The Doctor Who Cured His Own Disease | Dr. David Fajgenbaum

You're in medical school, right? You were studying for finals.

I was a third-year med student. Yeah.

Third-year med student. What happens?

I basically stumble down the hallway to the ER.

Usually, it takes a while for the doctor to come back in the room with blood work. And and my doctor came back really quickly. Remember him looking at me and saying, "David, um, your liver, your kidneys, and your bone marrow are shutting down. We have to hospitalize you right away." They did full-body uh scans and found enlarged lymph nodes throughout my body. I was admitted to the intensive care unit. I was getting daily transfusions. I was on dialysis. Gained about 100 lbs of fluid because my liver and my kidneys stopped working. I had a retinal hemorrhage that made me temporarily blind in my left eye. I'd said goodbye to my family. My doctor said, "He's not going to make it through this." For 3 and 1/2 years, I was battling for my life. And every time I passed by CVS, my drug was in there. All I can think about is, okay, if my drug was in there that could save my life, how many more drugs are sitting in the CVS that could save other people's lives for other diseases?

This episode's guest has to be one of the wildest medical journeys we've ever featured. Dr. David Fagenbomb was a division 1 quarterback at Georgetown with his life fully mapped out until his mom was suddenly diagnosed with and died from brain cancer. This shifted his focus from football. He devoted himself to becoming a doctor to help people just like his mother. However, in medical school, his own body crashed. The diagnosis, Castleman disease, no cure. But Dr. Fagenbomb wouldn't give up. He turned the microscope on himself, chased every lead, and ultimately identified a cure that saved his own life. Now he's on a mission to save others, and he's sharing the full journey in his new book, Chasing My Cure. I'm genuinely excited for this one. David's story is unbelievable. Let's get into it.

Huge thanks to Cozy Earth for sponsoring this video.

I'm excited to speak with you, doctor. Excited to be here.

It's amazing to sit across from someone who has made themselves a patient as a physician. Usually, when we talk about that in the health care community, we're pointing it out as a way of a doctor self-prescribing opioids or something. And there there's a story about it negatively in the press. But the way that you've approached your situation really stands out and serves as a reminder as to why I got into medicine.

If we had to start with your story, to me it makes sense zooming into your college experience, everything you went through with your mom. I actually have a lot of empathy for you, not just from a humanistic side, but also from a practical standpoint. I too lost my mom during my medical school journey, my first year of medical school. So just a slight difference in the timeline, but I very vividly remember a lot of the points that you bring out throughout the book.

So what memory stands out most for you? I mean, you're in Georgetown, you're an athlete, the beast. What's going on in college for you?

Yeah. So, I was totally healthy and was um on this uh you know path to to be a college quarterback. I was that's all I could really think about was like playing college football and um yeah, totally out of nowhere got this call from my dad saying um David, your mom has brain cancer. And I just remember that it just that moment just changed everything for me. I went from, you know, just uh not really having anything to worry about in life and um wanting to focus on college sports to all of a sudden, you know, just being heartbroken.

And were you aware that there was something going on? Like in my scenario, I knew my dad was taking my mom for testing. He's also a physician, much like your father is a physician. And I I was aware something was happening, but I wasn't sure what. They kind of kept me in the dark. Was that happening on your side as well?

You know, in the couple weeks before I went off to college, my mom told me that she was having headaches and she was sort of just wasn't feeling right. And I kept saying, "Mom, you're just nervous. You know, your your baby boy's going off to college." Yeah. Like like you're going to be stuck with dad. Like like that's what we were certain it was. And and I sort of kept telling her that to to try to, you know, make her feel better. And then then of course, you know, found out this horrible news.

Yeah. And uh when they told you the news, uh how did you feel? What was that moment like?

I mean, I was I was just heartbroken. I remember the the first thing I did was get in my car and drive back to to North Carolina which is where my parents were and um they did the surgery the next day and um it was that quick. Yeah, this is really urgent um glioblastoma surgery and um that next day I remember um waiting in in the um just in the waiting room with my family and I remember um after the surgery they took us back and we were so worried would my mom still be the person that she was before she went in. Um, and I remember we pulled back the curtain and saw my mom there and her head was wrapped with gauze and she had um this bulb coming out of her skull um following the surgery. And um I remember you know wiping away tears um and before we could say anything my mom pointed to her head and said "Chaita banana lady." And we just like burst into laughter because my mom was making this joke that we needed. Like we weren't sure if she was going to be the same person that that you know that woke up that went that went into surgery and she came out with this like laughter and just like it was exactly what we needed. We were snot crying. We're like hugging. We're like mom, you know, it's still you. But like for me, I I think that's such a great way to to just highlight the kind of person my mom was. She was thinking, okay, how can I have my kids and my husband, you know, break their fear? Yes. In the middle of this really tough time. She was thinking about being a caretaker while needing folks to take care of her.

That's exact That's exactly right.

Yeah. Um were you already interested in becoming a physician or going the medical route at that time?

Not really. I I was really into sports. Um and I think I maybe thought maybe there was a path um sports medicine maybe. Um but yeah, the moment that I found out my mom was diagnosed with cancer and then started watching her battle with cancer, I just said, "This is what I want to focus my life on. I'm going to spend my life becoming a doctor and focusing on trying to help patients like her."

And were you uh following in following her journey, were you watching as she's going through the different treatments? She's going for multiple surgeries are you aware of the statistics behind glioblastoma? Were you doing research at the time? How much info is being shared with you?

Yeah, I um took an approach that is a little different than one than the approach I probably would take now. And that was I didn't ask the doctors what's the average survival. I said, "What's the longest anyone has ever lived with a glioblastoma?" And I heard there was someone who lived 5 years with this with the the aggressive form that she had. Remember telling my sisters, "Guys, mom was going to live 5 years in one day." Like she like if anyone can do it, it's her. And and that was sort of the the mentality we we took to this. Um, of course, given the challenges that I faced both in my mom's battle, but also my own, I take a different sort of approach, but that was that was the idea is, okay, she's going to live the longest ever.

I I could see why the optimistic viewpoint was attractive at that moment. You said that it would be different now. How would it be different now?

Now, I think that, you know, of course, given the challenges that that my mom went through, she she ended up passing away 15 months after her diagnosis. Um, so watching that and watching my doctors do everything for her and watching her fight with everything she had. Um, and then of course then going into medical school and seeing what so many patients go through and suffer and the pain they deal with. Um, and then in my own health, um, I've just learned the that health and or illness in so many ways feels so inevitable and it's something that we're all facing. And before I went to medical school, I sort of thought of, you know, getting sick was something that you had to be unlucky. It's, you know, bad luck to get sick. But I sort of think about life almost the other way now. It's like we should be really thankful when we have health because we don't know what's going to come tomorrow. And it's less about being unlucky when you get ill and more that we should be really thankful and feel lucky that we we do have our health.

Yeah. There's a great quote uh of a writer that we're working with to try and create a new age medical drama that is accurate similar to vibes from the pit uh the medical TV show on HBO. Um he says that at any given moment most people are not sick, but all those people will be sick and will have some sort of moment where they interact with our broken health care system and it's going to shock everyone because when you're healthy you don't realize what's happening. You don't realize the struggles that people are going through.

What was it like being a college age student with your family with your father who's a physician going through that journey of watching your mom? Were there issues with insurance finding specialists? What was that like?

Yeah, we we were lucky um from an insurance perspective and and a specialist perspective. We were um my family's was was in Raleigh at the time, which is really near to this great brain tumor center at Duke. So, we were lucky with access and finding the right doctors. But I was um really so surprised by just how limited options there were. This is back in in 2003, 2004. Um so few options for glioblastoma. you know, they tried one drug and then when that didn't work, there really was nothing left. Um, what's sort of really sad is to hear there really hasn't been that much progress in the last 20 years um for glioblastoma. But I just sort of had this very naive optimistic view of how I thought things were in health where and in healthcare where if you've got a problem there must be a solution for you and um and that we you know we've made so much progress in medicine we should be so proud. Um, but I didn't realize just how much further we need to go for so many of these diseases.

Mhm. How did your family react during that time? Did it bring you closer together? Were there arguments?

It brought us so much closer together. I mean, we were we were close before, but um going through that and um my mom was just amazing. She was um the most incredible person. And to um watch someone like her go through what she was going through, it just made us all want to be there for her, be there for one another. Um, and yeah, it it it really brought us together in ways that never could have imagined. And and that bond has has stayed that way since then.

Yeah. It seems like the through line through her illness was the word hope.

That's right.

And it instilled that hope in you. You even found a quote in her bag using the word.

That's right.

Why is that word so important to you?

I think the word hope is so important. Um because it can have a lot of different meanings and um you know there were times in my life where I was maybe too hopeful like you know saying okay she's going to live for 5 years in one day. Um, and then there have been times in my life where maybe I've needed more hope. But what I've learned from all of these experiences is that hope on its own is not enough. But when you can use hope to inspire action, then action can action can inspire more hope because you can make progress towards the thing you're hoping for. I think that's where hope is really powerful. When it's not just something that you, you know, wish for and hope for, but really it's something that drives you to take action.

Yeah. Because I I think about this quite often when I speak with my patients in explaining that they perhaps are lacking motivation in a given moment and I say well look action should precede motivation. Once you put on your shoes and you go for the workout and you feel the benefits of it perhaps the motivation will come then. But perhaps this is kind of a hack for that where if you're lacking motivation and action perhaps you can use hope to stimulate the motivation to begin the action. Is that something that you've done?

I think that's exactly right. I think that it's this circuit where it's, you know, being hopeful can lead you to take action. That action can lead you to believe that you're getting closer to that thing you're hoping for, which can then lead to more being more hopeful and taking more action and then more progress. And I think that sort of circuit for me has been a total game changer and life changer. I mean, I'm I think I'm I'm alive because of of that circuit between hope, action, progress.

And it wasn't that you were just going through this with your family. you actually expanded and said, "I want to help individuals that are grieving throughout their schooling process." What drove you to start that?

Yeah, just a couple weeks before my mom passed away, during the last conversation we ever had, um I she she first explained to me that she was really concerned about how I would be, how my sisters would be after she was um after she was gone. And I told her, "Mom, I'm I'm going to be okay and I'm going to start a support network for other grieving college students in your memory, and I'm going to call it AMF." And I had never thought about it before at all, Mike. Like literally like it came up on this. It's like and and my mom's initials or her name was Amarie Fagen. Her initials were AMF. I said, "I'm going to call it AMF. I don't know what's going to stand for. We'll have to figure that out." Um, and I'm also going to dedicate my life to trying to treat patients in your memory. I'm going to become a doctor. And I thought about that over the previous two years.

How did she feel about that? How did she react?

She um she she responded with with two words that um because of her brain tumor um finding words was really hard at that stage and speech was really difficult. But she responded with these two words that she sort of kept coming back to over and over again um during her battle. That was unconditional love. And that was just like all I needed to hear like this that for me um it was such a heartbreaking time in my life to to watch her pass. Um, but hearing those words from her and uh and know and and also seeing her smile. She she gave me a really big half smile, you know, because of the tumor. He couldn't smile on the other side, but she gave me the biggest half smile ever and she said those words and I was like, "Okay, this is my mission. I'm going to go do this."

And what was the journey like in doing it?

Sure. So, I started this organization, AMF. It stands for well, early on it was for ailing mothers and fathers. Now, it's actively moving forward. Um, a support network for grieving college students. We've helped thousands of college students all over the United States, dozens of campuses. Um, so early on, um, I started this at Georgetown. We support a bunch of students there. And then students from other campuses wanted to start campuses or chapters as well. And so we started a nonprofit organization called National Students of AM AMF. Um, and like I mentioned help students all over the country. Um, that was then um uh that organization uh then was merged with another uh grief organization um almost 10 years ago. Um, but it continues to have an impact on patients livid students lives. Um, and then in parallel to starting and growing AMF was when I really got focused on my medical or premed um courses and decided that that medicine is what I wanted to do. And and for me sort of back to this idea of hope and action. Um, I was starting to dream of being a doctor and being a part of discovering treatments for patients. Um, and that led me to study harder and feel like okay the more I studied the more likely I could be a doctor one day. Um, and uh, and I was just so happy that maybe I could help a patient like my mom.

You strike me as a person from these stories as someone who deals with hardship by putting in more effort, by putting in more action. Has that been a coping mechanism for you?

Absolutely. I think that there's um there's a lot of this, it's called like instrumental grieving, I think is the right term, where you sort of like channel your grief towards a thing. Um, and that thing, you know, uh helps make you feel better, right? you know, like like I was, you know, dealing with so much pain for my mom's loss, but I knew that if I could start an AMF chapter on dozens or even hundreds of college campuses that could continue my mom's life and legacy. People are talking about AMF being there for them, AMF, you know, being the shoulder to lean on and and the hand to hold. It's like, yeah, that's exactly who AMF was. My mom, she was that sort of resource. Now, she's continuing her life. And so, that that's exactly right. And then of course as I've gone on um in medicine and dealt with my own health challenges that same sort of concept of can we take a really bad experience um and and actually this is something my mom taught me um and that's that often times we're encouraged to look for silver linings in the midst of tough times. My mom would say David you shouldn't just look for silver lining you should look to create a silver lining. So looking for a silver lining is like okay like we've gone through this tough time and look how great it is that me and my sisters are tighter than we ever were before. Like that's a nice silver lining to find, but looking to create a silver lining is let's create an organization called AMF that didn't exist before that that can help college students.

My god, if a lot of bad things continue happening to you, I feel like we're going to get a lot of positivity in this world. Um, we just got to be careful because that's a fine line we have to balance. Um, in taking that phrase actively moving forward, what does it mean? What what should those who are perhaps in their deepest ages of grief feel in hearing those words?

