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Wondry plus subscribers can listen to Armchair Expert early and ad free right now. Join Wondry plus in the Wondry app or on Apple Podcasts or you can listen for free wherever you get your podcasts. Welcome, welcome, welcome to Armchair Experts. On Experts. I'm Dan Shepard joined by Lily Padman. Hi. Today we have David Fagenbaum who is a physician, scientist and bestselling author. His books are Chasing My Cure and and We Get It. This is an incredible story of a guy who cured his own disease that he was dying of, actively dying of.
B
And working hard on curing others. This is wild and so cool.
A
Very cool. And he was a football stud. Talk about mixed messages.
B
And he went to college with a perfect 10 Charlie, as you'll hear.
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Yes. Also, if you're moved by this episode, which I think you will be, and you want to donate to every cure, please go to www.every cure.org. please enjoy. David Fegenbaum, Armchair Expert is proud to have Alexa plus as our presenting sponsor. The AllNew Alexa plus is your smart, proactive AI assistant. Just chat naturally about anything and watch your to do list disappear. It learns your style and anticipates what's next across Echo, Fire TV and more. Learn more@Amazon.com New Alexa we are supported by MSNOW. Whether it's breaking news, exclusive reporting or in depth analysis, Ms. now keeps people at the heart of everything they do, empowering Americans with the information and insights that can bring us together. Home to the Rachel Maddow Show, Morning Joe, the Briefing with Jen Psaki and more. Voices you know and trust. Msnow is your source for news, opinion and the world. Their name is new, but you'll find the same commitment to truth and community that you've relied on for years. They'll continue to cover the day's most important stories, ask the tough questions and explain how it all impacts you. Same mission, new name, Ms. now. Learn more at Ms. Now he's an unchanger. He's an unchanged man.
C
He's an exper. How are you? Good to meet you. Great. I was just sharing with Monica that Charlie. Yes, it's exciting.
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I know. I just learned this mere minutes ago myself.
B
We just FaceTimed him.
A
Oh, you did?
B
Yeah, we FaceTimed him. Said hi.
A
Recording, I hope.
B
Well, we were over in the corner.
C
That's not gonna work, so.
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Not really. But yeah, since we weren't recording. David is good friends with Perfect 10. We call him Perfect 10 Charlie on this show.
C
I think I've seen that one.
A
You'll be surprised I'm not surprised at all. Georgetown.
B
Georgetown. Very good school.
A
Very prestigious.
B
I mean, David's gone to all the good schools.
A
He really has way too much schools. Too many good schools. It's almost like a sickness at some point.
B
Ding, ding, ding.
A
Tell me.
B
Because David had a sickness.
C
Oh, okay. Okay.
B
Hello.
A
I didn't realize we're at the making light of it part.
C
Yeah, but that's great. We should start there soon.
A
Welcome. How are you doing?
C
Well, thank you. How are you doing?
A
Wonderful. So, yeah, as Moni was just saying, I was working out appropriately to receive a text from Charlie and I was like, ah, Formula one race.
C
Yes.
A
Expected. Expected.
B
Oh, sure.
A
I think you're interviewing my friend Dave, and I was thinking, how could he possibly know this doctor?
B
Right.
A
And then, of course, you were his quarterback.
C
That's right. We played football at Georgetown. And you guys are a couple of the people who actually know Georgetown has a football team. A lot of people don't know about our team.
A
I don't know if without Charlie, I would have known. And then also, even if I knew, I wouldn't have guessed it was Division one, would you?
B
No, I went to Georgia, so.
C
Yeah. And you know, you know, we have, like, a bulldog mascot, but we had to change from being the Georgetown Bulldogs because there's the Georgia Bulldogs. So where. The Georgetown Hoyas. I don't know if you've heard this.
A
Oh, yeah, Go Hoyas.
C
Yeah, Go Hoyas. It means what in Greek? And so apparently it came about.
B
Exactly.
C
There were some priests that were screaming Hoya sax, which means what rocks. Then people would say Georgetown. And where? The Hoyas. Which means we're the Watts.
A
And so were you guys pals? Pals? You were?
C
Yeah.
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You were. Absolutely.
B
Yeah. They're good friends.
C
They're best friends.
A
Post sim, Charlie will be the first to admit he ran with a real meathead clique within the football program. Were you immersed in that?
C
If you open up the book real quick. I showed Monica a picture. Open it up and go to this middle picture.
A
I've already looked at your body, if that's where we're going.
C
I know your body very well. I don't look anything like I look like now. I mean, I fully embrace dad bod these days.
A
Oh, were you in the middle?
C
Oh, yeah, the very middle. There's a picture there.
A
I mean, I know this picture by heart.
C
I love a great body. But point being, that's what I looked like. So, yes, you could have called me a meathead back then, but I was pre med and I Had intentions to be a doctor.
B
Yeah.
A
Yeah. And what a catch.
B
Can you believe.
A
I can't.
B
I mean, if I'm in college and there's a premed.
C
Oh, forget my poor wife. She started dating me when I looked like that, and then she stuck with this. It's rough.
A
He was a lineman. Yeah. He was a defensive. He was a tight end. He was a tight end then.
C
So I used to throw footballs, Charlie. Oh.
A
And you could count on him.
C
I always.
A
Always, I would imagine, is a special relationship between the quarterback and the tight end.
C
Tight end, especially because they're the one position in the field that you both are throwing passes to and they're also blocking for you.
A
Right.
C
Like you have a special relationship with your offensive line because your life is sort of in their hands.
A
Gronk was a tight end.
C
Gronk was a tight end.
A
So, of course, TB12 and Gronk are besties. That makes sense. How are Travis, Kelce and.
C
Oh, and Mahomes?
A
Mahomes are they.
B
They're very good friends.
C
Okay. Okay.
A
But let's start in Raleigh, North Carolina, because your dad was also a physician or still.
C
That's right.
A
What kind of physician was he?
C
Orthopedic surgeon.
A
Ironic.
C
Yeah.
A
Because I was gonna ask you, how did your physician father feel about you playing football in the first place? But I would imagine, even compounded by this, being an orthopedic surgeon, like that he wouldn't want. Well, he's probably observed a lot of injuries.
C
Well, that's true. But also, he was an orthopedic surgeon for the NC State football team. So he was, like, taking care of people that are playing football. And that sort of led to why I fell in love with football so much.
A
Right. Cause you were hanging to get to go with that ex. Okay. And were you a standout in high school? What were the challenges? Did you have a hard time putting on weight?
C
I am like an okay athlete, but I work really, really hard.
A
But, David, I have to tell you something. Every athlete says that. I finally want one to say, like, I'm a fucking physical phenom. I hit the genetic lottery.
C
Corey Curtis. Oh, no.
A
He'll tell you he works so hard.
B
No, he says he's the best. He says he's. He says he's the best athlete. One time, we were all at a vacation and the men were playing horsesho. And my friend Jess, who is very athletic but has not done athletics in a long time, and Jess was kind of dominating at horseshoes, and everyone was getting very upset.
A
It was Confronting their stereotypes, to say the least.
B
And I said, jess is the best athlete here. And Charlie did not like that.
C
Charlie's competitive for sure. So to give a sense for how crazy I was about working, I had posters all over my wall as a 10 year old. They were like tracking how fast I could run, how far I could throw. I was totally, totally obsessed and just worked like crazy.
A
Your damn was.
C
I love this.
A
If I had a little guy and he was taking something this serious and working so hard, it would have just made my heart explode.
C
I think both my parents, they did love it, but I think they also were like a little concerned. He's really, really focused on this thing. Like, is this too much?
A
Well, my concern would be, boy, he's given in his whole life. If it doesn't work out in some capacity, he's going to be heartbroken. Exactly. Yeah. But it worked out. You did get rec to play at Georgetown.
C
That's exactly right.
A
Did you have other offers, other schools? I did.
C
I was recruited by Ivy League schools, so Yale and Cornell and Georgetown and then a couple other smaller schools in the North Carolina, South Carolina region too.
A
Did you pick Georgetown for some kind of family tradition?
C
There were a few things. Georgetown had this pre health program, which wasn't just a typical pre med where you're taking basic science, but it actually had where you actually could learn about the human body and learn about health and disease. And that was interesting to me at the time. And then I loved the quarterback coach at Georgetown. Joe Morehead is amazing. He went on to be the head coach, Mississippi State and o coordinat and it was his first job as a Georgetown. I was like, oh my God, this guy's amazing. He's going to be incredible. And he is incredible.
A
And when you went there, you were already going to do medicine?
C
Yeah, when I went there, I was really interested in sports medicine. I was really interested in like exercise and diet and nutrition, all that sort of stuff.
A
So does mom's glioplastoma change courses here changed everything.
C
It was just a couple weeks after I got to Georgetown was when my dad called and told me that my mom had brain cancer. And I immediately went home to be with her and just a couple days later, she had brain surgery. It was heartbreaking.
A
So it was operable. Rarely can you operate on them.
C
Yeah, so this was operable. It was in the front left part of her brain. And so it was in a particular location where they open up your skull and they actually wake you up once they've opened it Up. And the reason they do that is because they want to start cutting out tumor. But they don't want to cut out too much because then you're like, you won't be able to speak. And so they did this surgery. It took four and a half hours. And my sisters, my dad and I were just terrified. And I remember they said, she made it through surgery and we're so happy we're going to go back to see her. And I remember we're like crying because we're so happy. Just they're so. And I told my sisters and dad, I was like, we gotta stop crying. Like, let's be strong for mom. And we go back to see her. And I'll never forget this. She had a wrap around her head and she had this bulb coming out of it. It was basically like draining the fluid. She was sort of sitting up. We just didn't know what to say. And we walked in and my mom pointed to her head and she looked at us and she said, chiquita banana lady. And we just like burst into laughter. She was making this joke for us that like the. And the bulb that she looked like the chiquita banana lady. And I loved it so much because she just had a four and a half hour brain surgery. She's brain cancer. What's the first thing she's thinking about? What can she say to make us laugh? So, like we're crying and we're not crying and we're like, our mom's still here. First off, she's speaking. We didn't know if she'd be able to.
A
Yeah, yeah.
C
And then sort of make that joke. It was just everything.
A
Do I have Bader Meinhof? It feels like I've heard an inordinate amount of women in the last 10 years. Get this. Glioblastoma. Is it asymmetric to women?
C
I haven't heard about it being more common in women, but it does feel like it's just getting more common. It's like three different people.
B
People in our circle related to one person.
A
Well, one person knows three people and we know that person. Yeah.
B
And one of the people is a man who was affected by her. But yeah.
C
So there's no weird gender thing with that. But it's heartbreaking. It's just one of the worst out there.
A
So the surgery, what did that buy her?
C
It bought her about a year of clean scans.
A
Was it followed by radiation?
C
Radiation and chemotherapy. And this is back in 2003, 2004. She either came up to Georgetown every weekend or I went home every weekend to North Carolina to see them, so got really special time with them. And I remember about nine months in when they did the first big scan after. It's been a while, and it was clean. That was one of the first times where I just took the most intense tears of joy of my life. It was just sort of like, oh, my gosh, a clean scan. This is amazing. But then it was just a few months later is when it started to grow back. And she passed away 15 months after she got sick.
B
Oh, man.
A
So, yeah, that's fucking rough. So you were in your sophomore year.
C
Over a sophomore year.
B
You're in college.
A
Yeah. Do you see a dip in performance in all categories for a minute, or do you get psychotype A and work even harder to ignore it all?
C
Part of it was the moment my mom got sick with brain cancer. All those posters I had about football and all the thoughts that was out of my mind. And it was like, I want to dedicate my life to finding treatments for people like her. I'm not interested in sports medicine. I'm not even really interested in football right now. I just want to be a doctor because I want to dedicate my life to helping patients like her. If I'm going to be at school while my mom's going through this, like, I'm going to lock in and I'm going to become a doctor and help people like her. And a couple weeks before she passed away, I promised her that that was the last thing I ever told her. Said, mom, I'm going to be okay, and I'm going to dedicate my life to trying to find treatments for patients like you.
