TUESDAY, May 18 (HealthDayNews) -- People who undergo stem cell transplantation for leukemia or lymphoma need a good three to five years to achieve a full recovery, a new study concludes. The finding, which appears in the May 19 issue of the Journal of the American Medical Association, represents a departure from traditional notions of recovery from such a serious illness. "What we have routinely told patients is that they should expect their recovery to take a year, then you can go back to work, you can socialize, be in crowds. Basically we consider you to be medically recovered," said Karen Syrjala, lead author of the study and director of biobehavioral sciences at the Fred Hutchinson Cancer Research Center in Seattle. But, she added, "medical recovery does not cover the functioning and the emotional recovery and that really is a process that continues to evolve for people over three to five years." This definition of a longer recovery period may not surprise people who are experienced in caring for leukemia or lymphoma patients who undergo stem cell transplant therapy. But it probably will be instructive for family-care physicians, internists and pediatricians who may be caring for these people as they recover, Syrjala said. Dr. Marshall Lichtman is executive vice president of research and medical programs of the Leukemia & Lymphoma Society. He said the new study was an "effort to quantify and better define what life is like after a stem cell transplant, in an effort to emphasize the fact that for those patients fortunate enough to be cured, there are still many ongoing problems that many of them have. "If we're going to give patients the best care, we have to be aware of these things and provide services that will help them to either recover from them or function as well as they possibly can," he said. Hematopoietic cell transplantation (typically cells from bone marrow) is used in a relatively small proportion of all patients who get diagnosed with leukemia or lymphoma. But the cumulative number of people who have undergone the procedure is large, Lichtman said. About 45,000 transplants are done worldwide each year and, currently, there are about 100,000 survivors, according to Syrjala. The study authors looked at 319 adults who had had hematopoietic cell transplantation for either lymphoma or leukemia. There were 99 long-term survivors who did not have a recurrence, 94 of whom completed a five-year follow-up. By the end of one year, only 19 percent of participants had recovered on all the "outcomes," including returning to work and recovering from any depression they may have suffered. By the end of five years, however, 84 percent had returned to full-time work. Almost one quarter (22 percent) of the patients had symptoms of clinical depression at some point during their treatment or recovery, and another 31 percent experienced mild depressive symptoms, the study found. "For most patients, there are some problems ranging from minor to major and the idea is to make sure that there are appropriate services available to the patient through the first year and even beyond," Lichtman said. One of the problems, he added, is that many patients don't have transplant centers and related support services in their home community. Syrjala pointed to three areas of recovery that might benefit from enhanced services. The first involves depression. "If people enter [stem cell] treatment with depression or become depressed along the way, we need to be paying attention, we need to diagnose that when it happens and we need to treat it because it's going to have long-term consequences," she said. There also needs to be attention focused on the physical limitations confronting these patients. At the same time, activity and exercise, not bed rest, are needed to maintain muscle strength and stamina, she said. Finally, people who have undergone a rigorous treatment such as stem cell transplantation need to have social support in the years that follow. But as Syrjala pointed out, it is not just leukemia and lymphoma survivors who have long recovery periods and need extra support. "The problems that transplant recipients complain about are no different from what other people who get high-dose treatment would have problems with," she said. "One of the things we really want to do is remind physicians but also patients and families to help them be realistic about expectations and really give some respect to themselves for the effort involved in going through this process. People tend to want to say it's over, let's move on. We really want to encourage people to recognize the process of recovery and really respect what they've been through, body and mind." More information The Leukemia & Lymphoma Society has more information on both diseases. The National Marrow Donor Program has more on stem cell transplantation.
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