Yeah, actively moving forward is all around this concept of it. It's not moving on. Um, it's actively moving forward with your life. It's it's continuing to, you know, cherish the love that you have for for that that loved one who's gone. Um, and it's also continuing to take action to move forward. Um, so I think that uh um it gets back to that hope and action concept where you know we've got to be hopeful for a future where we're um living the life we want to leave live but we also have to take actions today to get to get to that life we want.

What's the quote that you found in the pocketbook?

Sure. So um uh my mom had uh in her in her purse um and and I actually found this after she passed away. My dad and I were cleaning it out um a few weeks after her passing and we found this. Actually, it's in my water.

No way.

I take it everywhere with me. It's been um 21 years, but still goes everywhere with me. Um, uh yes. So, here it is. Um, it's on a piece of cardboard, as you can tell, and uh maybe a cardboard box and um it's got some tape on it uh to to to laminate it. It says, "Pope John Paul said it uh best in his address to the youth gathered at Damas in Kamaguay. Dear young people, whether you are believers or not, accept the call to be virtuous. This means being strong within, having a big heart, being rich in the highest sentiments, bold in the truth, courageous in freedom, constant in responsibility, generous in love, invincible in hope." And um for me, this was just so powerful to find because like she kept this in her purse and I I love this like I feel like just sort of is totally her like it's a cardboard box that she put some scotch tape on um to preserve it. Um, but the point being it it's all about living a good life, you know, um having a big heart, being uh rich in the high sentiments, bold in the truth, courageous in freedom, generous in love, invincible in hope. It sort of to me felt like this is like what my mom would say, Dave, this is what I want you to do, you know, after I'm gone. Like I want I want you to I want you to live these things. I want you to to do these things for other people. Um, and so yeah, I just I just love love this. Um, and I take it everywhere with me.

Yeah. Thank you for sharing that. Thank you for asking. Powerful.

Is that how she lived her life? Like in this positive, I'm going to help everyone out. Is that where you got it from?

She did. I don't know if I got it from her, but I but it's definitely the life that she lived. It was um it was all about um being there for others that were going through tough times and just this um not just a responsibility to help others but really um embracing it with enthusiasm like like we have you know we are fortunate that we have our health or we have whatever it may be that we have we have to take care of those people who don't have their health or don't have those things that they need and um but not just to do it sort of like oh it's something we have to do it something that she wanted to do she embraced that she loved it. Um, and uh, and I I definitely have have taken that on. I I I I feel such tremendous honor and and I know you feel the same way in being able to take care of your patients. Um, it is so much easier to be a healthy doctor um, than it is to be a sick patient. And it is such a privilege for us to have even the opportunity to take care of patients um, and and I feel so honored that um, I get to do the work I do.

Were there any stories or memories that come to mind in thinking back highlighting these attributes of her?

Yeah, I think that um one that comes to mind uh was from um the person who worked at the pharmacy counter um at our local pharmacy um when I went to pick up the prescriptions um for my mom after her diagnosis. So there was as you know probably 20 different drugs that were prescribed both chemotherapies but also to deal with symptoms postsurgery. Um, and I remember uh going to pick up the prescriptions and the the person working uh at the cash register said, you know, why are you picking these up for Ann Marie? And I said, well, Annie's my mom and um you she has brain cancer. Um, and I remember the the person working the cash register just bursting into tears. And I said, you know, you know, um why why are you in tears? And she said, well, your mom was always there for me over the years during challenges I've gone through with my husband, with my kids. Your mom's just been the person that's been there for me. And this was a single person who I didn't know that they had any connection to my mom at all. Just like sort of like these are the kinds of touch points throughout life that you run into and and still it's now been over 20 years since her passing. I still run into people in in in life but also get messages on social media about that interaction they had with my mom 25 years ago and the impression that she left. She was just she was incredible.

It's incredible how those stories stick around in our minds to keep people alive in our memories. Even that um memory that you have of cleaning out her pocketbook. Uh for me it was going through my mom's clothes and picking out what she would wear. You learn so much about a person to see these little tidbits of notes and things that that they choose to keep versus not keep. I even remember from my grandparents finding random poems that my World War II veteran grandfather kept about my grandmother. And I'm just like he struck me as a person who was a rock. He he never showed any emotion. Well, yeah, cuz he was showing it on paper, but it shows the richness that people have behind their lives. And I think it's special to be able to have insight uh into someone's life to that level.

I totally agree. What are some of the the lessons that that you learned from your mom and from the time you had with her?

Yeah. Um well, a big moment that uh really impacted the way that I am as a physician is how to treat patients and their families when they're going through these difficult moments. Sometimes, especially when we're spending, you know, 80 to 100 hour weeks in the hospital, especially during residency training, it's easy to get caught up in the mix and just say, "Oh, another person in the ICU passed. Oh, that person's on palliative care or hospice care." But really understanding that there's a human behind that and not just one human but likely multiple humans that are being impacted by every decision you make, every communication you have and you have to be thoughtful of it.

And it's something that I even uh shared with my fellow residents when we were and nursing staff when we were taking care of patients where I remember when my mom passed away like literally the day it happened. It was in Memorial Sloan Kettering Hospital where some nurses were laughing after my mom passed. Again, nothing to do with my mom. They're not evil people. They also need a break. Completely irrespective of this. Plus, it was hours after. But just hearing the laughs got us irritated because we're waiting for a death certificate or this paperwork. It's a brutal time. And I realized they're humans, too. But what can I take away from this to bring much in in your uh words, hope and action. Exactly. What can I bring to my medical education? So, when I had fellow residents be laughing, I would say, "Let's laugh and have a good time." Just away. Away. Exactly. And that thought process always helped me be maybe a little bit more empathetic than I would have been had I not experienced that level of emotion during that time. And I think that's what kind of decides who you are as a physician, your life experiences.

And this is a very funny and awkward metaphor to make because it doesn't seem applicable here. Right now, the number one job that kids want to have is to become a YouTuber.

Oh wow. I can't believe we're at this time in society. Very impressed.

But that's the new reality. They want to be YouTubers or influencers, what have you. And the advice that I give them because they oftentimes ask me how to become a big YouTuber is do something meaningful in life that you could bring to YouTube. Yes. Knowledge, experience, art, culture, something that you're bringing. Because if you're just going to become popular to become popular, it'll be unfulfilling. And even if you reach all the milestones of the viewership, the financial success, it it won't be as fulfilling as you'd hope. Yeah. Plus, it'll be valuable for society as as a whole. Yeah.

In being a doctor, med students often come to me or premeds and they say, "How do I become a doctor? How do I get accepted into these competitive residencies?" I give them some wacky answer like, "Go to Egypt and see the mummies." And they look at me and they go, "What is mummies? Is it studying the body? Is it what anatomy? What do you what advice are you giving me?" The answer is it'll just make you a more well-rounded human that will ultimately make you connect better with other humans. And I saw that initially when I was giving that advice, I was thinking more of how to get into a competitive residency. Oh, maybe one of the preceptors will like that you love jazz and they love jazz and you can connect on that level. And that was practically useful. But even a higher level, being able to communicate with patients on an empathetic level just from your own experience, you know, losing a loved one raises your level of empathy. Absolutely. Playing sports to the level that you were playing and now me being a professional athlete, understanding what it's like when you get injured and how it impacts your mental health more so than if it was just a traditional backache. Those experiences really shape who you are as an individual, therefore impacting your ability to practice medicine.

Are there any instances where you've seen your own personal experiences shape perhaps not how you handled your own condition, but your patients conditions?

Yeah, it's such a great great point. I mean, I think that um so I played football at Georgetown and you know, we're not known for our football at Georgetown, but uh but we play in the Patriot League, so I played against Ivy League schools and other Patriot League schools. Um I think that I'd learned a lot on the football field, um about dealing with adversity, um about connecting with other people. Um, you know, when you play football, um your life and your health is literally in the hands of of your teammates. um, you know, if they make a block or or or don't or or or do the wrong assignment or the right assignment that like your health is in is in their hands. Um, and so you can create these incredible bonds with people in part because um you you have to rely on one another so much. And it's it's the same way in healthcare. You're relying on every member of your healthcare team to help that person. And if you make a mistake or if you're not there, you don't do what you're supposed to do, your patient um, you know, is is their life is at risk. And so I think that there's a lot I learned from from playing football that um that helped me to to think about how do we how do I work within a team. Um, you know I went to medical school with the idea that I was going to treat patients like my mom and that um that my focus would be clinical medicine but actually as you know I I really fell in love with research and with repurposing drugs and finding new uses for those medicines. And so so now my my team is is is is a number of researchers and and patients are um are are those who we're working for, but it's not necessarily the patient right in front of us. It's it's a patient who might benefit from the drug a few months or or or years from now.

Yeah. So you got to be thinking about that delayed gratification of sorts of wanting to help. Um, I remember for me one of the things that impacted my medical education was hearing all the alarms when it was time for CPR to happen and actually having to be the one to say stop doing chest compressions. When I then was in my third year perhaps doing the simulation labs and hearing those sounds again, it brought me back to that moment and I could understand how someone can uh develop like a post-traumatic stress disorder or have a trauma response to a specific stimuli. I never really understood it. Conceptually, I did, but not on a guttural level.

Was there any moments from your experience with your mom that then impacted your education down the line in that way?

Yeah, I mean, every time I I saw a patient with brain cancer and I saw or or even outside of brain cancer, just patients that were on high-dose steroids, for example, and had a had a facial appearance similar to my mom's, it brought back so many of those emotions. Um, and and though I promised my mom to go into medicine, take care of patients like her, it actually was patients just like her that I had the hardest time taking care of. Um, and it was because of, to your point, um, th those emotions and reactions and actually mentioning CPR. the the very first chapter of my book is actually all about as as you know it's all about CPR and it's about CPR and hope and it's sort of the question is is when do you stop CPR and there is no guidance on like this is when you stop because it's different for everyone and it really the moment you stop CPR is when there's no more hope and of course with every single chest compression you feel like there might be hope and you know like you like and you never and you sort of never want to stop right Mike like like that's the toughest thing about CPR and trying to bring someone back is that is that you just feel like if your mentality is the harder you work, the more you do, the more likely you're going to get the result you want, you and I would still be doing CPR. I mean, and like we we want to like for every one of those patients because we want to bring them back, but there actually is a point where there is no hope. And for people like you and I, that's actually really hard to recognize that there actually is a point where there's no more hope.

Yeah. Not just no more hope, but perhaps harm.

Yeah. Yeah. Yeah.

Within our healthcare system, it's with with as much technology and innovation we do have, it's easy to overdo it. And we've seen that statistically, not just by health spending in the final years of life, but the number of interventions, the polypharmacy, the number of drugs people are on often times with perhaps too much hope.

Yeah.

So, how do you balance that when you have these discussions or perhaps internally with yourself?

It's so difficult. And I think it's so uh personal to to that individual patient and what they're going through. Um, you know in my journey I was 26 when I got so ill and um I had a dream for a future life and you know maybe family with with my girlfriend Caitlin at the time and um you know wanted to take care of patients and so I was sort of the mindset like I'm 25 years old like whatever chemotherapy it is that could be helpful like bring it all like please like let's keep trying. Um, and I was actually just chatting with a friend about this recently and how like my mentality was like, let's keep trying. We tried loads and loads of chemo and different um, therapies and and I was so sick um throughout this and and I searched for a treatment for myself and really never um never got into a moment where I wasn't like constantly taking action or thinking about the next step. But I was talking to my friend about the fact that I actually remember the last couple months with my with my mom were some of the most special months that I ever spent with her. And that was after we decided to stop treatment because she couldn't tolerate it any longer. Um, and we realized that that this was it. But those couple months were so special. We went through all of our old home videos together. We put them on DVDs. This was back in the early 2000s. And um, like that time together when we weren't going to doctor's appointments to figure out if there was a new treatment. We were going to doctor's appointments to to make her more comfortable and to give her more quality time with us. and just chatting with this friend, I was just thinking how um how difficult it is to sort of like put these two things together. Like the desire and the need for for quality time with the people you love and to not overmedicate with my like just absolutely just desire to like let's do everything we possibly can and realizing that um that that there is an important there's there's an important point that all of us has have to find that's the sort of the right right place. It's probably the biggest issue I see in society, not just from a healthcare standpoint, but our ability to keep two conflicting ideas present in our minds at the same time where like you should have hope through everything. Yes. And at the same time, there's a level where you need to stop and you need to reflect and cut back and focus on other priorities. And having that conversation, I've had this conversation numerous times with patients, families, patients themselves. It's not easy because a lot of times it's happening in emergency settings where you don't have a good relationship with the family. They don't know who you are. Here's some young doctor coming in and saying, "Oh, stop saving my family member." So our language that we use, the way that we have these discussions, trying to be as transparent as possible, I think is a good first step to at least beginning that dialogue because I think historically healthcare has been quite parent-like in talking to patients and telling them what they need to do as opposed to presenting options and then giving your expert informed opinion.

Um, in your own journey, have you seen yourself perhaps fall victim to thinking you should do too much?

