Mark Barrenechea, author and CEO/CTO of Waterloo, Ont.-based tech company OpenText, decided to fight AML using the same attitude he applies to being a computer guru: by learning everything he could.
Increased knowledge and technological advances have improved treatment and supportive care
Mark Barrenechea is 51, but the acute myeloid leukemia (AML) survivor is fond of telling people he recently celebrated his first birthday. One year ago this month, he received a stem cell transplant that saved his life.
"I should be dead today and I'm not," Barrenechea boldly states. He credits his new lease on life with advances in research and innovations across North America for helping patients with AML get back their lives.
A healthy guy who had never been admitted to a hospital before, Barrenechea's life changed dramatically one night in 2015 when he had to dial 911 because he couldn't walk from his bedroom to the bathroom.
"To go from a very active personal and professional life to being in an ambulance was a complete shock," says Barrenechea, author and CEO/CTO of Waterloo, Ont.-based tech company OpenText.
Barrenechea decided to fight AML using the same attitude he applies to being a computer guru: by learning everything he could. After he was diagnosed, Barrenechea set about assembling a roster of experts from coast to coast, his laptop open to look up new therapies, read about new studies and send e-mails to researchers.
Barrenechea, who divides his time between Waterloo and Berkeley, Calif., received treatment in the United States. In spite of complications, including "two gene mutations you don't want to have," he beat the odds and went into remission before participating in a stem cell study at Johns Hopkins University.
Barrenechea acknowledges he fought the disease from a position of privilege. "Unfortunately, economic factors can determine outcomes," he explains. "It shouldn't be this way and it needs to change, and I fight to change it."
That's why he is so passionate about moving research forward to find cures for blood cancers for all patients. This October, he will co-chair the Light The Night Walk in Toronto, which raises funds for the Leukemia and Lymphoma Society of Canada (LLSC). Joined by hundreds of his OpenText colleagues, Barrenechea will be among 6,000 people expected to gather at Nathan Phillips Square for the walk.
Awareness is nice, but research requires funding, Barrenechea asserts. His goal is to raise the dollars needed to support innovations that will ultimately drive a cure. "I walk as a survivor and to celebrate, but also to help raise money – not just drive awareness."
Game-changing approaches
In Edmonton, Dr. David Eisenstat, chair of Pediatric Hematology/Oncology at the University of Alberta and co-director of the Cancer Research Institute of Northern Alberta, has seen a lot of progress in a little time.
He says increased knowledge and technological advances have been improving treatment and supportive care for both children and adults with AML in recent years.
Traditionally, the goal of therapy has been to get patients into remission (so no leukemia cells can be seen under a microscope) and find a match for a bone marrow transplant.
But transplants can be high-risk — patients can develop severe infections — and may not be necessary for everyone. For one, the body can reject the foreign cells or develop Graft-versus-Host disease, often with debilitating acute and chronic symptoms. But recent advances in genetic testing of AML cells allow physicians to identify certain patients who might not need transplants.
"It's a game changer if you can get the same patient outcomes with standard therapy and not have to go through a transplant," Dr. Eisenstat says.
New tests are also more sensitive for finding leukemia cells in the blood and bone marrow. This information can more accurately identify patients who are in remission, guide treatment and intervention, and save lives.
In other areas of research, targeted therapies based on gene abnormalities in marrow or blood are now being tested in clinical trials. New scientific discoveries are helping overcome drug resistance, which is a continuing challenge for cancer therapy.
"In the future, we will not apply the same one-size-fits-all treatment," Dr. Eisenstat explains.
All of these advances will prove that AML is not a death sentence, he adds. "A person who is diagnosed with AML today has a 50 per cent to 60 per cent survival rate, compared with 20 per cent in 1985. There is a lot of work to do, but that's real progress."
A picture of health
River Wedlake is one patient who has benefitted from new advances in treatments for AML. At a robust 30 pounds, the newly minted one-year-old is a picture of health who has been walking since he was 10 months old.
Aside from a scar on his chest from a treatment line, River's mother Julie Wedlake says you would never know her son was born with leukemia —at odds of one in eight million. At just 11 days old, River started the first of four rounds of chemotherapy at London Health Sciences Centre.
More than five months later, River was ready to go home. Since then, Wedlake says he has the appetite of a horse and continues to thrive.
Fifteen years ago, the survival rate for children with leukemia was 25 per cent. Today, that number has jumped to 85 per cent.
While there were definitely dark days during River's treatment, Wedlake wants other families to know that with the support of other people and the health care community, they can endure like hers did.
"People need to have hope," she says. "You can make it through this and families can survive."
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