'i kind of denied it,' says cll advocate of his diagnosis
5 minute read
raymond vles now serves as board chair of the advocacy group cll canada after his own diagnosis. supplied
stay up to date on this topic
when raymond vles was diagnosed in 2010 with chronic lymphocytic leukemia (cll), a cancer of the blood and bone marrow, his doctor told him not to worry, that it could be years before he required treatment. “so being good on denial, i kind of denied it,” says vles, who was 54 at the time he was diagnosed after a routine blood test.
he rode that denial until 2017, when he noticed visible lymph nodes on his neck, and started feeling increasingly tired. he went back to his doctor who, after running more tests, including those for hemoglobin and platelet counts, confirmed the slow-moving cancer had progressed. the following year vles underwent chemo-immunotherapy. chemotherapy uses drugs to kill or slow the growth of cancer cells, immunotherapy stimulates or restores the ability of the immune system to fight the cancer.
treatment, however, depends on the patient’s age, cancer stage, overall health and fitness as well as personal preferences and can include chemotherapy, radiation therapy, targeted drug therapy, surgery or supportive therapies such as antibiotics, antivirals, transfusions, or immunoglobulin infusions. life expectancy also depends on the patient’s age, gender, stage at diagnosis, whether the abnormal blood cells are spread out or clumped, and areas of lymphatic tissue affected.
“i was able to last eight years before being treated and since then i’ve been in remission,” says vles, who now serves as board chair of the advocacy group cll canada. “i have a 50 per cent chance that it won’t come back. everything seems to be going well so far, fingers and toes crossed.”
what is cll and who can be affected?
according to the mayo clinic, cll is a cancer of the blood and bone marrow, the spongy tissue inside bones where blood cells are made. because it’s “chronic”, it usually progresses more slowly than other types of leukemia. the term lymphocytic refers to the affected lymphocytes, or white blood cells, which help your body fight viruses, bacteria — and cancer.
advertisement
dr. versha banerji, a clinician scientist at cancercare manitoba and the cancercare manitoba research institute, says it’s difficult to know exactly how many canadians have cll because while registries keep track of the number of new cases, they don’t track prevalence over time.
“[in] manitoba we have a registry of patients. we have about 100 new cases per year and we follow a cohort of approximately 1,200 patients,” she says. “all of them don’t come to us and stay in the clinic; some are followed either by their primary caregivers or other medical practitioners and really only until they require treatment. the canadian cancer society says there are about 2,500 cases across canada in terms of incidence, but again the prevalence is likely very large but not accurately captured.”
banerji notes that while there is a two-to-one male predominance of the disease, the face of cll is changing. older brochures, for example, typically showed an older white man staring back at you.
“i have a large proportion of young women in my clinical practice,” she says. “i think that may be a result of people being more proactive about their health as a whole. my patient population is often self-employed [or] farmers who don’t have a lot of contact with the medical system. i think those patterns are starting to change, which will also skew the demographics.”
the cause and prognosis of cll
cll most commonly affects older, white, mostly male adults, some of whom have a close family member who had a blood or bone marrow cancer. some studies suggest exposure to certain herbicides and insecticides can also play a role.
part of banerji’s research focuses on figuring out the root cause of the blood cancer.
“we’ve worked with the mayo clinic [which has] been looking at the genes of some families that made them more susceptible,” she says. “but no one knows if that susceptibility is an inherent genetic predisposition versus an exposure that the family may have encountered that may make them more likely to develop cll.”
advertisement
she says other research is investigating the role of aging on all body functions — how it affects immunity, the immune system, hormonal balance.
“all of those things may be playing a role in changing the physiology of these blood cells . . . and not chronological age but actually the aging of our cells [which] may be influenced by other stressors, other parameters that are likely not clearly delineated but can be measured with some of the newer technologies that we have,” she says. “we’re at an era where we have a significant number of tools to try and understand why the disease arrives, how it originates and how it evolves. i’m hoping that, in the next 10 years or less, we might have more answers.”
although he knew nothing of the disease when he was diagnosed, vles says he later discovered that his maternal grandmother had it when she passed away in the 1980s, when there were nowhere near the treatments we have today.
he remains in remission, giving himself immunoglobulin infusions every two weeks to boost his depleted immune system — ever more critical during the pandemic.
“people are immune-compromised for all sorts of reasons and cll is one of them,” he says. “so if you see someone wearing a mask, it’s not because they’re making a political statement about covid. it’s probably because they’re immune compromised and they’re protecting themselves.”
‘better informed patients have better outcomes’
vles is now retired and devotes much of his time to educating others about the disease through cll canada.
“our mission is information and advocacy, because better informed patients have better outcomes, better quality of life, and they’re better able to navigate the challenges that come with the disease,” he says. “doctors don’t have a lot of time, and even less now than before the pandemic. you have to get the information yourself.”
advertisement
vles’ message to other patients is that cll is generally not an aggressive disease that requires immediate treatments, but when it comes time, there are a lot of effective options.
“there are a number of good treatments available, and more in the pipeline,” he says. “the situation has greatly improved in recent years. most people will die with their cll, not from their cll.”
banerji agrees that there are indeed a multitude of treatment options, many that can be personalized for each individual’s situation. she also encourages patients to ask their practitioners about the availability of clinical trials so they have access to some of the newer treatments, “and be part of improving the journey not just for yourself but for others.”
despite the good news about treatments, vles says he gets apprehensive when he sees his doctor for monitoring three times a year, wondering about his prognosis. still, what keeps him buoyed is his volunteer work.
“it has allowed me to do stuff that i enjoyed doing in the working world without all the problems of bosses and organizations and everything else,” he says. “i’ve tried to make lemonade with this lemon.”
robin roberts is a vancouver-based writer.
thank you for your support. if you liked this story, please send it to a friend. every share counts.
share story