Um I I guess where I stand now where it's been um you know 11 years that I've been in remission um and doing well um thanks to a lot of really aggressive treatments and discovering a drug that saved my life. I guess I can in hindsight say like no, I don't think I did too much. I'm glad I tried all those chemotherapies. I'm glad we did all the things that we did because I did get married to that girl Caitlyn. We do have two amazing kids. Um, I am able to dedicate my life to trying to find drugs in memory of my mom. So I'm glad we did all the things that we did in my case. Um, and to your point, there's this like really difficult balance and um I actually went through a similar sort of uh challenging balance with my uncle. He um was diagnosed with metastatic angiosarcoma back in 2016, which is a horrible form of cancer. um uniformly fatal within within a year and maybe two years at the most. And um it actually happened to be that he was diagnosed with angiosarcoma the same week that my brother-in-law, my sister's husband was diagnosed with ALS. And so I traveled down to North Carolina to be with my sister and um her husband and that was when this diagnosis occurred with my uncle. And so I went with my uncle to his doctor's appointment. At the doctor's appointment, the doctor explained there are two chemotherapies that we use um for angiosarcoma. Um, we're going to stagger them. We'll start with one and it'll stop working and then we'll do the second one that'll probably stop working within a few months and um you'll likely pass away in the next 3 to 6 months. And um I uh was very recent out of med school. This is 2016. and um I said well you know why don't we try to sequence his tumor to see if maybe there's some susceptibilities to existing drugs that maybe could be used for his cancer but why don't we stain for PDL1 which is a marker of maybe response to PD1 inhibition and the doctor sort of looked at me puzzled and was like you know medicine saroma nothing works for it and um it's incredibly unlikely that a that that genetic sequencing of the tumor would actually be meaningful and give you any information that could be helpful um and if his tumor came X positive for PDL1. That drug's expensive. It's never been used before for angiosarcoma. So, we wouldn't even be able to try it. So, I'm not going to do either of these tests. And um just given my own experience and the fact that I'm literally alive because of a repurposed drug, I um ended up finding another doctor to run the tests. Um, and it turned out that um the tumor came back really positive for PDL1 expression. There were no genetic mutations. Um, and as a result of that um tumor coming back positive for PDL1 um we started my uncle as the first patient ever um with angiosarcoma to be treated with a PD1 inhibitor pembrolizumab. He's now crossed nine years that he's been in remission on this drug. He's actually he walked his son down the aisle last September. He's walking his daughter down the aisle this September on her wedding day. And the reason I bring this up is because there was very much this idea that like look it's never been used before. I'm the doctor. I'm the expert in sarcoma at one of the leading institutions in the world and I've never tried that drug or a drug in that category. So there's no way that drug is going to work for your uncle's condition. But I think that the reality is is that well these drugs haven't been tried yet for my uncle's condition. And so what we can say is that there's no evidence because it hasn't been studied yet. But we can't say that it won't work. And so I think that there's this really delicate balance, right, in in the world of the unknowns, which during medical school we both learned that there's so much more we don't know than we do know. And in med school, there aren't multiple choice questions where it's like the answer is we don't know the answer. Like that would be really nice, right? That easy just idiopathic.

Yeah, that's true. It's idiopathic. Like, but wouldn't it have been nice? But but in med school, they don't ask us about the things that we don't know because we don't know the answer. And so I think we can sometimes get a sense as physicians that um that we know more than we do um about disease.

Did you ever make contact with that physician again?

I haven't yet. I need to. I you know my my uncle and I have sort of um joked about how um you know we're going to you know send him the invitation to the to the wedding and he's going to be you know surprised like I can't believe you know that Michael's still here because it's been so I mean it's been nine years um that he's been doing so well. And what I I love about Michael doing so well beyond the fact that I'm so happy he's doing so well um and so happy for my cousins and my aunt is that that discovery um that PDL1 was increased in his tumor led to PDL1 being tested in other patients and it turns out that about 18 to 20% of patients in sarcoma can respond really well to this treatment.

It's why did you pick that target? Were was there some historical reason?

This is a great question really important. Three years earlier in 2013 there was a paper published on only five tumors of angiosarcoma patients and four out of those five tumors were positive for PDL1 but no one had ever tried a PD1 inhibitor and now this is early days this is 2016 you know 2013 2016 um but it just goes to show and this is something that's sort of been at

The top of my mind, ever since Michael's life was saved by this PD1 inhibitor, and that's that there was a breadcrumb that was already out there from 2013. It was in the published literature, actually. I found it by doing something simple on PubMed, which is, of course, as you know, basically the search engine for medicine. I typed "angiosarcoma treatment." That's how I found this paper. Like, it did not require any brilliance whatsoever. Um, but it was out there, and that link was there between PDL1 and angiosarcoma. And there was already a link that PD1 inhibitors could work on tumors with this expression. So, um, it just, for me, was this eye-opener that, like, it wasn't that the world didn't know that a PD1 inhibitor might be useful. It was just that the world hadn't yet tried a PD1 inhibitor in patients, even though someone in the world had already figured out a potential breadcrumb.

I, I'm putting myself in the shoes of the listener or viewer right now. And it seems like if they ever face a medical condition where a doctor doesn't know, they should take to PubMed. They should start finding pathways linking medications to those pathways. Why is that not a good idea?

It's not a good idea because, fortunately, there is a lot of research that's being done. Like, like the good news is that, like, there is a lot of research being done by a lot of very talented and well-qualified researchers. Um, the other good news is that there's also, there are also organizations and and efforts utilizing artificial intelligence, like the nonprofit Every Cure that I lead, where we're actually, instead of humans manually doing this, you know, one pathway, one disease, one drug at a time, actually using AI to look across all drugs, all diseases, all genes, all proteins, looking for all these breadcrumbs so we can score from zero to one how likely every drug is to treat every disease. So, all that to say, um, uh, you know, thinking back to, you know, during my mom's illness, like those, those three months spending the time with her were so important. We shouldn't spend those three months like on PubMed googling and trying, drawing maps on the walls, right? Like, we've got to trust our healthcare system, and our healthcare system, and all of us in it, have to make sure that if there is a breadcrumb and if there is, you know, something connecting, that we, that we do the work to really evaluate them.

So, what should be the takeaway from that story for people? Like, what should they do? Should they reach out to rare disease organizations?

Great question. So, I think, I think there's really three, three main takeaways. Or, if you find yourself in that position, what should you do? The first thing is to find the disease organization for your cancer or for your rare condition. These organizations, they're typically started by patients with the disease or loved ones. They care so much about it. They're so well-informed. They're so connected. So, that's number one. I completely agree. Number two is, if you have cancer, um, it is really important to do genetic sequencing of your tumor. There can sometimes be genetic susceptibilities to your cancer. Let's say it's lung cancer. Um, there might be a drug that was developed for melanoma or for pancreatic cancer that might be effective for your cancer because of this shared genetic mutation. And so, so you should really, in my opinion, you should sequence all tumors for genetic changes. And then I think the third...

Is that not, I don't know, because I'm not an oncologist, but is that not in line with what already happens? And if not, why?

At MSK, for sure, or Penn, for sure. But there's a lot of places around the country where it's not already done.

Got it. Okay. And if you know, why, why isn't it being done everywhere?

It's expensive. That's, that's part of it. But I think the other part of it is that it's got a low hit rate. Meaning that, like, let's say 5 to 10% of the time you do this, you find something. Well, within medicine, we might say 5-10% is really low. But if you're one of those patients that could be part of the 5-10% and it could save your life, that's really high, right? And so...

But it's also 5-10% that you'll find a target. Then you also have to find the treatment for that target, which is probably even lower.

Yeah, it's, it's, it's that's right. So, it's typically considered that it's like 5-10% are actionable hits, you know, where there's something that, like, is is meaningful there.

But it's a, it's a great point. So, so it's, it's basically low odds. And that was sort of a bit of the discussion with, um, and the frustration I had with my uncle's doctor. And that was, he also explained that, David, it's a really low likelihood that this sequencing is going to find something that's going to be meaningful. And, and I understood that. But he also explained to me there was a 0% likelihood that my uncle was going to survive if we didn't try something. And so I think that that's the, that's part of the tension. Um, and so I think the third thing that I'd suggest is to make sure that you go to see the expert. It's so easy and it's so important. I also for us to really trust whoever the first doctor is that we see. Like we, you know...

You create a bond.

You create a bond. They maybe diagnosed you. Um, like, it's very easy to do that, and you should develop that bond. But you should also be prepared to go seek another opinion. Um, and I think us doctors, we need to make it more okay for our patients and really invite them. You know, this is your life. This is your health. Go see someone else. And, and I want to hear what they have to say. Um, so I think that that would be the third thing I'd suggest.

What's your take on, uh, the legality surrounding the Right to Try legislation that's been put out?

Yeah. So, Right to Try is really around these drugs that, as you know, are not yet approved for anything. Um, they're experimental, so they might be helpful in something new. The, that's really tough. Um, because, as you know, the vast majority of drugs that aren't yet approved that are in development will never get approval because they will either not be safe or they won't be effective for the thing that we thought they would be useful.

Or too expensive.

Or too expensive. Right? So, so there's, so there's a lot of things that are in development that will never reach humans, or, well, sorry, they're already in, in humans, but will never reach an approval. The group of opportunities that I'm really excited about are the drugs that are actually already approved for one thing, and we're trying to find another use for them. So, that term is al, is often described as drug repurposing or off-label use, where the drug's on-label for one thing, or trying to find a new, new use for it. And actually, my first exposure to it, way before I saved my life with a repurposed drug, was actually, um, towards the end of my mom's life. So, I mentioned that during those last few months when she was, um, on hospice care, um, we were spending such important, special time together. She wasn't on chemotherapy. But one thing that they did, um, a month before she passed away, when she was, um, really progressing rapidly, um, her doctor said, "Well, you know, I think she's got a lot of, uh, swelling around her brain. So, we could probably give her some dexamethasone to get rid of some of the swelling, and that, that might, might help her."

Just from a palliative comfort.

Palliative comfort standpoint. Exactly. And so, he did that, and it took away swelling, and she woke up, and she had a month more of, of, of quality life with us. And so, it wasn't treating the tumor at all,

Of course.

But it gave us a month that we wouldn't have had. And that was sort of the first time I was like, "Wait a minute, dexamethasone is just a steroid. It's not treating the tumor, but it gave us time." I mean, in...

I've seen that play out with even antibiotics where we, we're not necessarily treating the patient's condition to prolong their life, but if the antibiotics make someone more comfortable, it should be part of the hospice care, palliative care, etc.

Exactly. And so, that was the rationale for it. And then it gave my mom this extra month of life. And it couldn't have given her more time because the tumor was growing. But that was the first time I was like, "Wait a minute, dexamethasone, and it's helping my mom with her brain tumor." Um, but of course, this would end up being what ended up saving my life.

For individuals to play devil's advocate. You ask to get the tumor sequenced. It has the correct target that you were looking for against what that doctor was recommending. You try this treatment. It drastically shortens your uncle's life. Makes his final few months worse. Do you feel terrible?

Terrible. Absolutely terrible. Um, I, in that scenario, I would have felt horrible. Um, and I think that the important thing would have been if I had pushed him to do it. I think that's the key thing where it's, I, I would have felt horrible. And, or, but I'm not sure which one it is. Um, I would have really wanted to talk, and, and we did talk about, you know, what this means, right? Because PD1 inhibitors can make you feel terrible. Um, and, and they could have made, made those last few months horrible. And that was sort of that challenge I was thinking about in my own mind about my mom. Like, those few months were so special with her, and yet I had never even considered spending a few months like that during my own battle or in my uncle's battle. So, I think that, I think you're exactly right. And those cases do happen, right? Um, and so I think the important thing is that the patient is fully aware that in taking on a drug like this, like Pembro, hadn't been used for before for angiosarcoma, they're also taking on a major risk too.

Yeah. And I think about these days with the amount of misinformation that's floating on the internet, how much false promise already exists from even thinking about throughout the pandemic, people claiming that hydroxychloroquine would save them or ivermectin.

And to the average person, they're seeing someone that's somewhat of an expert saying that this might work. Their loved one is very sick. They're throwing everything against the wall. So, I'm thinking of like, how if I had to describe verbally what is the right balance that one should strike in this scenario, I don't have a good single through line there.

I don't either. I think that it's, it's evidence first, right? Like, that's the through line. But of course, the challenge is, is that it goes both directions. So, evidence first means, like, is there evidence that shows it works?

And is there a lack of evidence either way? That means that we don't know. And it's sort of like, it's sort of like, I think us in medicine and outside of medicine being able to follow, you know, where the evidence is clear that it works, but also be aware when there's just a lack of information. It's not that this drug's not going to work. It's just that we don't know if this drug is going to work.

And I guess the benefit of repurposing or doing off-label use is that you already have a safety profile to some degree or of expectations, so that it could better inform you and give you at least one layer of informed consent, uh, in which to make a decision.

Yeah, that's why I, I'm a much bigger proponent of of drug repurposing versus Right to Try because you're exactly right. These drugs are already approved for something. We know, we know the safety profile in the context of another condition. Um, so there's at least that one thing that's checked. Another thing that's checked is that, you know, that it actually does have a clinical benefit in at least one condition. Like, it got approval, you know, it works in one condition. So, the big unknown is, will it work in this new condition? And interestingly, um, between 20 and 30% of all prescriptions written every day in the US are off-label. So, doctors are writing off-label all the time. You do it all the time, right? There's things, steroids are not approved for upper respiratory tract infection. Like, for coughs, steroids aren't approved for that, but we write them all the time, right? Because there's a lot of things that are just never approved for that that indication. And of course, that's different than sirolimus for my Castleman's disease or pembrolizumab for my, my uncle's angiosarcoma. But, um, but drugs are used off-label a lot. And so you actually have information in a lot of cases on that drug being tried by another doctor. And so can you actually learn from the real-world use of those medicines? So that way, if and when it's you in those shoes, you can see, you know, did this work for people like me?

I want to play Shark Tank. I want to pitch you a business.

We rent you out to go with patients when they're going to get a bad diagnosis and you challenge every physician.

Doesn't sound very scalable, but...

Unless cloning technology becomes available, then, uh, then we...

So, you know what's funny is, um, so I mentioned this nonprofit, Every Cure, that we set up three years ago. Really, it is fully with the intent of making these connections, finding Pembro might be useful for angiosarcoma. Grading every drug versus every disease, there's 4,000 approved drugs and there's 18,000 human diseases. So, if you tried every drug for every disease, you would try 75 million times. So, we can use AI to actually score the likelihood of every one of those drugs for every disease. And then we can rank order them, the things at the top that AI thinks are really promising versus things at the bottom that are not promising. We use those things at the top as a starting place for us humans to be like, "Wow, lidocaine for breast cancer, leucovorin for a subtype of kids with a neurodevelopmental condition, like, let's look into it further." And so, we then do laboratory work, we do clinical trials, and we push it forward. So, in many ways, the idea of what we're doing now is, we want to find these drugs before you're at your last leg, before you need someone to come with you to your appointment. Let's find these treatments because the connections already exist to move them forward so that when you're diagnosed, we have a treatment for you, and you're not, you know, trying to throw a Hail Mary.

