When Dr. Jan Storek started his career, bone marrow transplants were a new development that gave hope to leukemia patients around the world. “Until then, chemotherapy had provided some hope, but it turned out to be small,” says Storek, from his office at Calgary’s Health Sciences Centre. “That made me go into the field, because it’s very rewarding to see a patient who would otherwise have died, survive.”
Still, while bone marrow transplants have changed the way we treat leukemia for the better, the procedure is not without complications. With his “bench to bedside” manner, Storek has set out to tackle these side effects, including the biggest – graft versus host disease (GVHD).
Graft versus host disease is a complication that can occur after a stem cell or bone marrow transplant, when the immune cells from the bone marrow donor attack the recipient’s body. GVHD symptoms take the form of nausea, vomiting, diarrhea, jaundice, dry eyes and mouth, shortness of breath and skin tightness or rashes. About 10 per cent of patients die due to severe instances of GVHD, and about 25 per cent of patients will struggle with the disease long-term, meaning poor quality of life.
Storek and his research team have been working to find ways that would predict which patients are at risk of developing GVHD. By doing this, patients deemed at high risk would eventually be able to receive a prophylactic drug that would minimize their risk of developing the disease. “Prophylactics for these kinds of complications are possible but also toxic, so you don’t want to give it to everyone,” he notes.
Clicking through one of the presentations that he often gives on his research, Storek displays a series of colourful pie charts that outline what life is like for many leukemia patients after treatment. Only about 35 per cent of patients are “true” beneficiaries of a bone marrow transplant – meaning they live without complication after the procedure. About 20 per cent of patients die due to a relapse of the disease and about 10 per cent die from other causes. Alberta’s three-year survival rate for leukemia patients, at 50-75 per cent, is actually high compared to the rest of North America (25-55 per cent). “We are doing not bad, but we are still dissatisfied with the fact that only 35 per cent are true beneficiaries,” says Storek. He points out the slice of the pie that represents “alive and well” patients: “We want that part of the pie to get bigger.”
Storek grew up in Prague, Czech Republic, and has spent his career travelling between research institutions including the University of California, Los Angeles and the Fred Hutchinson Cancer Research Centre in Seattle, before heading to the University of Calgary. “He’s a doctor and a researcher, so he knows about both worlds,” says Rosy Dabas, a second-year PhD student with Storek. “If you go to him with a scientific or technical problem, he remembers a paper from 20 years ago or experiment from 15 years ago that can help. You are awe-struck all the time, when you have a meeting with him.”
Researchers know that to help prevent complications like GVHD, they’ll need to consider how donors are matched with the leukemia patients that need them. “The immune cells from a donor have both good and bad parts,” says Storek. “The good is that they act against leukemia, but the bad is that they also act against the rest of the body and can cause GVHD. If we can identify donors with low chances of GVHD, we will use them.”
Since March 2014, Storek and his team have been working on a clinical trial for a pre-emptive therapy that could, one day, be given to patients at risk of developing GVHD. A test developed in Storek lab is used to determine which patient is at a high risk of developing GVHD. The treatment itself will eventually be pre-emptive: “If you use it too late, when the disease is manifest, it doesn’t make a difference,” says Storek. Their results over the past year have been promising – none of the patients have died from GVHD, though there has been an increase in infections. “But if it continues to look as good as it looks now, the advantage of minimizing death and long-term suffering due to GVHD will outweigh the increase in infections,” says Storek.
He is motivated by the push to advance leukemia treatment: “There is really only a relatively-small fraction of patients who are true beneficiaries, because it’s a toxic procedure with so many significant complications,” Storek says. “It will not be a viable therapy 100 years from now, unless we minimize the complications.
“What has become disheartening for me is that there are a large number of long-term sufferers,” he says, of GVHD. “Some patients die from leukemia, but there are patients who wonder why they even agreed to go through the [bone marrow] transplant process if they knew were going to develop this complication.”
This empathy for patients comes from Storek’s unique blend of lab research and work with patients in a clinical setting. “He’s very compassionate towards the individuals behind this,” says Samantha England, a research technician in Storek’s lab. “He goes to clinic and sees those people, then comes to the lab and is working on their problems. I think that’s why he’s so successful. He’s in it for the right reasons and that’s very inspirational for us in the lab.” A typical day for Storek can take place anywhere – in the lab, at the University of Calgary or at the Tom Baker Cancer Centre. “Some days I am in the clinic, some days at the in-patient service, some days I write grants or go to student presentations to evaluate them,” he says.
When he’s not working, Storek is active in his church and often goes on charity trips abroad. He’s also very active in the outdoors and enjoys hiking and backpacking. He’s also a coach at the Rocky Mountain Jackrabbits Ski Club. “I enjoy the fun of leading kids into a love of the outdoors,” he says.
“You get the impression that he’s doing a really good job at a difficult balancing act,” says England. “In science there are so many details, it’s very specific and it changes fast, and it seems that he’s effortlessly abreast of the updates in the lab and can remember it all.”
Storek is, predictably, modest about his work ethic. “The success is not my success, but the success of the whole team,” he says. He has worked with collaborators in clinical research like Poonam Dharmani-Khan and Mamta Kantharia, and says that his students, lab technicians and the residents and nurses that he works with are imperative to his work. Part of his work includes communicating frequently with clinicians, so that they know he and his team are in need of specimens of blood and bone marrow from patients diagnosed with leukemia. “They are busy, so research is not on the top of their mind,” says Storek. “By educating them on what the research can mean, they understand and can remember to notify us about patients.”
England says it’s this part of the work that’s so unique. “When we get a blood sample it comes with a name on the label, and you know that someone on the other end is having an awful day and the work feels much more important,” she says. “You can see how it might help soon, in science terms at least.”
Asked and Answered
Right now I’m reading: Papers underlying my grant application.
My motto is: To trust in the Lord with all your heart, and do not lean on your own understanding.
My favourite place in the world is: There are too many! For example, I love any lake in the Rockies surrounded by larch trees.
My favourite food: Rum and raisin ice cream.
I’m happiest when: I can make someone happy.
Find Your Match: Around the world, 20 million people are registered as bone marrow donors. “Most are Caucasians,” says Dr. Jan Storek. “There is a desperate need for other ethnicities.”
You could be a match for someone out there looking for a bone marrow or stem cell transplant. Right now, fewer than 30 per cent of patients who need stem cell transplants will find a matched sibling in their family. Those who are interested can register for the OneMatch Stem Cell and Marrow Network, a process through Canadian Blood Services that connects donors with patients. OneMatch also belongs to an international network of registries, linking donors and patients around the world.