A
Yeah. What did she say? So I have kids. You have kids. If one of my little girls said to me, I go, oh, honey, do not burden yourself with me at all. You have whatever life you want. You don't know.
C
Because of the brain tumor and the part that was in, she didn't have too many words left. But it still hits me today, one of the things that she could say and the thing that she said was unconditional love. Again, she didn't have too many words. And so, like, that was something she could say. She started crying. I cried.
A
Yeah. Wow.
B
How special.
A
Well, dude, you gave her the ultimate gift, which is I only hope for one thing in my life, and if I can be looking at my little girls when I die, I'm going to be, like, stoked. Yeah, that's as good as it gets.
C
It is.
A
Okay, so you get hardcore about medicine. You Graduate from Georgetown, you go to Oxford. What's detour? You get your master's in Oxford?
C
Yeah. During my time at Georgetown Town, I now became obsessed with medicine and cancer and cancer treatment, cancer prevention. And I learned that there was a program at Oxford focused on health promotion and disease prevention, and they were particularly focused on heart disease prevention. But there was data coming out around that time that diet, physical inactivity, and smoking can actually all contribute to cancer risk. And so it was this idea that, like, well, maybe I could go study with these people who are focused on heart disease prevention. We could apply it to cancer prevention.
A
Did you like?
C
I did. I love the academic part of it. I have to admit, I didn't mesh as well with Oxford students as maybe I did with my buddies from Georgetown or from Penn, whatever.
A
Cultural gap.
C
It's funny, I played football at Oxford. They have an American football team.
A
Were you ridiculously good compared to everyone?
C
It was really fun. It was really fun.
A
You were a sandbag.
C
But what was cool is that it was a joint program between Oxford University and Oxford Brooks. Oxford Brooks is the local state school that's right next to Oxford. And I just got along so much better with the guys from the brook side and interesting.
B
Can you be objective enough to answer if you were exceptional at Georgetown or if everyone at Georgetown is like you in terms of achievement?
C
The biggest thing that I would say is that Georgetown has this really special focus on helping other people. Like, the motto is men and women for others. And I think that that was the perfect place for me to be at that moment in my life, to be in an environment where literally the walls say, like, men and women for others. Take what's gone on to you and help other people. That was the perfect environment because I shared one part of the promise to with you all, and that was that I would become a doctor. The other promise is I told her I was going to create an organization in her memory. Her name was Annemarie Fagenbaum. Her initials were amf. And I was like, I'm going to call it amf. I don't know what it's going to stand for, but it's going to be for grieving college students. Because I was really struggling with this anticipatory grief. And so we started AMF and then ended up spreading that to other college campuses. I think if I was at any other college campus, I don't know if that immediate. I'm going through a lot of pain. I'm going to now create something to help other people. I don't know if I would have done that anywhere else. So I think Georgetown was the right environment for that.
A
Now, David, I'm a teeny bit suspicious, though, that I don't know if you were. Were you dealing with it? Do you think you were dealing with it?
C
Dealing with my grief.
A
With your grief?
C
No. I think that the way that I decided to start dealing with my grief was. It's called instrumental grieving, where, like, you create something and you pour it into that thing. And this is actually something that a lot of men do when they deal with grief. They channel it to something. I created amf, and now I'm, like, sitting in support group meetings, other people dealing with grief, and they're talking about amf. And that, for me, was how I tried to deal with it.
A
Yeah, yeah, yeah, yeah. It sounds a bit like you tried to treat it with action. Yes, exactly. As opposed to maybe perhaps sitting.
C
Yes.
A
In discomfort.
C
Absolutely. It was like, if you start feeling some discomfort, I'm like, I'm gonna go work on this nonprofit.
A
Yeah. Yes. Okay, good. That was kind of my hunch. And then, of course, that just waits there. At some point, it does start just kind of seeping out. How delayed was it for you? I lost my dad when he was 62, and I just had all these waves. First was just getting him through the whole thing. There's a lot of action there. Then there's action in the aftermath, and it's just, honestly, years. And it continues to be waves of like, oh, right, wow. I have a sadness now that I didn't allow myself to have then. And that's 13 years ago.
C
Sorry that you lost your dad. I've had those waves. And I think that you're right. If I sat with it more when I was 19.
A
Yeah.
C
I probably would have had maybe fewer waves also.
A
Who knows?
B
Yeah, who knows?
C
Exactly.
A
Gotten a drinking problem and fucking gone nowhere. Yeah.
C
I will say that the one thing is that. Because my thing that I was channeling my time into was, like, schoolwork and this grief support group. In that grief support group, I'm talking. I think I got maybe some of that. But when I went on to get sick, that brought back a lot, because all of a sudden, I'm now laying in the hospital bed, and my dad, my sister's around me, and I was with them before I was on that side.
A
Yes. And you can't get into action because you are strapped. Exactly. So let's get to there. So we leave Oxford. We go to Penn.
C
That's right. For med school.
A
And you're in your third year of med school and what's the first symptom? You're like, everything's great, you're humming along. You're your third college, however many years.
C
That's right. I was very healthy still. I actually won a bench pressing contest a couple months before that.
A
How much did you put up?
C
I think it was like 325.
A
Jesus Christ. Wonderful.
C
So very healthy. I am on an OB GYN rotation. I'm now on the OB part of it. So I delivered my first couple babies into the world, which in med school, that's this major highlight as incredible it gets. I'll actually, I'll share a quick story about the second patient I delivered. The parents were both older than me, as you can imagine, because I'm 25 and they're sort of really concerned, like, why is this like 25 year old in here?
A
Not what I want.
C
Not what I want. The husband comes to me like, this isn't your first time, right? I was like, well, no, cuz it was my second time. And I was like, no, it's not my first time. I'm a med student. I'm just learning. Anyway, I remember like delivering the baby and baby's healthy and everything was all good. But then I remember turning over like it was my second time. But like, your baby's really healthy, like everything's all good. We got lucky.
A
We all got lucky today. Including.
C
We're two for two.
B
Oh my God.
C
So yes, maybe I got sick as payback for that. But within the next couple weeks, I started feeling more tired than I ever felt before. I'd been in school forever and I just never felt fatigued like that. And I started noticing lumps and bumps in my neck, which turned out to be enlarged lymph nodes and had abdominal pain. And then what was so weird was I noticed like fluid pooling around my ankles and I was like. But I'm like this like healthy 25 year old. What's going on?
A
Also, can we add. And I love the irony of this. You're also a dude, you're in medical school and you probably ignored three or four red flags, right?
C
For sure, yes.
A
Isn't this insane? Like, like you would think you'd be inoculated from this because you know about it. You're not.
C
No, exactly. I'm literally feeling lumps in my neck. I'm like. And I'm like, oh, these feel like lymph nodes. Like that patient I felt on who had lymphoma two months ago. I'M like, that's weird. Head on to something else. Why am I not paying attention to any of this? Probably a lot of reasons for it, but. So the fatigue got so bad, I would see a patient and then I would go find an empty room and I would take an 8 minute nap. I'd set my alarm for 9 minutes, I'd wake up, up 8 minutes later, I'd go see another patient. I just keep doing that over and over again. Taking caffeine pills, I was doing anything I could to stay awake. So I took a medical school exam. And then I'm sure I got like the worst grade ever. I never got my score back. And I went down the hall to the emergency department and they did blood.
A
Work really quick from feeling the inflamed lymph nodes.
C
Two weeks.
A
Two weeks. Okay.
C
Two weeks. Okay.
A
So walking down the hall, I even.
C
Remember when I was taking this med school exam, I was like, is the answer A or B? And then I remember in my brain I thought to myself, I'm like, it doesn't matter because I'm about to die. And I'm like, I'm like, why did I think that I'm about to die?
A
What?
C
And so like I finished the exam, I walked down the hall. Hold that.
A
You are. Can we take one second right there? That is a gift. To have those moments a few times in your life, to experience a right sizing of what's important just a few times in your life and hopefully it doesn't kill you. But I've had a couple of those right, where it's like, oh, right, I don't give a flying fuck about all the stuff I thought I cared about. It's a unique feeling. Like for you to say you don't give a shit how you did on the test is really profound.
C
And I think it's an important feeling for us to share with other people because the important thing is to start putting your mind in that place before you have to experience it yourself. Like, don't wait until you're 80 years old and then you're like, oh crap. I wish I had thought this, but.
B
I don't think know that you can get.
C
But yeah, I just have to.
B
I don't know if you can borrow it. I think you just have to experience it, unfortunately.
A
Maybe do a medically supervised overdose.
B
Yeah, hopefully not. Hopefully don't ask.
A
A clinic that's like medically supervised.
B
It is normally death related though. It's moments where either someone around you is sick or has died or you yourself Are dealing with some health issue. So. Yeah, it does suck that you have to experience it like that.
A
The main thing has to be in.
B
In so bad. Yeah.
C
Yeah.
A
Okay. So sorry. We go down the hallway.
C
Yeah. Go down the hall. They do some blood work. I'm a med student, so I'm used to, like, being on the other side. It usually takes a while to come back and see the patient. Unless there's something really serious. And then they come back really quickly.
A
Yeah.
C
The doctor comes back, like, 10 minutes later, or maybe it was 15 minutes, but it was quick. He said, david, your liver, your kidneys, and your bone marrow are shutting down. We have to hospitalize you right away. And I'm like, wait, what? I. I was just like. I delivered a baby a couple weeks ago. What do you mean my organs are shutting down? They hospitalize me, and then over the next couple weeks, I go from my organ shutting down to being unconscious, Gaining a hundred pounds of fluid all over my body. 100 pounds of fluid all over my body. Because my liver and my kidneys weren't working.
A
So everything's just backing up.
C
You're not urinating at all. So the fluid is going everywhere. I had a retinal hemorrhage, which made me temporarily blind my left eye. So I couldn't see anything out of my left eye.
A
Couldn't throw any passes. Depth perception's gone.
C
That's all I could think about, actually. I was like, darn it. This is gonna really hurt my leg.
A
10Ft or 25ft away?
C
Exact. So I was getting so sick because of all the organs shutting down. I was on dialysis. Cause kidneys weren't working. I was getting daily transfusions of red blood cells and platelets. They were just trying to keep me alive. And no one knew what the diagnosis.
A
Was in that state. Is your white blood cell count just, like, off the charts.
C
So white blood cell count was pretty normal at that time. I don't have a good explanation for why white blood cells were normal, but the platelets and the red blood cells were just collapsed. And you need platelets in order to prevent basically, from you bleeding out at all times. Because you have these little micro bleeds that happen all over your body, including your brain. And your platelets just sort of stopped up always. It's, like, all over your body all day, every day. And so when you get as low as mine, where you're in this critical state where you can have a little bleed in your brain and then you die from it.
A
Let's take a second for Your poor father who lost his wife and now he's visiting his.
C
Yeah, he spent every night in the hospital room by my side. So like, you know how they just like pull out couch things every night with me? My sisters were amazing.
A
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Exactly. I was at a happy hour a couple days ago with a very cool woman named Margot. Very chic. And I was like, ooh, I love your pants, I love your sweater. And she said, quints.
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Boom.
B
And I was like, I should have known.
A
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B
Also, you told your mom you were going to be okay. And then that was another promise.
C
And then like, no, I thought about a lot. The promise I made sure, because I was like, I promised her I was going to help people. I was like. And I've just been like, working, working, working to help people, sucking up the system. I was thinking about that. Now you say I'm like, darn it, no. But I was thinking, I'm not going to help. I did all this training and now I'm not going to help anyone. I told her I would. So with Francisco, he came in to see me. He, like, leaned in to give me a hu. He's A med student also. So he has a stethoscope around his neck. And I remember it was like slow motion because he comes and give me a hug and I see the stethoscope coming because any sort of trauma to my body could create one of these bleeds. And I see the stethoscope coming and it just like hits me like right between the eyes. And we're just like looking at one another and for a split second we're like, oh my gosh, did he just kill me? Like my best friend just like, just like hit me in the head with his stethoscope. And then we like were sort of still for a second. And then I didn't black out because of an internal hemorrhage. And then we were okay. And then we laughed about it. But it's crazy. That was what things were like back then when I was in the hospital. Yeah.
