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'a lifelong challenge': living with a chronic blood cancer like cml changes everything

while chronic myeloid leukemia is no longer a death sentence for most patients, people like advocates amber noden and theresa harvey say that the side effects of medication have had huge impacts on their quality of life.

by maja begovic
published sep 30, 2022
read time 7 minute read
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read time 7 minute read
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chronic myeloid leukemia used to be a death sentence
amber noden has chronic myeloid leukemia (cml), a type of blood cancer where the body produces an excess of white blood cells. supplied
in 2017, amber noden had just gotten back from vacation when she noticed an infected ingrown hair under her arm. she went to a walk-in clinic where she was prescribed antibiotics, but the infection didn’t seem to get better. she began to have pain in her arm, along with fatigue, fevers and shortness of breath. after a couple of weeks, noden went to her family doctor who ordered blood work, which initially showed a high white blood cell count — a spike that usually occurs when the body is fighting off an infection — but a week later, noden’s subsequent lab results revealed that it had doubled. noden was referred to a hematologist, who, after a bone marrow biopsy, confirmed that she had chronic myeloid leukemia (cml), a type of blood cancer where the body produces an excess of white blood cells. it’s a slow progressing disease, and it normally affects people in middle age, although it can impact anyone, including children.
while cml is considered to be a rare form of blood cancer, scientific breakthroughs have made it possible for most patients to have a normal life expectancy — over the past several decades, those advances have led to newer and more effective treatment options that help people with cml successfully manage the life-long disease.

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compared to thirty years ago, targeted therapy, which is essentially daily oral medication, is now available to cml patients, but for some, a stem cell transplant or chemotherapy may be more suitable. biological therapy is now offered to those who are either not responding well to targeted therapy or are unable to tolerate its side effects — something that many patients struggle with over the course of their treatment. supportive therapy, which includes additional medication to help with various disease-related conditions, and cml clinical trials are also available to patients at various stages of the disease.

‘the first couple of months were very dark’

noden, while she is grateful to be in a position where she can manage the blood cancer with daily medication, she says that being diagnosed with a rare disease can be overwhelming. soon after she learned she had cml, she phoned her doctor’s office to ask for help in hopes of getting connected to another patient who has been through a similar experience, but her request for support went unanswered. noden did eventually find another patient on her own, someone who was eight years past their cml diagnosis. she says that peer support made a tremendous difference in helping her navigate her own blood cancer experience. it also made her feel less alone.
powered by
the leukemia & lymphoma society of canada (llsc)
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“with cml, it was not an easy process to find information and support,” says noden. “i had to research everything on my own. the first couple of months were very dark and the first year was most difficult – trying to find support while dealing with all the side effects was a lot.”
for a while, noden tried to go back to work for a few hours at a time three days a week, but on her way home, she would often be in tears because her body was struggling to keep up. on the days when she was working, noden would use a meal prep service because she didn’t have the energy to do anything else for the rest of the day, and she would use her weekends to rest and regenerate so that she could function during the work week. noden is no longer able to work and has since learned to listen to her body and accept its limitations.
“after work, i used to cry in my car because i was so emotionally, mentally and physically exhausted,” says noden. “fatigue has been an issue for me from day one.”
amber noden with her husband, jay. supplied
amber noden with her husband, jay. supplied

treatment-free remission is not for everyone

dr. dennis kim, staff hematologist at princess margaret cancer centre and professor of medicine at university of toronto, treats cml patients, including those who are in treatment-free remission. this emerging new therapy — in which patients who meet certain criteria can stop medication and not see any progression of disease — could be the next game-changer in how cml is treated. unfortunately, however, it’s only suitable for roughly 30 to 40 per cent of patients.
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“not many people can achieve treatment-free remission, but we know that it is doable,” says kim and suggests that those who have responded well to targeted therapy and patients who have also achieved adequate deep molecular response — a type of milestone that is associated with reduced disease progression at the molecular level — may be suitable candidates for treatment-free remission.
but as with any therapy, there are risks, and while treatment-free remission may sound like a cure, there is no way to predict whether it will be successful for a patient. however, those who are eligible for the emerging therapy are more than willing to explore it even without any positive outcome guarantees. some research suggests that disease recurrence may occur within the first six months while a patient is in treatment-free remission, in which case, they would need to restart treatment again.
the biggest advantage to treatment-free remission is that it can offer patients relief from the side effects of daily oral medication, which can include nausea and vomiting, hair loss, cardiac issues, and extreme fatigue. and then there is the financial reprieve: a national study estimated after a cancer diagnosis, 91 per cent of households suffer financially, either as a result of income loss, increased expenses or both.
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kim estimates that in his practice, about 20 per cent of cml patients experience side effects that interfere with daily functioning and impact their quality of life. he suggests that while a proper diet and exercise as well as reduced body weight may help to relieve these issues, as a last resort, he may consider switching the patient to another medication. sometimes, he says, it’s not the medication that’s to blame but rather a condition that has yet to be diagnosed.
“it’s difficult to quantify fatigue, but there may be an underlying health issue that may be contributing to the severe symptoms,” kim says.

‘i was told by a doctor to go and exercise’

for years, theresa harvey held a high-visibility leadership role in public service to which she attempted to return while on cml treatment, but because of the side effects she was experiencing, including extreme fatigue, she was left with no choice but to take on a less demanding, administrative role. eventually, she was forced to stop working altogether and retire early. not only did she lose her income, but she also lost a significant portion of her pension.
“some doctors will not acknowledge that there are repercussions to the medications that severely impact people,” says harvey. “i used to have severe pains in my hips, and i was told by a doctor to go out and exercise.”
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frustrated that her concerns were being dismissed, harvey made a decision to travel from ottawa to toronto where she was able to get connected to a care team that was willing to consider the impact the cml treatment was having on her quality of life. over time, harvey’s doctor worked with her to gradually reduce the dosage of her daily medication, and as of this spring, she is on 25 per cent of the original dosage. already, she has noticed a difference in her mood, personality and daily functioning.
“i’m closest to the person i used to be,” says harvey who is now involved in advocacy, and also runs a cml support group in ottawa. because cml is a rare blood cancer that globally affects one in 100,000 people — and not a prevalent disease such as breast cancer — support isn’t so readily available through major cancer centres. harvey believes that people living with cml deserve to have a forum where they can share their stories and learn and support one another. currently, the canadian cml network is the only organization in the country that is dedicated to supporting people affected by the disease.
harvey says that the majority who attend the support group are people who have difficulty managing their cml or those who are grappling with the life changes they have had to make after diagnosis, both of which, according to her, significantly impact a patient’s quality of life.
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“i feel less isolated, and hope other members feel the same, that i don’t have to explain the challenges i live with and get quizzical or unbelieving looks,” says harvey. “people who haven’t had cancer seem to think that if you live a certain time past diagnosis, that you must be over it or that it is a non-issue in your life. but, it’s a lifelong challenge. it doesn’t end.”
 
 maja begovic is a toronto-based writer.
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