Episode 1474: Race For The Cure

We have a special guest today. I'm talking today with Dr. David Fagenbaum. He has an incredible new memoir called Chasing My Cure, A Doctor's Race to Turn Hope into Action.

And his story is truly unique. It's a tale of learning to live while dying. And it's about getting up and fighting back when life tries to knock you down. And you've probably heard his story recently.

He's been on CNN and Good Morning America and on all sorts of publications. I'm forgetting probably 20 of them, but he's on a mission to tell a story and he's in a race to find a cure. And so Dr. David, thank you so much for taking a few minutes with us today.

Thank you so much for having me. Hey, you're, you're, you know, I want to take a few minutes and just, I want you to tell your story because it needs to be told in your timing, but I do want to set the stage to you. I mean, you were a college football star, Ivy league doctor, beautiful family and, and some surprises, major life changes, surprises happened to you along the way. So start as early as you want with us.

And no, just want to, I want our listeners to get to know you. And then we'll talk more about about your book, too. Yeah, you're absolutely right. So I was a I grew up in Raleigh, North Carolina, and my lifelong dream was to play college football.

I really focused my whole childhood on training to become the best quarterback I could be with the goal of playing Division I football somewhere. I had incredible support from my parents and friends and family and really on this kind of singular mission to play college football. and I ended up having the opportunity to play football at Georgetown Patriot League School where I was recruited to play quarterback and was so thrilled to achieve this lifelong goal. And then a couple weeks after I got to Georgetown, my mom was diagnosed with a terminal brain tumor, a glioblastoma brain tumor, which we knew had a very poor prognosis.

this just totally shattered my life and my worldview and it made football and playing college football a lot lower priority for me. I really struggled of course you know with my mom really one of my best friends becoming so ill and and then passing away about a year later and her her illness and her passing really just devastating for me and as a result of going through that, I decided that I would dedicate my life to becoming a physician, to fighting cancer. I decided to switch to pre-med.

I wanted to go to medical school. I wanted to treat cancer patients in my mom's memory. I wanted to get involved in cancer research to save future patients' lives. And so my life's focus went from football to wanting to become a cancer doctor.

And I ended up going to graduate school in England and then coming back to the States for medical school. And there I was now as a third year medical student, really far along my path of becoming a cancer doctor, racing towards this dream. And then I had another major life event. And that's when I became deathly ill with a disease at the time that wasn't diagnosed, but where I experienced multiple organ failures.

So my liver, my kidneys, my bone marrow, my heart, my lungs all shut down. I was hospitalized in the exact same hospital that I'd been treating patients in. I was in the intensive care unit. I was so sick that I actually had my last rights read to me because the doctors didn't think I was going to survive.

And it was just a frightening, frightening time. No diagnosis. Doctors, everyone thinking I wouldn't survive. Fortunately, right around the time that my last rites were read to me, we received the diagnosis.

I was diagnosed with a disease called idiopathic multicentric Castleman disease, which is kind of like a cross between an autoimmune disease and a cancer. And unfortunately, it's very poorly understood. And about a third of us die within five years of diagnosis. Another third will die within 10 years of diagnosis.

And so it was frightening to get that kind of diagnosis. But Fortunately, with getting the diagnosis, I was started on chemotherapy, and that chemotherapy saved my life. I was able to get out of the ICU, start to improve, but unfortunately, I relapsed shortly thereafter. Again, I spent weeks in the intensive care unit, and I needed multi-agent chemotherapy.

I needed a combination of seven different chemotherapies to try to kill this disease. Again, fortunately, my life was saved thanks to chemotherapy. But at this stage, I'd spent almost six months hospitalized battling this disease. And I was put on an experimental drug, a drug that I hoped would keep me in remission forever, a drug that had been helping other patients.

And I went back to medical school. I went back on my path of becoming a cancer doctor in memory of my life. And then I relapsed again on the only drug that had ever been studied for my disease and that has ever been studied for my disease. And I ran out of options.

And I learned that there were no other promising leads for new drugs. There was no one doing promising work. And that if I wanted to have a future, if I wanted to live and if I wanted to be able to continue to fight this disease, that I would need to get involved in research. If I hoped for a cure, I would need to turn that hope into action.

And so in 2012, I promised my dad and my sisters and my girlfriend at the time that I would dedicate the rest of my life, however long that may be, to trying to cure this disease. And I was a third-year medical student. And since then, I've just been racing full speed after trying to advance research and treatments for this disease. Wow.

Thank you. And I've got so many more questions. But thanks for sharing your story. I know it's tough.

And you been living it for a long time that way And man you know you I know one thing about athletes I work with a lot of pro athletes and athletes are fighters athletes you know you you you went pretty quickly to yes and had the opportunity to play division one Well, that, that, that's doesn't just get handed to you. You work really, really hard to get to that point. So you're already, you know, you've already shown yourself to at that point, your early age, that you are a fighter.

And then that's, that's just in your DNA that you can't help it. And, but, but I want to take a minute. I don't want to stay on it, but you know, I've had health scares where I thought I thought I had a heart attack and was fighting for my life and it changed my life. And then I was okay.

And it was nothing compared to the fight that you're going through. And it really hit me hard. And when, when, when I heard your story, what help, most of us haven't had our last rights read to us. So most of us listening have not had that happen.

