When David Fajgenbaum was in medical school, he was diagnosed with a rare and potentially deadly disease of the lymph nodes. There were very few treatments available and no cure. So, he had to take matters into his own hands.
“There were no promising leads, no drugs in development, and very little research being done,” he says.
Over 3 1/2 years, Fajgenbaum worked directly with various specialists, using his own medical knowledge to find an effective treatment. He details his dramatic journey in the new memoir, “Chasing My Cure: A Doctor’s Race to Turn Hope Into Action” (Ballantine, out Tuesday).
“I was studying everything I could find, searching for a drug that could help save my life,” he says.
In 2010, Fajgenbaum was a strapping 25-year-old, third-year med student at the University of Pennsylvania and a former college football player when he suddenly fell ill.
“I took a school exam and then walked myself to the ER,” Fajgenbaum, now 34 and an assistant professor of medicine at the University of Pennsylvania, tells The Post. “They told me my kidneys, liver, and bone marrow were shutting down. My immune system was attacking my vital organs.”
They couldn’t quite figure out what was wrong with him, although they suspected it was lymphoma. He spent seven weeks in the hospital, being treated with steroids.
‘I kept getting more and more sick, and they told my friends and family to say their goodbyes.’
Then, four weeks after being released, he relapsed and ended up back in the hospital. It was then that he found he had idiopathic multicentric Castleman disease, a rare and potentially deadly illness that only 5,000 people in the US are diagnosed with each year. Doctors tried the one drug used to treat it, but it proved ineffective.
“I kept getting more and more sick, and they told my friends and family to say their goodbyes,” says Fajgenbaum, who was given his last rites.
Eventually, chemotherapy proved somewhat effective, and he was released from the hospital, only to relapse three more times in the years that followed. Doctors eventually told him his body couldn’t handle any more chemo.
With his treatment options running out, Fajgenbaum obsessively researched ways he might save himself. He wondered if a drug called Sirolimus, approved by the FDA to prevent organ rejection in kidney-transplant patients might work for him.
“Certain signals in my samples … made me think this drug that suppresses the immune system, so it doesn’t attack and reject the kidney, would work,” Fajgenbaum says. “My communication lines were going crazy, and this drug inhibits [them]. But it had never been used for Castleman.”
Fajgenbaum successfully lobbied his doctors to be his own test subject and started on the drug in February 2014. He hasn’t had a relapse since, and, through his nonprofit, the Castleman Disease Collaborative Network, he’s conducting a clinical trial to see how the drug might work for others.
In 2014, he married his college sweetheart, and the couple now has a 1-year-old daughter.
“I feel great,” he says. “I’m back to my old self.”
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