surviving and thriving with cml: new drugs and patient-physician collaboration are key
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lisa machado (left) and dr. dennis kim (right) speak to the evolution of cml treatment and patient-centred care.
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lisa machado was diagnosed with chronic myeloid leukemia (cml) in 2008 after noticing a weird bruise that no one could seem to figure out. the unexplainable contusion wasn’t accompanied by any other symptoms, giving her very little to go on when speculating what it could be.
after she spent 13 hours at women’s college hospital in toronto, she was given her formal diagnosis.
“i was one of those people that were surprised,” she said. “with cml, especially in the early stages, there’s not a lot to tell, not a lot of clues that lead to it.”
at the time, lisa had a career as a financial writer and two young children, so hearing that she had cancer became a significant source of anxiety.
“i was having a really hard time with having a chronic cancer,” she said. “i didn’t know a lot about cancer other than it killed you.”
lisa noted that the doctors she worked with were great, but that because they were used to dealing with all types of cancer, including especially aggressive ones, they weren’t as available to her when it came to speaking about how she could live with chronic cancer.
“my oncologist, when i first started with him, he was like, ‘oh. you have the lucky cancer. why are you crying?”
her oncologist also told her she would take medication, that she would probably be fine, and sent her on her way.
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when she was diagnosed, there was only one medication available, and it was “just out of a clinical trial.”
the drug itself worked to manage cancer, but came with the well-established side effects of anticancer medications, including nausea, fatigue and skin issues.
“these medications came out and they were all about survival, so helping people live longer,” she said. “but without a lot of thought behind the impact of the side effects.”
because they were geared toward prolonging life, quality of life took a back seat. but when you live with a chronic disease, quality of life is a significant part of being able to function with cml.
building a cml community from the ground up
after receiving her diagnosis, lisa made a career change by founding the canadian cml network, an organization dedicated to helping individuals with cml access information about their disease, potential treatments and testing, as well as community support.
it was important for lisa at the time because she felt as though there was no place out there for her to meet other people who were on the same cml path.
she noted that, for her, it was a place to “meet other people and hear what their experiences are and talk a little bit about emotional health and mental health.”
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“and then it kind of grew,” she said. “everybody was sort of looking for the same kind of thing.”
lisa also wants her organization to be a part of the changing narrative that focuses on updating the doctor-patient relationships of yesteryear to modernize them into what they should be, for better outcomes for patients with both survival and quality of life.
“the conversation is sort of changing. there’s a lot more to successful treatment than just having good numbers. you really do have to be able to find joy somewhere, right?” she said. “as we get around the patient-centred care, that focus is going to change.”
longevity over quality of life in cml treatment
over the years, more and more medications for cml have been developed, giving people living with the chronic cancer more options to choose from.
lisa notes that now, there are “a bunch” of drugs that patients can choose from, depending on what works best for them.
“your doctor might say to you, ‘we have this one, but if you have cardiovascular issues, you probably don’t want that one, and we have this one, but if you don’t like fasting, well, you probably don’t want that one,’” she said. “you can kind of pick and choose, but we don’t have very open conversations about the implications of any of those medications.”
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the implications, which are a reduction in a person’s quality of life, are often held off regarding the treatment conversation, but when you have a cancer that can potentially offer a typical lifespan, taking a medication that puts a person down for the count for the rest of their lives isn’t ideal.
“we don’t train doctors to have to look more deeply into those sorts of things, right? they’re very scientific. they’re saving lives. this is what we do. that’s their goal, which of course is what we want as patients, but i think … in my perspective, i don’t think that they feel comfortable asking questions about sex, for example, or intimacy.”
lisa notes that patients may also often be unable to feel like they can open the conversation up to what they’re experiencing because of the medication and how it’s affecting their lives.
“i don’t want to be vomiting every day, even though i’m alive. there’s a lot of patients that i hear from who will say things like, ‘well, i don’t want to upset my doctor. i don’t want to make them think that i’m challenging their authority. i don’t want to risk my drug being taken away if i say that i have a problem with it,’” she said. “so, that’s the other side of it, too.”
but with newer advancements being made in the cml space, more and more people now have access to better drugs that can both improve their illness, as well as their quality of life.
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evolving cml treatment landscape that can help patients thrive
dr. dennis kim, a senior hematologist at princess margaret hospital, who works closely with cml patients, notes that the medications that worked in the past are no longer enough to address all the complexities of living with cml.
he notes that in the early 2000s, there was only one drug available that could help prolong life, but they could suffer through toxicity as a price for more years. but today, there are six drugs available, and in 98 per cent of cases, they may have a normal life expectancy.
asciminib, a relatively new drug designed to deliver the desired medical outcomes while improving tolerability, was recently approved by health canada. this allows newly diagnosed patients or those who cannot tolerate other available medications to have a chance at a good life with cml.
“you do not want your patient just to control their leukemia,” said dr. kim. “you want your patient to maintain their daily living functional activity, as well as they also can maintain their professional activity.”
he also says that it takes a lot of patient-physician collaboration for people with cml to get to that place of thriving over just surviving, and patients need to speak up about their experiences outside of just their bloodwork to open a dialogue that focuses on all aspects of cancer care.
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“you need to have a very close relationship with your patients, whether your patient is doing well with their current cml treatment or not,” said dr. kim. “you need that kind of feedback from your patient who is going to share that kind of information. nobody will share that information except your patient.”
according to lisa, it takes a lot of “guts and courage” from the patient’s side of things to open the door to a quality of life conversation because some may think, “well, at least i’m alive.”
“meanwhile, they can’t work, for example, or they can’t vacation, or they can’t go out for dinner,” she said.
lisa also explains that even with new drug advancements, patients need “so much more than medication thrown at them.” they need to speak on and be heard when it comes to quality of life, not only to improve health outcomes, but to improve medication adherence, too.
“it’s super important to have these conversations now because for each individual, it also improves outcomes,” she said. “there’s so much research out there that shows that if you’re communicating more about how the medication is affecting your life or how a disease is affecting your life with your doctor, then you’re more likely to take the medication.”
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she continued, “i’m really glad that we’re having this conversation now because i’ve seen so many patients over the years who have struggled so much, and had the discussion just been slightly different, it would have been much easier for them.”
connecting with community to help connect with your physician
according to lisa, connecting with the cml community is the way to approach learning how to improve quality of life because it will help patients learn new ways of discussing and sharing anxieties surrounding their disease while getting tips on how to broach the topic with their care team.
“i think that if patients connect with their communities, they can get a lot of ideas in terms of how not only to have that community, those conversations, but how to communicate,” she said. “it’s important.”
she continues, “this is your life, and you only get one, and it’s completely worth it to speak up. and i think it’s just changing the framework around the doctor as an authority figure and actually more of a partner in care.”
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