B
Oh, okay.
A
So they end up giving you a crazy cocktail of chemotherapy.
C
That's right.
A
As a last ditch effort at this point.
B
How long were you in the hospital?
C
So I was in the hospital for seven weeks before they gave me this. First they actually gave me high dose steroids because we didn't have a diagnosis. So first they gave me high dose steroids. Things start to improve and then four weeks later it's roaring again. And this time is when I had my last rights read. To me, this is now 11 weeks into my illness. Right when we finally had the diagnosis. So diagnosed with Castleman disease, this rare disease where your immune system attacks your vital organs right around the time of diagnosis, they give me first one chemotherapy and thankfully that's enough to sort of hold things at bay. But then four weeks later I'm back in the ICU again and that's when they give me seven chemotherapies.
A
So yeah, your own immune system's killing you and so they need to carpet bomb your immune system. So that's non functional. And that works?
C
It does. The time they give it to me now it's the third time that I'm on death's doorstep and they tell me before, you know, we're out of options so we're gonna carp bomb you with every chemotherapy we can think of at the highest dose possible. You know, I remember closing my eyes and being like, well, this is it, it's not going to happen. Hugged my family.
A
Is there any peace at any point during this?
C
You know, I have to admit, during that six month period, there was never a moment. Oh actually, no, there was one moment of peace. But for the most part, it was this fight. Like, I can't believe this.
A
Like, such sadness with the diagnosis of Castleman, that doesn't get you shit, right, because there's no real treatment for Castleman. Do they even know? I got quite curious whether we think this is a genetic condition or environmental. Do we have any sense of how Castleman comes about?
C
Yeah, so my subtype is called idiopathic multicenter. Castleman's idiopathic means we don't know the cause. You don't ever want to have a disease that's called idiopathic. But we do know that even within idiopathic, that about 5% of patients will have a family member with Castleman's as well. And so those people, we feel pretty confident there's some sort of genetic heritability. But in the rest of us, we don't know what triggers this. I run a lab, and our lab does spend time trying to figure this out. And we have found some, what are called somatic mutations. So they're basically not mutations you're born with, but mutations you acquire over the course of your. Your life. It's in the same way that cancer occurs because you acquire mutations in your life in those cells. We're observing somatic mutations in Castleman's patients.
A
And where is that centered?
C
Generally in the lymph node. And part of the reason that that makes sense is that the lymph node is sort of the home base for your immune system. So, like, if you're fighting an infection, you'll notice your lymph nodes get enlarged. And that's because your immune cells are fighting something, and they go back to the lymph node and they talk to one or they communicate and they go back and they fight. They come back and they go out and fight. And so the lymph node is like the home base for your immune system. And so we think these are occurring in the lymph node. Therefore, all these immune cells are going out and wre.
A
Ah, so they're leaving mutated. And so they're not good at reading its own DNA.
C
The big thing is that in both of your immune systems, you want your immune system to be in surveillance mode, which means it's turned off looking for bad things. And when it sees a bad thing, you want it to kill that bad thing. Then you want to turn itself back off and go back into surveillance mode. What we find in Castleman's is that our immune system turns on and then it doesn't turn off. And when your immune system's on and it's releasing all these bad things. It starts attacking healthy, good things like your heart, your lungs, your autoimmune disorders.
A
That's exactly.
C
Your and Autumn disorders typically are focused on one particular organ or one tissue type. So it might be the joints or it might be the heart.
A
I have psoriatic arthritis.
C
Yes. And so that's your skin and it's also your joints.
A
Yes.
C
And so Kasselman's is like that, but it seems to be more non specific. It's not directed at the skin or the joints like in psoriatic arthritis, but it's more general.
A
Okay, so this intense carpet bombing works, but it works for how long?
C
For about a year. So now I'm out of the hospital for a year. I'm back in med school. And by the way, my girlfriend Caitlyn and I were dating and somehow she, like, wants to stay with me during all this.
A
You look rough. You did a 180.
C
I did, I did, yeah. Yeah.
B
Well, yeah, you have a very distended.
A
Fluid and that kind of distended stomach you get when you. I forget what condition that's called, but yeah, there's a lot happening.
C
A lot's happening.
A
Yes. When do we put the NBA in the mix?
C
So the NBA comes two years after I get sick with Castleman's, because I spend the next two years certainly battling my disease. But also when I had this relapse, after I get the carpet bomb chemo, I decided I'm going to dedicate my life to trying to find a cure for Castleman's. But it took getting the carpet bombing, and then I was actually put on an experimental drug that I would hope would keep me in remission. And it was after it didn't work that then I was like, I got to dedicate my life to this. And then it was in the course of trying to figure out a cure for Castleman's that I realized that the barriers in the way of a cure for Castleman's were not science and technology. They were like, can you get people to work together and can you collect enough blood samples for research and can you come up with the right strategy and can you raise money and like these. These are all organizational business problems. And I was like, oh, the science is clear. The administrative stuff is going to prevent me from solving this disease. And actually, I mentioned that experimental drug. It's called Celtuximab. And it's hard for me to put into words what it meant when I got started on this drug, because custom is A rare disease. So there's 18,000 human diseases, and more than half of them are very rare. And so, like, you probably never heard of literally 10,000 plus diseases ever. Cast them is one of those super rare. And it's very rare for them to have a clinical trial of a drug that might work.
B
Like 95.
C
Don't have any treatments. Mine actually had a trial and I was like, oh, my gosh, I know there's no solution, but maybe this drug's gonna work. I was so hopeful and I got put on it after the carpet bombing, chemo, and I really believed and hoped that it would keep me in remission. And then a little bit over a year later is when I had that relapse and it all came back and I'm back in IC with all my organs shutting down. And that was so difficult emotionally to go from. Like, I think we got it. Like, this is the thing. Like, and I think it's going to keep me in remission. And I actually met other patients who were in remission. I, like saw them. They told me how they were in the ICU for months. One person had part of his bowel resected. He had all these strokes, and he was walking on this drug. And I was like, oh, my gosh, I can be like him. And then when it came back, it just wrecked me.
A
True vulnerability hits when you relapse like that. You had three relapses in five years.
C
A total of four relapses of five episodes of this disease in each. One was so difficult for the emotional parts. I mean, obviously there was the physical part. I'm in the ICU because for each of them I had gotten really hopeful and I was like, we did it. And then it just all came back.
A
Okay, so when do you get the kind of breakthrough thought that maybe I should approach this in an off label way? And let's just talk about off labeling and medicine and how that works.
C
It was during that big relapse, and now this is flare number four. So the third relapse, and my doctors explained to me, okay, you've now failed to respond to the only drug in development, like celtaximab.
A
Is it.
C
There's nothing else. It didn't work for you. He said, all of your organs are shutting down. I'm going to try the same seven chemotherapies again. There's just a few problems. One is that who knows if they're going to work again. You know, you've gotten them multiple times, they tend to lose their effectiveness. As time goes on. Two, you're approaching the lifetime maximum of a drug called atramycin. There's only so much of these chemos as you can actually get before they cause cancer and organ dysfunction on their own. So you're approaching your lifetime max. So I don't know how many more times we can do this. And the third thing he said was, we've tried everything. There's nothing more we can do. And my sisters and my dad and my girlfriend Caitlin were sitting in the hospital room. And I remember we were just heartbroken because he's telling us, end of the road.
B
Yeah, this is it.
C
Like, this is it. And we're crying, and it's horrible. And around maybe a minute or two of just, like, us all crying and bawling. I just remember thinking to myself, I'm like, wait a minute. You just gave me seven chemotherapies, and none of them were made for Castleman. They were all made for lymphoma and myeloma, and they worked. I know I keep relapsing, but how do we know there's not like, an eighth drug out there? Did we try all the other drugs? There's 4,000 drugs.
A
4,000 FDA approved prescriptions. One could be given. Exactly.
C
And so I've gotten 10 of them now, between the different drugs, even, like.
A
There'S nothing still, like, a lot left.
C
And not to say every drug is possible, but how can you tell me that We've tried everything.
A
We're at the end of the road.
C
If I hadn't benefited from those seven, I wouldn't have thought that they were like, oh, nothing else is going to work. I'm like, okay, they're probably right. Nothing else will work. But they gave me drugs that were working. So that became really clear. So I told my family. I was like, I'm going to dedicate my life to trying to find a drug for this disease. They sort really of were like, all right, Dave. Weren't particularly optimistic at that moment.
A
As someone who loves someone going through that stuff, you're always really having a hard time debating whether or not you're going to snuff out their hope or help them get to the part where we have closure. That's what you're trying to navigate. Like, no, my love, it's time for us to take stock of all the good stuff and have as much gratitude as we can have on the way out. It's hard.
C
It's really hard because I also think back with my mom, probably two of the most important months of my life were the two months after the cancer was coming back, where we just were, like, present with one another. We were, like, looking at old home.
A
Videos together, not fighting exactly.
C
And then I like, look at how I handle this. I'm like, wait a minute. I didn't do that at all. We watched no home videos. I was, like, in the lab, Trying to figure out, is there a drug that could save me? And I'm, like, fighting. Fighting, right? It really was. I was like, let's go. So, yeah, it's hard to put those two things together.
A
So once you have this idea, where do you start? There's 4,000 drugs. You start doing classes of drugs. How do you start weeding out?
C
Great question. So the first thing I did was to try to start to understand what does the world know about this disease? And so there were 2,000 papers. I read those 2,000 papers to try to understand. Understand what do we know about castleman disease? Second, I connected with all those doctors for all the papers that were written to try to start connecting them through an organization called the castle disease collaborative network. So I created this nonprofit. Is basically, let's centralize all the doctors, the patients, the loved ones. Let's get an understanding for what do we know? Because I even heard there's a doctor in Japan that was trying this one drug. I'm like, well, I want to try that drug.
B
How are you doing all this? Weren't you so tired? I mean, your organs are in flux. How are you doing?
C
I should mention that I did none of this for the month that I was in the icu. So, like, I made the promise to my family, and then I'm out for the next next four weeks Fighting for my life. But it's then once I started to make it through that, that then it's like, all right, let's get to work. And so started reading papers, started reaching out to doctors, so coming up with sort of this network. And then the second thing was, let me look at all the related diseases, Diseases that are kind of like castleman's, that are weird immune disorders, like psoriatic Caracas. What's out there? What are all these drugs that exist for other conditions?
A
We would agree these labels are arbitrary.
C
They are very arbitrary.
A
After dealing with six patients over here, that calls it this thing. It could be the same thing, right? Exactly.
C
And the drug companies, when they pick a disease to pursue, They've got a lot pick from, like, they picked the IL17 drug for psoriatic arthritis, but they could have picked a lung disease with the same drug. And they picked for a lot of reasons that have nothing to do with biology and nothing to do with whether it's going to work. It's like they have to figure out the most profitable opportunities.
A
Yeah. Kind of market.
C
Just because it's not approved for it doesn't mean it's not going to work. So my mindset was, okay, let's figure out what we know about Castleman's. Let's start looking at related diseases that are like Castleman's. And then the last bucket, which was probably the scariest or at least the most challenging, was I'm going to start collecting blood samples on myself and start trying to do research on my own samples. And the reason that was scary is because I didn't really know all that much about laboratory research. I found this amazing colleague at Penn who gave me some space in her lab. But I could do the first two. Like, I could build a network, and I built that organization amf. I could understand what other diseases there were. But, like, starting to do experiments, that was certainly the most challenging. And so, yeah, over the next year, built out the network and started identifying, you know, potential related drugs. Was storing my blood samples every couple of weeks in the lab.
A
So as opposed to you taking one of the medicines and monitoring your symptoms, you were actually able to apply the medicine to your blood in some kind of a petri dish and observe it.
C
So what I was doing, actually trying to understand in my blood samples which of my immune cells were turned on, what were the proteins that were elevated in my blood versus healthy people, and see if that could give me a fingerprint for what was wrong in my disease. My idea was that if I could figure out what was wrong, I could then see, is there a drug that can reverse the thing that's wrong? Like, if something's too high here, find a drug that can maybe make it go down.
A
Yes.
C
That was that third bucket in my mind that I wanted to do.
