Patients who receive a stem cell transplant to treat leukemia or lymphoma can recover fully from the difficult treatment -- but it could take them several years, according to a study published in the Journal of the American Medical Association (Vol. 291, No.19: 2335-2343).

The finding should give patients, their families, and their doctors a better idea of what to expect after treatment, said lead author Karen Syrjala, PhD, of the Fred Hutchinson Cancer Research Center in Seattle.

"Routinely what we've told patients is that by 1 year they'd be recovered and they'd be back to work and feeling fine," she said. "We've always known that there were some patients who took longer. What came as a surprise is that it's more the norm that it took longer, rather than the exception."

Stem cell transplant is an aggressive treatment generally used when standard therapies fail; people who need it face a real possibility of dying, Syrjala said. In addition, the procedure can have serious physical side effects like repeated infections, lung problems, osteoporosis, and rejection of the transplanted cells (if they come from a donor and not the patient himself).

Syrjala and her colleagues followed 319 people who received a stem cell transplant to treat leukemia or lymphoma, tracking their physical and emotional recovery for 5 years.

"The good news is that people who go through transplants do extremely well in the long term," said Syrjala. "Even the people who come in with very physically and medically difficult situations do extremely well in the long run. It just takes a little longer to get there."

For instance, 1 year after getting the stem cell transplant, fewer than half of the people who had worked before treatment were back at their jobs. By 5 years out, however, 84% were working again. Likewise, only 19% of patients reported complete emotional and physical recovery 1 year after treatment. Five years later, though, 63% did.

For most people, the emotional impact of the stem cell transplant was more difficult to overcome than the physical effects. That's not surprising, Syrjala said, given the upheaval that can surround this type of treatment.

One year after the treatment, 79% of patients still reported worrying about relapse, or side effects like nausea and vomiting, or being a burden to other people. Three years after treatment, 42% of patients still felt distressed; the number decreased to 13% after 5 years. Patients who had never been through chemotherapy before the stem cell transplant were more likely to be upset by their treatment over the long term, as were patients who had poor support networks.

Most patients had recovered physically by the 1-year mark. About 20% still reported limitations after 3 and 5 years. Patients who were depressed were more likely to have a long physical recovery period.

The purpose of the study was not to frighten patients who are in need of a stem cell transplant, Syrjala said, but to give them more realistic expectations about treatment.

"People need to be reassured that this [long recovery] is normal and part of the process, and plan accordingly," she said.

Furthermore, doctors can take steps to help patients recover more quickly. For instance, keeping patients active before and during treatment can help them maintain or regain their physical strength more quickly, Syrjala said. Treating depression can also have a big impact on physical and emotional recovery time.

Transplant patients who are having difficulty getting their lives back on track should talk to their doctor about their specific problems, Syrjala said. They may need to be referred to a rehabilitation specialist who can evaluate their problems and develop a plan for treatment.