"I have a fabulous, full life thanks to the treatment I received there, and my kids still have their mommy."
This comment from a bone-marrow transplant patient three years after her treatment is typical of the difference Fred Hutchinson Cancer Research Center has made in the lives of thousands of people.
Bone-marrow and stem-cell transplants at the center have rescued many from terminal illnesses such as leukemia. But the center's work with these patients doesn't end there.
The debilitating side effects of transplantation, ranging from infections to fatigue to short-term memory loss, can often impair a patient's quality of life for months and even years afterward.
It's the job of the center's Long-Term Follow-Up Program (LTFU)-which celebrates its 20th anniversary as a department this year-to help transplant patients cope with their compromised well-being during the long recovery process. The program also helps improve treatment in the long run by providing center researchers with data on post-transplant health. During the last two decades, LTFU has cared for thousands of patients.
The program has two branches. Clinical LTFU, directed by Dr. Mary Flowers of the Clinical Research Division, concentrates on patient-care issues, scheduling follow-up visits at the SCCA clinic one year after transplant, or as needed. A team of physicians, nurses and nurse practitioners manage post-transplant complications as they arise.
LTFU Research, directed by Dr. Paul Martin of the Clinical Research Division, collects lifetime data on patients starting from the time they are discharged after transplant.
"The staff of the two groups work independently, but we pass information back and forth continually," said Peggy Adams Myers, project coordinator for LTFU Research. "Sometimes a patient sends a question requiring a physician's answer when they respond to our questionnaire, and the research nurse contacts a clinician."
Graft-vs.-host disease-in which cells from the donor attack the patient's own cells-represents one of the greatest threats after transplant. Clinical LTFU staff members help patients and their physicians identify the symptoms of this complication, which can sometimes be severe.
"Graft-vs.-host disease typically occurs in allogeneic patients (those who receive stem cells or bone marrow from donors)," said Steve Johnson, Clinical LTFU project coordinator. "It typically starts about three months after the transplant, but can also develop months or years later. We provide consultation services to the patient's physician at home to help them recognize its onset."
In addition to the telephone-consultation service and evaluations provided by the Clinical group, LTFU Research staff send out annual questionnaires assessing patients' medical progress.
The surveys show that infections and other illnesses or complications from graft-vs.-host disease often plague bone-marrow transplant recipients. Quality-of-life issues may also emerge. Energy can be sapped and short-term memory can evaporate.
Beyond immediate care for patients, more than 30 years of information from about 4,650 transplant patients provides an invaluable resource on long-term transplant complications. In the early days of marrow transplantation at the center, medical teams began gathering follow-up information from patients through phone calls. In 1983, the LTFU department was formed to continue this method of follow-up. By 1989, the patient volume had increased to a point where follow-up by phone became impractical, and annual patient questionnaires were developed to collect the data. LTFU currently follows about 3,500 patients.
"The data is useful for any study where the researcher wants to know a long-term outcome of a treatment," Adams Myers said. "Some side effects of a drug treatment, for example, don't show up for several years."
"The results of any clinical trial have to be evaluated against some expectation, which can be gained by having a general sense of what has happened in the past," said Martin.
"We have learned that treatment is unsuccessful in about half of the patients who have a difficult case of chronic graft-vs.-host disease, when results are measured after one year," he said. "So in the future we might aim to decrease the failure rate from 50 percent to 30 percent, a reasonable goal that would be an important accomplishment."
Any such investigation depends on transplant recipients' willingness to return the completed questionnaires. Although time-consuming, the surveys can function almost as a support group for many transplant patients. LTFU staff members compile patient commentary and send the results to all surviving transplant patients.
In an effort to increase the flow of information back to patients, LTFU is currently partnering with the External Relations and Communications Department to develop a newsletter for former patients. This will allow the LTFU to share what they learn through the questionnaires with the patients.
The growing LTFU database-many of its numbers encoding success stories of bone-marrow transplantation in leukemia patients-represents hope for the future of transplantation research for clinicians and patients alike.
[Danielle Ippolito is a University of Washington graduate student in pharmacology.]
Dr. Jean Sanders has made a long-term commitment to children
Among the patients who will receive long-term follow-up care are children who undergo transplants at Fred Hutchinson's bone-marrow transplant clinic at the Seattle Cancer Care Alliance. Leukemia is the most common childhood cancer, accounting for nearly one-third of all pediatric cancers.
Since 1975, Dr. Jean Sanders has made it her life's work to follow the lives of children who have survived marrow transplantation to treat their cancers. The rigorous therapy, while raising the cure rates for many types of childhood cancer as high as 70 percent to 90 percent, often leaves long-term complications that must be monitored and treated.
"We follow-up patients for the entire range of post-transplant effects, whether it is impacts on secondary sex characteristics, neurocognitive effects, chronic graft-vs.-host disease or employment," Sanders said. "That's what makes our program unique; we do what we say we will do."
"As we transplant more and more patients with marrow from donors who are not identically matched siblings, we are seeing more chronic graft-vs.-host disease, and it lasts longer," Sanders said.
Currently, Sanders' Continuing Care Clinic at the Alliance treats 25 to 30 patients a month. In addition, Sanders also conducts a long-term follow-up outreach clinic twice a year at Deaconess Hospital in Spokane.
For her work, Sanders has received numerous awards and is annually named to best-doctors lists. But improving the lives of pediatric cancer survivors is what fuels her commitment to long-term care.