Life with CML: From Diagnosis to Long-term Survival

Self-advocating and not being afraid to ask questions can make a difference.  

In February 2018, award-winning country singer/songwriter, Cadence Grace, was busy touring with her band and preparing for a personal trip to Nicaragua, when she decided to go for a routine physical. The next day her doctor called, telling her to cancel both. “She said I had leukemia but wasn’t sure which kind yet,” says Cadence. A bone marrow biopsy a few weeks later confirmed it was chronic myeloid leukemia (CML).

CML is a cancer of the blood and bone marrow which develops when the DNA of a stem cell in the bone marrow is damaged and the cell becomes leukemic and multiplies, reducing the number of healthy blood cells in the body.

People with CML are able to achieve remission with treatments that help stop the production of cancer cells or slow down their growth and spread.

For Cadence, the experience was not as linear. When the initial treatment didn’t work for her, she was referred to a specialist at Princess Margaret Hospital in Toronto. In April of 2019 she underwent a stem cell transplant, but a series of complications left her partially paralyzed and needing to learn to walk again – and had her in and out of hospital over the next two years.

“It’s been a pretty wild ride, feeling I was running out of options, and I had a hard time picturing myself here, but now that I am, life is pretty awesome,” says Cadence, who recently resumed her music career.

A key aspect of Cadence’s recovery was learning to advocate for herself. “Being proactive and educating myself on things like what tests I was having and what the results meant helped me be an active participant in my care,” says Cadence, who admits bringing up concerns with your doctor can be difficult to do. “Because they’re focused on treating the CML, I think sometimes it’s difficult for doctors to know how much it affects your day-to-day living and quality of life, but your doctor is not going to hate you for emphasizing your concerns or for asking questions. The more candid you are, more they can help you improve your situation,” says Cadence.

 

Communication and community are important

Communication and self-advocacy are strongly encouraged by the Canadian CML Network, a patient group founded by Lisa Machado in 2008 after she was diagnosed with CML. “It’s very important for patients to understand that they have options to improve their quality of life, so my job is to sit with them and help them to ask the right questions of their healthcare providers,” says Lisa.

It’s important to communicate openly with your healthcare provider – on everything from symptoms to emotional concerns. “Talking to your doctor can help you get to the bottom of things and give you a better sense of confidence and control,” says Lisa. “With CML we can work with a lot of these issues and patients can have a good quality of life despite having cancer. The mental toll it takes on a person can be challenging, especially if you keep it all to yourself,” she says.

CML patients can experience different things at different times in the journey. “When you’re first diagnosed you tend to have a lot of hope and take things day by day, but it can be a real blow later on to hear that your medications aren’t working, especially if you have that sense of running out of options,” says Lisa.

That’s why the Canadian CML Network is also a strong advocate for ongoing research. “Of course, we hope that research continues. The more research there is, the more options are potentially within reach for CML patients. While the community is grateful, our greatest hope is that ultimately, nobody has to live with CML.” says Lisa.

Visit https://cmlnetwork.ca to learn more about CML.

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