Register for updates

Myelofibrosis

Advocacy Resources

What other support and advocacy resources are available for people with intermediate or high-risk myelofibrosis?

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.

 

Organizations*

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.

Image of woman – Jakafi patient – talking on the phone, sitting on a park bench

Discover if Jakafi may be right for you

If you have intermediate or high-risk myelofibrosis, find out if Jakafi® (ruxolitinib) may be a possible treatment option for you.

Learn More
Image of Sue – Watch her story and learn how her MF symptoms affected her before she started taking Jakafi.

Talk with a patient like Sue

Register for the Incyte Mentor Program and connect with another patient taking Jakafi.

Learn How

Expand

 

Collapse

 
 
 

What is JAKAFI® or JAKAFI XR™?

What is JAKAFI® or JAKAFI XR™?

JAKAFI or JAKAFI XR (ruxolitinib) is a prescription medication used to treat adults with certain types of myelofibrosis (MF).
It is not known if JAKAFI or JAKAFI XR is safe or effective in children for treatment of myelofibrosis.

JAKAFI or JAKAFI XR is a prescription medication used to treat adults with polycythemia vera (PV) who have already taken a medicine called hydroxyurea and it did not work well enough or they could not tolerate it.
It is not known if JAKAFI or JAKAFI XR is safe or effective in children for treatment of polycythemia vera.

JAKAFI or JAKAFI XR is a prescription medication 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 or JAKAFI XR is a prescription medication used to treat adults and children 12 years of age and older with chronic graft-versus-host disease (GVHD) who have taken one or two types of treatments and they did not work well enough.

Important Safety Information

JAKAFI or JAKAFI XR can cause serious side effects, including:

Low blood counts: JAKAFI or JAKAFI XR may cause low platelet, red blood cell, and white blood cell counts. If you develop bleeding, stop taking JAKAFI or JAKAFI XR and call your healthcare provider. Your healthcare provider will do a blood test to check your blood counts before you start and regularly during your treatment. Your healthcare provider may change your dose 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
  • a fever

Infection: You may be at risk for developing a serious infection during treatment with JAKAFI or JAKAFI XR. 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

Worsening of symptoms after interrupting or stopping treatment. Signs and symptoms of myelofibrosis may worsen after you stop treatment.

Do not interrupt or stop treatment without talking to your healthcare provider. Tell your healthcare provider right away if you have any of the following after stopping treatment:

  • fever
  • trouble breathing
  • weakness
  • night sweats
  • feeling dizzy or lightheaded
  • pain in left upper stomach area or left shoulder

Cancer: Some people have had certain types of non-melanoma skin cancers during treatment with JAKAFI or JAKAFI XR. Your healthcare provider will regularly check your skin during your treatment. Tell your healthcare provider if you develop any new or changing skin lesions during treatment.

Increases in cholesterol: You may have changes in your blood cholesterol levels during treatment with JAKAFI or JAKAFI XR. Your healthcare provider will do blood tests to check your cholesterol levels about every 8 to 12 weeks after you start taking JAKAFI or JAKAFI XR 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 get any symptoms of a heart attack or stroke during treatment with JAKAFI or JAKAFI XR, 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 or JAKAFI XR, 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 or JAKAFI XR include:

  • for certain types of myelofibrosis (MF) – low platelet or red blood cell counts, bruising, dizziness, headache, and diarrhea
  • for certain types of 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
  • for chronic GVHD – low red blood cell or platelet counts and infections, including viral infections

These are not all the possible side effects. Ask your pharmacist or healthcare provider for more information. Call your doctor for medical advice about side effects.

Before taking JAKAFI or JAKAFI XR, tell your healthcare provider about:

  • all the medications, vitamins, and herbal supplements you are taking
  • your medical conditions, including if you
    • have or had low white or red blood cell counts
    • have an infection
    • 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 a high level of fat in your blood (high blood cholesterol or triglycerides)
    • have or have had a blood clot, heart attack, other heart problems, or stroke
    • are a current or past smoker
    • had cancer
    • have or had liver or kidney problems or are on dialysis. If you are on dialysis, JAKAFI or JAKAFI XR should be taken after your dialysis
    • have any other medical condition

Women should not take JAKAFI or JAKAFI XR while pregnant or planning to become pregnant. Do not breastfeed during treatment with JAKAFI or JAKAFI XR and for 2 weeks after the final dose.

How should I take JAKAFI or JAKAFI XR?

  • Take exactly as your healthcare provider tells you.
  • Do not change your dose or stop taking JAKAFI or JAKAFI XR without first talking to your healthcare provider. If you stop treatment, symptoms of your condition may return.
  • If you miss a dose, take your next dose at your regular time. Do NOT take 2 doses at the same time.
  • You may have regular blood tests during your treatment. Based on the results, your healthcare provider may change your dose or stop JAKAFI or JAKAFI XR.
  • IF YOU ARE PRESCRIBED JAKAFI:
    • Take JAKAFI 2 times a day with or without food.
    • JAKAFI may also be given through certain nasogastric tubes.
    • Tell your healthcare provider if you cannot take JAKAFI by mouth. Your healthcare provider will decide if you can take JAKAFI through a nasogastric tube. Ask your healthcare provider to give you specific instructions on how to properly take JAKAFI through a nasogastric tube.
  • IF YOU ARE PRESCRIBED JAKAFI XR:
    • Take JAKAFI XR 1 time a day with or without food.
    • Swallow JAKAFI XR whole. Do not split, crush, or chew.

Please see the Full Prescribing Information, including Patient Information, which includes a more complete discussion of the risks associated with JAKAFI or JAKAFI XR.

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.