The common denominator is the rare disease we are facing. Although the medications we receive may be similar, sometimes our body’s reactions are different. Despite the unconditional support and help from family and friends, our fight goes under the radar, due to its rarity. The aim of my story is to share my journey, raise awareness, and give hope.
Back in 2012, a random CT scan showed two pulmonary embolisms. Since I was asymptomatic, it was a big unwanted surprise. The pulmonologist sent me to perform a bunch of tests, few of them worthy of Dr. House’s case scenarios. Perhaps, blood clots don’t ring a bell in every doctor’s book; consequently, the hematology department was not on the list. Following the embolisms, the doctor prescribed me blood thinners, which arguably saved my life for three more years.
I started to experience a few strange symptoms; an unbearable itching after taking a hot shower, visual migraines, bone pain, lack of concentration, and extreme fatigue. Prior to those symptoms, I exercised almost daily, and I had an active lifestyle. It became almost impossible to exercise; symptoms worsen during the night when I experienced burning feelings in my arms and feet and bone pain. My sleep, along with my quality of life depreciated slowly but steadily. Furthermore, the stress and anxiety set in. The regular medical check-ups showed slightly elevated hematocrit and hemoglobin levels, but nothing else. I began to seriously question my mental state.
My blood test following the appointment with a rheumatologist showed elevated hematocrit and hemoglobin values. I was referred to a hematologist for further investigations. While awaiting the results for the JAK2 mutation, two phlebotomies were performed; it was such a relief. I was diagnosed with Polycythemia Vera in December 2015. It was both a shock and a relief, after three painful years. But the real challenge was just started; it was only the tip of the iceberg.
I started the therapy with hydroxyurea (Hydrea) but it didn’t work. Consequently, I was referred to a hematologist-oncologist with a high degree of clinical expertise in MPN’s. And such, I started therapy with PEGASYS (peginterferon alfa-2a).
Nowadays, as one can get information via the internet, I tried to become a competent patient. After a few dosage and frequency adjustments, the positive effects were obvious. In addition, it removed the itching and lessened bone pain symptoms.
Needless to say, it came with a price, flu-like and myalgia symptoms along with asthenia and headaches. I strongly believe that if I manage to build my armor and exercise daily, I will overcome the side effects. The proximity of a nearby gym helped me in my strategy. When the pandemic hit, I started exercising at home only. Meditation and visualization were strong allies along my journey. Always, in my visualization, interferon was the Special Forces fighting the JAK2 mutation.
After 5 1/2 years and 280 injections later precisely, JAK2 result came negative, from 57,3% at the beginning of the therapy. It was a big victory in a perpetual war.
Anecdotally, I kept the syringes in the pharmaceutical recycling containers.
I told my wife that I keep them until my JAK2 goes negative. I really believed it would happen. The fact that the Christmas tree was ready prompted me to take the picture.
The complete molecular response (CMR) before Christmas was the kindest gift of my life.
To stay motivated, I told my doctor that my JAK2 mutation would be negative when I’ll turn 60. Since I turned 60 in November, it was both a sweet coincidence and true. Dare to stay determined and foolish in your beliefs, it pays off.
Dear MPN traveler, I wanted to share my journey and give you hope on yours. Walk through life optimistically and positively, you’re not alone in your fight.
These represent first person accounts of real people living with Essential Thrombocythemia, Polycythemia Vera, and Myelofibrosis. It does not represent the views or opinions of anyone associated with MPN Research Foundation. Please consult your doctor before taking any action to manage your health.