A
Howard, was just the figuring out which of. Of these T cells or immune cells were the ones that were problematic. That feels hard enough right there.
C
It is hard. Didn't even get to the third bucket before I then had my fifth relapse. I was just storing these samples. So by that stage, I started business school because I'd finished med school, and I had this relapse and I had this long spreadsheet. And I remember now I had a couple drugs at the top that I thought maybe we should try because they were using related diseases. I hadn't yet done the Experiments on my own blood to figure out what could be maybe useful for me. And I remember I talked to my doctors about trying this one drug called Psychospat Born. We tried it. We were so hopeful. And then it didn't work at all. My disease was just roaring through it. Organs were shutting down. All the markers were bad. I was getting like, worse and worse every day. And then I asked my doctors to try the number two drug on my list is drug called ivig. It requires an infusion. I remember I'm going to get that infusion. And my doctor, who I asked to do this, she asked me, she was like, do you want some fries for that order, David? Because I'm like asking for this ivig.
A
Well, that's. That was gonna be one of my questions, like, were you able to prescribe yourself this stuff because you had your medical degree, or were you reliant? And how hard it was is it to get other doctors to sign on to this approach?
C
I was relying on the other doctors. And it's appropriately hard to get these medicines right. Like, it should be hard, you know, it shouldn't just be. The drugs get thrown all over the place. But while it was appropriately hard and I needed to show them evidence and reasoning, I was dying. They'd already told me they tried everything. They told me they didn't have anything else for me. So now I'm telling them things that maybe we could try.
B
You're like, I'm here to be a lab rat now.
C
Exactly. And I was willing to take on all the risks. And, like, I know that the drug kill me, but I'm not going to live much longer. And so the IVIG they gave me, the infusion, everything stopped. All the things that were getting worse halt.
A
In, like, what time frame?
C
Within a couple days. So, like, it's halting. And I'm with Caitlyn and we're engaged.
A
And we're like, scared to trust it as well, though.
C
Well, I sort of wish I was like, I literally.
B
You're just so hopeless, so nice.
C
I was like, ivig. I remember literally saying the words, we did it, Katelyn. We did it. Oh, my God. And so a couple more days go by, and then all of a sudden, sudden things start getting worse again. I'm like, this can't be. We going for blood work. It's getting horrible. Within a couple weeks now, I'm back in ICU with everything shutting down, and I just tried the two things that were like, the top of our list. I gave it my best. I wasn't ready to, like, fully accept it, but at least we tried it. And I had the feeling like we tried and we failed. And then my doctors gave me the same seven chemotherapies. This time, they gave me the highest dose they'd ever given a human of this one called a Toba cell. And I remember saying goodbye to my family again and saying goodbye to Caitlyn. I was just heartbroken about it. Caitlyn and I were supposed to get married five months later, and I felt like I'd failed her.
A
She wasted all this time. Yeah.
C
She's been with me for all this time, and she just. Amazing. I remember sort of starting to close my eyes and let go. I remember falling asleep and realizing that this was it. And a couple days passed, and that crazy, intense chemo worked just enough. Like I squeaked by. I remember starting to wake up and just being shocked. It was a lot of feelings. Like, one was shock, another was, oh, my gosh, this is so exciting. Like, I'm like, the amount of times you said it worked, but this time I didn't say it worked because of what happened just a couple weeks before. But then it was immediately. The sense of urgency was like, okay, I've got a window. I don't know how long it's going to be. I turned him. My sister Gina was on my left side, and Caitlyn was on my right side. And I remember turning to Gina and I was like, hey, G. And they're like, oh, my God, Dave. Hey, can you go downstairs and see if you can get that lymph node they just cut out and send it to Philadelphia. And I was like, caitlyn, will you call UNC and send those blood samples to Philly? Can you get the records to go down, too? And they're both like, what? And I was like, because I'm getting out of here. I was like, and we gotta find a drug for this thing. And so it was about three weeks of me recovering, just like, I gotta get to Philly. Gotta get to Philly. Gotta get to Philly. So I got to Philly and I thought the blood samples and started doing experiments. This is when I was now in that third bucket, which is, what are those immune cells doing? What proteins are too high? I spent about three weeks doing experiments, and by the end. End of it, I was pretty convinced that this one part of my immune system called mtor. So your immune cells, they're all over your body, literally billions of cells. They have to communicate with one another and be able to let cells in different parts, know what's going on. One of the key communication lines in your immune system is called mtor. The research I had done on my own samples suggested it was turned into overdrive. There's like too much MTOR on. You can imagine, like if your fire alarm is mtor and it's saying like, there's a fire here and it's stuck in overdrive, your immune system is going to go berserk. In my opinion, the data suggested it's a false alarm. Like the alarm is going off, it's going berserk, but there's nothing to fight. Saw this result, I got so excited because there are drugs that are called MTOR inhibitors. They've been around for decades. They actually were made for organ transplant rejection because if you get a kidney, your immune system will attack that organ and it'll turn MTOR on. But if you turn MTOR off, the alarm goes off and you don't attack that kidney. So I was like, oh my gosh, we can try an MTOR inhibitor. And so I took the data to my doctors and they prescribed me this MTOR inhibitor called Sirolimus.
A
It was like a 10 year old drug at the time.
C
Been on the market for 15 years, sort of known for a few decades. And yeah, now it's been over 11 and a half years that I've been doing great, this medicine. Wow. No relapses, full health. Yes. Let's start.
A
The question I don't want to ask, but I got to ask is so many of these drugs, your body kind of adapts.
C
How long is it going to work for? Yeah, it's the right question. I mean, I think that what's so crazy is how long it's been.
A
Well, to me, 11 is like, you've definitely passed that window of our stuff.
C
But you can imagine that every day that went by afterwards, I used to measure someone, be like, how long have you been in remission for? And I'd be like 37.29 months.
A
And they're like, what, you're like someone in sobriety?
C
Yeah. I'm like, I can't round up. You don't know what's going to happen tomorrow when you're going through these sorts of things. But I know it's been like 28.29. And so the months added up. I made it to Kayla and I's wedding day, May 24, 2014. My hair grew back just in time for the wedding.
A
Nice.
C
It looked like a buzz cut. Back in time. And yeah, the months are just Sort of stacked and stacked.
A
Okay, so you come out of this and I don't know in order, but you get a job as a professor at Penn in the medical school.
C
School, that's right.
A
And you have a lab. Yep. And you decide to really dedicate yourself to exploring these other 18,000 diseases with these 4,000 medicines that exist to see what off label stuff could exist. Are you immediately employing AI? When does AI enter the picture? Because it's gotta be almost impossible without AI.
C
Yes, that's right. So the moment that Sir Lima started helping me, I just remember having these flashbacks to walking past the CVS and being like, like, wait a minute, it was in there all the three years that I was dying from this thing. And all those five times I said goodbye to my family like it was in that cvs and I just never knew it. Like no one knew it.
A
Stay tuned for more Armchair Expert if you dare. This show is sponsored by Better Help. So many of us are really impacted by the colder seasons, when it gets dark so much earlier and the days feel shorter than ever.
B
Yeah, me, Me. I'm the one. I feel horrible. When it. Seasonal affective disorder.
A
Yes, you do. Take a. I take a hit.
B
I do.
A
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B
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B
Are you kind of like, why didn't all these doctors figure I'd be mad?
A
You would.
B
Well, I'm just in here doing my own blood and testing. Why aren't these other doctors doing that?
A
I think you have to acknowledge how myopic the field of medicine is. You are an oncologist. His father's a surgeon. You're not in the synthesizing generalist business. You, you're in the specializing business. And generalizing and synthesizing is so hard. This is why people were freaked out, you know, that Homeland Security was tapping everyone's phones and stuff. It's like, this is a fucking joke. Nothing can synthesize all this information. You can gather information all you want, but to actually find patterns within information is so time consuming and nearly impossible for a human to do.
C
I completely agree. And then also the incentives are the other problem for why this doesn't happen.
A
Yeah, you're not going to launch a new drug. Hopefully you're going to pick up another few patients, but it's going to be a few. So the pharma company is not incentivized to figure this out.
C
That's exactly right. So once I started, like, oh my gosh, how many drugs are out there? It's like, okay, this worked for me. Are there other drugs out there for other people? And I'm just thinking about, like, the patients that I took care of in med school where we said, this is it, we're out of options. Like, well, maybe we weren't. Maybe there was something else. I think about my mom. Maybe there was something that could have helped her.
A
I'm going to add too. It's not a sexy idea.
C
No, not at all. It's like recycling old drugs.
A
We like inventions and breakthroughs. And we don't like hearing the answer was sitting next to us the whole time.
B
Well, unless you have the ailment, then it's really sexy.
A
Like, it's already here. Yeah, yeah, of course. It's just our nature is to want the breakthrough and the next thing and the next clinical trial and not, hey, we already had it.
C
That's exactly right. The people who are doing the work are not incentivized as the patients. Like we are incentivized to do it. We can benefit from it, but the people actually doing the work are not going to benefit from it the same way that they would a new drug. So decided that, okay, this is what I want to do with my life. I want to find new uses for the medicines we have. I want to save people with treatments that already exist. Just in the same way that I was able to be saved. And so joined the faculty at Penn. And of course, we started focusing on Castleman's and other related rare inflammatory diseases, rare cancers, rare autoimmune conditions because there's some weird overlap. That's exactly right. So Kasselman's very similar to multiple myeloma. It's similar to Poem syndrome. There are these weird inflammatory conditions and cancers that overlap. And so start studying them and we start finding more repurposed drugs. I'm like, wait a minute. There's more for Castleman's and there's more for Home syndrome.
A
Sadly, you had recommended to another guy suffering from Castleman to take what just worked for you. And you were so excited to share it with them. And then it worked for a minute, but it didn't work.
C
It worked in some Castleman's patients, not in others. I remember the first Castleman's patient that I got to see because we treated patients in various parts of the world, but that I actually got to see in person. A young boy named Joey who responded incredibly well to it. So, of course, Monica, you're gonna laugh with me, though. Here I am again. Like, we figured it out. Castleman's is taken care of. Look at Joey. Like, it's working for everyone. We're done with Castlemans.
A
I was directing the sitcom version of this. Like, he would always pop champagne. And it was like, by the 20th.
C
Time we saw him pop champagne, we.
A
Would be laughing so hard. I know, but you need that spirit, actually.
B
It takes that mentality.
A
That's right.
B
Thank God.
C
So we start helping these other people, and then it's other diseases. And so angiosarcoma, this horrible cancer. We' find that there was research that was done three years earlier about a potential drug that could be useful for it. But it was done in the lab, and it was never given to a patient. And we treat a patient with it, and it works for him. And like, he has this uniformly fatal cancer. And actually, this person is actually my uncle. And so that's even why I was thinking about it. My uncle Michael, he got this horrible diagnosis. Everyone dies within a year.
A
I hate to be. No, this is too much stuff. In your family. You guys all on a. Well, like, some point, I get suspicious of your retirement. This is like a definitely off, disproportionate amount.
C
We've had a lot of suffering.
A
Yes.
C
So figure out that basically this work had been done three years earlier, but no one ever tried it in a patient. So we get Michael on this drug. It works incredibly well. Last month, he walked his daughter down the aisle on her wedding day. Nine years later. Wow, this is crazy. Incredible. To start giving it to other patients. It turns out it works in about 18% of patients. So it's not everyone, but 18%. It works in. It's everything. You're living years instead of weeks. And so that for me, was this major eye opener. The other drugs we've discovered, the repurposed drugs, we did a lot of hard lab work to figure it out, doing experiments on my blood and other people's samples. But we didn't have to do anything for Michael. We just had to find a paper that someone else had published and everyone had just disregarded. Because, like, you can't read millions of papers a year and stay on top of everything. And so here I was, like, wait a minute, maybe there's actually breadcrumbs that are already out there, so we don't even have to do all the crazy hard lab work. And so that was a really important moment for me. And fast forward. Over these 11 years, we've now advanced 14 repurposed drugs for a number of rare diseases. We saved thousands of lives, including injustice sarcoma patients. But about three years ago was when artificial intelligence was really coming on the scene. And to your point, we could do 14 drugs for rare diseases, saving a few thousand lives. But AI actually would allow us to say, like, instead of looking at these few diseases, we actually can look at all 4,000 drugs and all 18,000 diseases and let AI actually give us score globally, every drug, every disease in a way that one lab never could, one person never could. And so that was the big.
