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Myelofibrosis

Patient Perspectives

Hear from real patients who share their unique perspectives on their myelofibrosis (MF) journey with Jakafi® (ruxolitinib). Individual results may vary.

Image of Suzanne

I’m doing pretty darn good.

FINDING POSSIBILITIES THROUGH PARTNERSHIP:  
Suzanne's MF Journey

When Suzanne gave birth to her son in 1993, her joy came with unexpected news: She had a rare, chronic blood cancer called essential thrombocythemia (ET). Soon after her diagnosis, Suzanne partnered with a local hematologist to help manage her condition. Her ET was well controlled for nearly 10 years until her disease—along with her  
symptoms—began to change. 


“I would get checkups, and it was all good until my spleen became enlarged.”   

In addition to feeling the effects of an enlarged spleen, Suzanne also experienced severe itching and night sweats. Additional testing confirmed that her ET had indeed transformed into intermediate-risk myelofibrosis (MF). Concerned and confused about this unexpected change in her health, Suzanne partnered with her Healthcare Professional to explore treatment possibilities for managing her MF. This included one promising option called Jakafi® (ruxolitinib). Suzanne felt hopeful and was eager to learn more.  

“He said, ‘Great news! This drug Jakafi that I’ve been telling you about…you’re a perfect candidate for it.’”  

After she started treatment with Jakafi, Suzanne’s spleen size started to reduce. Today, she no longer experiences troubling night sweats, and her itching has also gone away.  

”The timing was ideal…and it worked.”   

In 2017, Suzanne added IncyteCARES for Jakafi to her support team. IncyteCARES for Jakafi is a program that supports eligible patients in a variety of ways during treatment with Jakafi. She enrolled in IncyteCARES for Jakafi and qualified to receive the services they provide, including savings on her copay.  

“IncyteCARES helped to get me the drug without an out-of-pocket cost.”  

Now that she has taken Jakafi since 2013, Suzanne continues with the active lifestyle she enjoys. When reflecting upon her MF journey, she says that the emotional aspect of MF can sometimes be more stressful than the physical part of it. To cope, she and her wife, Tina, stay active, remain positive, and appreciate Suzanne’s response to treatment with Jakafi.  

Although she still sees her original hematologist twice a year, her care team has expanded. It now includes an MF specialist she sees every six months as well as a care team that checks her condition every three months.  

“My doctors look at all my blood counts. When they are stable, they’re confident that nothing’s changing.”   

Suzanne shares her MF story through the Ambassadors for Jakafi program. She is an advocate not only for herself, but for all patients and caregivers on their own journey with MF. After all, she knows from personal experience the power and possibilities of partnering for support.  

“I feel like if I can help people going through it and pass along more knowledge, it could benefit some people.”
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Image of Mayra

I was really scared when I was diagnosed.

SEARCHING FOR SOLUTIONS:  
Mayra’s MF Journey

Having been a graphic designer for most of her life, Mayra was used to exploring creative solutions. However, when she turned 50 and started to experience severe night sweats, there didn’t seem to be anything designed to help her escape them. Knowing that night sweats were a common symptom of premenopause, she assumed that 

this was an inevitable sign of getting older—and didn’t think she had anything to worry about.  

“I had been experiencing intense night sweats and very itchy skin. Since I was 50 years old, I assumed my symptoms were due to premenopause.”  

A few months later in the spring of 2015, Mayra started to experience more troubling symptoms, including weakness, heart palpitations, and difficulty talking and breathing. She was rushed to the emergency room, where blood tests revealed that her hemoglobin was extremely low.  

She was hospitalized for a week, during which additional testing revealed that she was anemic. She was treated with blood transfusions and eventually released. At that time, however, she still didn’t have a definitive answer to what was causing her other symptoms. She left the hospital determined to find a specialist that could help her figure it out.  

Over the next year, Mayra met with numerous Healthcare Professionals while she continued to suffer from severe night sweats, itching after showering, and painful bone and muscle pain. She also continued to experience severe anemia, which left her feeling fatigued. Still lacking a clear diagnosis, she met with a hematologist/oncologist, who performed additional tests, including a bone marrow biopsy. When the biopsy results revealed that she had the JAK2 mutation, it was a turning point in her journey. This finding ultimately led to her diagnosis of high-risk myelofibrosis (MF), a rare, chronic blood cancer.  

“I was really scared when I was diagnosed and didn't know what to expect in the years ahead. I had never heard of MF, and hearing the word “cancer” was terrifying. But at least I finally had an answer.”  

After receiving her diagnosis, Mayra made it a priority to research her condition. She wanted to learn about MF so that she could advocate for her own care and play a role in her care management decisions. She soon learned that her anemia, night sweats, pain, itching, and fatigue were all associated with MF. Her Healthcare Professional recommended that she start Jakafi® (ruxolitinib) immediately.  

“I am fortunate to have a dedicated team of doctors to manage my care [and] to have found the right treatment for me.”  

Today, Mayra sees her hematologist/oncologist on a regular basis. She continues to do her own research and finds additional information and insights through online myeloproliferative neoplasm support groups. Through her continued passion for advocacy (both for herself and the greater MF community), she has finally found a creative solution for taking an active role in her MF journey.  

Mayra has been taking Jakafi since 2016.
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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.