Living My Life With a Rare Blood Cancer
“I was determined to stand up and take control, starting with learning as much as I could about my disease.”
As a single mother and licensed mental health professional, I once spent time helping my patients through challenges, along with playing softball or volleyball with my family and friends. In 2011, these activities were brought to a standstill when I began experiencing severe migraines, leaving me bedridden for days and unable to lift my head from my pillow. On top of these debilitating migraines, I was constantly itching and waking up with night sweats.
I knew something was wrong, so I spent several months with my doctor trying different treatments to alleviate my unbearable symptoms and hopefully find the root cause of my health issues. But when the symptoms didn’t subside, my doctor ordered a blood test, which showed highly elevated blood counts. Hoping there was an error, I completed another blood test, which confirmed the accuracy of the original results. My doctor referred me to a hematologist oncologist, a doctor who specialized in treating cancers of the blood. They diagnosed me with essential thrombocythemia (ET), a rare, chronic blood cancer that is part of a group of blood cancers called myeloproliferative neoplasms, or MPNs.
Learning about MPNs
As a former member of the United States Army Military Police, I have always pushed through obstacles. Being diagnosed with ET was something I never expected or imagined. At first, I was scared and tried to deny it, but after some hard reflection (and a good cry in my car) I was determined to stand up and take control, starting with learning as much as I could about my disease.
I learned that MPNs are progressive cancers, meaning they can change or worsen over time, and that there are three common types, including ET, polycythemia vera (PV), and myelofibrosis (MF). These cancers develop when the body’s bone marrow does not work correctly, causing it to produce too few or too many red or white blood cells or platelets (depending on the form of MPN). The symptoms I was experiencing were also among some of the most common that those living with MPNs may have.
A New Stage in My Disease
I continued working closely with my oncologist to manage my ET, but after about four years my symptoms, including persistent itching, continued to worsen. My oncologist conducted a test which showed that my spleen was almost twice the size it should have been, and [he] diagnosed me with MF. I was devastated to hear that my ET had progressed to MF. Following this new diagnosis, my oncologist provided me with other treatments. They either did not seem to work for me or I experienced various side effects.
As a result, my oncologist and I knew we needed to try something different. That’s when [he] prescribed a medication called Jakafi® (ruxolitinib), a prescription medicine used to treat adults with certain types of MF. I was told that Jakafi was proven to reduce the size of the spleen, which can address many symptoms those with certain MPNs may face. Jakafi is not approved to treat essential thrombocythemia.
Managing My Myelofibrosis
I can only speak for my experiences – knowing that every person with MF is different – but my spleen stopped increasing in size. I started to feel like myself again and gained more energy. Since my symptoms improved, that led me to be able to resume my daily walks and activities with my kids and grandkids. MF is part of my life now, I have to track my symptoms and treat this disease in close partnership with my doctor. Jakafi has been shown to reduce spleen size and improve the core symptoms of MF, including spleen-related symptoms, in some patients. In clinical trials with Jakafi, migraines were not a symptom assessed. Jakafi can cause side effects, so it’s important to talk to your doctor about whether it’s right for you.
Jakafi can cause serious side effects including low blood counts and infection. Some people who take Jakafi have developed certain types of non-melanoma skin cancers. Increases in blood cholesterol levels can also occur. In patients who took another JAK inhibitor to treat rheumatoid arthritis, there was an increased risk of potentially fatal cardiovascular events like heart attack or stroke in patients with risk factors for these events who smoke now or smoked in the past, as well as an increased risk of blood clots in legs or lungs and new (secondary) cancers like lymphoma, especially in patients who smoke now or smoked in the past. The most common side effects of Jakafi for certain types of MF and polycythemia vera include: low platelet or red blood cell counts, bruising, dizziness, headache, and diarrhea.
Call your Healthcare Professional for medical advice about side effects.
To learn more about these and other risks, please read the Important Safety Information below and click for Full Prescribing Information for Jakafi.
To learn more, visit The Purple Chair, a series that explores the emotional experiences of individuals living with an MPN from diagnosis through to the discovery of a path forward with Jakafi.
I encourage others also living with an MPN to educate themselves about their disease, ask questions, and build a relationship with their doctor. It’s critical to be your own advocate and find the right treatment for you. For me that was Jakafi, which I credit – along with my doctor – for improving my symptoms.
Please read the Important Safety Information below and click for Full Prescribing Information.
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.
IMPORTANT SAFETY INFORMATION
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 click for 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
This is Tami’s experience with Jakafi. Individual results may vary. Only your health care professional can decide if Jakafi is right for you.
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