A
The whole school, if you dedicated, the whole school couldn't do that years.
C
It would be impossible if you to do so. Three years ago, my best friend from medical school, Grant and I and Tracy Secor, we co founded Every cure, this nonprofit, with the idea being that we want a nonprofit that's on a mission to save lives with the drugs we already have that's here to unlock the potential of the treatments we have to treat the diseases that a us. And we use AI to actually quantify every drug to treat every disease. So there's 4,000 drugs, 18,000 diseases. That's 75 million possibilities. If you tried every drug in every disease, you do it 75 million times. We get a score from 0 to 1 for every one of them for how likely it is to work.
A
Yeah. So what's the max out of that 0 to 1 range? I read that and I was just curious, what do you see normally or what's outrageous? Like a 0.7 is like, whoa, we got something.
C
It's a good question. It's a fairly linear scoring system, so there's actually a lot of 0.9999. The idea being that we want to look at the 0.99. The whole point of the score is to always say, like, what are the things at the top? Because if you start with Castleman's only, it's like, well, you might find the best drug for Castleman's, but is that the best drug for humanity to use? Is that the best match between a drug and a disease? But if you do this all versus all to your point, like you can look at the things that are the 0.99s and you come across things where like really. But then you dig into it deeper and you figure out how to do.
A
This vitamin that you've discovered had an impact on non verbal autistic kids. It seems impossible.
C
Yeah. So a portion of kids that are non verbal and or have other neurodevelopmental challenges, often in speech delays, they actually can have a antibody against the folate receptor. So folate is important for brain development. And in order to get folate into your brain, you need this receptor to be functioning. But if you have an antibody against it, basically the vitamin doesn't cross into the brain. These kids can have what's called a cerebral folate deficiency. And so, interestingly, there's a derivative of folate called folinic acid. It was made for people that are on methotrexate chemotherapy and it's been around for decades. But that derivative of folate can actually bypass this blockage at the Receptor and.
A
Can get into the brain, can leapfrog this whole.
C
Yeah, there's something called the rfc, which is a channel right next to the folate receptor. And so if the folate receptor is blocked, but if you give the derivative of folate, it can go through this channel. So basically, leapfrog get in the brain. And that was a really important discovery that humans made.
A
Let me ask you really quick. So that makes total sense. There's this thing inhibiting this vitamin required for this part of the brain to function. But in the absence of that, wouldn't that portion have already been so atrophied it couldn't be brought back? Or it's just there and it needs that as fuel?
C
It's a good question. We don't know the answer to it. All we know is that work's been done to show that some of these kids have too little folate. We know that the reason they have too little folate is because the antibody receptor. And then the really interesting thing is that there have been multiple clinical trials now, all relatively small, that have shown that giving this derivative folic acid can improve verbal communication. These kids.
B
Is it just a pill?
C
It's just a pill, yeah.
A
Give the example. One kid was nonverbal for five years.
C
That's Ryan. Ryan was basically not for five years. He could do something called echolochia, where if someone said something to him, he could repeat it back to them, but he could never actually share his own. He never made the executive communication where he made the decision. He had receptive communication. So he had a lot of things in his mind that he wanted to say, but he couldn't say them. Within two weeks, starting Luca Vorin, he told his dad, for the first time ever, a statement. And he said, daddy, I love you.
A
Oh, that would have killed.
C
Like, I cried for the next 15 minutes like I couldn't do anything. Imagine, he couldn't even leave the house.
A
His first sentence would be like, I want to go to Target.
B
I think, you know, he's been stuck.
A
Trying to say that. And also, like, should Ryan have had behavioral issues over the years? Of course, if you had all your. And you couldn't fucking get them out to you, I would rage.
C
Could you imagine?
A
But there's been multiple success stories.
C
There has multiple success stories. Next to. There's another patient, Mason, who within three days of starting it, he said his first word. And just thinking about what my kids would say, his first word was more. And I feel like that's all my kids would ask me for, more. And I was like, that's exactly what my kids. My kids are more, more, more, more, more.
B
That's very human.
A
Me too.
B
Oh, my gosh. That's so incredible.
C
Yeah. And so, like, this is why we wanted to start every cure, because there's things that are out there, and I love that. Every cure in AI can help us discover new treatments, and I can share about some that we've discovered. Literally, it's like, oh, wow, this has never been used. That's amazing. But sometimes it just uncovers what us humans know about, but we just don't put into practice.
A
Yeah, I want to hear those two things. I want some more examples. And I also want to know. I keep reading you guys train this mod.
C
Yeah, but how the fuck do you.
A
Take this tool we have and actually get it to go through every single medical journal ever written? How do you construct that? That's its own breakthrough.
C
It is. So we utilize something called biomedical knowledge graph. So a knowledge graph is a way to basically construct and bring together lots and lots of information from disparate places. So imagine a knowledge graph would be if we had on the wall every drug, every disease, every gene, everything we know about medicine. All is one node each. And then you've got lines connecting all of them based on the relationship, relationships between them. So we use every paper that's ever been written, all data we can find online, anything that we can find will fill out this graph. So every concept plus all the relationships between them. So it's like Celtuximab treats Castleman disease IL6 elevated in Castleman's dis. But imagine that for everything on this graph. So now this serves as the perfect ingredients to then train machine learning algorithms, because we can say, you know, this whole graph here, this drug works for this disease, this drug works for that disease. And we train it on the known treatments. And what it'll learn is that there was a paper that was published three years earlier, like in angiosarcoma, showing that this drug might work work in that disease. And it did. And so understand these patterns. And then we ask the exact same algorithm, now that we've shown it, this drug works for this disease. Now give us a score from 0 to 1 for how likely every other drug is to treat every other disease based on these pattern of connections.
A
And do we owe the Scandinavians the biggest debt of gratitude? Aren't they the ones that have kept the best medical data and made it. It's not public, but it's public. It's obscured, but it's all There.
C
Yes. Northern Europeans have done a great job with electronic medical record data.
A
These, like, epidemiological studies in five seconds.
C
Absolutely, yes. Everyone's in the same database, which a lot of countries we don't have that.
A
I know we all have privacy concerns, but there's got to be a way. Everything I've gone through with this whole psoriatic arthritis thing, like, I could save someone years if you could access my thing and just not know my name. I feel like we need to move towards that.
C
Yeah. Why is this not happening on its own? Like, what's broken about our system? And I think there's a couple things that have just completely shocked me. So, first of all, those 4,000 drugs we have, 80% of them are generic, which means that once a drug comes generic, anyone can make a copy of that drug. The exact same drug. It's the same name. And when you have 10 people making the exact same drug, the price plummets, which is good for our healthcare system. It's not a cheap drug. But now it's like a penny a pill of profit per sale. And there's 10 different companies all selling what one company used to sell. So you might find that that drug could work for a million people with another disease, and no one will make any money off of that. The depressing thing is that that shouldn't matter, but it does matter. It's not that people are hiding, it's just that if you can't make any money off this thing, you can't spend millions of dollars doing clinical trials and then actually raising awareness about it somehow. 80% of the drugs we have, there's no incentive to find a new use, though. They're there and they're safe, and we know how they work, and we know everything about them. And they're the things that are perfect for a knowledge graph because we got a lot of knowledge about them. Of course, everyone's using AI to find new uses for medicines, but no one's using AI to find new uses for old medicines. And so that financial problem is huge.
A
So, real quick, before you move on to the next one, what's the solution for that one?
C
We feel that the solution is to create a nonprofit that doesn't have to be driven by profit. So we've got this financial problem, which is that it's not profitable to find a new use for an old medicine. And then on top of that, we have an issue that somehow no entity has taken responsibility to be like, I know that there's this market problem over here, but we're the NIH or the FDA or we're some entity. We're just going to do this. Like, we're just going to find new uses for medicines. And so there's just been this huge gap. And then to your point earlier, there's also never really been the technological capability to really do this at scale. Maybe we can't blame the system too much because it's only recent that the system could even address this. But when you bring those three things together, we have this horrible situation where there's all these drugs that could help people, all these people, people that are suffering and no one doing the work to bring them together.
A
But you're here now.
B
Thank you.
C
Until every cure.
A
Okay, so give us a couple more. I read an article, maybe in the New Yorker, about Joseph Coates.
C
Joseph was diagnosed with a rare cancer called Poem Syndrome. He actually was initially thought to have Castleman Disease. And so that's how we initially got connected. He came to a conference and I got a chance to meet him. His diagnosis was changed, correctly to Poems. And a few months went by and I hadn't heard anything about how Joseph was doing or what going on. And then his girlfriend Tara reached out. She said, david, since I saw you guys last, Joseph got really, really bad. He's in the ICU right now and he's on life support. This was a Friday, and by Monday, the doctors are going to take him off of life support and put him into end of life hospice care. And I remember just being so shocked, like, oh, my gosh. I saw him just a few months ago. He has so much life and energy and love and just heartbroken for it. And Poem syndrome is a condition that I mentioned is in the sort of same family as Castleman's and Myoman. So I knew enough about it to where I felt comfort, really digging in to see, like, are there drugs we could recommend for Joseph? I know that his doctors are ready to give up, but can we just try something? And so I was able to get in touch with his doctor on that Saturday, and his doctor graciously called me back. On a Saturday, I recommended three drugs that are typically used for multiple myeloma, which again, is a similar cancer to Poem syndrome that doctor hadn't considered. In hindsight, it's like, let's be creative here. Yes, there's nothing for poems, but, like, let's look to the side of poems. Thankfully, he listened to me and he's like, well, I'll talk to the family and I'll talk to my colleagues. Maybe we'll try them. But he was actually very worried about the fact that the chemotherapy that we were recommending was going to kill Joseph. And I talked to him, I said, but you're going to take him off life support on Monday. He's going to die from his disease. Let's give him a shot. Let's try this. He made the decision to try these three drugs. And we just sort of waited for the next few days, like, what are we going to find out? And then within a few days, heard that things started to improve. And I can't think of that.
A
You got that bottle of champagne out?
B
Oh, no.
C
Exactly, exactly.
A
Cut the cigar tip.
C
He responded, he got out of the hospital. And then what's so amazing is that Poem Syndrome is a condition where if you can get into remission, like we got him into, we did a stem cell transplant for him. And so he's potentially even cured right now. So, like, I saw him just a few weeks ago and he's got the most incredible energy and he's so positive and he's got his life back. So, wow. I should also mention, this is an example. And at every cure, the way that we work is that we scan every drug against every disease or AI platform. Our med team finds the best matches and then we move them forward. We do lab studies, we do clinical trials with this whole systematic approach to fix this system problem. And then also in parallel, we get contacted by patients like Joseph and Tara. I struggle so much because I want to help them. I want to throw the Hail Mary in the same way that we did a Hail Mary for me.
A
Right.
C
And at the same time, we have this systematic process where we've got a 50 member team where we're using AI. We have to focus on that. Like, we've got this responsibility from a systems level because there's people at the other end of these drugs that we're working on that are waiting for solutions. But then there's also people who are reaching out to us, like Tara and Joseph. And that's probably the biggest struggle that I have is how do I balance the two. Because we've got an amazing team, but our team can't actually pursue every disease that we're contacting.
A
I hate to be crude, but you could be pennywise and pound foolish.
C
I think that's the right analogy here. And so what we have to do is we have to say, okay, if you match every drug to every disease, what are the best opportunities? We have nine programs already. We launched this nonprofit three years ago. We built Our platform over the first couple years. We've only been using the pipeline for 12 months and we already have nine drug disease matches that we're advancing forward from breast cancer.
A
And there's this lidocaine thing, which is bizarre. Tell Monic about this. Yeah.
