inspiring canadians to live better.

healthing leaf

inspiring canadians to live better.

healthing leaf
get healthing in your inbox with the morning checkup and weekender newsletter!
home / diseases & conditions / cancer / blood cancer

how anemia could signal a rare blood cancer

anemia is one of the most common and serious complications of myelofibrosis, a rare blood cancer where too many blood cells are produced in the bone marrow.

by karen hawthorne
published nov 21, 2024
read time 5 minute read
join the conversation
read time 5 minute read
join the conversation
a doctor may recommend a blood transfusion for those with severe anemia or related complications. now medications are seeing significant improvements that can replace the need for blood transfusions in severely anemic patients. getty images
iron deficiency symptoms can be severe or persistent fatigue, cold hands and feet, weakness, shortness of breath, a tingling or crawling feeling in the legs, or even tongue swelling or soreness. it’s a health concern that can be an emotional and physical drain on well-being. but many don’t realize that there’s a connection between iron deficiency, formally known as anemia, and blood cancer.
this is especially concerning when anemia is prevalent among women of reproduction age at 21.3 per cent in canada, according to the 2019 canadian health measures survey, the latest research available.
anemia is one of the most common and serious complications of myelofibrosis, in particular, which is a rare blood cancer where too many blood cells are produced in the bone marrow. this causes scar tissue to build up in the marrow, leading to a decrease in normal red blood cells, white blood cells and the production of platelets. what can happen is the spleen and liver enlarge to compensate by taking on the role of making more blood cells. people with myelofibrosis – an estimated 1,400 to 2,177 canadians are living with the disease – face poor overall survival, reduced quality of life and the need for frequent blood transfusions.

related stories

what it feels like: 'i will find ways to make cancer easier for people like myself’
rinat avitzur is a passionate advocate for awareness of myeloma and treatment research so the journey for patients will become a little easier over time.
rinat avitzur, centre, credits her husband and her daughters for being her support team. and when she needed a caregiver 24/7, her husband was always there for her.

blood cancer treatment becomes first to benefit from canada's drug agency fast-track program
canada’s drug agency's time-limited recommendation program is set to deliver its first breakthrough with the blood cancer treatment epkinly.
when the wait time can be anywhere from 12 to 24 months, those living with grave diseases like cancer may not have that kind of time.
story continues below
dr. vikas gupta, a hematologist with university health network in toronto and leading authority on anemia and blood cancer, says that he has focused his career on blood cancer because patients like those with myelofibrosis had nowhere to go until more recently. “we did not have any treatments available for these patients apart from the option of a bone marrow transplant, which was applicable to a very small proportion of patients.”
he says anemia-related symptoms are a huge problem for patients already under the duress of having an incurable blood cancer, and most patients with myelofibrosis will develop anemia as the disease progresses.
“anemia is one of the major symptoms in patients with myelofibrosis at the time of diagnosis of myelofibrosis, present in about 1/3 of the patients. however, within the first year after diagnosis 75 to 80 per cent of patients will develop anemia, so it is an important part of the solution for treating the disease.”
just because you’re not a female of reproductive age, doesn’t mean you’re not a risk. it is typically diagnosed in people between 50 and 80 years old but can occur at any age and often takes many years to develop. while gupta says knowledge and therapy of myelofibrosis has progressed in the last 15 to 20 years, the cause isn’t fully understood.
powered by
the leukemia & lymphoma society of canada (llsc)
story continues below
what is known is that the disease develops from overactive signaling in the jak, or janus kinase, pathway that regulates blood cell production and inflammation. the over-activity has been linked to a number of genetic mutations.
in other words, cells mutate and can disrupt blood cell production, but there are few certainties.
“it takes a very long time for these mutations to turn into disease. if someone is found to have this mutation at a very low level, it’s not necessary that everybody will develop the disease, but there’s a high risk they will.”
how would you know if you had a problematic mutation?
you might experience symptoms like fatigue and weakness related to anemia, or symptoms related to an enlarged spleen where you have abdominal pain. you can also have fever, night sweats and weight loss. but here’s the thing: many times patients are completely asymptomatic, gupta explains.
a blood test would show abnormalities, but imaging and a bone marrow examination would lead to a diagnosis – making those regular checkups with a doctor key to early diagnosis and better outcomes for patients.
cheryl petruk, ceo of heal canada patient advocacy non-profit, lost her husband eugene to myelofibrosis in 2018 when he was 60 years old. he had lived for 19 years with essential thrombocythemia, a rare blood disorder where there are too many platelets in the blood, but it had progressed and developed into myelofibrosis. “it is exactly the opposite of being too many platelets in your blood. now your bone marrow has become fibrotic. it is not producing the right blood cells and your spleen enlarges because it’s trying to do a job that your bone marrow is not able to do.” the diagnosis came in 2010 and petruk went on to learn that her husband had “an incurable blood cancer with a shelf life of five to seven years.”
story continues below
his spleen was the size of a cfl football, she says, and he experienced fatigue and bone pain.
“there’s just a host of physiological symptoms that one goes through and they can be very debilitating, but probably fatigue is the biggest, not having energy because your red blood cells are not being born in your bone marrow to give you the oxygen you need. in the late stages he developed pulmonary hypertension, so he was oxygen dependent.”
and to manage his anemia, he became dependent on blood transfusions since 2010 with one transfusion a year at first. as his disease progressed, by 2017 and 2018, he was transfusion-dependent every 10 days. “he was more like an 80 year old,” petruk says of his deteriorating final days.
now medications are seeing significant improvements that can replace the need for blood transfusions in severely anemic patients. gupta talks about the discovery of the jak2 mutation in late 2004 that sparked growing interest in developing a group of drugs called jak inhibitor therapy for inflammatory and hematological conditions. the first generation was approved by health canada in 2012. now there are three jak inhibitor drugs for canadians with myelofibrosis, with ojjaara (momelotinib) approved in november 2024 as a breakthrough for patients because it treats both the anemia and other symptoms of the cancer. some patients with anemia couldn’t tolerate jak inhibitors because it didn’t address their anemia – but now there’s another option for them, gupta says. his team participated in clinical trials for ojjaara, which is an oral medication taken once daily.
story continues below
“for many patients, their anemia improves on ojjaara. since anemia is a prominent symptom in patients with myelofibrosis, that’s why availability of ojjaara is so important. this drug addresses all sets of symptoms.”
for petruk, she’s happy to see a drug approved that can improve quality of life for patients. her husband may have survived longer had the medication come sooner. he was on one of the first jak inhibitors in 2016.
“unfortunately, when it became evident that that drug had stopped working for him, he couldn’t go on any clinical trials because there’s inclusion criteria in clinical trials. and he had developed hepatitis antibodies,” petruk says. “so there was nothing else. he had a consult for a stem cell transplant and they found a match, but they only gave him 10 per cent success.”
her advocacy work gives her a sense of purpose that has kept her going. “it keeps his legacy alive. i’m doing it because i couldn’t help him. but hopefully i can help others.”
karen hawthorne
karen hawthorne

