Dr. Eugene Chang was 25, recently engaged and halfway through a physical medicine and rehabilitation residency in Vancouver when he started feeling sick. Fatigue, dizziness and nausea took over his normally active lifestyle. Suddenly his bike to work was not so easy.
After a blood test, an abnormally high white blood cell count revealed the worst. He was diagnosed with leukemia, and his hematologist advised him to head home to Mississauga – this was going to take a while.
"It was a huge shock," says Dr. Chang. "At the time, I thought I could do chemotherapy and get right back to residency.
"I didn't have an appreciation for what this meant for my life."
Two days later, Dr. Chang's residency was paused and he was back in the GTA in the clinic of Dr. Jeff Lipton, oncologist at Princess Margaret Cancer Centre.
He needed a stem cell transplant, and being of Asian descent meant that his chances of finding a match were less than average. The good news was if they did find one, it wouldn't just suppress the leukemia. It would cure it.
Dr. Chang was placed on the list and went through a round of chemotherapy to keep the cancer at bay. He started to feel better before life threw him another curveball. The chemo had significantly suppressed his immune system and he developed a severe lung infection.
He was admitted to Credit Valley Hospital in Mississauga and was sent immediately to the Intensive Care Unit (ICU) for respiratory failure and pneumonia. They placed him in an induced coma.
"I remember feeling helpless. I woke up from the coma, ventilated, barely able to breath and extremely weak." he says. "That was a scary moment for me, and even scarier for my fiancé and family.
"The Olympics was on at that time, and I was watching from the hospital room and thinking 'how can I get strong enough to get home'. I felt like I was going to be in the hospital forever."
After a few weeks in the ICU with the support of oxygen tanks and physiotherapy, Dr. Chang was eventually discharged. Shortly after, he received some good news – there was a donor for him.
At age 26, he received a stem cell transplant. It successfully engrafted, and after four months under the care of Dr. Lipton and Dr. David Loach, oncologist with the Messner Allogeneic Stem Cell Transplant Program at the Princess Margaret, Dr. Chang finally went home.
"Once I recovered from there, I had a very forward-thinking attitude," says Dr. Chang. "I started to think about how I was going to get back to work.
"Dr. Lipton helped me plan my return, and the following year my wife and I made the trip back to Vancouver."
A past interest in rehabilitation medicine took on a new meaning in the last stages of his residency. Dr. Chang developed a strong desire to learn about rehabilitation for cancer patients and eventually achieved a fellowship in cancer rehabilitation at MD Anderson in Houston, Texas.
Now, Dr. Chang is a staff physician at UHN's Toronto Rehabilitation Institute, and works closely with the Messner Allogeneic Stem Cell Transplant Program, which was named for Dr. Hans Messner, the founding father of allogeneic transplantation at the Princess Margaret, shortly before his death last July.
"It's a different level of empathy I have for these patients," he says. "I root for them, and when they're struggling, I really feel it."
25 years of stem cell transplant advancements at the Princess Margaret
The Princess Margaret recently hit a big milestone – 3,000 patients transplanted through the Messner Allogeneic Stem Cell Transplant Program at the cancer centre.
For Dr. Lipton, that milestone marks 25 years of significant advancements in the field. Huge leaps in matching donors to recipients, moving patients away from transplant and towards effective drug therapies, and improving the chances of some cancer patients from 0 per cent to 50 per cent chance of survival.
One of the biggest advancements was the improvement of stem cell collection from the donor.
It used to be that you'd have to drill 50 to 100 holes in the pelvic bone to collect the amount of stem cells that you need. Now, with drug therapies that coax stem cells into the blood from the bone marrow, they can be collected through the blood through an intravenous (IV) line and a machine that separates and collects the stem cells from the blood.
In the early 2000s, the Princess Margaret led one of the largest peer-reviewed studies in the world proving that this method of extraction was safe, preferable from a donor perspective and even yielded better results in higher risk leukemias.
Dr. Lipton has been involved in 2,700 of those 3,000, and for him the improvements being made now are the most exciting.
Susan Clarke, Nurse Manager of the program's inpatient units, has been part of it for nearly 10 years, and has worked in many areas of healthcare. She describes the nursing care in the Allogeneic (allo) Bone Marrow Transplant units as "extraordinary and outstanding," requiring a special group of registered nurses who are finely tuned to their patients' slightest physical and emotional changes.
"Nurses walk alongside patients on their transplant journey, helping, comforting, guiding and cheerleading," she says.
"The needs of patients who undergo an allo stem cell transplant can be intense and labour-intensive," she points out. "Patients' conditions can change quickly and nurses have to be able to respond with their clinical expertise, technical skills, and compassion.
Susan goes on to describe how vulnerable and frightened the patients can be, as they recover in the protective isolation units for weeks after their stem cell transplant, contemplating a possible uncertain future.
"Patients' emotional needs are so profound," she says, "They are often anxious because they don't know whether the transplant will work or if they will develop complications.
"Nurses are key to helping patients and families manage all this, and getting through their treatment as smoothly as possible."
Under the leadership of Dr. Jonas Mattsson, the program focus is on not just providing a transplant, it's about the whole journey the patient goes through, before during and after transplant.
"We know that if a patient comes for transplant, and they crawl in bed and pull the covers up over their head, they will not do well," says Dr. Lipton. "We need to get them up, get them mobilized, help them to eat well and do things for themselves. That's how they'll do better."
Now the program works closely with cancer education, survivorship, supportive care and beyond to get the patients active, eating well and functioning independently.
Dr. Chang has been a part of this new era. Since his arrival at Toronto Rehab, the door has opened for more cross-collaboration between the cancer centre and rehabilitation for patients after stem cell transplant.
"Everyone has their own personal story, everyone wants to get back to something and contribute somehow," he says. "It's more than just making the cancer go away. It's about getting people back to their lives."
For Dr. Lipton, Dr. Chang represents what he wants for all his patients.
"It's not about just surviving," Dr. Lipton says. "It's about seeing my patients get on with these big life events – living normally."
The future of stem cell transplants at the Princess Margaret
When patients are active, eat better and maintain their integrity before and after transplant, outcomes improve. Dr. Jonas Mattsson was recruited as the Director of the Messner Allogeneic Transplant Program in 2018, and with him came a new vision for the program: think big picture. We need to empower patients in every aspect of their lives to prepare and recover from transplant.
The team has started to collaborate with ELLICSER: UHN’s Health, Wellness and Cancer Survivorship Centre, to bring the essentials back into the lives of patients throughout their journey. The hope is the future will hold fresh air, movement, better eating and home care where possible – tailored to each individual, with patients leading the charge.
Twenty five years of experience in stem cell transplant at the Karolinska University Hospital in Stockholm, Sweden taught Dr. Mattsson when patients can be at home, eat their own food, walk outdoors and be themselves, they thrive.
“We witnessed huge improvements when patients recovered at home. From that experience, we learned what works not only for survival, but for quality of life. Ultimately, patients have to survive – but to what end?”
“We are here to help – we are the coaches – but our patients do the running,” he says. “They take the lead in their care, and we need to make sure they have the tools to do so.”