Regaining balance and restoring calm following a myelofibrosis diagnosis

“At 43 years old, any cancer diagnosis is devastating,” Kristen says. “It’s a slow-growing cancer, but it’s still cancer. After some time and research, though, I came to see that, even though this is a serious disease, I was probably going to live a pretty normal life with a normal life expectancy.”

PV belongs to a class of diseases known as myeloproliferative neoplasms, or MPNs. With PV, one’s bone marrow goes into overdrive, producing far more blood cells than the body can handle. In the world of MPNs, PV and essential thrombocythemia (ET) are considered to be less acute and easier to manage in comparison. There is, however, a third type of MPN called myelofibrosis (MF),which is characterized by often-aggressive scarring of the bone marrow. When the disease transforms in this way, as it did for Kristen in 2023 (seven years later), things get a lot more serious.

An unexpected diagnosis, an uncertain future

MF is life-threatening and is typically observed in those over the age of 65. However, Kristen’s hematologist oncologist, Hudson Regional Cancer Program’s Dr. Rouslan Kotchetkov, notes that our understanding of who can be impacted by MF is changing. “This is typically a disease of the elderly, certainly,” he says. “But I’ve diagnosed patients in their late twenties, thirties, forties, and fifties, like Kristen.” When Dr. Kotchetkov noticed that Kristen’s spleen had become enlarged — a telltale sign of MF — she was barely 48 years old. Her two children, a boy named Kevin and a girl named Dani, were still growing up. This time things felt different.

“It was a complete shock,” Kristen says. “I immediately started to worry about what the future held. My kids were a huge factor in how I thought about it. I wanted to be around for them for a very long time. I wanted to see them grow and to be active and involved in their lives long-term. It was emotionally over whelming to imagine that I might not be there for those things.”

Kristen leaned heavily on the support of her spiritual beliefs, her husband Chris, whom she calls her “voice of reason” and her “steadying presence,” and her care team. Even with such a strong support network, though, Kristen required additional resources to navigate the unknowns of MF — resources that can only be provided by those with lived experience. Her search for this missing puzzle piece led Kristen to the Canadian MPN Network.

‍Tapping in to the power of community

Enter past-executive director of the Canadian MPN Network and founder of Heal Canada, Cheryl Petruk, whose late husband Eugene was diagnosed with ET in 1991. Eugene’s disease eventually progressed to MF in 2010, long before modern research and innovation had transformed the MPN treatment landscape.

When Eugene’s disease progressed, he became dependent on regular red blood cell transfusions to combat the anemia all too often brought on by the disease. He required increasing levels of care from Cheryl until his eventual passing in 2018. “After Eugene’s journey ended, it never really occurred to me to walk away from our community,” Cheryl says. “My grandmother was a very wise woman and she always said that if you have skills or knowledge and they die with you, it’s a waste to humanity. I took that to heart and set out to keep Eugene’s legacy alive by helping others.” 

Cheryl has since dedicated much of her personal and professional life to ensuring that the outlook for Canadians impacted by MF is much brighter. In 2018, Cheryl founded Heal Canada, a non-profit that provides education, advocacy, research support, and community connection to Canadians affected by blood cancer.

For Kristen and others, being able to interact with the Canadian MPN community provides a sense of normalcy — a safe harbour where information can be shared, experiences validated, and anxieties alleviated. “A lot of what you find on Google can really terrify you,” says Kristen. “That’s why it’s so important to be able to lean on, and learn from, other patients and experts. Information is absolutely power when it comes to living with a rare condition like MF —especially when it comes to topics like complementary therapies and treatment decisions.”

A seismic shift in how MF is treated

Fortunately, sizeable advancements have been made since Eugene’s passing when it comes to researching how to effectively treat MF, as well as other related conditions that often present hand in hand.

With MF research moving so quickly, Kristen and Dr. Kotchetkov agree that clear, open discourse regarding symptom management and one’s overall quality of life should always play a key role in shaping the creation, and iteration, of a treatment plan that’s as unique as the patient themselves. “How we treat MF has evolved significantly, even in the 12 years since I began practising,” says Dr. Kotchetkov. “A lot of advancement has happened recently in the development of novel targeted therapies that address unmet needs. And each time we get new treatment options and access pathways are created, overall medical outcomes improve.” 

Thankfully, in addition to Heal Canada, a number of advocacy groups including the Canadian MPN Network and the Leukemia & Lymphoma Society of Canada (LLSC) are working tirelessly to ensure that Canadians impacted by rare blood cancers are able to access innovative medicines as quickly as possible. 

For the MF community at large, this not only brings confidence in the science behind new therapies and one’s ability to gain access to them, but a belief that it’s possible to live well with this once-feared disease. “Patients aren’t asking as much anymore whether they’ll see tomorrow,”says Cheryl. “They’re asking what they can do to make tomorrow the best it can be.”

‍Paying it forward‍

As for Kristen, her sights are very much set on the future. “I anticipate still being a very present parent for quite a while yet,” she says. “But I’m also very focused on living my best life, on doing all the things I’ve always wanted to do. I don’t sweat the small stuff anymore. Chris and I, we’re travelling and enjoying our day-to-day lives. But I’m also always taking care of my body and my mind. I do yoga just about every day. I meditate. I get massages. I go to the gym. I try to eat well. I tell myself not to look too far ahead, but I plan to be here for a really long time.”

Kristen has also started to tap into her training as a social worker — the career that she stepped away from due, in part, to her diagnosis — to give back to the community that she holds so dear. “I’ve really enjoyed talking to other patients, just sharing what I’ve done and what I’ve learned along the way,” she says. “It takes me back and flexes those social work skills a little bit. It really works both ways. You’re able to receive the support, but then give it back to others when they need it. I really enjoy that part.”

Looking back, Kristen remains thankful that she acted quickly and advocated for prompt blood testing and access to MPN specialists, and she encourages others to do the same if they feel that something isn’t quite right.

Now, nearly eight years since her initial diagnosis, Kristen prefers to look forward.