I obviously said that as a joke, but your family's got to be calling you to go with them to every doctor's visit. Is that happening?

I do go to a lot of doctor's visits. Um, yes.

Um, my concern about, um, the idea of using AI in these scenarios is not necessarily with my issue with AI because I know there are issues. But my bigger issue is AI takes existing knowledge and new knowledge that comes in, research breakthroughs about our fundamental understanding of how pathophysiology and physiology work. And right now, we're seeing in our administration from HHS, NIH, significant cuts to that research.

My concern is that people won't feel that now, and they'll think, "Oh, well, they're getting rid of dyes and whatever. This is all a win." But what they're not seeing is what will happen 10 years down the line when they go in with a rare condition and there isn't an option for them because that research wasn't done. Do you have any concerns about that?

Yeah, I think, I think you're exactly right. We are way behind when you think about like humans versus disease. There are 18,000 diseases. We have approved drugs for 4,000 of them. 14,000 diseases are winning the battle against us, you know, that we know of, right? And every year there's new diseases coming up. And it's like, we should be so proud of what we've achieved in medicine. I mean, 4,000 approved drugs for 4,000 diseases is like incredible. Like...

Well, then that's great time to ask this question. Do you think we're the unhealthiest we've ever been?

I think that the statistics suggest that we are the unhealth, the, the unhealthiest we've ever been. I think that the statistics, and you know, the data around what we've done in drug development, also indicate that we have also come up with more treatments than ever before, right? And so, it's sort of like, sort of counterintuitive, but we should be proud. 4,000 drugs for 4,000 diseases, that's, that's incredible. But we can't lose sight of the 14,000 we don't have treatments for. And so, anything that's going to slow down treatments for those 14,000. And by the way, even the diseases, the 4,000 diseases we do have drugs for, a lot of cases, there's additional work that needs to be done. Pancreatic cancer has treatments. ALS has treatments. They're not effective in a lot of cases. And so, there's a lot of work that still needs to be done. And so, pulling back any sort of resources or our, or advancement, I, I think is a mistake. What's exciting about the use of AI that we have is that, just as you said, AI is really good at looking at data that already exists, looking for patterns within data. And so, we build what are called biomedical knowledge graphs, which basically map out everything the world knows about every drug, every disease, every gene, every protein, all in one two-dimensional map. Then we train machine learning algorithms on known treatments. So, we know suximab treats Castleman's, insulin treats diabetes. We train the algorithm, say, "This is the pattern of connections of when a drug really works for disease." Now, go across the rest of the graph, the tens of millions of connections, to come up with a score from zero to one for how likely every drug is to treat every disease. And so, it really is able to leverage what us humans look for and sort of what makes a good drug for a disease, but then do it at scale in a way that humans can't do it. So, I, I run a lab at Penn, and our lab is really good at reviewing, you know, a dozen or so drugs for a couple of diseases a year. And like, we're really proud of that. And we actually are really proud of the fact that, in addition to the drug that saved my life, sirolimus, we've advanced 14, uh, repurposed treatments, including sirolimus, and so we're really proud of that over the last decade. But this kind of scale that you get from being able to do all drugs and all diseases with AI is just, is something that us humans can't do. And importantly, I think also to your point, we can't just blindly trust that, "Oh, if it's the top thing on our AI platform, that, yeah, we're going to give it to people." No, it's, it's a starting place for humans. That's how I think of AI as a scaling place.

Yeah, exactly. Uh, an inside baseball question perhaps, but...

How do, in training the AI with this two-dimensional graph that you describe, and you say, "Oh, insulin is a, is a medication for diabetes." Uh, how does it distinguish, or perhaps it doesn't, treatment of the condition versus cure of the condition? Because technically, insulin doesn't cure diabetes. So, like, how does it do that? Do you get weird results as a result of that?

It's a great point. So, we don't differentiate and, to sort of distinguish whether something's more symptomatic or curative. Um, uh, we actually train the algorithm on connections, and then we sort of let the machine learning algorithm figure out what's the, what are the patterns that is a, it's a good pattern versus bad pattern. Um, we do less sort of pre-programming. Um, but yeah, so that means that sometimes you get stupid ideas at the end, and then that's what us humans are here for. And so that's why I think it's so much more...

It's like a brainstorming session. It's a brainstorming on a big scale.

Exactly. Right. With massive implications, because, you know, we couldn't think, humans can't think, we can't compare 7, or we can't compare 75 million things. We just can't.

But you zeroed in on your condition, which we're going to get to. So, you were focused on ultra one thing, not every, not everything, you know, 18,000 or whatever.

Exactly. And I think that the, so I think the reason we need to do this, and the reason we need to do this sort of zoomed-out approach, is that, you know, we've got these 4,000 drugs for 14 thou, or for 4,000 diseases. We got 14,000 diseases with no treatments. And we know that many of these 4,000 drugs could be useful for many of the 14,000 diseases, but we don't have a systematic way, or we didn't have a systematic way to actually make these matches before. And, and really importantly, there hasn't been a financial incentive to find new uses for old medicines. So, 80% of all drugs are generic. Once a drug is generic, there can be many manufacturers. It becomes cheap, and therefore, there's no incentive to find a new use for an old medicine.

So, 80% of the drugs that are at our CVS, that are proven to be effective for at least one disease, we know their safety profile, they could potentially be useful in more, more ways. There's zero incentive whatsoever to find a new use. And so, it's not that insurance companies or drug companies are hiding these medicines. It's just that they're not incentivized to find new uses for them.

This is where that public-private collaboration really comes into effect, because in a scenario like that, there is potential to help a lot of people, perhaps less profit motive. That's where the NIH should be taking stabs at things that are not monetarily valuable but can bring big results and allow pharma to do the things that can bring them money and build upon their research, perhaps initial research that foundationally that they did.

Um, we have to, like, we've been talking around it for so long, but it's obviously the cure of your book, the cure of your life. You have, uh, your lovely little cartoon on your lapel there. You're in medical school, right? You were studying for finals.

I was a third-year med student. Yeah.

Third-year med student.

Studying finals. What happens?

So, I started feeling more tired than I ever felt before. And it was shocker. Yeah, I know. Right. Exactly. And I was on my OB/GYN rotation, which I don't know about you, but for me, that, like, the OB/GYN part, like delivering the first human baby into the world, for me, was such a pinnacle, right? Like, "Oh my gosh, this is incredible." Um, but within just a few weeks of delivering the first baby in the world was when, um, I started feeling more tired, which, um, you can appreciate. And then I noticed lumps and bumps in my neck. I didn't know what they were. Turns out that they were enlarged lymph nodes. Noticed fluid in my legs. I was a, a really healthy person, former college athlete. Very strange to see the fluid. Then really bad abdominal pain. And the fatigue got worse and worse over the course of a couple weeks. And so, I took my OB/GYN exam. Like, I took it in the hospital, and then I, I basically stumbled down the hallway to the ER, and, and I was like, "I've been sick for two weeks." They ran some blood work and...

Were you thinking like, "Oh, I have mono or something?"

Yeah. I thought maybe it was mono. I...

CMV or something.

Yeah. Like, it, I just, I kept thinking it was going to start getting better, 'cause every time in my life, like, you got sick with something...

And that's what you're taught.

Yeah. It's going to get better. Yeah.

Although there is the med student syndrome where you think you have every condition.

Well, that's the thing. And...

Were you doing that?

I was, I was telling my, my classmates that I was like, I actually said to my two, my two roommates who are two of my best friends, I said, "Guys, I think I'm dying." And they were like, "What do you mean? They're David, like, you're just, like, you're dramatic, med." But I'm like, "I'm like, not a dramatic person at all." But they're like, "Maybe just like you've read too many, you know, med school textbooks." Like, I was like, "No, I think I don't know what this is, but I think it's going to kill me." And, um, and so, then, yeah, when I went to the ER and they ran blood work, I'll never forget my ER doctor, and you'll appreciate this, um, usually it takes a while for the doctor to come back in the room with blood, with blood work, and, and my doctor came back really quickly. And, um, remember him looking at me and saying, "David, um, your liver, your kidneys, and your bone marrow are shutting down. We have to hospitalize you right away."

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What? I just took an exam. Like, I, I, I took a med school exam before I walked in. What do you mean? My liver, my kidneys, my bone marrow are shutting down. Um, they did full body, uh, scans and found enlarged lymph nodes throughout my body. I was admitted to the intensive care unit where, um, I was getting daily transfusions. I was on dialysis.

Wow.

Gained about 100 pounds of fluid because my liver and my kidneys stopped working. Had a retinal hemorrhage that made me temporarily blind in my left eye.

Oh my god. This was all with third year of med school.

Third year of med school, within just a few weeks. Um, no diagnosis. I'm just in the...

What's your mindset there, man? That's, I mean, I can't imagine.

Just terrified. I mean, I'm, of course, at the time thinking about my mom and what she'd gone through just a few years before. I'm thinking about, um, how I, you know, have so many things in my life I want to accomplish. I knew I was getting so sick. I was seeing numbers that I had only seen in people who had died. I mean, like, I wasn't very with it. But when I was trying to be with it, um, I noticed that...

Like, what your creatinine was elevated, your LFTs were off?

Yeah. So, like, a, like a BUN over 200, platelet counts of 8,000, like needing daily transfusions of he, of red blood cells because my hemoglobin was stuck between six and seven, like bad stuff. Um, that, that wasn't responsive to even transfusions. And of course, dialysis would, would improve my, my BUN and creatine a bit, but like, I was really, really, really sick. And, um...

How are the doctors treating you, given the fact that you're a med student? Any different?

Yeah, you know, a little different. I think that, um, I think they, they wanted an answer so badly. And it's interesting. Um, they, I think they were so focused on trying to, like, find a solution for me that, um, I just, and they couldn't. Um, and it was just, like, I think so hard psychologically for all of us because I was just getting more and more and more sick and fewer and fewer answers. Um, uh, I, and they started giving me high-dose steroids, you know, the cure for everything, as you know. Um, if you don't know what else to do, try steroids. And, and they did that for me. And over the course of about seven weeks, I started to improve to where I could leave the hospital.

And, um, I remember asking my doctor, like, "You know, what do you think this was?" And, and he was like, "I don't know what it was. Well, let's hope it doesn't come back because whatever it was was really bad." I mean, I'd said goodbye to my family about four weeks into it because my doctors said, "He's not going to make it through this."

And so, like...

What did your family say?

They were heartbroken. I mean, we, like, you know, bawled our eyes out. I had my, my best friends in the world come to Philadelphia and like march in my room one at a time, hug me goodbye. What...

I mean, just absolutely horrible and heartbreaking. And then seven weeks later, I'm just sort of like, better. And I'm like, "What the heck was that?" Um, but then, and I recovered at home for about four weeks, but then it came back again. So, then I, I, I had all of the symptoms come back again, still no diagnosis. Um, and, uh, second time around, um, and just to sort of get to this sort of doctor-patient thing, you know, I, I'd really trusted in my doctors to sort of find the solution the first time around, those, those seven weeks or so. Um, second time around, I was like, "Okay, well, we didn't figure it out last time. Like, I'm going to sort of try to like push a little bit or pull a little bit. I don't know what's going on." Um, anyway, I, my, my doctors were so tired of me with, with the second one. They're like, "Why are you asking for tests and just like, like, let us figure it out?" But they did eventually do a lymph node biopsy, and that lymph node biopsy is where the diagnosis came back of idiopathic multicentric Castleman disease. So, the biopsy was done because they thought maybe it was lymphoma, but it came back this very rare disease where you basically have this cytokine storm. Your immune system goes insane, um, for an unknown cause, idiopathic. You use that term earlier. We don't know the cause. You don't ever want a disease that's idiopathic.

Um, but with that diagnosis, and again, I was getting really sick, really quickly. Um, this time so sick so quickly that, um, when my doctors told my family, "I don't think David's going to make it." This is now, I was in North Carolina at the time. A priest came in my room and read me my last rites. So, November of 2010, um, said goodbye to my family again. Now I'm here, my last rites. Um, right around that time, I'd gotten the diagnosis, and my doctors gave me one chemotherapy, a drug called Rituximab. Um, sort of a, a mild chemo. Um, and then we waited. Um, and, uh, I was out of it, and I remember being really tired, and, um, terrified, and, um, remember thinking about my, my mom, and I just wanted to have a family with her one day. I remember I could, like, even picture, you know, what that would be like. And thinking about being able to help patients in my mom. And I remember just not really being at peace when I was sort of just being like, "I, I didn't get to do those things that I wanted to do." Um, and really being heartbroken. And then I remember just sort of going to sleep and thinking that that was it. Um, but fortunately, a couple days later, that Rituximab did enough to keep me around. It really sort of just balancing that because, like, okay, I'm going to make this very non-comparable, but as close as I can. When I have a musculoskeletal injury, and every day you wake up and you're like, you're hoping it's better, and you stand up on it, you're kind of guarding it. You're unsure if you're just feeling the pain that you felt the day before, and you're testing it.

But in a scenario where a priest is leading, reading you your last rites, how do you wake up in the morning and go, "Oh, I feel good?" Like...

I mean, it was, it was...

Were you trusting what you were feeling?