C
So amazingly, there's really interesting, both laboratory and clinical data on the potential role that lidocaine injection could play in individuals with breast cancer. So lidocaine is the numbing medicine you get when you go to the dentist. Right. So injecting it around a breast cancer tumor before surgery. There was a large trial that was done in India of 1600 patients. And those patients who had it injected around their tumor before surgery had a 29% reduction in mortality at five years versus people who didn't. Lidocaine, like this simple substance, and it was published in a major journal called the Journal of Clinical oncology, one of the best cancer journals in the world. We're looking at it in our platform. It comes through our pipeline and we're like, people must be using this, right? It's like super cheap and it's widely available. But then we learned that no one is using this. The paper's out there, the study's done and the general consensus from a lot of folks is like, well, you guys should do another study, another seven year study and see how people are doing. The question is, do we need to do another study? Already proven, a randomized controlled trial, it's already going to be used in the surgery. And so we are doing more lab work now because the other thing the doctors like is to understand why something might work. Because like, oh, we injected liding and people died less. It's like, well, why? So we are doing lab work to try to figure out the mechanism. We've got some hypotheses. One is there's a lot of evidence to suggest that during the actual act of surgery to cut out a tumor, whether it's breast cancer or you name the tumor, that that's apparently a moment when a number of cancer cells become very migratory. They basically try to escape from the region. And it's partly because there's decreased blood flow, because there's trauma that's occurring to the area. So the thought is that there's actually metastases that occur while you're operating. It's actually migration. And of course this is a hypothesis, but it's something we're studying. So the idea for how lidocaine may work. Lidocaine is very good at making cells non migratory. It numbs it, it freezes like it stops it from moving. The thought is that maybe we prevent what would have been a future metastasis to your liver or you name it, from being able to get out of the space before the surgery happens.
A
You're like kind of paralyzing, paralyze it.
C
And you actually do the injection eight to 10 minutes before surgery. So you're like paralyzing it, then you cut it out. And at least in these patients in India, it was a game changer.
A
We trust India.
B
Yeah, we like that.
C
So these are the kinds of things that we would have never thought to look for.
A
One that blew my mind is Botox in the Frowning is a cycle. As we know, the people that were famously documenting all the face shapes were giving themselves emotions and this is a two way street. And just numbing the ability to frown can have an impact on depression, maybe. Crazy. Yeah.
C
So this idea with Botox is there's actually have been clinical studies that for about three or four months after a Botox injection right here between your eyebrows, there's improvement in mood.
B
It's getting wild.
C
Right. And so we got to figure this stuff out. I mean, we actually just talked through two of our nine programs. But one of my favorite ones is this rare condition called Bachmann Bup. So kids are born, born on feeding tubes. They are unable to move. It's a horrible condition. And it's because they have too high of levels of an enzyme called OCE1. And so what's so interesting is that African sleeping sickness is a condition that involves elevated levels of OC1. So there's a drug called DFMO that blocks OCE1 for African sleeping sickness. Well, it turns out that OCE1 is also too high in these poor kids that are bedbound on feeding tubes. If you give that drug, DFMO to these kids, and there's now been about 10 kids treated, the earlier you give it to them in life, the more likely they might have their feeding tooth taken out. They might sit up, they can even walk. I keep saying this is why we started every cure. Every one of these is why we started every year. But this is it, right? It's like this super rare disease, this super cheap drug that's been around for decades. No one's ever going to do the work to get it to every patient possible. But we at everycure, we can do that. We can get involved in trying to diagnose more kids to make sure that more kids get dfmo. This is for us why we did this.
A
Well, okay, so if people Want to support every cure. What should they do?
C
Go to everycure.org donate to. Donate to us. Also, a big part of this is awareness, awareness raising. So thinking about some of the drugs we've talked about and even others that we're working on. Part of it is doing really good science, great lab work, great clinical trials. But another part is actually just getting the word out if you know someone who might be able to have this blood test, it might be helpful for someone in their family. So go into our website, learn about our organization, help to spread the word. I did a TED Talk that came out about a month ago spreading the word about that. These are the kinds of things that actually patients will benefit because we tweeted something. The work's already been done, the drugs are there.
A
So just married. How often does your wife come home? It's like, we gotta eat kale now. And you're like, how'd you find that out? My whole diet is basic whatever someone's told my wife that is good for us now.
C
Exactly.
A
And then, of course, people should read your book, Chasing My Cure. It's wonderful. It's rare that I can say this to somebody, but I'm so happy you didn't make it in the NFL.
B
Oh, my God.
A
Congratulations on not going to the NFL. We need to do way more than cte.
C
I knew we wouldn't make it through.
A
I was waiting.
B
We're just lucky that you didn't get it because you wouldn't be able to do all this.
C
Very true. Maybe there's a drug to repurpose.
B
Exactly.
A
Exactly. David, this has been a delight. And I hope everyone does check out your book and checks out the website, and totally grateful this is the work you're doing. And every time we're getting really negative and pessimistic about AI, it's also doing this. It's like doing this shit humans could never do. Can't comb through all that stuff. Thank you so much. Good luck with everything.
C
Well, thanks so much for having me. This has been so special. Thanks, guys.
A
Stay tuned for the Fact Check.
B
It's where the party's at.
A
Okay, so I have. I have huge Aaron updates. Okay. Okay. So Aaron was there for, I think, five days.
B
He already went.
A
He flew home this morning.
B
Oh, wow. So he didn't fall down.
A
Well, listen, in order, you know, each evening, I would FaceTime him.
B
Okay.
A
Even before he started. And I said, look at what. What's the game plan for this? Like, the second story Eve on the roof, you know? I said, you need to Rent like a bucket, do you? If you want to rent a bucket, you know, let me know, I'll figure that out. And he said, no, I think I'm going. I'm going. Harness and ropes.
B
Okay, I like that. But what's that mean? You. You put yourself in kind of a diaper.
A
Yeah. You put yourself in a leather diaper and then a nylon diap.
B
You use a carabiner.
A
Yeah. And then you hook off onto the roof.
B
What? What to what?
A
Exactly. So the issue with the house in Nashville is has a metal roof. So you can't do what he would have done when he was a roofer, which is like anchor it to the top, just screw into the wood. Oh, so he had to last through the chimneys.
B
What?
A
Yes. But this, this plan wasn't he. I think wise like I would have done. He just kept putting off the height.
B
Sure.
A
The really tall work. He just kept like working in the yard and work. Doing trees and doing like fences and stuff and just I think eyeing all week and. And so each night. But he's up and down a ladder. You know, he's doing a lot of ladder stuff.
B
Oh my God.
A
And then I would look at the cameras at the house just to see if he was lying anywhere on the ground, you know, and then I would FaceTime him every night, which was so fun. A Just to have an excuse to have to face FaceTime every single night. It's a good. I wanna make up a reason why I have to do that.
B
I think you can just. Friendship can be the reason.
A
I know, but there's something more organic about it. It was like, okay, good, you're alive. And then I'd hear about everything he did that day and. All right, so did you look at the pictures?
B
Okay, I see him on top. Wow, this is so dangerous.
C
Yes.
A
Aaron looks. He looks like an ant on top of the roof.
B
Who's taking these pics?
A
Chris, the contractor. Happen stop by for something else. He sees Aaron way on the top. Look at the one of Aaron crawling up.
B
I know. That's so SC d. I want him.
A
To almost be a decoration. Like, wouldn't it be funny if there was a person. We had a person like a dummy up there putting it on.
B
Yeah.
A
Okay, now if you go to the last picture in that group, do you see Aaron lying on the. Yeah.
B
On the roof.
A
Okay, so he did fall. No, no, no. Oh, no, no. Aaron.
B
And by the way, he's not wearing the helmet, so he does not get $500 for me.
C
Okay.
A
But look how happy is Zoom in on his face. This is textbook Aaron. So Aaron, he had this long rope, but the problem was is this, that the chimney is not centered to where he needs to be on the high point. So he's using this rope kind of diagonally. And he's in his mind, he's like, oh yeah, I map this out perfectly. Like if I fall, it's going to catch. Catch me on the second story. Well, no, the rope was longer than he anticipated and he fell down to the first story. But he did land right before he.
B
Would have gone on the ground.
A
Yeah. He has taught. I said, are you hurt? I was talking to him on my ride to my meeting last night. I said, you get hurt? He goes, oh my God, no, I feel great. No problem. Then he sent me this picture about an hour later from the shower. I'm gonna send it to you. And this is, this is from his harness.
B
No, it's not. That's fall.
A
Well, yeah, the harness tightening when he fell.
B
That looks horrible. He's hurt.
A
I know, but he just doesn't care. But I also know what it's like to be him, which is like this. This stuff just doesn't even register. It's like, I wanted to get those lights up there. I got them up there. I don't really care about the thing. Okay, now watch the video coming into the house and I'm gonna watch it with you. That's in fast forward. He's not really driving 100 in my neighborhood. He just wanted you to see what the neighbors have going before you saw.
B
What we have going. They do. Wait, that's yours?
A
Yes.
B
The yellow and the blue.
C
Look at this place.
A
It's like Descanso Gardens.
B
Oh my God.
A
It's truly Clark Griswold.
B
Wow, Aaron, can you believe he did such an amazing job?
A
It's like an amusement park. Chris is like, you should charge $20 for people to walk through your yard this Christmas. Can you believe I'm like, aaron, no one has ever over delivered this much. My expectations versus what he did.
B
That looks so good. It looks dialized. Like he, like he didn't just throw a bunch of shit everywhere.
A
Right. He put some real thought into it.
B
Yeah. Wow. Good job, Aaron.
A
So for people who don't remember our custom for Thanksgiving with our friendship group, we do something called secret turkey.
B
Yes.
A
I presume you've been assigned somebody.
B
Yes.
A
And have you been working on it yet?
B
Yes.
A
You have?
B
I have. I. I finalized my idea yesterday and I, I put it a little bit into action, but there's a lot more steps and I'm nervous about running out of time because.
A
Is it. It's next week.
B
Yeah, it's a week from Thursday.
A
Okay. I gotta get cooking on mine too. I have them. I have the base of mine. But then I need to get artistic on top of it.
B
I. You know, the rules is you have to make it okay. Right? Like that's. And I feel like customize well. Yeah. So I feel like I'm blurring the line a little bit this year on that a little. Okay. You two too. Okay.
A
Yeah.
B
I want to know who you have it. I don't want to know.
A
Yeah, I don't want to know either. You like spoilers or not? Lincoln loves spoilers.
B
Yeah, she loves that.
A
And I don't like it.
B
I don't either.
A
And she'll ask me like we're watching a movie I've already seen. She's like, what happens? And I'm like, I don't want to tell you.
B
I know.
A
Really want to know. Yeah, she really wants to know.
B
Yeah. It must be anxiety in a movie or something. Maybe.
A
Yeah. Or just impatience. I think more impatient.
B
That's interesting.
A
Yeah. I mean, that's a quality of mine. Impatience that I definitely think I passed on.
B
But you do. You don't want to know.
A
I don't. That might be a product getting older, which is. There's so few surprises anymore. It's true. In life you got to really kind of protect them. So like I never want to know. I mean, I virtually don't even want to ever open presents on Christmas. What I love is the anticipation.
B
I know. It is exciting.
A
Yeah. Post presence is sad. It's sad. Yeah. Yeah. It's time to make up an excuse for why you're going to Staples home.
B
Why you got to go to Staples. Yeah. Cuz yesterday I walked in the house and Lincoln was there and she was working on something and she was like, oh, oh, I want to show you. She showed me. And it was her secret turkey.
C
Yeah.
B
And she was like, I have. And she said. And she said, who do you have? Like, with. No, like I know we're not supposed to say. Like she just feels like we're going to say it.
A
That's right.
B
I did tell her.
A
You did?
B
Yeah. Cuz I felt kind of weird being like, no, I'm not. I'm not telling you.
A
Yeah. She cornered you.
B
I told her and I told her my whole idea.
A
Oh, you did?
B
Yeah.
A
Okay, well, I'll make sure to not ask her. I'll make sure to not find out from her.
B
Yeah. Don't let her tell you about mine.
C
Was it.
A
No, it couldn't have been done because when I got home last night from my meeting, she was just kind of finishing, and it was mind blowing. Like, I don't know what career exists in making dioramas, but, boy, that is her crazy superpower. She makes so many dioramas.
