Partners in Care

Partners inCare Patient, Now Physician, Joins his Doctor in Conquering his Rare Disease

"UAMS and the Myeloma Center are extremely focused on the patient experience,” said David Fajgenbaum, M.D., who was a medical student when he met his physician Frits van Rhee, M.D., Ph.D., but today collaborates with him on several projects related to Castleman disease.

David Fajgenbaum, M.D., was a 25-year-old medical student and a patient with Castleman disease when he met Frits van Rhee, M.D., Ph.D. a decade ago.

Now he is a fellow physician collaborating with the UAMS Myeloma Center clinical director on several projects related to the disease.

“David is an incredible advocate for those with Castleman disease,” van Rhee said. “He has made great strides regarding this rare lymph node disorder, from raising awareness of it to advancing research and treatment.”

Fajgenbaum was a student at the Perelman School of Medicine at the University of Pennsylvania in Philadelphia when he became ill in 2010, and was hospitalized for six months. He was eventually diagnosed with idiopathic multicentric (iMCD), a subtype of Castleman disease. The disorder affects 5,000 patients in the U.S. each year.

“I did some research and found that Dr. van Rhee was the world’s leading expert for the study and treatment of Castleman, specifically iMCD, so I went to see him,” Fajgenbaum, 34, said.

“But while there, I relapsed and spent two months in the hospital,” said Fajgenbaum. “I was on dialysis, needed transfusions, and gained 30 to 40 pounds of fluid all over my body.”

“Dr. van Rhee did a multi-agent chemotherapy, treating me with an experimental drug, siltuximab, of which he was the principal investigator, and he saved my life. He got me through a really tough time.”

“It was incredible,” Fajgenbaum said of his care in Little Rock, Arkansas.

“UAMS and the Myeloma Center are extremely focused on the patient experience,” he said. “Sometimes at major academic centers they are so focused on treatment and research, the staff can lose sight of the patient, but that never happened once at UAMS.”

Back in medical school, Fajgenbaum relapsed a second time and learned the experimental drug, siltuximab, was the only one in development.

“But I survived, thanks to chemotherapy,” he said. “That’s when I decided to dedicate my life to trying to advance the treatment of Castleman disease.”

“A few weeks later, I asked Dr. van Rhee if he would partner with me to help co-found the Castleman Disease Collaborative Network, and he graciously agreed.”

“We are trying to accelerate treatment of the disease with an innovative approach of including patients, researchers and physicians who all contribute ideas toward research and then fundraise and drive forward the science.”

Fajgenbaum remains in remission and is an assistant professor of medicine in Translational Medicine & Human Genetics at the University of Pennsylvania. There he runs a research lab dedicated to studying Castleman disease and is the associate director of patient impact with the Orphan Disease Center focusing on supporting advances for rare diseases.

He and van Rhee have also established and published the first international diagnostic criteria in 2017, the first Castleman disease treatment guidelines in 2018, and launched ACCELERATE, a global patient registry of Castleman disease patients who share their medical records to help advance treatments.

“We learned a lot about Castleman disease from the medical records of the patients enrolled in this study,” Fajgenbaum said.

About two years ago, he and van Rhee received an RO1 grant from the National Institutes of Health.

“It was the first-ever federal grant to study iMCD,” Fajgenbaum said.

Part of that grant includes launching a clinical trial of sirolimus, a drug developed to prevent kidney transplant rejection that Fajgenbaum identified about 5 ½ years ago in his lab and began using himself.

“I have been in extended remission ever since I started on it,” he said. Fajgenbaum is holding a clinical trial with the drug at the University of Pennsylvania in Philadelphia, while van Rhee has the same trial open at UAMS in Little Rock.

In 2019 Fajgenbaum released a book on his experience, “Chasing My Cure: a Doctor’s Race to Turn Hope into Action.”

Since his diagnosis, he has wed and he and wife, Caitlin, recently had a daughter, Amelia. It has been six years since his last relapse but he remains vigilant.

“I know I can relapse at any time,” Fajgenbaum said. “So I fight with everything I’ve got to make sure I’m making progress as quickly as possible for my disease.”

For more information on the Castleman Disease Collaborative Network, visit: https://cdcn.org/. “Sometimes at major academic centers they are so focused on treatment and research, the staff can lose sight of the patient, but that never happened once at UAMS.”