Braving the Storm: My Battle with Myelofibrosis and the Beacon of Clinical Trials

My journey began in Ottawa, Canada, where I lived a relatively normal life until a series of erratic symptoms like night sweats, itching, fatigue, and an enlarged spleen started to appear. These symptoms were sporadic at first, and I didn't pay much attention to them. But everything changed in February 2011 during a routine blood donation when I was informed that my platelet levels were too low for me to continue donating.

This unexpected news led me to consult my GP, who, fortunately, was familiar with myelofibrosis due to a personal connection. A subsequent ultrasound and further blood work confirmed my diagnosis, catapulting me into the world of rare diseases and their complex treatments.

Myelofibrosis is a type of blood cancer that falls under the category of chronic leukemia. It is a disease that affects the blood-forming tissues and leads to the scarring of the bone marrow. This scarring can disrupt the normal production of blood cells, leading to a variety of symptoms that vary from person to person. In my case, the disease was progressing at a rapid pace. Myelofibrosis is a complex condition that can manifest itself in different ways and at different rates. It is important to work closely with a medical professional to develop a treatment plan that is tailored to your specific needs.

Despite the grim prognosis, I was determined to fight. My quest led me to Princess Margaret Hospital in Toronto, where I was introduced to a clinical trial for a new drug called momelotinib (then known as CYT387). This trial was a glimmer of hope in what had been a bleak diagnosis. Initially, I was ineligible for other trials due to my low platelet count, but momelotinib's lower threshold allowed me to participate. Eagerly, I joined the trial, hopeful for any chance to regain control over my life.

The trial began with a phase one dosage determination, during which I received a double dose of momelotinib. This initial dosage caused some complications, but once adjusted, the drug significantly improved my symptoms. My spleen shrank, my energy levels rose, and the night sweats and itching ceased. For five years, I lived a relatively normal life, traveling to Toronto every three months to receive my medication.

However, the effectiveness of the drug began to wane after five years, and my symptoms started to return. By this time, Jakafi, another medication for myelofibrosis, had been approved, but my low platelet count made it an unviable option for me. Facing limited choices and a rapidly progressing disease, I made the difficult decision to undergo a bone marrow transplant in September 2017.

The transplant process was arduous, and complicated by pneumonia, Cytomegalovirus infection, and other challenges. But after eight months of struggle, my engraftment succeeded, and I began the slow process of recovery. Today, I am grateful to say that I have emerged from this ordeal with no significant graft versus host disease and a renewed appreciation for life.

Looking back, I am profoundly thankful for the clinical trial that gave me additional years of quality life, allowing me to meet five more grandchildren. The decision to participate in the trial was driven by my background as an electrical engineer, where I was accustomed to assessing probabilities and making calculated decisions. Despite the risks, the potential benefits of the trial outweighed the uncertainties for me.

Myelofibrosis and the subsequent transplant taught me about the fragility of life and the importance of hope. Clinical trials, like the one I participated in, are not just scientific endeavors; they are lifelines for patients like me, offering us a chance to fight back against daunting odds. I embarked on this journey with hope and determination, and though the path was fraught with challenges, it was a journey worth taking.

To others facing myelofibrosis or similar diagnoses, my message is clear: explore every option, consider clinical trials, and never underestimate the power of hope and scientific innovation. The road may be tough, but the fight is worth every step.
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