April is National Cancer Control Month, a time set aside to highlight the prevention and early detection of cancer. Last year, more than 1.7 million new cases of cancer were diagnosed in the U.S., and more than 609,000 people died of cancer-related causes, according to estimates from the National Cancer Institute. At the same time, the overall death rate from cancer has been decreasing. Declines in death rates for many cancers has led to an increase in the number of cancer survivors, who often have lasting complications from their treatment. At Seattle Cancer Care Alliance (SCCA), a Survivorship Clinic, support groups and social workers help people navigate life after cancer. One program in particular, SCCA's Long-Term Follow-Up Program (LTFU), supports bone marrow transplant recipients with lifelong medical check-ins and comprehensive monitoring of their health and well-being. Read on for a view into how Long-Term Follow-Up works:
Janet Camp was looking forward to returning home to her farm outside Spokane after receiving an umbilical cord blood transplant, but she was uncertain about the health risks that may await her. Just over three months earlier, the 64-year-old retired teacher had received a transplant at SCCA to treat her acute lymphoblastic leukemia. Now Camp had questions about how to maintain her health back at the wheat and cattle farm. Was it safe to mow the lawn if she wore protective gear? How long would she need to steer clear of the barn, avoiding the microbes that lurk in hay and soil? She wasn’t sure, but she knew who to ask: SCCA’s Long-Term Follow-Up Program (LTFU).
Camp’s transplant was coordinated by her care team at SCCA. The cord blood containing life-saving stem cells came from two babies, one in the U.S. and one in Europe, whose families had donated to public cord blood banks. Stem cells can be harvested from umbilical cord blood, bone marrow or peripheral blood. When stem cells are collected from a donor, it is called an allogeneic transplant. When the stem cells are from the patient themselves, it is called an autologous transplant.
After her transplant, Camp had stayed in Seattle to come to the clinic regularly for blood draws, bone marrow biopsies and other procedures that ensured she was on the road to health. As she prepared to head home, Camp attended an in-person group session that familiarized her with the next phase of care at SCCA, the LTFU.
The LTFU is a comprehensive post-transplant survivorship program unique to SCCA, which has performed more bone marrow transplants than any other transplant center in the world. It offers lifelong medical consultation and monitors patients’ health and well-being after transplant, including a clinic visit on their one-year transplant anniversary and more frequently as needed to manage post-transplant complications.
At the group session, Larissa Murphy, an LTFU telemedicine nurse, reviewed a long list of do’s and don’ts with about 20 patients and relatives. A few pointers: If you have pets, don’t clean up after them. Houseplants are fine, but you can’t water them or do anything to disturb the soil. When flying, ask if you can board first and take the time to wipe down your area, including the air vent. A year after transplant, survivors need to start the process of being revaccinated, which typically takes two years to complete. “It’s kind of like a celebration because it means, ‘Yay, I’m doing great. My immune system is back,’” says Murphy.
Camp learned that mowing the lawn, along with gardening and raking leaves, would be off-limits for a year post-transplant.
With her questions answered, Camp felt more confident about heading back to the farm. “After transplant, there are all these little things we have to think about,” she says. “I’m so grateful to have all this information and resources. I don’t feel like I’m out there alone.”
The LTFU began in the 1980s after the transplant unit realized it was fielding lots of clinical inquiries from primary care providers about transplant patients who were transitioning back to their care. The community physicians would call about data and specimen collection for research studies that continued after SCCA patients had returned to their care. But the physicians would also ask, “‘Can you help me take care of this complicated patient?’” says Mihkai Wickline, LTFU nursing supervisor.
In response, the LTFU launched a telemedicine component. Patients, their doctors and their family members can call the LTFU hotline on weekdays during business hours. The free lifetime service fields about 60 calls a week by registered nurses devoted to LTFU telemedicine care.
In addition to clinical care, the LTFU contributes significantly to transplant research. It tracks more than 6,000 transplant survivors, many of whom have been followed for decades. Patients fill out annual questionnaires about their health and any complications – everything from emotional well-being to chronic graft-versus-host disease, which affects more than half of allogeneic transplant recipients.
Each year, new questions are added. Patients reap the benefits of the data collected; they can compare their results and take the information to their doctors to help develop a treatment plan or call the LTFU telemedicine nurses. “We’ve started giving patients feedback, telling them this is how many patients are still suffering from fatigue and this is your score so they can see, ‘Oh, I’m not so bad,’ or, ‘Oh, I’m worse than the average,’” says Wickline.
The data generated from years of questionnaires has served as the basis for hundreds of published studies about the social, emotional, physical, sexual and cognitive aspects of survivorship.
“No one else has 30-plus years of data on all these survivors,” says Wickline. “Because we have studied these patients for decades, we’ve learned a great deal about how to take care of our patients.”