I, I just couldn't believe that I was waking up. It wasn't like, "How do I feel?" It was that, like, "Wait a minute, I'm here." And you would think that that would be like, "Oh, my gosh, I can't believe what I've been through," or, "I can't believe the pain." No. At least for me, when you wake up when you're not, when you weren't supposed to wake up, and when your doctors are surprised that you're waking up, you're just so grateful and joyful. And like, I, I can't even tell you, like, what it's like. I remember, I, I got out of the hospital. I remember, um, my, my dad and my sisters were over at my dad's house to have dinner. And, um, I remember I was going to set the table, and I remember, like, folding these napkins, like, perfectly. And it's like, there's just this joy in just existing. Like, "I'm going to be the best napkin folder ever." Like...

Look at this oxygen.

This is just like life. These are napkins, and like, you just, you just have joy and gratitude that's like hard to explain.

How do we use that in everyday life without becoming so distracted from what we're doing?

Without having to go through being in the ICU?

Yes. But also, if we do that, it's hard to focus on helping others and finding cures and working with AI. So, how do I enjoy the texture of this chair, and the value of this conversation, and the air, without getting distracted from where this conversation should go so it could benefit others?

Yeah, it's a great question. How do we balance that?

I, I think I don't...

'Cause you're, you're doing this on a level that I've never seen anyone do.

No, I don't, I don't know about that. But I, I do, I think that for me, the way I've done it is that I think about that feeling and, like, remember what it was like, and then all I can think about is, is there another drug that's sitting at the pharmacy that can do that for someone else? Is there a drug that can help them?

You want to share that?

To become the best napkin folder of all time, to like embrace the feeling of the chair. Like, and so for me, it's like, once I've gone through this, and, um, as you know, I've gone through this a number of times now, five times I've almost died from this disease. It's now been over 11 years. I've been in remission. But like, with each one of those, it's reminded me, like, this is, this is what we should be fighting for. And, and, and the other thing too is that, of course, it was with a drug that was already out there. And so, it wasn't like we had to do decades of work and billions of dollars. It was like, it was always there.

Mhm.

By episode four of nearly dying, were you like, "All right, I'm not dying."

No, that's, you, you would think...

I got some, like, what, where I'm trying to put myself in your shoes, and I'm having the most difficulty.

Yeah, it was actually the opposite. So, 'cause with everyone, it was like, "Well, you got really lucky last time, but like, it's not, you're not going to, it's not going to keep..."

And is that because they didn't know? They knew what condition it was. They just didn't know if the treatments would help.

That's exactly right. So, they, they knew the condition. They didn't know if the treatments would help. The first time, just using Rituximab alone, in hindsight, they should have used a number of chemotherapies. Like, so I somehow squeaked by with this, like, one chemo that just sort of like depleted one of my immune cell types. The next time, so number three, when I was hospitalized just a few weeks later in Little Rock, Arkansas, that was, um, over two months that I was in the hospital. And that one, they gave me seven different chemotherapies all at once. Like, the seven most intense chemotherapies: Adriamycin, Cytoxan, A, Topotecan, Velcade, Dex, Lenalidomide, Rituximab. So, they threw the Rituximab as well. But so, those seven chemotherapies all at once, um, completely destroyed my immune system. But just to tell you how sick I was, I actually felt better with every single dose of chemotherapy. I was so, so sick. Um, because we sort of waited the last leg to start it. I, I'd been on an experimental drug called Sirolimus before that. Um, but that chemotherapy started to make me feel better. And, um, I sort of again, like, had this joy of like, "Oh my gosh, like, I, like, I said goodbye, like this, and yes, we found it." And, um, I was on this experimental drug, and I thought maybe it could keep me in remission. I'd...

Came home to North Carolina, saw Caitlyn, we like, you know, somehow, like, I'm my head's bald, and I got this, like, big belly and fluid everywhere, and somehow she like still wants to be with me. And I was like, "Are you sure?" And she was, she was like, "Offended that I asked." And I was like, "All right, I'm never going to ask again." Like, like, if you're, if you're okay to be with me like this, um, then, then I'll never ask again. And, um, and yeah, I was able to go back to medical school and, and really was hopeful that that experimental drug I was on was going to keep me in remission. Um, but then I, I relapsed, um, a year later. And number four was, was probably the hardest one for me emotionally, just in, in many ways. And that was that, okay, at that stage, I had gotten on this experimental drug that was helping other patients. We were hearing about all over the world that were benefiting from it. And, um, I had a conversation with my doctor. I said, "Okay, well, what else can we try? Like, this thing targets Interleukin-6. Like, is there another drug targeting another Interleukin? Like, is there a cell type?" And he just explained to me, "David, this is all we know about the disease. There, there are no other drugs in development." I was like, "Well, is there a lead? Like, is there something somewhere?" And he just said, "No, this, this is it." And I said, "Well, what are we going to do?" And he's like, "Well, we're going to try those same seven chemotherapies again. Um, after this round, you'll be approaching your lifetime maximum of one of those chemotherapies, what's called Adriamycin. And at some point, the chemo is going to stop working." And, uh, my, my dad and my sisters and Caitlyn were around me, and I remember just, we were all just balling our eyes out, like, you know, this doctor's telling me, you know, that this is it and that there are no more options. And, um, and I remember in that moment thinking about a couple things. Um, I remember thinking about, um, just laser-focused thinking about, like, that promise I made to my mom, like, I have got to be able to get to a place where I can help patients in her memory. And just thinking about Caitlyn, who was sitting next to me. And I, I just wanted a family so badly with her. The other thing I thought about was that those seven chemotherapies, they weren't made for Castleman's. They were all made for lymphomas and multiple myeloma. And so I thought to myself, "Okay, I know that there are no drugs that, that, that we know of that could work, but we also just use seven chemotherapies that weren't made for my disease. Maybe there's another drug made for another disease that could also be used. Maybe there's an eighth drug out there that could work for me." And so that became my central obsession. It was, "Okay, and I told, told my family, I said, I'm going to dedicate the rest of my life, however long this is going to be, to trying to find treatments that can save my life." And I knew it couldn't be a new drug. I didn't have a billion dollars in 15 years. It would have to be finding a new use for an old drug.

And what led you down to specifically looking at the mTOR pathway as the target?

Yeah. So, um, after that fourth episode, this is back in May of 2012, um, I started, uh, collecting blood samples on myself and storing them away in the freezer over the course of the next year. Not my home freezer, the lab. The freezer at the lab. Yes. Um, but yes, it wasn't the home freezer, but I was storing them every few weeks. And, um, I started doing research. I started an organization called the Castleman Disease Collaborative Network to advance science for Castleman's. Um, I finished med school, and, um, I actually enrolled in business school right after med school. And the reason being is that...

Why business school?

Yeah. So, I sort of, as I was sort of trying to figure out what to do with Castleman's, I realized that the greatest barriers for progress in Castleman's didn't appear to be science or medicine. They seemed to be...

Are we, yeah, are we using resources efficiently? Are we, you know, collaborating? Do we come up with a strategy for research? It felt like everyone was acting so, um, independently and in silos. I, maybe I'll enrolled in business school. And, um, I, I got engaged to Caitlyn, and she said yes, somehow. And, um, and then I relapsed. Um, and I had my fifth deadly flare. Um, this is now in November of, uh, 2013. And, um, with that relapse, um, I tried a couple drugs. I asked my doctors, "Can you try IVIG? Can you try cyclosporine?" I remember one of my doctors saying to me, "David, would you like some fries with your order?" When I asked for this, you know, these drugs. And I was like, "No, I get it." But...

Were you offended by that, or were you needed a little humor?

I needed some humor. I, like, it made me laugh. Um, so I was trying anything and everything, and it was, I knew it was the last, and they knew it was, this was it. So, and they didn't have any other ideas either. So, they were, you know, supportive of trying these things. Um, and I, and I hoped with everything that they would work. And one of them, um, IVIG seemed to slow down the progression of the, the relapse. But then, and I remember, like, sitting on the couch with my, with with my fiance at the time, Caitlyn, and, um, we were like crying. We were so happy. It was like tears of joy. Like, "We did it. Like, this disease is getting stopped. Like, the lab work was showing was improving." Um, and then it just blew right through it. And, um, I ended up back in ICU with all my organs shutting down, back on dialysis. Um, and, uh, you know, approaching death for the fifth time. And, um, I remember just being so disappointed that I, I just didn't figure it out. And I was like, "I tried so hard. I put in those two orders. Like, I spent so much time with my colleagues, my classmates in med school. We were like brainstorming, do we try this or that? I tried everything." And, um, I remember being so disappointed. And, um, remember my, my doctors just giving me just the same crazy combination of seven chemotherapies, the highest doses they'd ever given to a human of this one particular chemotherapy, atopicide, um, or that they had. And, um, uh, I remember just being so disappointed. That was it. That I, I, I tried, and I, and I didn't, didn't make...

It. Um, and uh, remember saying goodbye to Caitlyn and my family and again just just complete disappointment that it just didn't happen and that I I wasn't going to have that life. And then also remember a couple days later just sort of starting to wake up and being like, "Holy shit." Like >> the cocktail. Yeah. Wait. Okay. I I have more time. Okay. Um, and where my head immediately when I remember my sister Gina was over here on my left and Caitlin was on my right. I remember waking up and um and just being like, "Gee, Caitlyn, I need you to I need you to start making some phone calls." And they're like, "What? What?" Like, "What do you mean?" And I was like, "I need you to call UNCC and Duke. I need you to talk to the records folks here at US. I need to get get all those records sent to Philadelphia. You get every blood sample, every lymph node, tissue sample sent to Philadelphia." I actually when I was in North Carolina, I'd had one of my lymph nodes cut out um with the hope that if I survived, I could do research on it. And um so I get that lymph node Philadelphia because if I get out of here like I've got to get to work. I've got all these samples stored in the freezer there. Like >> this is very Iron Man right now. >> You're not going to believe. >> We got to make a movie out of this. >> Actually is a movie in the works. >> Really? Okay. I was going to say cuz um but uh Wendy Feinman, she produced Forest Gump. She's um she's uh working on Turn the Sniff Home. So um >> got to get these samples and um uh got the samples there. About 3 weeks later, I was back in Philadelphia and um it was just non-stop. Can we find something? So to to answer your your question with a very long answer, um I did something called serum proteomics where we measured a thousand proteins in my blood samples leading up to the relapse. Measured a bunch of cytoines, did flowcytometry, so looked at different immune cell types to see what was activated and eventually got a signal that maybe this particular communication line in your in my immune system called mtor was turned into overdrive. And what was really important was that because I had that lymph node cut out of my neck, um I could actually test in the lymph node to see how much mTor was active in my immune cells and it came back like it was insanely positive. And so I had all these normal lymph nodes. I had my lymph node. It was insanely positive. So I went to my doctor in um in DC and I showed him the data and said, "Do you think we could try an MTOR inhibitor?" MTOR inhibitors had been made a few decades earlier for organ transplant rejection. It had never been used before for Castleman's but I was out of options and so >> what was the state of research on Castleman's at that time? >> At that time we knew a lot about interlucan 6 and the role it played in Castleman disease. Um but we knew really little to nothing about anything else. Um we had just started the cast network a year earlier. So we started to get the community together but there was no diagnostic criteria. There were no treatment guidelines. There were these chemotherapies that were getting thrown around here and there. >> So how was the diagnosis made if there was no criteria? Yes, it was made based on you needed a pathologist to recognize that the lymph node looked like a lymph node that they had seen when they were basically in residency or med school >> and um and then the clinician would sort of confirm it. But we came up with treatment or with diagnostic criteria in 2017, treatment guidelines in 2018. So now there's actually criteria for how you diagnose it and how you treat it.

>> So you were finding that there's this mtor possibility you reach out to one of your colleagues. What happens then? He says to me, "David, um, it's probably not going to work, but we don't have any other options, so let's give it a try." And, um, he prescribed Cerillyus. And at this stage, I just received a bunch of chemotherapy, and I was certainly improving from the chemo. Um, I started Cerillyus. Um, and I remember within a couple days starting to notice some symptomatic. I felt better. I remember the blood tests looked better, but remember four times before I had gotten better and it came back. So I like >> So you were waiting for the other shooter. >> Exactly. I was like, I'm not going to celebrate at all. Like Caitlyn, like we're like we have one thing in front of us. May 24th, 2014, which was our wedding date. Like we're going to make it to May 24th, 2014. And we're like we're like not going to celebrate until May 25th or we're going to celebrate May 24th, 2014. But but that that was like the singular thing. It was like, is Sarah Lima going to help me make it to our wedding day? And um and it did. And I remember my hair grew back just in time. So it looked like I had like a buzz cut on our wedding day. Um grew back just in time. And um and then we're we're sort of like oh my gosh like we made it to this date like maybe it'll be another month and um then we really started celebrating every month and we would even celebrate fractions of months. It was like it was like 7.38 months and it's like and like it was like this constant just like celebration that that sort of concept of joy that I was talking about earlier and just gratitude for like the fractions of months um and what like every breath meant that we just didn't think that we would have together and the the years just started adding up. It's now been over 11 years. I've been in remission 15 years now since I first got sick. And um got two little kids and I get to spend my life trying to do everything I can to find more uses for existing medicines.

