Myelofibrosis

Patient Perspectives


Hear from real patients who share their perspectives on their myelofibrosis (MF) journey with Jakafi® (ruxolitinib).

Image of Ron

I’m doing pretty darn good.

DRIVING HIS JOURNEY FORWARD:
Ron's MF Story

Having been a competitive race car driver for much of his life, Ron had seen his share of twists and turns. However, when routine blood work revealed concerning abnormalities, his thoughts went into overdrive. His Healthcare Professional repeated his labs as a precaution. Unfortunately, the results were unchanged and led to a diagnosis of intermediate-risk myelofibrosis (MF).

After a second opinion confirmed his diagnosis, Ron was started on hydroxyurea (HU). Unfortunately, his enlarged spleen grew larger, he lost a significant amount of weight, and with little energy, he slept almost all the time. It was the worst experience of his life.

“I didn’t think I was gonna live to the end of the year. And I was so beat up, quite honestly, I didn’t give a damn.”

Right around that time, his team of doctors were encouraging him to try a drug called Jakafi® (ruxolitinib), which had recently come onto market. He was excited by the prospect of this treatment option, but also extremely concerned about being able to afford another medication.

“I had been through another serious medical condition 2 years before and that had pretty much cleaned me out financially.”

With the support of his care team, Ron registered and qualified for IncyteCARES, a patient support program for eligible patients taking Jakafi.

“The brightest day of my elderly life was getting on the Jakafi program.”

When Ron made the switch from HU to Jakafi, he gained back the strength that he had lost. His spleen enlargement reduced to an acceptable size, his energy returned, and he finally started to feel more like himself again.

“Everything took a turn for the better. Within a few months I was at the level I am now: healthy weight, reasonable energy level, and I’d like to think a good mental attitude.”

Today, Ron’s spleen size and blood counts remain stable. He feels healthy and sees his MF Healthcare Professional every 3 months. He has been taking Jakafi since 2016.

“For somebody who didn’t expect to live to the end of the year when I was diagnosed…I’m doing pretty darn good.”
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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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INDICATIONS AND USAGE

INDICATIONS AND USAGE

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.