Trip to Buffalo for transplant came too late
The trunk of her silver Ford Taurus was packed with everything Sharon Shamblaw needed to get through the next three months, including a pile of stationery so she could write to her three kids, Amy Poehler’s biography, and a DVD of the Chicago Blackhawks’ greatest moments leading up to their Stanley Cup victory last year.
Shamblaw, 46, rolled up to Roswell Park Cancer Institute in Buffalo on Jan. 25, 2016, expecting to be admitted to the stem cell transplant ward the next morning for an intensive, life-saving treatment program for acute myeloid leukemia.
That was the plan. Instead, the morning before she was to be admitted, doctors discovered the cancer, which had been brought into remission with several rounds of chemotherapy, had returned. The transplant was off the table. By March 30, she had just two choices: die in a semi-private room at hospital or die at home. Last week, her family rolled a hospital bed into the room she shares with her husband of 27 years.
“I was so close,” Shamblaw said Monday from her home in St. Marys, Ont. “I believe I should be in Buffalo right now, getting ready to come home soon. I’m not ready to die.”
Shamblaw is the latest victim in the breakdown of an essential cancer care program in Ontario hospitals, the subject of an ongoing Toronto Star investigation.
Since the early 1990s, doctors had repeatedly warned the health ministry about this inevitable collision between inadequate resources and “unprecedented demand” for allogeneic stem-cell transplants, but the crisis went largely unaddressed. The health ministry responded last fall by approving more than $100 million (U.S.) to send hundreds of Ontario patients who would have died waiting for treatment in this province to hospitals in Buffalo, Cleveland and Detroit. It was supposed to be a short-term solution while hospitals got the funding to add more treatment beds and staff.
To date, only 19 patients have received an American transplant, and Shamblaw’s story sheds a little more light on why.
Because the stay-at-home mom’s cancer had returned — as shown by the blood work results she received the day she arrived at Roswell — the health ministry would not pay the tab. In her case, that was roughly $500,00o.
Cancer Care Ontario, the government agency responsible for overseeing this program, would not say how many of the 202 patients approved for out-of-country stem-cell transplants since last fall have relapsed before being admitted to hospital.
“We are unable to provide this number due to patient privacy,” spokesman Marko Perovic told the Star. When Shamblaw started chemotherapy treatment last August at Victoria Hospital in London, Ont., she expected to make a full recovery.
A month later, in mid-September, genetic test results showed she had an aggressive subtype of the cancer that would require a stem-cell transplant.
The search for a donor would take about three months. At the time, the family didn’t realize that Shamblaw was in danger of relapsing at any moment. They didn’t know that international standards demand that patients receive their transplant within three months of their diagnosis for their best chance of survival.
Shamblaw’s doctor, Anargyros Xenocostas, at London Health Sciences Centre, is a stem-cell transplanter, but his hospital can only provide transplants using donors related to the patient.
Princess Margaret Cancer Centre, Juravinski Hospital in Hamilton and the Ottawa Hospital are the only centres in the province equipped to perform allogeneic transplants on patients, which use stem cells from unrelated donors like the one Shamblaw had.
It’s a complicated procedure with a high risk of the donor cells attacking the patient’s body, leading to poten- tially fatal infections.
If the transplant is done during first remission, about 60 per cent of patients will survive with long-term, followup care, Xenocostas said.
All three Ontario centres had been pleading for extra government funds through internal memos and reports for more than a decade. While Princess Margaret had agreed to search for an unrelated donor for Shamblaw, they couldn’t perform the transplant, not any time soon.
It would be April or May, the family was told, before a doctor there could even see them for a consultation on the treatment. The centre had an eight-month waiting list for transplants.
Xenocostas made a direct plea to Buffalo for help.
All U.S. hospitals require that Ontario patients receiving a stem-cell transplant — essentially a new immune system — travel with a caregiver who can help administer medications and monitor for signs of infection.
Once patients are released from hospital after 30 days, they relocate to a hotel nearby, where the caregiver takes on the role of nurse for the next two to three months. Shamblaw’s eldest daughter, Amanda, a trained nurse, volunteered to take a break from her studies toward a PhD in clinical psychology at Queen’s University to be that person.
On Christmas Eve, when Dr. Xenocostas told the family the ministry had approved the transplant at Roswell, they prepared for her first consultation in Buffalo early in the new year.
They were ready to go with the exception of some diagnostic tests that had to be scheduled in Ontario, the results to be faxed to Roswell. Amanda said her mom received several calls from Buffalo in that time period — nearly 20 days — reiterating that they, too, were ready on their end, that they were just waiting for a cardiac assessment and pulmonary function test.
When Shamblaw got the all-clear to return to Roswell, it was too late.
Dr. Philip McCarthy, director of Roswell Park’s blood and marrow transplant centre, said other Ontario patients he had been expecting to treat never made it to the centre because their cancer had returned.
But for him, relapsed patients are not all a lost cause.
A database his hospital set up in 1997, which tracks outcomes of every transplant patient treated at the hospital, allows him to determine “within an hour” how successful a treatment might be for a new patient. The database provides the details he needs to make “reasonable decisions,” he said.
“We have to do things on the cutting edge,” McCarthy said. “We have to provide the best options for our patients and patients referred to us.”
A five-year study of patients at Roswell showed a 20 to 25-per-cent survival rate for those who had transplants while not in remission. The key, he said, is to act fast. “Once you relapse, you better do something quickly or that patient will have a high chance of dying.”
McCarthy said he could not comment specifically on Shamblaw’s case and whether he could have treated her successfully.
Amanda Shamblaw said her family was told by staff in Buffalo that had her mother been allowed to stay there, she would not be put in palliative care.
“We’re really stuck in that spot where we can’t do anything to help her and we’re just waiting for something to happen,” Larry Shamblaw said.
Cancer Care Ontario told the Star “it is considered experimental to perform transplants on patients that are not in remission.”
Dr. Eric Hoskins, Ontario’s minister of health and long-term care, told the Star in a statement that “more needs to be done” to repair the broken transplant programs.
In addition to $30 million that three Ontario hospitals will divide to increase the number of transplant beds, Hoskins said the ministry is now paying for a local caregiver to assist transplant patients in Buffalo and is exploring compensation for family members who are acting as caregivers.
“We’re also looking at whether there are ways to shorten the stay out-of-country to make this process easier on families,” Hoskins said.
Xenocostas tried a round of aggressive, experimental chemotherapy on Shamblaw when she returned to Ontario in the hope it might bring the cancer into remission and get her back to Buffalo.
The treatment, which required more than 40 days in hospital, led to a 10-day bladder infection that no pain medication could ease.
And it did not make a dent in the leukemic cells that were destroying her body.
She’s on a mix of antibiotics and fentanyl now. The morphine she had been given caused terrifying visions: a looming face in black and white, with lots of teeth.
Three nights in a row, she was “dreaming or hallucinating she was hurting other people so they would be closer to death, so the thing would take them instead of her,” Larry explained. The woman who never swears and has apologized for moving a smidge during painful bone marrow biopsies “was appalled with herself.”
Shamblaw has been told that death will come quickly now.
That she’ll just feel really tired all of a sudden. That she’ll go to sleep and won’t wake up.
“It’s hard sitting there planning your own funeral, but she’s done that,” Larry said. “Put me in a wall somewhere,” she told her husband. “Hopefully looking toward the sun.”