Symptomatic: A Medical Mystery Podcast
Episode: A Special Re-Release: Case #17: Every Cure Pt.1 (Dr. David Fajgenbaum)
Original Air Date: September 9, 2025
Host: Lauren Bright Pacheco
Episode Overview
This special re-release highlights the extraordinary story of Dr. David Fajgenbaum, a physician, researcher, and survivor of the rare and deadly Castleman disease. The episode chronicles his journey from phenomenally healthy medical student to critically ill patient, his repeated brushes with death, and his relentless search for a cure—not only for himself, but for countless others suffering from rare diseases. Dr. Fajgenbaum’s tale is one of hope, scientific rigor, and the transformative power of community and determination.
Key Discussion Points & Insights
1. Early Life, Aspirations, and Family Influence
- Background: David, born to immigrant parents from Trinidad and Tobago, describes an idyllic upbringing in Raleigh, North Carolina, filled with football dreams and deep familial bonds (
03:14). - First Dream: Inspired by his father's athletic connection and his mother’s support, David’s initial goal was to play quarterback in Division I college football (
03:52).- Quote:
"She would stand at the top of this hill, and I'd throw the football into the hill, and then she could, you know, throw it back down... She just wanted to help me in any way that she could, even if it was just, you know, rolling footballs down a hill."
— David Feigenbaum (04:08)
- Quote:
2. A Life-Altering Loss: His Mother’s Illness
- Turning Point: While in his freshman year at Georgetown, David’s mother is diagnosed with brain cancer (
05:32).- Quote:
"He said, David, your mom has brain cancer. And gosh, I was like, what? ... That sort of changed everything in my life. It just. Everything changed."
— David Feigenbaum (05:32)
- Quote:
- Career Motivation: Witnessing his mother’s battle instilled a determination to become a physician focused on finding cures (
06:23).
3. A Shocking Descent into Illness
- Early Signs: As a medical student at UPenn—formerly healthy and athletic (nicknamed “the Beast”)—David suddenly faced inexplicable fatigue and physical decline (
08:03).- Quote:
"Then the fatigue became this fatigue that I'd never experienced before. It was like this insatiable fatigue. ... no matter how much I slept, I just was exhausted."
— David Feigenbaum (10:00)
- Quote:
- Denial and Professional Insight: David recognized troubling symptoms in himself, reminiscent of aggressive lymphoma, but struggled to accept this possibility as a medical student (
10:00).
4. Medical Mystery and Rapid Deterioration
- Medical Crisis: After barely finishing a medical exam, David went directly to the ER, where he was told that multiple vital organs were shutting down (
12:03).- Quote:
"I'll never forget my doctor walking into the room and saying, David, your liver, your kidneys, your bone marrow, your heart, and your lungs are shutting down. We have to hospitalize you right away."
— David Feigenbaum (12:03)
- Quote:
- Prolonged Hospitalization: Doctors conducted extensive testing without answers; David’s health dramatically declined, gaining nearly 100 pounds of fluid due to organ failure (
14:10). - Emotional Toll: Friends and family, including ex-girlfriend and future wife Caitlyn and close friend Grant, describe their confusion, concern, and the agony of thinking they were losing him (
15:04–19:27).
5. A Diagnosis and Grim Prognosis
- Rare Disease Identified: After months of uncertainty, a nurse informs David he has Castleman disease—a rare, often fatal, immune disorder (
15:47).- Quote:
"She’s like, 'Good news. It's not lymphoma... You have something called Castleman's.' I'm like, is that good? Is that bad?"
— David Feigenbaum (15:47) - Google Confirmations:
"The way that it was described was that it was just uniformly fatal, and everyone died within a couple years of diagnosis."
— David Feigenbaum (16:41)
- Quote:
6. Repeated Near-Death Experiences
- Cycles of Hope and Despair: Admitted multiple times, David endures unsuccessful treatments and is given last rites at age 25 (
17:21–18:44).- Quote:
"Priest came in to read me my last rites...A few of his friends came in and ultimately hugged him goodbye."
— David Feigenbaum (18:08)
- Quote:
- Personal Regret: David regrets shielding Caitlyn from seeing him at his worst, emphasizing the importance of connection over appearance (
19:19–20:10).
7. Fighting Back: From Patient to Researcher
- Failure of Standard Treatments: With his own life on the line and no FDA-approved options, David decides to participate in his own cure (
22:46).- Quote:
"I thought, I'm gonna get to work and try to find a treatment for this disease to save my life."
