how a routine prescription refill became a cancer diagnosis
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myelofibrosis (mf) mostly affects men and women over the age of 60, and is one of a group of three closely related progressive blood cancers called myeloproliferative neoplasms (mpns). getty
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a prescription refill for a sleep aid may well have saved carrie pratt’s life.
the executive assistant had recently moved to metro vancouver from the b.c. interior and didn’t have a local doctor. so she used a virtual health service that connected her to a vancouver physician who, before refilling the prescription, ordered a routine blood test.
“the doctor called the next day and said my blood platelet count was through the roof,” says pratt. “the normal range is 100,000 to 450,000 and mine was 850,000.” she was referred to a hematologist who did additional testing. those results showed pratt had a jak2 gene mutation, and she was told most people with the mutation have myelofibrosis (mf), a type of bone marrow cancer.
mf mostly affects men and women over the age of 60, and is one of a group of three closely related progressive blood cancers called myeloproliferative neoplasms (mpns). the other two are essential thrombocythemia (et), an elevation of platelets in the blood most affecting women over 50; and polycythemia vera (pv), an elevation of red blood cells that typically affects men over 60.
“if you get diagnosed with myelofibrosis, there is hope,” says carrie pratt. “researchers are doing so much work right now.” supplied
to confirm her diagnosis, pratt would have to undergo a bone marrow biopsy, where a needle is injected into the bone to extract a small sample of marrow — the soft, spongy tissue that produces blood cells. but like 30 per cent of those diagnosed, pratt had no symptoms, so she decided not to have the procedure.
“the doctor said to just assume i have it, but if nothing changes they won’t ever test me,” she says. “well, immediately afterward, i started to get pretty bad bone pain in my legs.”
pratt had the biopsy, which confirmed she had mf. when her vancouver doctor looked back at her previous blood work, he noted that as far back as 2012 her platelet count was in the 700,000 range.
“my other doctor completely missed it,” she says. “i know the pressure doctors are under, but i don’t know why it wasn’t flagged before.”
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fatigue, weight loss, night sweats
dr. shireen sirhan, assistant professor of oncology in the division of hematology at montreal’s jewish general hospital, describes myelofibrosis as when abnormal cells in the bone marrow produce chemicals called cytokines, which lead to fibrosis — or scarring — in the marrow.
“sometimes patients have low red cell counts [causing] anemia,” she says. “sometimes their white blood cells can be high or low. patients tend to feel symptoms of fatigue, weight loss or night sweats. they may also have an enlarged spleen.”
pratt had both night sweats and bone pain. the pain flares up if she changes locations, as it did when she moved from the interior of the province to the lower mainland.
“i didn’t know if it was the humidity or the barometric pressure, but i was in agony,” she says. “it feels like someone’s driven a stake into my legs. but it’s not constant, it doesn’t affect my work.”
sirhan says that because more routine blood tests are performed, the disease is being detected early.
“there was a study at the american society of hematology conference last year that showed that many of these mutations happen very early in life but we don’t know the cause,” she says.
research in this field has ‘exploded’
even though she’s mostly asymptomatic, pratt was prescribed ruxolitinib, a jak2 inhibitor that slows the production of platelets so her bones are not as fibrotic. her spleen is also regularly monitored to ensure it doesn’t get bigger, a sign that the cancer is progressing.
“since the jak 2 mutation has been identified, the research in this field has exploded,” says sirhan, noting that there are ongoing clinical trials for newer treatments. “the jak inhibitors made a huge difference for patients with symptoms and disease control, taking it from a rare disease with no treatments that made much of a difference, to lots of research to improve patient outcomes.”
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sirhan says stem cell transplants may offer a cure, but they come with their own set of risks and complications so only a minority of patients are referred — usually those with a higher risk of disease, who are younger and in good health, and who have a suitable donor.
alternative treatments and lifestyle choices
in addition to the conventional treatment, pratt is also trying supplements, particularly a type of mushroom called turkey tail (coriolus versicolor) — her brother manages a vitamin and supplement store with many clients with cancer who use it to slow tumour growth and boost their immune system.
“i’ve been on it for two months and my blood work keeps getting better and better,” she says pratt. “i’m not attributing it to that, but who knows?”
she also walks a lot, does yoga, limits alcohol consumption, and connects with mpn facebook groups for support. staying positive and avoiding stress is also important.
“i don’t think about it a lot,” she says. “i’ll occasionally have a momentary sense of panic, but then i think that none of us knows when we’re going. i could walk across the street and get hit by a car. if i had to get cancer i’m kind of glad i got this one because it seems like it could be pretty harmless if i don’t need a bone marrow transplant — because that sounds terrifying.”
cheryl petruk did not have the disease, but lived it intimately when her husband, eugene, was diagnosed in 1992 with et. in 2014, she formed the canadian mpn network, an advocacy group to support those living with the disease. then, in 2017, she founded the canadian mpn research foundation.
“it’s become a passion of mine,” says petruk. “i often asked myself throughout the journey with eugene, what am i supposed to do with all this knowledge, this information and connectivity? it became apparent that i was to use it for this community, to make people’s lives a better place.”
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petruk says that there is a lot of hope in the treatment of mpns. from ongoing canadian research projects and global connections with other research organizations, to a tracking tool app that helps patients and doctors track quality of life as well as well disease progression.
“we’re moving at lightspeed,” she says. “if you get diagnosed with this disease, there is hope. researchers are doing so much work right now.”
robin roberts is a vancouver-based writer.
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