Unmatched donors – connections advance research

Finding a match in the world of bone marrow transplantation can be tricky. Some people find a match within their own family and others find this match from a distant stranger. But for more than one-third of people seeking a donor – there isn’t that exact match.

New developments and refinements have made what are called alternative transplants more successful, and Paul O’Donnell, MD, the medical director of Adult Stem Cell Transplant Service here, helps explain why a large new national clinical trial may help patients who once thought they had no avenue for treatment. Our treatment center leads the nation in the total number of unrelated transplants for leukemias and lymphomas.

Two women who understand the disappointment of a search for an exact match are Ronnie Maestas and Jessie Quinn, who both happen to be from California. In this video, you can hear the twists and turns of their stories, but they eventually chose a clinical study at SCCA and Fred Hutchinson Cancer Research Center. You’ll hear Dr. O’Donnell explain how three specific techniques are expanding the pool of people who can be served by transplants.

Ronni Maestas of Walnut Creek came here because she could not find a donor match when she wanted a stem cell transplant for her Hodgkin’s lymphoma. She joined a study at SCCA in 2006 and received what is called a haploidentical transplant from her sister. The word haploidentical means her sister was roughly a “half” genetic match with Ronni.

Jessie Quinn of Sacramento received a different experimental therapy in 2010. She received stem cells from umbilical cord donors, and this included a special treatment to strengthen her immune system. You can read more about the experimental way that researcher Colleen Delaney, MD boosts the number of stem cells here.  Delaney also has a clinical study that is open to new patients. Jessie’s own identity, as a person of both Native American and African American heritage, made her search for a donor particularly difficult. The majority of donors are Caucasian.

Dr. O’Donnell hopes that recruitment of patients can begin soon on a multi-center study involving more than 35 different transplant centers across the United States. He will be one of the principal investigators. The study will try to compare the outcomes between patients receiving cord blood and those receiving a haploidentical transplant. Patients who are having difficulty finding matches, especially those from under-represented minority groups, could find an opportunity for treatment that has not been available to them before.

One of the key measures in this large randomized study is going to be the quality of life for the patients during and after the transplant, Dr. O’Donnell said. Not every study of treatments includes these life measures, but Dr. O’Donnell thinks they should be an essential part of decision-making. The study hopes to enroll about 400 patients.

Finding answers, and finding a treatment center, may require leaving your neighborhood. Patient Ronni Maestas strongly recommends that patients cast their nets wide and take initiative.  Here is her advice:

“Don’t just stay in your neighborhood and think there’s nothing else available to you… You have to be willing to look.”

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