— David Feigenbaum (22:46)
- Quote:
- Formation of a Collaborative Network: He launches the Castleman Disease Collaborative Network (CDCN), recruiting experts and leading his own lab research to seek repurposed drugs (
25:20–26:25).- Rational Approach: Recognizes the prohibitive cost and time to create new drugs, pivots to finding existing drugs that could be repurposed for Castleman disease (
26:25). - Quote:
"I didn't have a billion dollars, I didn't have 10 to 15 years... What if there's some other drug out there that wasn't made for Castleman disease?"
— David Feigenbaum (26:25)
- Rational Approach: Recognizes the prohibitive cost and time to create new drugs, pivots to finding existing drugs that could be repurposed for Castleman disease (
8. Trial and Error: Seeking a Cure
- Failed Attempts: Attempts with cyclosporine and IVIg are unsuccessful; relapses continue (
29:18–30:29). - Innovative Research: Monitoring his own bloodwork, David and Grant theorize the body’s mTOR pathway is at fault and propose trying sirolimus, a drug typically used to prevent kidney transplant rejection (
32:20–33:27).- Quote:
"Hey, why don't we use an mTOR inhibitor? ... Here's a drug that turns it off. Let's try it."
— David Feigenbaum (32:50) - Scientific Support:
"It hits the mTOR pathway and reduces T cell activation. Maybe it could prevent the cascade..."
— Grant Mitchell (33:00)
- Quote:
9. Triumph and a New Mission
- Wedding and Hope: As David begins taking sirolimus, he and Caitlyn marry, unsure if the drug will work (
33:44–35:13). - Remission Achieved: They cautiously mark time as months pass without a relapse; after two years, it's clear the drug has worked (
35:54–36:33).- Quote:
"The Sirolimus, that's the one that worked, and that's why I'm here."
— David Feigenbaum (36:33)
- Quote:
- Living in Overtime: With “the hamster wheel” finally stopped, David and his family celebrate everyday milestones with new gratitude (
37:31–38:36).
10. A Broader Vision: Every Cure
- Translating Personal Victory to Public Good: David is obsessed by the question of how many other life-saving drugs are “sitting at the local CVS,” untapped for other conditions (
38:45–39:33).- Quote:
"All along, that pill bottle with sirolimus in it had been there... How many more of those drugs at your CVS could be life saving for you or someone you love?"
— David Feigenbaum (38:45)
- Quote:
- Building Community: He and Grant gather the world’s Castleman experts, undaunted by skepticism, and vow to accelerate cures through collaboration (
39:37–40:16).
Notable Quotes & Memorable Moments
-
On the terror of undiagnosed illness:
"How terrifying would it be to fight an unknown enemy, one you didn't recognize and didn't see coming? What if that enemy was coming from within?"
— Lauren Bright Pacheco (02:26) -
On the emotional devastation of relapse:
"It was just so frustrating. Like, how many times can a body get this much chemotherapy?"
— Caitlyn (32:01) -
On scientific hope:
"We were young and naive enough to have the audacity to think that we could do anything."
— Grant Mitchell (40:16)
Timestamps for Key Segments
- David’s childhood & family background:
03:14–04:27 - Mother’s cancer diagnosis & impact:
05:26–06:54 - Early signs of illness & hospitalization:
08:03–12:44 - Castleman disease diagnosis:
15:47–16:41 - Moments of last rites and saying goodbye:
17:21–18:44 - Meeting with world's Castleman expert:
20:48–21:41 - Formation of CDCN & research pivot:
25:20–26:25 - Development and effects of mTOR/sirolimus therapy:
32:20–36:33 - Reflections on remission, family, and mission:
36:33–38:45 - Calling to pursue “every cure” for rare diseases:
38:45–39:33 - Preparations for Part 2 with a new Castleman patient:
40:33–41:31
Tone & Style
The episode is deeply personal and empathetic, blending clinical exposition with vulnerability, wit, and hope. David’s story inspires by illustrating the blend of scientific rigor and deep human connection necessary to solve the most mysterious and devastating diseases.
From Lauren Pacheco’s reflective narration to the raw, candid accounts by David, Caitlyn, and Grant, the episode invites listeners to celebrate the triumph of the human spirit, the promise of medical innovation, and the healing power of community.
Stay tuned for Part 2, where Dr. Fajgenbaum applies the lessons from his journey to help another patient, driving home the urgency and possibility of finding 'every cure.'
