mentor* who is currently taking Jakafi.

*Mentors are volunteers who are also a part of the Ambassadors for Jakafi program. They do not give medical advice. It is important to talk to your Healthcare Professional for all questions about your health and medical condition.

Meet the Mentors

Image of Dan, a 67 year old avid golfer.

Dan, an avid golfer and retired financial advisor, hopes to help other patients learn what may be possible for them with Jakafi.

In 2008, after unexpectedly finding a large mass in his upper left abdominal area, Dan was diagnosed with PV. Within 1 year, his condition progressed to intermediate-risk MF. With limited treatment options, Dan was invited to take part in a clinical trial for Jakafi. He has been treating his MF with Jakafi ever since. Dan has also participated in the Jakafi patient support program, IncyteCARES.

For Dan, he relies upon a positive attitude, his faith, and continued treatment with Jakafi. He hopes to help other patients learn what can be possible for them with Jakafi.

Image of Karen, a 70 year old woman.

Karen, a customer service representative, has a positive attitude.

As a customer service representative in the retail industry, Karen understands the importance of helping others. That’s why she is happy to be a part of the Incyte Mentor Program, where her positive outlook can help others.

Karen, a wife, mother, and grandmother was diagnosed with PV in 2010 after a routine checkup revealed low levels of oxygen in her blood. After ruling out pulmonary (lung) causes, she was given her diagnosis of PV. Treated with HU, her blood counts continued to fluctuate. A bone marrow biopsy revealed that her condition had progressed to MF.

Her doctors prescribed Jakafi, but cost concerns led her to IncyteCARES, the patient support program for people taking Jakafi. She was able to get financial support to help afford her medication. She has been taking Jakafi since 2017. As a result, Karen wants others to know that both financial and emotional support are available.

Image of Sue, a 49 year old woman and mother of 3.

Sue, a mother of 3 and home daycare center owner, helps other people like herself.

Sue knows what it means to take care of others. That’s why she became a part of the Incyte Mentor Program.

Diagnosed with intermediate-risk MF in 2012, Sue’s journey began after pain in the left side of her body sent her to an urgent care facility. Upon examination of her enlarged spleen, she was sent back to her primary care doctor, who then referred her to a hematologist for further testing. A bone marrow biopsy helped confirm that she had MF.

A member of an online support group on Facebook, Sue often sees other patients diagnosed with similar conditions. Her advice is to “live the life you’re given.” She wants others with myeloproliferative neoplasms (MPNs) to remember not to dwell so much on their illnesses that they forget to live. She chose to become a mentor to help other people like herself. She has been taking Jakafi since 2012.

Image of Kenneth, a 68 year old man and retired school teacher.

Kenneth, a retired school teacher and builder, hopes to inspire others seeking disease information and access to programs and resources.

In 2008, Kenneth found himself tiring much more quickly than normal. Thinking it wasn’t anything unusual, he ignored it. It wasn’t until 2010 when a bout of pneumonia finally motivated him to get a full health workup. A CAT (CT) scan revealed an enlarged spleen, which led to further testing. After an oncologist read the scan, a subsequent bone marrow biopsy helped confirm a diagnosis of high-risk MF.

Having always been a proactive, “do-it-yourself” kind of person, Kenneth did his own MF research online. There, he learned about Jakafi, which had just concluded its clinical trials and had recently received FDA approval for the treatment of adults with intermediate or high-risk MF. That approval was important to him. He’s been taking Jakafi for more than 6 years now.

As a mentor, this husband, father, and grandfather hopes to share his story to help others who are seeking disease information and access to programs and resources that can be helpful on their own unique MPN journey.

Image of Cam, a husband, father and successful compost farmer.

Cam, a successful commercial compost farmer, husband and father of four, has found a way to be resilient and find the positive in every situation, despite a series of both health and business hardships. He shares his PV experience to provide insight and support to others like himself.

In 2017, Cam’s MPN Specialist determined that HU was no longer working well enough for him and suggested that Cam try Jakafi. After seeing the cost of the medication, Cam was hesitant. However, he worked with IncyteCARES, a patient support program for people taking Jakafi, which enabled him to reduce expenses and afford the medication. Shortly thereafter, he began treatment. He has been taking it ever since.

Cam joined the Incyte Mentor Program in 2019. Today, he continues to be an advocate for cancer patients in his community, doing public speaking and serving as a mentor. His positive experience and upbeat attitude may provide valuable insight and support to other prospective Jakafi patients.

IImage of Mayra, xxxxxxxxx

Mayra, a former graphic designer, believes there is joy to be found in any situation, including having MF. She hopes to support and inspire others who are starting their own MF journeys.

In 2015, at the age of 50, Mayra thought that her night sweats were simply a part of perimenopause—until severe anemia landed her in the emergency room. For the next year, Mayra saw a variety of Healthcare Professionals in search of answers to her growing list of symptoms, which now, in addition to night sweats, also included itching, fatigue, and bone and muscle pain. It wasn’t until she had a bone marrow biopsy that she learned she had the JAK2 mutation. This discovery ultimately led to her diagnosis of high-risk MF. Mayra was immediately started on Jakafi, and she has been taking it since 2016.


Interested in becoming an Incyte Mentor?

If you or someone you care about is already taking Jakafi, your story could help educate and inspire others. Discover how you can join a growing network of Incyte Mentors. Learn about the Ambassadors for Jakafi program.

Register to talk with a patient taking Jakafi

To participate in a conversation about your journey with PV or Jakafi, please complete and submit the form below. A program representative will contact you for more information.

Please complete the following fields.
All fields are required unless otherwise marked.

Your Details
First Name
Last Name
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Your Contact Information
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How long ago were you, or the person you care for, diagnosed with PV?
Has a Healthcare Professional prescribed Jakafi for you/your loved one’s PV?

Consent for Use of Personal Information

By clicking “SUBMIT” below, I authorize Incyte Corporation (“Incyte”) and its agents to use my registration information provided above (my “Information”) to contact me in order to (i) provide education and ongoing support services to me related to treatment, disease and other areas of interest; (ii) provide information about Incyte products and services; and (iii) provide company updates about Incyte. I understand that I may at any time revoke my consent to be contacted for any of these purposes by “opting out” by calling the Incyte Mentor Program at 1-877-647-9206 or emailing info@IncyteMentorProgram.net.

I also authorize Incyte and its agents to (i) combine my Information with that of other registrants to create aggregated, anonymized data and to use and share the anonymized data for any legitimate purpose; and (ii) to use and disclose my Information for any other purpose described in Incyte’s Privacy Policy. I understand that Incyte’s Privacy Policy may change from time to time and that I should check the website for the most recent version, as well as for the most recent version of Incyte’s Legal Notices.

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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.