The walk from Greg Pacheco’s front door to his car is not a long one. But in 2003, the 30-year-old could barely muster enough energy to take those few steps.
Today, the California native is walking, driving and traveling halfway across the country thanks to a new therapy offered at UAMS.
“I still have Castleman’s disease, but it’s under control and I feel great. I can’t ask for any more than that.”
What started out as chest pains and progressed to severe fatigue and night sweats, among other symptoms, practically incapacitated Pacheco for about 18 months.
“It was quite an ordeal,” said Pacheco, who saw 13 different doctors in his quest for answers.
Finally, in 2004, Pacheco was diagnosed with an extremely rare condition of the lymph nodes known as Castleman’s disease. Only about 200 new cases of Castleman’s are diagnosed each year in the United States.
“After my diagnosis, my wife, Charlyn, and I started doing research and quickly realized there was very little information available. We felt like we were in this alone,” he said.
After about four months, Pacheco located a treatment program in California and was preparing to start it when he heard about the work of UAMS’ Frits van Rhee, M.D., Ph.D.
As director of clinical research for the UAMS Myeloma Institute for Research and Therapy, van Rhee is internationally recognized as a Castleman’s expert and has developed one of the country’s top referral centers.
“Our research includes examining the genetic differences that predispose a person to Castleman’s and whether those differences, if they exist, affect how the person responds to treatment,” van Rhee said.
As a patient at UAMS, Pacheco travels from his Paso Robles, Calif., home to Little Rock about once a month to receive intravenous antibody treatment supervised by van Rhee. Pacheco has maintained this rigorous travel schedule for more than four years. His first two years of treatment required travel to Little Rock every two weeks.
The drug he receives, which is in the clinical trial stage, is called MRA and is designed to block the interaction between the immune protein known as Interleukin 6 (IL-6) and its receptor. Castleman’s patients overproduce IL-6, which causes the debilitating symptoms. If left unchecked, Castleman’s can progress to non-Hodgkin’s lymphoma or other malignancies.
The therapy, Pacheco said, has given him back his life.