B
She's very artsy.
A
And the tree has lighting in it.
B
It's beautiful.
A
Beautiful.
B
Yeah.
A
I mean, her and Aaron, they could get together and really start a business. She could make a model of your house, what it'll look like. Look like when it's done. And then Aaron could execute it, and then you get the model.
B
I was thinking that then you have a small version of it, and it's.
A
Like 55, 000 instead of. Is that a 5 because of the model?
B
Oh, do you guys take down everything the day after Christmas?
A
Oh, God, no.
B
Okay. Yeah. Some people over, and we're done.
A
Those good for those people. No, you got to go after New Year's, man. That's how I got to be entertaining and having people over. Okay, so I have a correction to make.
B
Okay.
A
And this is. I'll take responsibility. Even though I think we were on the same page with what the lyrics were. Dax, I was screaming in my car. The N lyrics are, oh, who wears short shorts? We wear short shorts. If you dare wear short shorts. Ne for short, short shorts.
B
Nair for.
A
And they're using there as a verb there, even though it is a. It is a noun because it's a proper noun name of a product they are using as a verb. Nair for short shorts. Nair yourself Or. Or. Sure.
B
I guess it could still be the product.
A
So it's not Nair wear shorts.
B
Okay. Well, I'm. I guess I'm happy because that didn't make any sense to us.
A
I'm sad. I liked it more when it was Nair, wear short shorts. As if narrow shorts. Yeah.
B
I mean, I do think it's cute if there's little shorts on the bottle.
A
Big time.
B
That's adorable.
A
But I do. I do appreciate Taran Greydell correcting us.
B
I like that. Do we think Nair is still on the market, Rob?
A
Checking still have a website? Yeah, it looks like it.
B
Okay.
A
Oh, God.
B
I kind of feel like allegedly it had some. Some, you know, some stuff in it that was, like, not so great.
A
Well, if it's interesting, it burns your hair off your body, but it doesn't hurt your skin. What a product. You got to give your. You got to Tip your hat to the folks at Nair that they figure out how to burn hair off your body without hurting your skin.
B
I guess the question is, does it. Does it hurt your skin?
A
I remember using it once and it hurt my skin. Do you know what's so interesting about my unibrow?
B
Oh, yeah. What?
A
As it. I think it started coming in when I was like, in.
B
Is that how you say high school?
A
Unibrow? What do you say?
B
I mean, it is un.
A
Eyebrow.
B
No, you're right. But it's just. It sounds cute the way you're saying. I think I'm like, oh, she is. Have you seen her? She has a unibrow. Unibrow. I say unibrow, but that doesn't make sense.
A
Right. Because there's no A in uni. So I say it too. You say unibrow.
C
Yeah, unibrow.
A
Okay. And I want you guys to continue to say it that way. But I do think in this rare case, I'm saying it correctly and you guys are saying it incorrectly.
B
Okay, then the point is, I think it's funny. Okay.
A
Okay. My una or E brow started coming in probably ninth grade or something. I started getting insecure about it. Yeah. And I started shaving it.
B
Oh.
A
Which is dicing. And a lot of boys shaved it in my school, and you can see them be stubble, and it looks. It's terrible. So I was like, this doesn't work because you see it grow in.
B
Yeah. Yeah.
A
And then I used Nair.
B
I think you did.
A
Yeah, I think I did. And I remember my. In between my brows being very red and irritated and me thinking, oh, Jesus, do I have a. I have a burn now. Between. That's not better. Chemical burn. Chemical burn.
B
Because this skin is so sensitive. This skin is extremely sensitive. It's like silk. They say.
A
Is that what they say?
B
They say. And you don't want to be pouring chemicals on silk.
A
Never. Never.
B
Almost never.
A
I never put Nair on my silk. Even if I have a tough, stubborn stain on myself.
B
Yeah. You don't want to now. You never. I guess, like the boys in ninth grade weren't even thinking about plucking.
A
No. So then I switched to plucking.
B
Yes.
A
In my. Probably by the time I'm a senior or twenties or whatever. All this to say, monica, I don't do anything to it now.
B
And it's gone.
A
It's fucking gone.
B
Yeah.
A
And it's been gone for a while.
B
Yeah.
A
And I'm so confused because hair is just proliferating all over my body in the most offensive way. I Told you. It's like when I work out, half my workout is seeing different hairs because the light's coming from behind me and I'm in front of a mirror.
C
Sure.
A
I'm like, my God, I'm turning into a werewolf.
B
Yeah.
A
But for whatever reason, the uniture, the middle part of the unibrow.
B
Yeah.
A
Went away in. In a. In an era of great, great hair growth, so.
B
I agree, though, even for me. Like, have you had that experience? Yeah, it. I mean, every now and then I'll, like, have to, like, pluck a little bit, especially on the sides, but the middle is.
A
It's free. Done.
B
Yeah.
A
And it used to have some action.
B
Yeah.
A
Yeah.
B
I think there is a. Is something to. When you pluck a lot, they give up an area.
A
Yeah, they give up.
B
They give up. That's why people were so worried, you know, girls of my gen would over pluck our eyebrows like crazy, and it was just this, like, teeny, tiny, thin line. That was what was in.
A
Yeah.
B
Then there was a lot of fear. Once bushier eyebrows were back in, they would never come back.
A
Right.
B
If they did, they kind of did.
A
Yeah.
B
For me, anyway. But yeah, the. The uni is retired.
A
It'll retire. It retires. I wonder why it thinks you need it in your youth and not in your old age. Must have been a very attractive thing at some point. Maybe it showed your virility or something.
B
Well, testosterone, sure. T. Very virile.
A
Yeah.
B
Interesting.
A
But mine's gone.
B
Do you think? Yeah. At one point, like, the female unibrow was considered hot. Yeah, I guess. Frida.
A
Frida.
B
She was hot.
A
Yeah. May almost had it. And she looked great. Like, she would. She would. On Parenthood, she had bushy eyebrows and she would comb them towards each other.
B
Oh, yeah.
A
Yeah. And it looks so cute.
B
Yeah.
A
Yeah. You just. I mean, you really. The power to decide you're cute and it's infectious is really one of the miracles on earth.
B
What if they start doing, like, imprints? Yeah. Merkins.
A
Stay tuned for more Armchair Expert if you dare. We are supported by Walden University. You know, a lot of people hit this point where they're doing well at work, but there's this nagging thought about taking that next step, maybe going after something they're really passionate about or finding ways to. To make a bigger impact. Walden University has been helping working adults figure that out for over 50 years. They help people get what they call the W, Those wins that actually move you forward and create real change in your life, career and community. What's cool about Their approach is tempo learning. You're in control of your timeline. No weekly deadlines breathing down your neck. Just the flexibility to progress at whatever pace works for your life. And their faculty aren't just academics. They're people who've actually done the work. They teach practical skills through real scenarios. So you're learning how to make a genuine impact. If you've been waiting for the right moment, this is it. Head to Waldenu. Edu and take that first step. Walden University set a course for change. Certified to operate by Chev.
B
Okay, we gotta talk about it.
C
Okay.
B
Skims has a merkin.
A
Yeah, tell me more. Tell me all about it.
B
Skims has a thong. The front is covered in hair.
A
Okay.
B
And then there's different colors and there's different textures. There it is.
A
Interesting. So blue is an option.
B
Well, I think that's black.
A
Is that okay? Yeah, photographed a little blue, but that's okay. It did. And the other one looks like camel hair.
B
Yeah, one's red. I don't really understand that.
A
Well, that's red on the head. Firing the hole.
B
Oh, that's a red carpet. Curtains.
A
Do the curtains match the carpet?
B
See how they're different textures? Like one's curly, one's straight, one's like fuzzies.
A
Yes.
B
By the way, you can. You can't get any of these.
A
Oh, you can't?
B
No, they're all sold out. Which I find I have to be. I love Skims and I want them to send this to me.
A
Yeah, send it to Monica. I was gonna say I want to see someone in them. Obviously not you. That would be in the realm of. What was that? What? Were you going to have to put your thumb in my butt to save my life as a coworker?
B
The things we talk about.
A
So, yeah, I want to see someone in this. Maybe Rob.
B
Okay.
A
To see Rob in this.
B
I think you should see Kristen in it.
A
Yeah.
B
Because that's the best case to know if, like, it actually is erotic. Yeah.
A
Yeah.
B
It says it's an actual pair of underwear.
A
I mean, anything's erotic.
B
It's called faux hair Micro String thong. It's totally sold out. I would like Skims to send me one. Now, I do have a question. Like, I've never seen a red headed pube.
A
Huh.
B
Would it possibly be that red? No, it wouldn't.
C
Right.
A
Well, I've had some redheaded lovers.
B
Yeah.
A
And I've had the great pleasure and joy of seeing red pubis. They're lovely.
B
But aren't they more orange?
A
Yeah.
B
Okay. That would be my Guess even red hair isn't that color.
A
No. Unless it's been augmented.
B
Okay. The one I would be. I think I should try.
A
Yeah.
B
Is well blonde though.
A
That's kind of mixed messages.
B
It's like fun mixed messages.
A
Yeah, yeah.
B
They have like a white blonde one. They also have. Let me look. Let me see what I want.
A
Okay.
B
I want two. I want. I want three.
A
Okay, great.
B
I want the Coco blonde straight. That's this.
A
Oh yeah, great. Exciting.
B
Okay, then I want cocoa ginger curly.
A
Oh, sure.
B
Okay. Okay, then I'm interested in cocoa brown straight.
A
That's the bottom. Bottom one there. Yeah, that one looks a little coarse. Doesn't it though? Like horse hind does.
B
But to me that looks the most real. But it's not my coloring, so I think that'd be interesting.
A
Yeah, that could be fun for people. Keep them guessing.
B
And I. This one is closest to me. That. That middle one. Cocoa black curly.
A
Uhhuh. So that's what you. Oh, wow. Rob, we have a real cocoa black curly. Actually, extra close up of the.
B
The brown.
A
It looks beautiful.
B
It looks itchy.
A
Yeah, it looks like. Hey, Stabby.
B
It really looks like pointy.
A
Well, you'll have to send those to Monica and then we'll get a full update on.
B
Please send me these. Cocoa black curly. I would like. Because I want to see how realistic it is.
A
Well, there's got little hints of gray hair in there.
B
I know.
A
That's fun.
B
No, elderly. That will depress me.
A
People's pubic hair does turn gray.
B
I know, I've heard that.
A
Mine hasn't yet, luckily. Still look youthful.
B
Wow. Will you let us know when yours starts to turn.
A
Turn gray?
B
Yeah.
A
Be a sad day. I'll report it. There's that old allegory. There's a very famous story, right. About a king with one gray hair. As soon as you get a gray hair, you can no longer be king. Do you know this is a very famous story?
B
I don't know it. What happens?
A
He's either. Well, he can't be king anymore. And he might even have to. To die. I don't know. Or turns it over to his son immediately when there's a gray hair. So he's living in this great fear of one gray hair.
B
Oh yeah.
A
And that teaches you some kind of lesson. But I don't know what it is.
B
It feels like you should be afraid if you're going to get killed or dethroned.
A
Yeah, it's a legitimate fear. Yeah, but it's supposed to teach you an important lesson. Messenger of death. Sent by the God of death. And the king immediately understands. The implication is youth, middle age and old old age are coming to an end and death is imminent.
B
I still don't understand the lesson.
A
The core moral of the story is that even a long life is too short to waste on mere worldly pleasures and power. One must recognize the signs of aging, immortality, and dedicate oneself to a life.
B
Of wisdom and righteousness.
C
Ah.
B
Interesting.
A
Okay. Wow. This is a ding, ding, ding. This is really ringing a bell. Ooh.
B
Okay.
A
Okay. So my weekend. Now I'm going to violate it, but I'm not really violating it. You might think I'm violating it, but I swear I'm not, okay? Because I'm not telling any of the people involved.
B
And that's the key, okay?
A
And no one involved in this will listen to this, nor will it get to them. So my weekend was 100% of service.
B
Great.