In those first 7.38 months, how did you make the decision to push yourself further each day? Was there ever discussion, oh maybe I shouldn't work out today because I might weaken my immune system or my ability to fight this thing? How did you manage that? >> It was really tough. I mean in the early days it was like yeah I was afraid of everything like you said even yeah exercise I was concerned like exercise you know it creates like inflammation and like there was just everything I wor like as I worried about everything >> of course cuz you didn't know what the target was. >> I didn't know what the target was. I didn't know why I kept relapsing. You know it it kept coming back. I was now I was in business school and it just like it was it was terrifying. Um and um at the same time I was like so grateful to have life that I wanted to live life and I wanted to do to you know do life and and and and so it was um it was challenging but uh um but yeah, it was just sort of like one day at a time >> and you're like let's push a little more today push a little more today >> and then were they were there days where you would wake up and you say man I I feel like I'm getting back to normal I shouldn't be excited because it might all change was there always that hesitation? >> Absolutely. I mean, with every year that went by, there was like this celebration. Like, it's been a year, two years, but there was never like I mean, I still don't take like a deep breath. I mean, and I I really like and I I still have my my port on my chest, which is where >> I get infusions from every few months, and I I still have my my scars in my neck and scars in my abdomen that like remind me of of what I have gone through and what I I could go through. Um, but pretty soon after the drug started to work for me. Um, I just have had this thought that I hadn't been able to get my out of my mind. And that was that the drug cerealist that's saving my life was at my CVS. All those years when I was in and out of the ICU for three and a half years, I was battling for my life. And every time I passed by CVS, my drug was in there. And all I can think about is, okay, if my drug was in there that could save my life, how many more drugs are sitting in the CVS that could save other people's lives for other diseases? and what can we do to make sure that people don't have to be told we've tried everything when there's something there and that we can actually unlock these these opportunities to save lives and and that sort of gets back to this whole thing around like the system that we're in and like why is it that a drug that's cheap and safe and old isn't used in a new disease area. Well, a lot of times it's just because the work hasn't been done to find the connection. But in some cases it's because there's just no incentive to find that connection. There's just no no incentive to do the work. And so that's just become all I can think about these last 11 years.

>> When did uh your physicians start realizing that this was a success and we should mainstream this case report, publish? >> Took a couple years before we were ready to put together a case report on it because like I said, it was just just sort of the fear of like is it just going to come right back, right? >> Um and so uh within within a year or two, we started treating additional patients with serillimmus. always like sort of concerned like I don't know if it's going to work as like um you know we don't know how long it's going to work for in my case but we treated a patient in New Zealand and a patient um in Brazil and then for me what was really powerful was this young boy in Philadelphia the children's hospital of Philadelphia um he wasn't responding to any treatments for Castleman disease and um we decided to try cerolyamus on him and again this was like pretty short after after I started on we didn't know how well it would work and Joey had the most incredible response I mean like I remember coming and to look at his blood work the following day and his mom handed me the blood work. And I remember just starting to to tear up and starting to cry cuz I was like, "Oh my gosh, he was getting so sick so quickly and things are already stabilizing and within a few days starting to improve and and Joey's been doing great now for many years. Just got to see him and his family a couple weeks ago." Um, for me that was a really important moment because the patient in Brazil and the patient in New Zealand, I didn't get to see them get better. I heard about them getting better, but like to sit there and see this young boy who was so sick. Um to start getting better right in front of my eyes in the hospital >> um was like, "Oh my gosh, like we're we're really on to something." And um and just f it was sort of one step towards where we are now, which is okay. How many more of these things are out there? >> And they were all the same subtype that I >> That's right. All the the most severe IMC, which is called Taffer syndrome, the most severe subtype. >> And where did you publish your case report? I'm curious. the Journal of Clinical Investigation, JCI, um had a great readership um and helped to get the word out to to a lot of other patients >> right now across the United States or perhaps globally. How many people are using the medication? >> It's hard to know the exact number, but certainly in the hundreds are on it right now, maybe low thousands, probably probably somewhere between mid hundreds and and and low thousand. Um uh and unfortunately it doesn't work for everyone which is sort of you know it worked for the first four patients we treated um myself and then these next three. So we sort of thought like maybe we're done with Castleman's research. Maybe we can sort of retire early and like you know you know go be a professional napkin folder. Um but uh unfortunately it turns out that it works in somewhere around 20 to 25% of patients. And so um and it turns out it's partly subtype specific. So the really severe subtype the one that I have it does have a higher um response rate. But if you look across all Cumbrs, it's lower than that. And so um finishing after finishing up business school, I then joined the faculty at Penn to really focus on finding more treatments for castlemen and related rare diseases, especially given that serimus wasn't going to work for everyone. Um, and we found uh pretty shortly thereafter a drug called Rxalinib that could work for a group of patients with Castleman's. Young girl named Kylo was um in the ICU in Chicago and um sick for almost an entire year. Nothing was working. even chemo wasn't working for her and we ended up um using uh Rexalinib the first patient ever um with Castleman to be treated with it and she responded so well. She um is actually now starting up her sophomore year of nursing school at Marquette and doing so great now about 5 years later and that was another one where okay, you know, in Joey's case, it was okay seeing someone benefit from the drug I'm on. This is really powerful. hearing about another young patient benefiting from a different drug that we had just uncovered through also doing proteomics and also doing flowcytometry. Um, that was another powerful step. And then the next one of course was was what I shared with you about my uncle Michael Peberlymab. Um now it's a different disease altogether like maybe there are more things out there and and I should also share you know just sort of your important point you made earlier which is that I don't believe there is a drug out there that already exists for every disease. I don't I I I'm not naive to think that like every disease >> and even in this condition it matters on subtype and there's a percentage >> there's people who there's people who are dying even with castle disease even after we've worked and put everything we had for the last 10 years even with every drug we try so I don't believe there's a drug for everyone um for or for every disease but what I do believe is that if there is a drug out there and if we do have the ability to make that connection to that disease that we must do that that we have a responsibility to unlock the potential of the drugs we already have. Um, and so, you know, with each of these unlocks, it's it's, you know, made me feel more convicted about that. And there's also been a lot of setbacks. I shared with you about my brother-in-law, Chris, who who was diagnosed with ALS, and he passed away a few years ago from his ALS. Thank Thank you. Um, we actually identified a drug that we thought might work and and who knows if it ever would have worked, but we ended up not trying it because it's a leukemia drug and we thought that it would make him feel horrible. and and we made the decision as a family which was let's not try this horrible leukemia drug because Chris has three little kids that he wants to spend precious time with. And so um there are certainly diseases out there that um that are really intractable. Um, and uh at the same time, you know, we've got to keep looking for the opportunities that exist.

>> Yeah, I'm really glad you shared that story because it shows how balanced you are in your approach. Sometimes you're going all in and you're trying everything, but in other scenarios where you mutually agree through a shared decision-making pro process that it's not the right approach and not for any true medical reason. That's right. >> Simply from the human side of things of thinking about children, thinking about how you want to spend your time. So, I think it's going to be different for everyone. And I I want to highlight that for the audience because >> sometimes we get narrowly focused on miracle promises or simple solutions. It's never easy. That's right. >> There's so much nuance that needs to go into it. And speaking of nuance, uh, throughout the book and your journey, you preach the importance of collaboration, especially with rare conditions. >> United States recently pulled out of WH. There's all sorts of uh demarcation and fractioning happening across the global health landscape. We're pulling out of gave. Are you concerned about the fact that there is this uh sort of destabilization of global health networks? >> Absolutely. I think that um you know collaboration is critical. If this was me working on my own, I wouldn't be alive right now. Um and for many of these patients we've talked about, there have been so many different groups working together for just about every drug that's ever been discovered. It's like these take teams. Um and uh so yes, I think that collaboration is essential. to worry about um the loosening of connections between these important institutions. Um and I'm just really hopeful um that thanks to to people like you and to organizations out there that are pushing for, you know, for us to continue to collaborate, for us to continue to support our institutions, I I'm I'm hopeful that we can do that. But I but I I do worry just like you do.

>> Yeah. Tell me about Caitlyn. >> She's amazing. Um, I I've actually said before, I don't know how she feels about it when I say this, but um, the only thing more relentless than um, Castleman's is Caitlyn. You know, Castleman's keeps coming back. And I don't I really don't know how she'll feel about me saying that, but Castleman's just keeps coming back. Um, and Caitlyn just never leaves my side. Um, and having a Caitlyn um, in my life is just the most she's just she's incredible. She's just um, with me through everything. And I think back to those two words that I told you my mom kept with her um towards the end of her life. U and she shared with me that the last thing she said to me, unconditional love. And um I just think I've found like the embodiment of unconditional love and Caitlyn. Um, I mean it's got to be pretty unconditional for someone to put up with me. And I mean one all of my health challenges and you know bald and the big belly and the fluid and there's all that stuff and the you know is the you know s having her you know sit next to me in the ICU all those times. The other piece is is how intensely focused I am on on the work that I do. Um, I work crazy hours and I'm like all I can think about during the day is about can we find this drug for this disease and could this algorithm help and and I mean I I live as I as I shared earlier just with this constant thought of how many more drugs are sitting at the CVS that could treat patients that are in need right now. Um, and I've been able to be a part of of of making those connections and seeing the lives that people can live. And so, um, it takes a really special person like Caitlyn to to be by my side throughout all this and to be a partner with me on this crazy life that we're on. Um, and we've got the two most amazing kids in the world. They are so sweet. My sweet Amelia just turned seven and my son is three, although he would say he's three and three/4ers. He's not just three.

>> Important variable. How um how much thought, if any, did you think about Castleman having a genetic predisposition? >> A lot. Um so uh most patients uh with my condition the very severe subtype of IMC called Tapro um don't survive to reproductive age and to have children and so as a result we don't have good data on the likelihood that you'll pass on your genes to your children just because people with my subtype don't survive that long. >> Um so we have limited data and you can tell I'm we're both data people so limited data to make a decision like this. um we don't know about uh transmission in terms of you know parent to child genetically um but what I did know was that um we were doing everything in our power to figure out more treatments for castleman disease and the data that we did have didn't show that there was clear you know uh inheritance genetic inheritance so we decided that it was the right thing to do to have or we felt it was the right thing for us to to have children but the other factor to include in that too is um you know it's one thing to think about you know will those kids have your condition the other is you know will your kids have their father with them for a long period of time and so um we also didn't know my daughter's seven it's been you know so it was four years into my remission um we didn't know that it would be an 11-year remission right now and still don't know how long of remission it's going to be um but Caitlyn and I decided together that it was the right thing to do and um gosh these seven years have just been so special with our sweet Amelia and I'm uh so glad we made that decision.

>> What do you think out of the many decisions you had to make was the hardest decision? >> Deciding to have kids. Yeah. >> Settling down, picking your partner, dealing with loss, encouraging your uncle to go for the the treatment, finding that second opinion. What was the hardest decision? >> Yeah, it's a great question. Um, probably the hardest decision was the decision to not try that medicine in my uncle. I think that that sort of that that pro Sorry, sorry, sorry, my brother-in-law. Sorry. I was thinking about multiple things at once. Um, >> I think that gosh, but I have to admit like I think that what's so interesting is that when I look back on all these different decisions, I um I don't know, they all were so hard. I mean it's like I mean even like just think I mean I wasn't really a part of the decision with my mom but there was obviously a decision at some point to say like we're going to transition to hospice care and um and as we said before like I'm so happy we did that. Those two months were amazing. Um so yeah, and then of course you know the decision to to to try these different medicines in me. I don't No, I should I should probably I should probably know what the hardest is and it should it should come I think I think maybe the answer >> I think that the answer is you have so many that it's hard to choose. >> Yeah. >> But they all carry different reasons for being hard. Whether things are outside of your control makes it hard. Whether it's you're risking someone else's life makes it hard. There's an emotional component to some of them that makes it hard. I think that's right. Right. And I think it's also that like the outcome I think also is almost just dissociated from like how hard of a decision it was because sometimes you make a decision that was really hard and it ends up working out great. Other times you make a decision um that was the right decision but it still doesn't work out right. You know like we were talking about earlier, you know, you can make the decision to try the a medicine because there's good data that it could work and that medicine could have a horrible side effect and and it was so it was maybe the wrong decision. But I just think that um yeah, I think that when you make these decisions um to your point very much based on the individual person, their circumstances um always with the data in mind um I think that even when they're really hard, um they can somehow become the right decision.

>> What's your relationship like with fear? H I think that um when you've gone through the challenges I've gone through and I've been terrified over the years. I mean that each time I almost died, there's been so much fear and you know fear of the unknown before there was a diagnosis and fear of of death and that I wouldn't be able to do the things that I wanted to do. And so I think that there's a little bit when you go through fear and you're and you deal with it enough um that for me I've sort of boxed fear out of my life. It's like it's there's sort of no room for it anymore. It's like I've maybe you have a certain amount of fear you can have in your life and I've like sort of used it all up. I'm like I'm out of fear. Okay. >> And I think that um it Yeah. I don't know because I think there is a bit of this sort of like inverse between, you know, fear and and hope because I think hope is is really believing that like there's going to be something positive even when like you should be terrified and you should be afraid of what's going to happen but finding something that could be positive and I think that what's happened in my life is I've sort of crowded out fear and I've just become really hopeful. Um, but to your point, um, there can be too much hope and and there can be a point where you're you're too hopeful >> in this fear equation. There were moments where you didn't know what was going to happen. There was moments where you were basically pronounced dead or nearly pronounced dead. >> What was your mental health journey like? Did you require the working with someone from a psychologist standpoint, a therapist, or was this primarily caregiver focused? If you're comfortable sharing that? >> Yeah, these are such important questions. Um, I think that there were three things that really helped me to get through these things um psychologically. So, um the first one is that during my toughest times um I always maintained a focus on what I was envisioning, what my future was that I was hoping for. I think that um you know for me that was I could picture Caitlyn and me and I could picture kids and I could picture me in the lab. I could picture me helping patients like that like I could truly visualize that. So even when I was so sick and I was just sort of like fighting for each breath >> even when the priest is telling you >> well at that point I have to admit at that point I was I was really just devastated cuz that because I could I could like almost picture it but it was sort of like >> disappearing. It was just disappear. It was like that was like, "Oh gosh, that thing." >> Um, but 99% of the time I was in I was in the visualization there. There were moments. Yes, absolutely. Where it was just utter disappointment that I this is this that thing that I'm I'm thinking about that's been fueling me. It's not going to happen. Um, but for most of the time it was that vision for the future that was really driving me. Um, the second piece was how critical it was to have my family by my side. That's why I think about during co when people were in the hospital by themselves what that must have been like to be alone cuz for me I literally like clung on to my sisters and my girlfriend and my dad's hands like I was holding their hands they like and I could feel their strength through just like holding their hand. I could like their voices, their support, their care. Um, I remember there were times when I was in the ICU where um I was so sick and I and I really could barely even construct a thought, but like whatever I said they nodded to. I remember there were times where I was like, "Am I making sense? Like do they" and like and then later on they're like, "No, you made no sense." But but in the time we were just like we were sort of just trying to like Yeah, we're just trying to like like you nodding along and I was like, "Oh, cuz I didn't make any sense." And I was like Anyway, so but they were just always there. They were relentless. Like they were supporting me relentlessly. And I think that you've got to have that kind of support. Um and then I think the third thing that helped me was really trying to take things one step at a time. And I remember um at one point um when I was really really uh sick um I had fluid all over my body. I mentioned I gained about 100 pounds of anes fluid everywhere cuz my liver and my kidneys weren't working. And um I remember hearing my sister say just breathe Dave just breathe. And every breath was really painful but just like hearing her encouragement was like yeah I can do I can do one more breath. And so this sort of idea of, you know, having a a vision for what you're fighting for, having support by your side, and then really trying to take it down to the smallest possible unit, that helped me so much psychologically. And then the other thing, too, is that like once I would get to the tipping point where now I'm starting to move in the right direction, at least the way my brain worked is I didn't go back to, oh my gosh, I can't believe I went through this. Like, why is this happening to me? This is so horrible. All I could think about was, oh my gosh, I'm here. Like, this is amazing. And I don't know if that's transferable to everyone's challenges. I don't think we should all just be like happy about everything when you get to the other side of it. And I think we should really, you know, sit with our feelings. Um, but for me, I just get so much joy when I get to the other side of these things that >> it's it's I pushed been able to sort of push out some of those tough things. Although I will say when I was writing the book, I spent most of my day crying. And it was because I think so many of these emotions and these feelings really had been pushed back because as you can tell I get very focused on things and so I've been get very focused on drug repurposing and the next patient the next patient the next patient and so a lot of these things had been pushed back and and it was very much a therapeutic process to actually write it out.

