What is Myelofibrosis?

The month of August is a strange anniversary for me. It was the month I was diagnosed with cancer. But this year it is even more important; it has been 6 years since I was diagnosed. When I received my diagnoses, the average life expectancy was only 6 years.

My rare blood cancer is part of a group of cancers called myeloproliferative neoplasms. They cause your blood counts to be very elevated or your bone marrow to be suppressed. They can transform from one into another depending on the particular mutation that you have.

My doctors realized that something was wrong because my platelets were extremely high, around 1.5 million sometimes as high as 2.1 million. Most people have a range of around 150K - 400K. Initially, I was diagnosed with Essential thrombocythemia because of my high platelets. This eventually resulted in a bone marrow biopsy which led to a diagnosis of hyperproliferative myelofibrosis.

Myelofibrosis is when your bone marrow fills with scar tissue until you can no longer produce blood cells. There are less than 20k cases in the United States. While the prognosis is usually longer than other cancers, there aren’t many treatments. At this time, the only attempt at a cure is a stem cell transplant which frequently comes with a 50% mortality rate in the first 18 months.

Symptoms of Myeloproliferative Neoplasms

Not every patient has every symptom. For me some of my symptoms were fatigue, headaches and migraines, easy bruising, bleeding easily, and brain fog.

Other symptoms could include fever, itching, bone pain, night sweats, weight loss, abdominal pain, anemia, or infections. Learn More

While I am thankful to have knowledgeable doctors, some of my best information has come from FB groups of other patients and caregivers who are very familiar with this disease. While most patients are diagnosed at age 65 or older, I was diagnosed at age 38. That makes my prognosis a bit more fluid as well as trying to figure out the best short term and long term treatments.

But I am thankful to still be here on this anniversary, able to have spent more time with my kids and husband, to create more memories…