A
We had a thing on Friday night. I had to drive to sit through. I had a volleyball game. Then I had a birthday party. I had to drive someone out there. Then I sit in my car for an hour and a half while. So was at a birthday party. Then there was a show, a thing at the. I mean, just. It was the whole weekend. And I. I found myself wanting to call attention to what a sacrifice I had been making. That was my instinct. And that I. I wanted it to be known that I hadn't done anything I wanted to do this weekend.
B
Right.
A
And I remembered my great therapist Mark, telling me, listen, as a man, you can think this, but you shan't say this. You shan't ever say, say what about me? And that's solid advice for a man.
B
I like that.
A
Yeah. It's. It's the path we need to walk, us men, and it should be walked. And I just kept hearing the voice in my head all weekend, like, you're not going to mention at all that you haven't done anything but drive people around on your limited two days off.
B
Yeah.
A
And I achieved that goal. And then on the flip side of the coin was I had done something abnormally generous for me, for virtually a stranger.
B
Okay.
A
And then I was like, and you can't tell anyone. And I was like, I'm going to call my mom and tell her. Oh, that's what I wanted to do.
B
Great.
A
Like, I'm not going to tell you my friends I did this. Right. I don't want my children to know. Kristen had to know because we share finances. And I had to talk myself out of telling your mom, telling my Mom.
B
Oh.
A
And I decided it's your old man. It's time to stop doing anything. Looking for and so that you'll be observed doing it. Applause Validation.
B
Yeah.
A
We love you. You're so good. When is it just going to be for you? Why don't you just do things that you know, give you esteem and leave it at that? That's a hard challenge for me. I'm embarrassed to admit.
B
Yeah.
A
Like to do things secretly that only fill me up and only. I. I know we're good.
B
Right.
A
Is. Is the. I think the last chapter you should. I should hope to achieve.
B
Yeah. That's great.
A
On my evolution on this planet. But that. That reading just made me think of that entirely. Like it's time for wisdom. It's time for other things.
B
Oh. That can.
A
For me in my life. It's time to just do things.
B
Yeah.
A
Quietly for me.
B
Yeah.
A
And it's almost. It feels point pointless. Which is crazy. That's how deep the exhibitionism of my soul.
B
It feels pointless to help if all.
A
If I only know.
B
Oh wow.
A
I mean it doesn't feel pointless to the person that I help.
B
Right.
A
Of course.
B
Yeah. Exactly. That should be enough.
A
But opening my imagination to a world where no one ever knows if I did something good. Yeah. Is your shockingly absent of the normal reward I'm seeking. Used to giving or. Or the. Just the operation.
B
Yeah.
A
I was really tripping me out.
B
Yeah. That's a great goal.
A
Yeah. And it's harder than I want it to be.
B
Yeah. This kind of circles back to something we talked about a few weeks ago. The give for fun and for free. Like that's what it is about.
A
I know. I know. I guess like I don't feel very judgmental of myself because like look again. We're like this super social animal and our reputation is everything in a group.
B
Yeah.
A
Are you benevolent? Are you selfish? Like these are key things we need to know about each other if we're going to trust each other. So naturally we want people to see when we're benevolent.
B
I know.
A
And we pray they don't see when we're selfish and shitty.
B
Yes.
A
Because we have to keep our standing in our group.
B
I know. But I guess the.
A
The like life or death.
B
The catch 22 of it though. And this isn't fair. But this is true. Is displaying your benevolent or generous like stating it has the opposite effect.
A
Huh? Yeah.
B
It makes people think like no you're not. Because you had to do that. Like. Like it takes away from the act itself.
A
I think people I Think there's some artistry to it. There is a way for people, for you to let people find out stuff you've done that's good. That isn't overtly braggy. Like, if someone's overtly braggy. Yeah. It's immediately distasteful. But if you find out that Eric put a kid through college.
B
Yeah.
A
You're like super proud. Eric.
B
That's amazing. Yeah.
A
Yeah. And you would want to say to him, like, that was rad, dude. I'm glad you did that.
B
Yeah.
A
And so there's a way for Eric to get that out that's not. Not gross.
B
But I don't think so. Like, I. I think if he has a hand in saying it, it does take away. I think though, I. I think people would do find out whether you say it or not.
A
Yeah.
B
People will find out other people's level of generosity, whether they are affected or not or told or not. It's. I don't know. I think it's clear. Yeah. And it more. Way more clear when the person is keeping it to themselves.
C
Yeah.
A
It's just. It's a really powerful force.
C
Yeah.
A
To do things secretly.
B
Yeah. It's a good goal.
A
It is.
B
I like it.
A
And it's. But again, so me saying that there seems to be no reward on the other side of it is also me saying like, oh, this is interesting because I know there is a reward, but I can't even imagine it.
B
Yeah.
A
Which is interesting and fun because I'm so locked into this architecture of like, people approve of you.
B
Yeah. The reward.
A
That's how you know you're doing the right thing. It's like people approve of you.
B
Yeah. The reward is that you know you're good.
A
Right. And that's where that you don't need to be growth is. Is that why. Why don't I value it all if I think I'm good?
B
Yeah, exactly. Why do you need other people to know to think it if you know it's true?
A
Yes. Why doesn't my opinion about myself matter at all? Unless it'. Negative, then I think it's very important. Like when I'm self flagellating, I think I'm the. I'm the most astute observer of me in the world.
B
Right.
A
And so, yeah, I think I am going into it with a blind faith that one day I'll wake up and go, oh, this is the reward. And I love it. But it is a bit of a blind faith pivot.
B
Yeah. I like that.
A
I think I've been slowly moving in that direction. But for whatever this re. This weekend just was like. Like, compounded. Two things I would have normally done is I called my mom.
B
Yeah.
A
Yeah, Mommy. I was a good boy. I think I turned out to be good like you hoped I would be.
B
I think of all the people to tell. Your mom is safest.
A
Yeah. Which is why it was hard to talk myself out of.
B
Right?
A
Yeah.
B
Yeah, I think you would. You could have done that.
A
No, I'm gonna. I'm not gonna.
B
Yeah. Well, that's great. All right, let's do some facts. Okay. David Fagenbaum. I only have one fact. He was extremely factual.
A
He sure was.
B
The only thing I did look up was, does glioblastoma affect women more than men? Yeah, it's more common in men than women.
A
Oh, my God. Well, this is. This is why anecdotal info is misleading. It just so happens in my life, I've known a lot of women.
B
Yeah.
A
Yeah. None men.
B
Men are about 60% more likely to develop the tumor. While the exact reasons are still being researched. This. This disparity is not believed to be solely due to sex hormones. Anyway. It's very. It's not fully understood.
A
It's horrific. I know that part.
B
I know. I know. It's because. So our. Unfortunately, one of our very good friends has had multiple people affected by. By this. Died of it. She once taught me that. Like, it's, like, the shape of the tumor. It has, like, kind of spikies.
A
What are those?
B
Which make it hard to remove?
A
Oh, what are those? Kind of. They look like caulflowers, but they're pointy at the end, you know? They're beautiful.
B
Yeah, they're green, normally.
A
Yeah, they're beautiful.
C
Romanesco.
B
Cauliflower.
A
Romanesco what? Cauliflower. Cauliflower. God, is that impossibly gorgeous. Nature. Let's all give it up. Round of applause for nature. Isn't that impossibly beautiful?
B
It looks like tiny Christmas trees.
C
Tiny Christmas trees. Also coral.
A
Sea coral.
B
It is wild that nature made that.
A
Yeah.
B
And, like, nature makes pineapples. Like, that's crazy.
A
And the symmetry, you see, and crystals and all these things, like, the shapes it can make.
B
Yeah, it's pretty cool.
A
I'm really grateful for you. Nature. Nature. I hope you're a listener.
B
Oh, one other thing I did look up because he talked about folic acid for nonverbal autism. So when I got diagnosed with epilepsy. Yeah, he told me. So I. I got put on the Keppra. My doctor, my neurologist. Great man. Dr. Steven Sykes. Love him.
A
Beautiful man.
B
Beautiful man. He said if I'm thinking about getting pregnant ever, that I should take folic acid. Being on this medication and having epilepsy, okay. I didn't really know why. He probably told me, but my brain was a little fucked up, so then I just looked. Should you take folic acid if you have epilepsy? Yes. People with epilepsy, especially women of childbearing age, should take folic acid, but the appropriate dose must be determined with a doctor. Prevents neural tube defects and other birth defects in children and can also be deficient in those taking certain antiepileptic drugs.
A
I take it and I don't have epilepsy. Oh, you do? Yeah, it's part of my regime.
B
You like the taste?
A
No, I don't like any of it. I constantly am complaining at night. It takes me like 30 minutes extra to go to bed because of all the stuff I'm doing to try to stay alive longer, longer. And I lament it. I'm like, God, it's a lot of work.
B
You're actually taking time out of your life. What if we added up the amount.
A
Of time and it was a push? I would rather have the TV time. All right, love you.
B
All right, love you.
A
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Guest: Dr. David Fajgenbaum
Episode: On Repurposing Medicine
Date: November 26, 2025
This episode features physician, scientist, and bestselling author Dr. David Fajgenbaum, whose remarkable journey includes surviving his own rare disease (idiopathic multicentric Castleman disease) by discovering and repurposing an existing FDA-approved drug. Dr. Fajgenbaum shares his moving personal story, discusses the wide-reaching potential of drug repurposing for rare and common diseases, and introduces Every Cure, a nonprofit using AI to unlock treatments hiding in plain sight. The conversation is peppered with humor, honesty, reflections on grief, and moments of awe at scientific possibilities.
"The moment my mom got sick with brain cancer, all those posters I had about football and all the thoughts… they were out of my mind.” (Fajgenbaum, 11:31)
“I think that the way that I decided to start dealing with my grief was...you create something and you pour it into that thing. And this is actually something that a lot of men do when they deal with grief.” (Fajgenbaum, 14:53)
“I started feeling more tired than I ever felt before...Noticing lumps and bumps in my neck, which turned out to be enlarged lymph nodes.” (Fajgenbaum, 17:41)
“My idea was that if I could figure out what was wrong, I could then see, is there a drug that can reverse the thing that's wrong?” (Fajgenbaum, 38:06)
"It's been over 11 and a half years that I've been doing great on this medicine. No relapses, full health." (Fajgenbaum, 43:18)
“AI actually would allow us to say…we can look at all 4,000 drugs and all 18,000 diseases and let AI actually give us a score...something one lab never could, one person never could.” (Fajgenbaum, 54:13)
How the AI Works: Constructs a “knowledge graph” linking drugs, diseases, genes, and clinical data; learns patterns from documented treatments and scientific literature, then predicts new matches.
Successes:
Notable Quote:
"Every one of these is why we started Every Cure. This is it, right? It's like this super rare disease, this super cheap drug that's been around for decades—no one's going to do the work to get it to every patient possible. But we can." (Fajgenbaum, 69:21)
On Hope and Closure:
“As someone who loves someone going through that stuff, you're always really having a hard time debating whether or not you're going to snuff out their hope or help them get to the part where we have closure.”
— Dax Shepard (34:58)
On Medical Incentives:
“The people who are doing the work are not incentivized as the patients… but the people actually doing the work are not going to benefit from it the same way that they would a new drug.”
— Fajgenbaum (51:16)
On AI’s Potential:
“You can gather information all you want, but to actually find patterns within information is so time consuming and nearly impossible for a human to do.”
— Dax Shepard (50:15)
In classic Armchair Expert fashion, the conversation is candid, funny, empathetic, and intellectually curious. Dax, Monica, and David openly discuss the emotional weight of illness, the frustration of medical bureaucracy, and the real hope represented by AI and drug repurposing. Fajgenbaum’s energy, optimism, and relentless invention—fueled by personal survival—make for one of the show's most inspiring medical stories.
“It's rare that I can say this to somebody, but I'm so happy you didn't make it in the NFL.” (Dax, 70:14)
If you’re curious about how thousands of lives could be saved by using the medicines already on our shelves, or want to contribute to the solution, this episode is essential listening.
Episode draws to a close on a tone of gratitude, wisdom, and encouragement to look beyond traditional medical silos—a message as relevant for patients as it is for those in health care.