Day 100 is a milestone that many stem cell transplant recipients circle boldly on their calendars as the turning point in their recovery. That’s when the greatest risk for critical side effects is past and when the stem cells have engrafted and begun making new blood cells.
It’s also the day that MD Anderson Advanced Practice Nurse Karen Stolar contacts recipients and their families about the Stem Cell Transplant Survivorship Clinic.
Two years ago, Stolar helped establish the program to address the needs of patients who receive complex and long-term treatment for their leukemia, myeloma or lymphoma.
Currently, she is following 300 to 400 transplant recipients and will work with them for as long as two years. However, many are reluctant to call themselves “survivors.”
“Most transplant recipients have a lot of trepidation about calling themselves survivors,” says Stolar, who has worked in transplantation for more than 20 years and the last three at MD Anderson. “Many do not see themselves as being ‘over’ their cancer.”
She also works closely with transplant specialists, tracking physical effects such as graft-versus-host disease, hypothyroidism, osteoporosis, iron overload and pulmonary conditions, as well as teaching survivors and their caregivers about the impact of late effects.
She collaborates with colleagues across the institution to connect survivors and their families to a range of resources. And she teaches them how to effectively communicate with their community physicians once they return home, by educating them about symptoms to watch for and when they should consult a doctor or return to MD Anderson.
“A bone marrow, stem cell or cord blood transplant can be especially tough with so many potential effects,” Stolar says. “A survivor’s quality of life seems much better than it was a decade ago, but these survivors have been through so much. We want to keep them on top of their health and continue to find ways to improve their ongoing quality of life.”