Editor’s Note: Patient Worthy is honored to share this patient story, provided to us by our friends at Heal Canada, and originally written for the National Post.
James, 73, is a partner in a chartered professional accounting firm. “I love what I do,” he says. “It’s not a job. All my clients are friends.” Outside the office, James employs his creativity in a different way — playing guitar and bass. “Music takes my stress away,” he says.
Focusing intently both at work and while learning a new riff allows James to take his mind off his health troubles. It all started with a mini-stroke in December 2024. “They took my blood and found out my blood platelets were really high,” says James. “The doctor explained that this likely meant I had a form of blood cancer.”
Doctors put James on a medication and performed a bone marrow biopsy, which confirmed his diagnosis: myelofibrosis (MF), a rare blood cancer that starts in the bone marrow.
A Rare Diagnosis
“Next thing I know, I’m at the stroke clinic one week and the cancer clinic the next week, juggling all these doctors’ appointments,” says James.
The diagnosis came as a shock, but James’ reaction to his diagnosis was pragmatic. “Everybody’s got something,” he says. “I’m not going to go home and start crying. You just get at it and deal with it.”
Separated from his wife and without a caregiver, James turned elsewhere for support. He contacted Heal Canada, an organization focused on patient advocacy through empowerment, engagement and education. “My friend started the non-profit after her husband died from MF,” says James. “She helped me ask the right questions and navigate this journey. She was a big help.”
Patient organizations play a vital role in empowering Canadians as they navigate the challenges of a blood cancer diagnosis. Alongside Heal Canada, the Canadian MPN Network stands out as a key resource, offering invaluable education, fostering connections to essential support services and acting as a bridge to the medical community for Canadians living with MF.
Understanding Myelofibrosis
“MF is a cancer where scar tissue forms in the bone marrow,” says Dr. Brian Leber, a clinical hematologist involved with the Juravinski Cancer Centre and professor emeritus at McMaster University. “Because of the scarring, the rest of the bone marrow doesn’t function as well.”
Depending on the stage of cancer at diagnosis, patients can present with low red blood cell counts, and either higher or lower-than-normal numbers of platelets and white blood cells.
“The bone marrow is where blood cells are most commonly made, but blood cell production can also take place in the liver and especially the spleen,” continues Dr. Leber. “When the bone marrow gets damaged, the spleen essentially takes over its function and becomes enlarged.”
Other key signs and symptoms of MF include fatigue, easy bruising or bleeding, feeling full quickly, night sweats and anemia.
Dr. Leber also notes that while a normal red blood cell lives for three to four months, with an enlarged spleen, that time can dwindle to just one month due to the spleen’s role in red blood cell clearance. “The function of the spleen also contributes to the anemia,” he says.
MF affects more than blood counts and spleen size — it also drives systemic inflammation. “People can have widespread, systemic side effects,” says Dr. Leber. “Some patients have the same degree of inflammation as somebody with severe untreated rheumatoid arthritis. There can be unintentional weight loss, bone pain and loss of appetite.”
MF is quite rare, making diagnosis challenging. While there’s no national MF registry, data suggests that the number of patients with MF in Canada might be around 2,000, according to Dr. Leber.
Living with Myelofibrosis
For James, navigating life with MF has meant making adjustments. Being a partner in his firm, he has no plans to quit working. “I’ll never retire,” he says. Days at the office look a little different now, however.
“The only real symptom I find now is being very tired,” says James. “I’m lucky to have a couch in my office, so I can take a nap when I need to.”
James is also anemic (usually defined as a hemoglobin value of less than 135 g/L in adult men), which can contribute to fatigue. “My hemoglobin got down to 90 g/L,” he explains,” and once it gets down to around 70 g/L, my doctors say I may need a blood transfusion.”
MF can be quite difficult to treat, especially the anemia associated with it. “Blood transfusions are very time-consuming, and some patients need them once a week or even more frequently,” says Dr. Leber. They can also cause complications, with excess iron affecting the organs and requiring additional treatment to remove it.
Dr. Leber recommends that patients and families who are navigating this rare disease take a proactive approach to their care. “It’s important to be attached to a hematologist who has a good interest in this condition,” he says. “There are some people who don’t need treatment at the beginning, so it’s important to make sure they’re with a practitioner who recognizes when they do need treatment.”
Despite the challenges of living with MF, James maintains a positive attitude. “I try to keep active with work and my music and enjoy going to plays and concerts,” he says. “I’m very fortunate. I’m not somebody who stops living when faced with a challenge.”