karen hawthorne worked for six years as a digital editor for the national post, contributing articles on health, business, culture and travel for affiliated newspapers across canada. she now writes from her home office in toronto and takes breaks to bounce with her son on the backyard trampoline and walk bingo, her bull terrier.

read more about the author

comments

postmedia is committed to maintaining a lively but civil forum for discussion and encourage all readers to share their views on our articles. comments may take up to an hour for moderation before appearing on the site. we ask you to keep your comments relevant and respectful. we have enabled email notifications—you will now receive an email if you receive a reply to your comment, there is an update to a comment thread you follow or if a user you follow comments. visit our community guidelines for more information and details on how to adjust your email settings.

you may also like
doctor during consultation held in his hand and shows patient laboratory tube with blood. counseling of transfusion, blood and hematologic diseases and pathology like anemias, cell cancer, hemophilia
blood cancer in canada: stats, impact and resources 
black businessman donating blood for people in need in bright hospital. female nurse with tablet computer coming in to check progress and well-being of donor. donation for heart surgery patients.
blood cancer
rinat avitzur posing for a photo with her family of three daughters and husband.
what it feels like: 'i will find ways to make cancer easier for people like myself’
frustrated woman sits in a hospital corridor, the room is light and clean
blood cancer treatment becomes first to benefit from canada's drug agency fast-track program
juanita and hailey rodenhiser posing for a picture. mother and daughter.
how i care for leukemia: 'i’ve become stronger in standing up' for my family
you may also like
doctor during consultation held in his hand and shows patient laboratory tube with blood. counseling of transfusion, blood and hematologic diseases and pathology like anemias, cell cancer, hemophilia
blood cancer in canada: stats, impact and resources 
black businessman donating blood for people in need in bright hospital. female nurse with tablet computer coming in to check progress and well-being of donor. donation for heart surgery patients.
blood cancer
rinat avitzur posing for a photo with her family of three daughters and husband.
what it feels like: 'i will find ways to make cancer easier for people like myself’
frustrated woman sits in a hospital corridor, the room is light and clean
blood cancer treatment becomes first to benefit from canada's drug agency fast-track program
you may also like
doctor during consultation held in his hand and shows patient laboratory tube with blood. counseling of transfusion, blood and hematologic diseases and pathology like anemias, cell cancer, hemophilia
blood cancer in canada: stats, impact and resources 
black businessman donating blood for people in need in bright hospital. female nurse with tablet computer coming in to check progress and well-being of donor. donation for heart surgery patients.
blood cancer