If you are living with intermediate or high-risk myelofibrosis (MF), or caring for someone who is, it’s helpful to know that you are not alone. Having access to a wide variety of the latest information, support, and advocacy resources—including those provided by your Healthcare Professional—can be an invaluable tool in your MF journey. These resources can help empower you to take a more active role in your own care.
For more information, click on each link.
Bag It
Bag It’s mission is to educate, support, and empower anyone impacted by cancer. In addition to an online Resource Center, the group offers free Bag It resource bags, which include select publications (in English and Spanish) from trusted organizations that inform and empower patients with cancer and their caregivers. To order a free bag for patients with a myeloproliferative neoplasm (MPN), visit the Bag It website, click the “Order Partner Bag,” and use the code MPN2020 on the ordering page. Bag It also offers the My Companion Guidebook, which provides a place to organize information.
Website/Ordering Page: bagitcancer.org/order
CancerCare®
CancerCare provides free emotional and practical support for people living with cancer, caregivers, loved ones, and the bereaved. Services include case management, counseling and support groups provided by master’s-prepared oncology social workers, financial assistance, educational workshops and materials, and referrals to resources in your area.
Website: cancercare.org
Toll-Free Hopeline: 800-813-HOPE (4673)
Cancer Support Community
Cancer Support Community (CSC) is dedicated to ensuring that all people impacted by cancer are empowered by knowledge, strengthened by action, and sustained by community. Services include the Cancer Support Helpline, reachable by phone or online, for help finding support groups, transportation and housing services, financial assistance, counseling services, and more. The CSC website also offers educational programs, recipes, yoga and meditation videos, opportunities to get involved, and MyLifeLine discussion boards for connecting you with friends, family, and others like you.
Website: cancersupportcommunity.org
Cancer Support Helpline: 888-793-9355
The Leukemia & Lymphoma Society®
The Leukemia & Lymphoma Society (LLS) is a leader in fighting blood cancer via research support, advocacy, and free information, guidance, and support services for patients and families, available in multiple languages. Its Information Specialists—all highly trained oncology professionals—offer up-to-date disease information and can assist you through diagnosis, treatment, and financial and social challenges. The LLS website can connect you with disease and support materials, free nutrition consultation service, clinical trial navigation service, moderated online chats, online community, support groups, webcasts and podcasts, a peer-to-peer program, blood cancer conferences, and much more.
Website: lls.org/patient-support
Phone: 800-955-4572
MPN Advocacy & Education International
This organization provides knowledge, support, and resources to help patients adjust to living with a myeloproliferative neoplasm (MPN) and advocates on their behalf. It offers educational conferences in several cities each year, including the Women & MPN program, free webcasts and videos, online information about MPNs, clinical trial information, MPN research news, links to support groups and other resources, and a newsletter and info packet you can sign up for.
Website: mpnadvocacy.com
MPN Education Foundation
The MPN Education Foundation, run by volunteer patients, brings together researchers and medical experts with patients and families dealing with MPNs. Its website features information on clinical trials and other research studies that are recruiting MPN patients, provides basic disease education and videos featuring medical experts, offers community support groups around the US and in Canada and Japan, and links to select MPN information websites and medical journals. The foundation also sponsors a biannual patient-doctor conference.
Website: mpninfo.org
MPN Research Foundation
This foundation funds original research in pursuit of new treatments, and eventually a cure, for MPNs. It also provides information to the patient community about ongoing research, updates on clinical trials, and referrals to patient support groups. Its Patient Information Kit offers disease education, caregiver and patient resources, a Patient Bill of Rights, and more. The foundation also provides news about industry, organization, and academic-supported research; monthly email digests, including local events for MPN patients and caregivers, and a twice-yearly MPN Update newsletter.
Website: mpnresearchfoundation.org
Contact: [email protected]
National Organization for Rare Disorders
The National Organization for Rare Disorders (NORD) is leading the fight to improve the lives of patients with rare diseases and their families. NORD does this by supporting the rare disease community—its people and organizations—and by working together to accelerate research, increase understanding, provide direct assistance, and drive public policy. NORD is the US sponsor for Rare Disease Day®, which takes place annually on the last day of February, with events held throughout the US to raise awareness about rare diseases. Educational resources, information about financial support programs, and more are available.
Website: rarediseases.org
Patient Empowerment Network
Patient Empowerment Network aims to empower patients with cancer and their care partners with knowledge and tools to help them receive the best care available to ensure the best possible outcomes. Their MPN Network specifically serves patients and families dealing with myeloproliferative neoplasms by providing basic disease information and a robust library of videos, articles, and podcasts to help you advocate for yourself, partner with your healthcare team on making treatment choices, navigate insurance and costs, and take control of your cancer journey.
Website/MPN Network page: powerfulpatients.org/help-by-cancer-diagnosis/myeloproliferative-neoplasms-mpns/
Patient Power®
Patient Power supports patients with cancer and their loved ones through education and advocacy to help them get the right treatment at the right time with the right healthcare team. The organization’s website features interviews with medical experts, researchers, advocates, and knowledgeable patients as well as coverage of key clinical conferences such as ASH and ASCO for leading-edge treatment and clinical trial news. Patient Power also produces informative in-person and live-streamed Town Meetings, moderated online discussions for patients and care partners, and condition-specific news updates and e-newsletters. The organization also posts news through many social media channels.
Website: patientpower.info
*Incyte Corporation is not affiliated with these organizations but may have provided funding for some of their educational programs.
If you have intermediate or high-risk myelofibrosis, find out if Jakafi® (ruxolitinib) may be a possible treatment option for you.
Learn MoreRegister for the Incyte Mentor Program and connect with another patient taking Jakafi.
Learn HowJakafi 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.