Because polycythemia vera (PV) and myelofibrosis (MF) are rare, chronic blood cancers, you and other patients or caregivers may feel alone or isolated from a support 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, and for adults with intermediate or high-risk MF, or their caregivers.
Through supportive, informative phone calls, the 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.
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 for Jakafi, 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.
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.
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 for Jakafi, 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.
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.
To participate in a conversation about your journey with PV, MF, or Jakafi, please complete and submit the form below. By registering, you are confirming that you are an appropriate participant for this program. A program representative will contact you for more information.
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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 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 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.