How My Life Changed After Being Diagnosed With a Rare, Chronic Blood Cancer

Article By: Mayra D. Andújar Delgado, As Told To Linnea Zielinski

“I had two options: stay put, or go out there and make a difference.”

Cinco de Mayo 2015 was a typical, happy day for me. I was enjoying work and looking forward to celebrating the holiday, until I suddenly felt very weak and had to leave work. For the past few months, I had been experiencing intense night sweats and very itchy skin. Since I was 50 years old, I assumed my symptoms were due to pre-menopause. So this feeling of intense weakness took me by surprise. I managed to make it home from my office, and then my husband rushed me to the emergency room.

I reached a point where I was unable to walk or talk. Breathing had become difficult and even holding my phone was a challenge. I received blood transfusions and other IV treatments and was in the hospital for a week before I was able to leave on my own. That experience prompted me to find a hematology and oncology specialist to figure out what was really going on. Over the next year, I underwent numerous tests and various treatments as the doctors tried to understand what was happening to my body and how to fix it.

Looking for answers
In November 2016, more than a year after I was hospitalized on Cinco de Mayo, my doctor recommended a bone marrow biopsy. My condition wasn’t improving, and we were desperately looking for the root cause of my health issues.

When the test came back, it showed that I had a mutation in the JAK2 gene and had developed high-risk primary myelofibrosis (MF), a rare, chronic blood cancer. I had never heard of MF, and hearing the word “cancer” was terrifying, but at least I finally had an answer to what was wrong with me.

I had never heard of myelofibrosis (MF), but at least I finally had an answer.

Unfortunately, some patients wait years to learn they have MF, as they struggle to cope with the life-changing symptoms, endless tests, and fear of not knowing what they have. Thankfully for me, my diagnosis came much sooner, and I was able to talk to my doctors about options for living with this condition.

I learned that MF is part of a group of rare blood cancers called myeloproliferative neoplasms (MPNs). They also explained that my cancer was causing scarring in the bone marrow and disrupting my body’s normal production of blood cells, causing me to experience the pain, itching, and night sweats that had plagued me for over a year.

Managing my myelofibrosis
After my diagnosis, I made it a priority to learn as much as I could about MF so I could understand what was going on inside me. I had a wonderful team of doctors and a support system made up of friends and family that helped me come to terms with my condition and make a plan for managing the disease.

I was prescribed a medication called Jakafi® (ruxolitinib), a prescription medicine used to treat adults with certain types of MF. Jakafi works by keeping the production of blood cells under control and has helped to address many of my MF symptoms.

I’m very fortunate that I found a treatment that works for me, but I can only speak for my experience and I know that every patient with MF is unique. So my goal is to raise awareness of this disease and encourage other patients to go and see a doctor so they can discuss their concerns and find a management plan that’s right for them.

Advocating for myself and others
One way I have been able to take control of my condition is to become an advocate, not just for myself, but for the broader MF community. It’s been very important to me to have a strong voice when making decisions about my care, and I have tried to be a light to other people in similar situations. I share my story to not only raise awareness of my condition, but to inspire others with MF to talk to their doctors and to be advocates for themselves.

I’ve also found purpose through supporting the broader cancer community. I bake rum cakes and sell them to fund a 5K race that helps women pay for mammograms and I encourage healthy people to donate blood to help those in need.

I am fortunate to have a dedicated team of doctors to manage my care, to have found the right treatment for me, and to be surrounded by a great support system to help keep me on my feet, so I can be an advocate for others in need.

What I want people to understand about MF
I hope to help people understand my condition and how it has seriously impacted my life. I want people to know that even though I often look normal on the outside, something isn’t working on the inside. Through this awareness, I hope we can ensure more patients receive an accurate diagnosis and are empowered to go and speak to a doctor about their options.

Life with MF is filled with unexpected challenges and setbacks. But I am a fighter. I try to remember that life is beautiful and that every day is a new day. When my MF journey started, I had two options: stay put, or go out there and make a difference. I chose to make a difference. So even though I am living with cancer, I won’t let anything stop me.

Jakafi is a prescription medicine used to treat adults with polycythaemia 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.

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 diarrhoea; 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.


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