>> This sounds like a dick question but I think it's an important question to ask. Did you ever or was there a strategy that you used to avoid feeling like a burden to your family? >> Oh, it's such it's such a good question. I really struggled with this cuz my dad was out of work for 6 months while I was first in the hospital. My sister stopped working. My sister Gina came and spent all that time in the hospital. Um, you know, my my brother-in-law Chris and her kids were were by themselves. Caitlyn was trying to make time between work. I felt like a complete burden. Um, and um, I think that the only I don't think I did anything to feel less like a burden, but I think they did so much to make me feel like they were like like I was not a burden to them. >> So, it was sort of like they did that for me. And I think I also one one thing I learned, you know, when my mom was so sick, >> I remember um, >> I didn't want to cry in front of her and I didn't want my sisters to cry in front of her cuz I was like, we got to be strong for her. And I had this idea of what a caregiver is supposed to do for someone who's really sick. And I thought I didn't want to be a burden on my tears to make her upset. Um, and I had all these ideas in my mind of what it is to be a good caregiver. And then of course through AMF, I thought I learned even more because I I sat in support group meetings basically every week for years and years with people going through horrible losses. um which of course by the way as you can imagine has gotten me you know even more obsessed with you know can we find treatments for patients but in going through the experience as a patient myself I realized that a lot of our sort of social norms around how we're supposed to be strong for people and show up as caregivers really kind of went out the window and what I realized is that my family members just being like their authentic selves like if they were crying because they were sad I was sad too. That like them crying didn't make me any more sad. Like I was already sad and like but it it actually it made me feel >> connected. Yeah. So it was like >> like that hive mentality. >> Yes. So what I wanted was like them to be authentic with me. I didn't so like if I was really sad or really happy and we watched a lot of Borat videos when I was in the hospital like like like whatever it was like we we like we like you had the hive mentality just be in harmony with one another. And so it wasn't so much that like I wanted to not be a burden on them or or like I think I just wanted to to just just to feel like, you know, we were, you know, being there for one another. And they did such a good job of of never complaining, never saying, "Gosh, I wish I was doing this or doing that. I'm here stuck with you in the hospital." It was like they um sort of um you know convinced me that it seemed joyful to them like that they wanted to be and like I know >> well that's why she got mad at you when you said are you sure you want to >> I mean Caitlyn was like so upset she was like offended and I was like are you like are you talking to the same person that like I think like I'm I'm like you really shouldn't want to be with me like I'm like I have like this critical horrible illness and I'm like I'm like you're I was 25 at the time she was 23 like go find someone else who's healthy. and like isn't so hardworking and crazy and like I don't know, does fun things and isn't just so intense. Go find that person. You deserve it. And and she um was just totally offended. And she's she's just been amazing and and uh and we're able to to make a great team together.

>> Throughout the journey, any things you would have done differently or perhaps regrets? >> It's a great question. Um, I mean, just thinking back to my mom's illness, I think that, um, and I think this is probably the case for a lot of people that lose a loved one, >> I think I would have, um, just tried to soak in every moment a little bit more. I don't know what that means. Um, I but like, you know, when you no longer have that person, you just sort of like crave like a little bit more time. You just think >> the things that you take for granted, you know, like the napkin folding together. >> Yeah. you just sort of like just like go can I get a couple more minutes where I just was like sitting there. I don't even know what it would have been like. Um >> I think that's that's maybe one regret. I think that in my own journey um I think that uh gosh do I what regrets do I have for my own personal battle? Um I think that I think making Caitlyn more of a priority at times I think is something that I I could have done a better job of. Fortunately, I have the the ability to do a better job of that moving forward. >> Feel like I'm making up for it now. >> I can I'm making up for it now or I'm trying to. Um Kaitlin, if you're listening. Um but uh yeah, I think that um she's just been so amazing and um she deserves uh you know, the the you know, equal co-parent partner in all and all this. And so I think that um I'm trying trying to make up for um for not always being uh as present and just you know I get phone calls at all times of night about patients with Castleman's and related inflammatory diseases and talking to doctors and patients and um a lot of times even if I'm not on the phone call I'm thinking about these things. >> It's hard to take a vacation when it feels like it's at the expense of someone else. >> It it really does and especially when you've sort of experienced both sides so vividly. you've experienced the pain of loss, so you know what that person and their their their family member is going through. You've also experienced the power when it when something works. Um, and you have a disease like Castleman's. It's shown itself to be horribly deadly and also incredibly responsive if you get the right drug. So, it's sort of like the perfect um combination of of something that's both horrible and actionable um that that makes it hard to to to not not always be on.

>> Yeah. Yeah, your relationship with Caitlyn is so powerful and strong from the experiences that you've had together. I mean, >> I don't think people do that in a lifetime, and you guys have done it in 15 years. Um, how would you think if I asked her now she would describe you? >> Um, she would probably say that I'm um relentless, which is the term that I use to describe her. Um, but I think she would say it in the sense of of the work that I that I do. And um, sort of when I have this mission, it's um, I think she probably would use that term. Um, and she's been by my side through three missions because the first mission was AMF. And she actually started a chapter of AMF at her campus. Okay. >> Um, at Meredith College to help grieving college students at Meredith because she was like, "This is amazing what this guy Dave's doing and I want to, you know, do it here." Um, and so she was part of that journey and she was part of growing AMF and doing fundraisers and like partnering with me to raise awareness for college food and grief which like grief during college is not something people want to talk about. It's not the kind it's not at all like oh you lost your parent like that's not something that people want to talk about in college. You know that cuz you lost your mom during med school. Like that's just not a topic that people want to talk about. She was with me through all that. She was with me through the fight against castlemans. We're still in the fight against Castleman's, but now she's very much with me in this fight through every cure to find new uses for old medicines and to use AI to do it. And so she's been with me and sort of seen me on these missions. So I think she'd say I'm relentless. And um I think that I think she would say I'm a really good dad. I'm very proud of that. I'm very proud of how I was as a dad.

>> Yeah. How do you spend your time with your kids? >> Um it's a lot of playing. Um it's a lot of like I just there's no joy that's better for me than like hearing my kids giggle and smile and laugh. Is that just like the culmination of the journey, right? >> It is. It's just it just feels like like Yeah. And it's like every like if I can get like my son or my every time I get them to giggle or laugh like if it's a joke or it's a lot of times it's tickling, but like just like anything to get them to laugh just feels um yeah, the joy of of of these two kids and and yeah, I just I I you know, I spend so much time. They're probably like, "Dad, why are you like staring at me?" But I just like I just spend time looking at them where I'm just like, "Oh my gosh, like I can't believe that I'm here, that we're here together." You know, if I don't find this drug for me, they're not here. Um I'm certainly not here. And um yeah, it just it like they they're like my sort of visual representation um that I get to see every day of um of really the possibilities that are out there and that there's these drugs that can help people and not just help people to live, but help people to do things they never thought they'd be able to do. Like I mentioned that young girl who's a nursing student and my uncle who's walking his kids down the aisle and and and like that is um is what this is about. But it's not about AI and drug repurposing and fixing the system that's broken. It's like, yeah, that's all part of it, but it's it's about, you know, being able to do these uh important things with the people you love.

>> Do you want them to go into medicine? >> I don't know. I don't know if there is going to be medicine in 20 years. I don't know. They got Well, >> what do you mean? We're just going to cure everything? >> Oh, yeah. Well, no. I don't know about that. I think I just don't know anything about what the world's going to be like in in 10, 15 years. >> That's probably the most honest statement I've heard of when making a prediction. >> I mean, it's just Yeah. just so like I don't I don't know like life I think is going to be so different. I mean we've seen incredible progress with with the AI algorithms that we're using. I mean when we we built this nonprofit three years ago and um we had this vision that like we're going to build this AI platform it's going to match every drug against every disease. We didn't know how how effective it would be. Of course when we started it was just a vision. Um we ran the algorithms for the first time about two years ago two and a half years ago. And um it took us 100 days to to score every drug versus every disease to scan the world's knowledge. Um now it's down to 17 hours to do that. And that's not because of anything we did specially. That's literally technology evolving computer improving. And so when you go from taking 100 days to down to 17 hours and you can rapidly iterate and say like that's a stupid idea. Why would that drug for that disease like this is a cream? We're not going to use a cream on a liver cancer. like let's keep training these algorithms. They get better and better and the results are really powerful. We're finding treatments for rare cancers that we had never considered before. Um uh we're going to be announcing a program coming soon about a very rare condition that that's only been described in about 12 kids ever right now, but a really simple generic drug that's already helping a few of those kids and we want to get it to more of them. We want to find more of those kids. These are the kinds of things that like we would have never known to look into that disease or that drug if not for AI. But AI is helping us to find these sorts of treatments and um it's getting so much better. And like every Wednesday I got to meet with the medical team. We go through the basically the treatments that our algorithm are predicting and that they're reviewing and determining what looks promising. And there's a lot of stuff that makes no sense and we skip over it and there's a lot of stuff that looks really promising and we get really excited about it and then we do lab work and we do clinical trials. So all that to say, I get to see every Wednesday literally the improvements that are happening with our machine learning algorithms and when you extrapolate that out to all of the work that so many other groups are doing and so many companies are plowing so many so many resources into I just don't know what the world looks

like in 10 or 15 years. Um, but we're just doing everything we can in our power to make sure that, um, you know, between now and and, you know, the the the future that none of us can envision, that that patients don't suffer if there's a treatment that could help them.

Yeah. I I don't know if I'm a pessimist for saying this, but to me, I'm waiting for the rate limiting step of AI.

Yeah.

And I don't think we know what it is yet. I think it remains to be seen and it could show up next week or it can show up in 5 years. But I feel that there's something coming that we don't yet fully understand because whenever you have progress happening so quickly, it's hard to something that we're taught in healthcare is to reassess.

Yep.

When there's so much evolution happening so quickly, it's difficult to reassess if you're moving in the right direction when it's happening as quickly as it is.

And I've had this conversation play out with uh Jonathan Height. I don't know if you're familiar with his work. Uh, wrote The Anxious Generation.

Oh, yes.

Um, bestseller, I think like 73 weeks in a row on New York Times. And he talks about how we villainized the printing press. We villainized radio and television. He's like, but those took years to develop and see the harms and learn. Social media happens so quickly. Now AI is happening even quicker. And I feel like because of the evolution happening as quickly as it is, there's going to be some rate limiting step that we're going to hit that is going to be unexpected. I don't know what it is. And I'm certainly not smart enough to predict it, but I don't know if that makes me a pessimist. I don't know what you think about that.

No, I think I think you're right. And I think that um some would have predicted maybe it would be government regulation that would slow things down. I think that given sort of the fact that AI is is being advanced by so many countries all over the world and and oftentimes with implications far beyond healthcare and defense and things like that, that it seems like no one wants to control it from a governmental perspective. And so if it's not going to be regulations that are going to slow it down, you're right. Is it going to be energy uh that's that's going to slow down? Who who knows what it's going to be? Um, but I I just know that um in healthcare, I think there's a lot of really positive um uses for it. And I think that this use of new uses for old medicines where you already have data, you already have the breadcrumbs. I think that what's tough with generative AI and and really 99% of all AI in biopharmaceutical work is around new compound development because that's where all the IP is. That's where all the money is. If you find a new drug, you can potentially make billions of dollars off that drug. And so that's where AI is being really focused. Um, but being able to and in those cases, these are new drugs where you don't know how it works. You don't you think you can predict what it binds. So you think you you can predict what you think it might do.

But what I think is so much more powerful use is to say let's not predict how the drug might work or or what might happen. Let's actually use real data on how the drug does work. What will happen when it's in humans because we already have data in humans and just apply that to a new disease.

Yeah.

