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One Patient’s Guide to Understanding and Navigating the CLL Journey

Margaret Barber and family

Every Chronic Lymphocytic Leukemia (CLL) journey may be unique but leaning on trusted resources and a strong support network remain critical to navigating the complexities of a diagnosis.

Margaret Barber was just 63 when she was diagnosed with Chronic Lymphocytic Leukemia (CLL). “I’d been athletic my whole life,” she says. She knew something was wrong, however, when she started experiencing frequent illnesses, nausea, and stomach issues: “My immune system just disappeared.” Thinking it could be the start of a gluten intolerance, Margaret visited her GP for routine bloodwork. The results came as a shock to the entire family. “Our lives fundamentally changed that day,” says Scott Russell, Margaret’s husband, “I walked into the doctor’s office with one life plan, and I walked out with a different one; not worse, but different.”


Understanding CLL

Over 150,000 Canadians are affected by blood cancer with someone diagnosed every 24 minutes. Chronic Lymphocytic Leukemia is a type of blood cancer manifesting in white blood cells called lymphocytes, which create antibodies and are an integral part of the immune system. Raymond Vles, Board Chair of CLL Canada and CLL patient himself explains, “for those with CLL, cancerous lymphocyte cells multiply in bone marrow, blood, and lymph nodes. They don’t act effectively within the immune system. As the disease progresses, these cancerous cells crowd out other important elements that are needed in blood.”

Raymond Vles

Board Chair, CLL Canada

Often referred to as a ‘slowly evolving disease’, one of the hallmark components of CLL is a ‘watchful waiting’ period; a duration of time where the disease is tracked and monitored until treatment becomes unavoidable. People diagnosed with CLL are commonly over the age of 50, with the risk of developing CLL increasing with age. Those with a family history or of Russian/European descent are at a slightly heightened risk, as are men. Thankfully, Vles notes that, since 2014, several new treatments have become available and have been shown to produce lasting remissions.

A rabbit hole

“CLL is like a slow fall down a rabbit hole,” Margaret explains, “It may sound like six years of waiting, but a lot happens over that time.” After having completed six months of chemotherapy treatments in February, Margaret is now three weeks out from completing the last part of her treatment protocol: “For so long our normal has been living with the disease during watchful waiting or treatment. Now we find out what it’s like when neither factor is in play.”

People don’t catch this in time. It’s a simple blood test. Go get it done.

CLL is a journey – one that impacts both the patient and their family. For Margaret’s daughter Celeigh, who was 27 when her mother was diagnosed, accessing mental health resources greatly expanded her capacity to support the family. “Any care you provide for loved ones will have a much stronger impact if you’ve been processing your own emotions with a professional.” A counselling therapist herself, she coordinated a variety of mindful, creative activities for the family to help them release stress, express their feelings, and build meaningful moments together. “CLL is a disease you can manage even though there is no cure,” Raymond emphasizes. As such, it’s important to seek credible resources and not hesitate to ask questions of your healthcare team. Every journey is unique and CLL Canada’s website hosts a comprehensive collection of information resources, organized by stage in the CLL journey.

For those who are concerned something feels off, Margaret says it best: “People don’t catch this in time. It’s a simple blood test. Go get it done.”

For more information on all stages of the CLL journey and life after diagnosis, visit the CLL Canada Information and Resource Centre at cllcanada.org/cll-information-and-resource-centre.


This initiative was supported by AbbVie Canada. The content was developed by MediaPlanet, and the supporter did not influence the final article or editorial themes with MediaPlanet.

1 https://cancer.ca/en/cancer-information/cancer-types/chronic-lymphocytic-leukemia-cll/what-is-chronic-lymphocytic-leukemia

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