By Ann Brazeau
The MPD Foundation hosted a patient educational symposium in San Diego on October 25, 2010 at the UCSD Moores Cancer Center in La Jolla. Each speaker commended the attendees for taking an active role in learning about their rare blood cancer and for supporting research and awareness efforts to ensure better treatments and care. They agreed that patients are key advocates for changing the course of their future.
There was a brief discussion about why the World Health Organization changed MPD (myeloproliferative disorders) to MPN (Myeloproliferative neoplasms) and why it was important. This change clearly specifies and classifies the disease as a blood cancer. Data is collected and gathered appropriately when a patient is diagnosed. This change will also ensure payment from insurers who were skeptical about the classification of the disease as a cancer.
Our keynote speaker, Dr. Catriona Jamieson, MD, PhD, is an Assistant Professor in the Medicine Hematologic Malignancies Program and Director of Stem Cell Research at UCSD. Dr. Jamieson found that a specific mutation in the JAK2 signaling molecule occurs at the stem cell level in polycythemia and changes cell fate decisions in primitive hematopoietic cells. She discussed the possibility of using combination therapies for MPN patients since one drug may not manage all the symptoms. Dr. Jamieson has earned great respect in the field and is a committed clinician who sees numerous MPN patients at the center.
Dr. Ross Levine, MD, is a physician scientist at Memorial Sloan Kettering, New York with appointments as Assistant Member, Human Oncology and Pathogenesis Program and Assistant Attending Physician, Leukemia Service. Dr. Levine’s enthusiastic presentation focused on his work defining the genetic basis of myeloid malignancies. He talked about a new drug being tested in his lab, PU-H71 which is a purine scaffold HSP90 inhibitor that seems to erase the JAK2 mutation. His current efforts are focused on identifying the somatic mutations which activate signal transduction in JAK2 negative myeloproliferative neoplasms using candidate gene, genome-wide and functional approaches. He is also investigating the role of different signaling pathways by activating mutations in JAK2 and MPL.
Dr. Jamile Shammo, MD, FASCP, is Associate Professor of Medicine and Pathology, Section of Hematology and Stem Cell Transplantation, Division of Hematology/Oncology, at Rush University Medial Center in Chicago. Dr. Shammo treats many MPD patients and understands their need for special care. Because of her expertise in hematology/pathology, she stressed the importance of educating the physician specialists to ensure proper diagnoses, treatment and ongoing care. She is a member of the MPD Foundation’s Chicago Roundtable comprised of clinicians and researchers from 5 institutions in the Greater Chicago area who are focused on MPD research and quality patient care.
Ron Anderson, Patient. Ron is the support group coordinator in Los Angeles. He was kind enough to share his bone marrow transplant experience with the audience. Ron’s brother was his donor and a perfect match. He does have chronic Graft vs. Host Disease and is being treated for those symptoms. Because blood goes through the entire body instead of one organ, his entire body is adjusting. His skin was affected most harshly but is healing. Ron eloquently explained the challenges and rewards from his choice to have this life-changing procedure.
Dr. Ruben Mesa, MD, is Professor of Medicine and Director of the Acute and Chronic Leukemias Program in the Division of Hematology-Oncology at the Mayo Clinic, Scottsdale, Arizona. Dr. Mesa’s focus is on advancing the understanding and therapy of the chronic myeloproliferative neoplasms. He shared his findings from a patient survey he developed to compare treatments and their effectiveness. Currently, he divides his time between research and patient care. Dr. Mesa is a huge advocate of caring for your body, mind and spirit, especially with a chronic illness.
Dr. John Crispino, PhD, is Associate Professor of Medicine in the Division of Hematology/Oncology at Northwestern University’s Feinberg School of Medicine. Crispino’s work has been focused on Down Syndrome and MPNs. His current project goal funded by the National Institutes of Health, titled, “Identification of altered molecular signatures of Down syndrome iPS cells”, is to determine what contributes to aberrant hematopoiesis and the predisposition to leukemia in infants and children with Down Syndrome. Dr. Crispino gave an update on current clinical trials for new drug therapies for MPDs. He is a member of the MPD Foundation’s Chicago Roundtable and the Foundation’s scientific advisor.
After the presentations patients formed groups specific to their MPN. A clinician/researcher joined each group and answered questions from individuals. Patients were able to share their stories and get feedback from the experts and fellow patients.
The MPD Foundation will continue to provide patient symposia at different times throughout the year. Patients, caregivers, physicians, researchers and industry benefit greatly from the up to date information that is shared at these educational events. They are presented to empower patients and give them the tools to successfully manage their disease. Primary care physicians, hematologists/oncologists and pathologists alike, hear cutting edge information to better equip them in diagnosing and treating patients.
We extend a special thanks to our sponsors, Incyte Corporation, Sanofi-Aventis and Cytopia/YM Biosciences.