And when you do that, you're using breadcrumbs that AI is really good at using breadcrumbs that already exist to look for patterns as opposed to generative AI where it's really sort of coming up with ideas from scratch. So, I think it's a great use case. I mean, I think we both know the reason that that hasn't been focused on is because these old drugs are cheap and old. So, it makes sense, but I think it's a good use.

I think that AI in general, when people talk about in healthcare, they always talk about the future of AI coming in and doing some magical thing like creating a new drug. But to me, my biggest value it is like allow me more time with my patient.

Yes.

Help my patients select which insurance plan is right for them. cuz when they see a list of 30 things and they don't know what's right based on their budget and like that's what AI could actually be good for. But yet that's not where the money is not where people are are innovating. So to me, it's the simplest things that AI could be good for that we're kind of glossing over much in the same way in this scenario, repurposing old drugs. Same simple solution, complex problem, so much benefit, but not a lot of monetization to do that.

Exactly. Right.

Um, something that I neglected to ask, but I think is worthwhile. Given your knowledge of healthcare, medicine, the fact that you took so many of these medications, do you have any worries about how they're going to impact your health long run?

Yeah, it's a great question. Um, the chemotherapies I've gotten are really bad chemos. Like they they are known they absolutely are cancer. Like it's interesting the same drugs that treat cancer are actually cancer-causing and they they work by damaging DNA and that's how they actually can be effective.

Yeah.

You know, it's it's interesting because when you're as sick as I was, like that you don't factor that in at all. Like it's not even a factor. It's like oh that would be a great problem to have in the future.

Yeah.

But then as time goes on, like I remember just even about five years ago, I after I went through all this and as you know, I was really into exercise and I, you know, former college quarterback, but then once I went through all this, I sort of stopped exercising and I was just sort of like like why? You know, like like I'm going to be back in the hospital next year. Like but then there was a point where I was talking to a friend of mine and he was like, "No, David, like it's been a few years you've been doing well. Like you need to start eating well and start exercising like you need to start thinking about the long term." I was like, "Wait, the long progress like I got to worry about the long term." And like I think that

um that being said, um it's a good problem to have, but it's still a real problem. Um, and so it's important that I do, you know, the same sort of screenings that other people do, maybe a little bit more diligently. Of course, I do PET scans to look for um for uh for cancer. I actually in the middle of my journey um uh got a horrible uh form of cancer called an inflammatory myofibroblastic tumor um in my liver um and I shouldn't say it's a horrible form of cancer it was horrible and that it happened in the middle of my Castleman's disease but fortunately it's a form of cancer that could be resected um surgically and so this came about like sort of in the very middle of my Castleman's journey and I remember when we got the PET scan, PET scan came back very uh very hot in my liver and I remember my doctor saying, "You've got this hot liver mass. Um, but you know what? Let's just sort of keep an eye on it. Why don't you come back in like 3 to 6 months and we'll rescan it?" I remember thinking to myself, I'm like, "Wait a minute. Like why are we doing these scans? Like you know that I'm at increased risk of cancer based on all this stuff. Like like shouldn't we like check on it?" And he's like, "No, no, no. Let's just let's just sort of rescan it in 3 to six months." And this was very much in the middle of my like mentality of like no like I'm going to I'm going to do everything. And so I went to another doctor and got an MRI a couple weeks later and the tumor had doubled in size um just in those couple weeks. And so it was because it wasn't just something not to worry about. It was it was serious. Um, we did the this really big liver surgery. It took 5 hours, lost a ton of blood, got this, you know, giant scar from here to here. They got the whole tumor out. Um, and uh, and thankfully, I'm knocking some wood. There's been no recurrence. Um, that's not been over 12 years because it was just before I had my last relapse. Um, but I share that experience for a couple reasons. One is that when I first found out about it and when we first did the initial biopsy to determine what it was, there was some literature um, some some papers and literature indicating that patients with this type of uh, this type of tumor can have Castleman's like symptoms. Like they can get sick with Castleman's like symptoms. And so I actually got really excited. I was like, maybe this tumor has been around all along and maybe this is the cause of my Castleman's. We cut it out and maybe it'll never come back. I remember like this joy like maybe this is the piece of the puzzle.

And then of course I've relapsed when my Castleman's was about six months later. So then of course sadness that that wasn't it. But I also share the story just because again it gets this whole like tension between like my doctor was he's become a friend of mine and he really I think was sort of like David don't worry about it. Like you stress about everything like don't worry about it just come back in a few months. And and I think that it was just sort of another example was like no like sometimes we need to stress about it. Sometimes you don't need to make me feel better. Um, let's let's rescan it. But of course as you know as a physician we can't rescan everything and we can't like we can't worry about everything. I don't know how you what your takeaway is from that.

It's so hard because like I think about a patient I had not too long ago who came in uh because she had abdominal pain, mild nausea, no fever, um I don't even remember maybe plus minus diarrhea. And her sister who was in the medical field told her that she thinks it's appendicitis. And she came in. I'm like totally reasonable. Tell me what's going on. Again, mild symptoms, generalized abdominal pain, press in the right lower quadrant, zero anything. no rebound, no guarding, no acute abdomen. I'm like, you don't have appendicitis. Like, look, I'm pressing on your uh area where your appendix is.

Um, I'm doing the other test. No, like all these things to show that it's not. And she's like, all right, well, like I get it. I'm like, but look, if something changes, here's what you need to do. Uh, etc., etc.

I find out the next day she fever spiked really high, emergency room, ruptured appendix.

Yeah. But should that mean I should scan everyone with CT scan who has abdominal belly pain?

Totally.

So it's like what's the take away from that other than make sure you give people really good red flag symptoms of when to go to.

Exactly. Yes.

Besides that, I don't know what else to take away from it because every time there's going to be a different approach. And what I try and teach my residents and fellows that I work with is think about the person that's sitting in front of you. And if you're deciding this for yourself, think about yourself. Are you a person that's more anxious provoked or more someone who brushes things off?

And if you're more likely to be someone who worries about everything, perhaps you should find a doctor that is more reassuring that counteracts that to some degree.

That's right.

And if your patient is always worried, you know that perhaps when they say it's a 10 out of 10 pain, it might not be.

Yes.

Versus if you know someone who's brushing things off, you have to take that to consideration and say, "Oh man, they're saying it four out of 10." To me, that should ring alarm bells.

Yes.

And that's where really knowing your patient and continuity of care and why I love family medicine really ties into having a good relationship with your doctor.

I love that.

And that's hard to do over one visit, two visits in an urgent care setting when you're overrun and they're giving you 10 minutes for an appointment because that's the realities of our healthcare system. So that's why I'm a big proponent of primary care because I think without that you're really relying on just chance and what do you want to do?

Yeah. Exactly.

Yeah. Do you want fries with that order?

Exactly. Because sometimes it does come in that scenario where someone comes in. I just want this.

Yeah.

Similarly to how you had your experience with the first doctor who you said, hey, can we just do the genetic test? And they said no.

In I've had scenarios like this where I say to a patient, I don't think this is the right move. I think you're really going down the wrong path.

But the harm of getting the test was only my ego getting hurt.

So I said, you know what, you want this. I don't know if insurance will cover it cuz that's outside of my scope.

But if you're willing to deal with those consequences, I'm happy to order it cuz I don't think it's directly harming you.

Exactly.

So I try and take that approach a little bit more often.

And sometimes it's not great. Patients come in a lot of times with primary care with a viral illness that's very obviously viral and they want antibiotics. And you say no. Well, I say middle ground. You really want it. You're really nervous. I see why you're worried. Let's do a team-based approach. I'm gonna send the medicine to your pharmacy so that if you need it over the weekend when you're not perhaps getting good access to a doctor, you can reach for it.

But perhaps that reassurance of knowing you have it will lead you to not take it and we could give you 48 hours to a chance of watchful waiting.

I love that.

And some have great buy-in with it. Some immediately go get it. But it we're trying something to understand that human connection a bit better.

I love that.

So patients seem to have better buy-in with it. But it's constantly a learning thing. That's why medicine is the most uh humbling profession. I think.

It is.

Yeah. Like there's so much you learn from every patient interaction. I'm sure you learned a lot from uh your patients failures as much as your own personal failures.

Absolutely.

Yeah. Um, what's the rest of the journey look like for you? Where are we going next? Where are we in five years?

So in five years um we will have um identified hopefully um 10 20 new treatments for diseases they weren't intended for. Uh, we've got a really ambitious goal with Every Cure. We're a nonprofit organization. We got started 3 years ago and um, we hope over the next 5 years to take 15 to 25 drugs uh that are used for one disease and and show they work in another disease and in bad debilitating conditions um where there aren't solutions and I mean for me that is like the the most exciting thing with every single patient every single drug it's um it's uh it's hard to describe what what what that means but it it's it just means everything and so um when we think about impact over the next five years That's where we want to be. A place where 15 to 25 drugs for diseases they weren't intended for, thousands of patients alive and well, doing great thanks to those medicines. And really thinking about in 5 years time, how do we make sure that this just becomes the norm that it's not like this whole AI effort to find new uses for medicines that that this one little nonprofit's doing, but how do we start getting the concept of using drugs across multiple diseases to be um sort of part of the system? And when you think about it, drugs are used um as I mentioned off label quite a bit about 20 to 30% of prescriptions are off label. There's some famous examples of drug repurposing. So um most people have probably heard about Viagra and how it was repurposed from heart disease to to its well-known use. Um, but most people don't know also repurposed for rare pediatric lung disease, pulmonary arterial hypertension. Kids were dying because they weren't getting enough blood flow to their lungs. You give them Viagra, they get blood flow for their lungs and they live full lives on Viagra. Thalidomide is another great example where it causes horrible birth defects um in pregnant women in pregnant women in in their offspring, but it also is really effective for leprosy and multiple myeloma cancer, which again leprosy and myeloma are so different, you're like how the heck does the same drug work, but it highlights how two diseases that can look very different can actually have the same underlying problem and therefore can benefit from the same drug and so it's happening but the examples I share, Tsalidomide is another example, of course steroids for examples where drugs are used across multiple diseases, but in most these cases, there's a very clear economic incentive. It's a new drug or it's a drug that's recently on patent to find these new uses for it. And so, we've got to create a system um where it doesn't matter where a drug is in its patent life. It it's still it's how effective is it? Um, and so I think that in 5 years time hopefully we will have really demonstrated um the potential of the existing drugs we have and that we're looking forward at you know at maybe dozens or hundreds of diseases that we're able to help with the drugs we already have.

Where does the funding for your organization come from?

So right now we're about 50% funded by the US government from an agency called ARPAH and the other 50% from individual philanthropists and donors, individuals who believe that if a drug's at their CVS, that it should help patients in need and we're we're so thankful for those individuals.

Where can people go to support?

They can go to everycure.org. Um, you can donate online to our nonprofit. You can also help to raise awareness for our work. Some of these medicines um they've already been shown to be effective. They're just not being utilized. We got to get the word out. That's why I'm so happy to be on this podcast with you. Getting the word out and every single viewer or listener can help get the word out. It might just be sharing a post that you make or that I make. Like that can actually help to get medicines into people's mouths because they're already out there. They're already FDA approved. And another thing that that individuals can do is tell us about drugs that have been used off label for you. You know, is there a medicine that Dr. Mike's given you that that's helped you with something it wasn't intended for? And you know, what's that experience been like? We want to then look into our AI platform and see, you know, why would that drug like for that disease and and dig into it further. So, um, between helping to raise awareness, donating towards our work, and then telling us about repurposing ideas, that's a way that all of us can be a part of, uh, addressing this really, really important need.

We can't go without your personal journey. People have fallen in love with your path and where you're going. Where can they follow along your personal journey?

So, you can go to either chasingmycure.com or davidfagenbom.com, which is a little bit harder to spell. Um, but, uh, you can go go to that website. No socials.

Uh, you can go to socials. Yeah. So, uh,

easier to find on the website. We had DFagenbombs on Instagram. Um, you can find me on Facebook. Um, and yes, so you can follow along our work. We're sharing about all these repurposed drugs we're using. We're sharing about patients that have benefited from repurposed drugs and sharing the lessons from this journey. And then at some point in the future, I don't know how long it'll be, um, but you mentioned film earlier. So, um, Wendy Fein, who um, produced Forrest Gump and Devil Wears Prada, she's also doing Devil Wears Prada 2 right now. She is working to turn um the book into a film um which should be um really exciting and just a great way to to get the word out about all of these lessons we've learned and about the power of the medicines we already have.

Yeah. Well, for all the negatives that we say about social media, the reason we're sitting together is because Dan over here saw you on uh social media from Humans of New York. Shout out to them for highlighting your story and hopefully we can be that platform that also highlights your journey to someone else. I think that would be incredibly valuable.

Well, this means so much to me. Dr. Mike, Mike, I I look up to you so much. I admire you so much. And to be able to spend this time with you, it's just it's been awesome.

Yeah. Very awesome. And I know uh I'm not Bill Gates and it's a drop in the bucket. I'd love to donate $10,000 to your foundation to help continue on the journey and encourage my audience. Donate if you can. Uh, we also do something called Are you familiar with Patreon?

I'm not. No.

So, Patreon is basically an add-on that you can get your audience to pay for uh for like a monthly membership to get extra access to live streams, to behind the scenes content, just some other added value. And we take the $9.99 that our members give and every month we choose where to donate it. So, I'm going to push this month's donation as much as I can my sway cuz people vote for it. It's wherever the members want it to go. But hopefully based on our conversation, they're going to be very passionate about pushing it to your organization.

Oh, that means so much. And hopefully the the funding that goes towards our work helps a viewer or multiple viewers supporting this. That's that's what this is all about.

Thank you so much for your transparency, your honesty, and most importantly, your hard work.

Means so much. Well, thanks so much for having me.

Sophie Grace Holmes is an endurance athlete who ran 36 marathons in 36 days, all while living with cystic fibrosis. Click here for that incredible story. And as always, stay happy and healthy.