Yeah. What take me to that moment. We won't stay there, but what is, what is that like? And how do you, how do you, what is your mindset to get past that?

Yeah. So I had my last rites read to me one time, but now it's been, excuse me, five times that I've come this close to death and where the doctors didn't think I would survive. And with each of these experiences, it was, as you can imagine, it was scary. It was so tough to see what it was doing to my family.

That was probably the toughest part was watching my dad, my sisters, my girlfriend, putting them through. And as I laid in my hospital bed each time, and particularly the first time when I had my last rights read to me, I looked back on my life. And I reflected on what I did, what I didn't do. And I started to regret things.

And what I realized was that I didn't regret anything that I did do in my life. And I didn't regret anything that I did say. What I regretted were the things that I did not do and the things I did not say to the people that I loved Things that I knew that I would no longer have time to do because I would die within the next day or two That really Taught me a lot about life and you you started off this this podcast by saying, you know I learned a lot about life and about living from nearly dying five times and fighting back and and one really important lesson for me was learning that what I regretted and what I think others may regret at the end of their time is what they didn't do or what they didn't say.

And so that's led me to kind of live by this motto. I call it, think it, do it. And it's basically, you know, if you think about doing it, if it's the right thing to do, you should do it. Because if you don't say those things to the people you love, if you don't do the things that you want to do, then there will be a point where you may regret And the other is something that fellow sports fans will, I think, certainly resonate with, and that's this concept of overtime.

So I've considered myself in overtime ever since the first time I nearly died when I had my last rights read to me. And as you know well, overtime is a time where it's extra time you didn't think you'd have, but every second counts in overtime. If you throw a bad pass in the first quarter and it gets picked off, you can make up for it. You've got three more quarters to make up for it.

But if you throw a bad pass that gets picked off in overtime, game's over. And I live with this sense of being in overtime that every second counts and that I need to make the most of every second. And really I'm in my fifth overtime right now. I've nearly died five times and I have this clear sense that every second needs to count.

But what I've learned and what I've realized is that actually we're all in overtime. Each of us doesn't know how much time we have and each of us needs to make the most of every second. Absolutely profound. I've got goosebumps in my arms right now.

Thank you for sharing that. It is think it, do it. The concept of living in overtime is, and you really have been, your fifth overtime. Wow.

Right. And we need to live that way. And that's amazing. I hate that it has to be you sharing the lesson and that your life has to do it, although in some ways it's beautiful and it's poetic and it's amazing.

But our listeners, we need to learn from this. this is in it i always say it's okay till it's not and then if something happens it's too late and then you're looking back and you've gotten five more chances and so if we can learn from that i think it's really important so i want to first of all what what was it like when you went through and realized the experimental experimental treatments were not going to be a solution and that it was that it was on you i mean from a business standpoint i've realized in our business before where, oh, it's on me to step up and I'm business development.

I realized there was no one else that could do it. I stepped out. I had to step back in. Wow.

That seems like a really small example now, although it was big to me at the time. But here you are with your life realizing there is not a known solution here. And I've been read my rights and I'm here and I'm on another overtime. And now I've got to figure something out.

What is that like? Yeah, I think for me, the most notable sense that I felt was just loneliness. You know, here I was a third year medical student at the University of Pennsylvania, one of the best research centers around where I just kind of assumed that there were researchers working on things all over the world. And even if I didn't see them, they must be making progress.

And for every medical issue, there must be someone out there that's making progress. And it was in hindsight, I think that now I look back on it, maybe that was a little naive, but I think that many of us really believe that there are researchers out there figuring things out. And there are for a lot of diseases, but for a lot of diseases, there actually are not people out there figuring things out. And it was really, it made me feel incredibly lonely.

And it also was really scary for me. And it really just kind of broke this sense that I had that there was kind of order and that there must be researchers out out there figuring this out. It was a really tough moment for me in my life. But it did kind of give me clarity that I had been hoping and praying that someone somewhere would figure out my disease, but I had not taken any sort of action over the previous three years I went back to medical school I planned to become an oncologist to treat patients in memory of my mom but I didn do anything I had not taken any action to get life closer to what I was hoping for, the things I was praying for and things that I was hoping for.

I wasn't doing anything to get us any closer to those. And so for me, it made me realize that if it's something that is important enough to me to hope for it, if it's important enough to me to pray for it, then I really need to spend time reflecting on, well, what can I do to get us closer to that hope becoming a reality or that prayer becoming a reality? And for me, it was really tough to learn that and to be in a position where if I hadn't learned it, I would have died shortly thereafter.

But it's really kind of the ultimate stakes, right? And so I knew that I needed to get to work. And for me, getting to work was starting a foundation called the Castleman Disease Collaborative Network to take a unique approach to advancing research or an approach that brings together patients, physicians, and researchers all together to prioritize research and to recruit the best minds to do Castleman's work. And in parallel, I began conducting laboratory research myself.

So I got space in a nearby laboratory where I could start performing experiments on my own samples and trying to find something, maybe a drug that already existed for something else that could maybe help me. Everything you're sharing is flooring me here. And I know it's because it's such a profound story. But just, again, to go back and see, you know, I think of stories from the Bible as you talk about prayer and, you know, for Moses to pray for somebody to deliver.

And then he said, oh, it's going to be you. It's like, wait, me? Why me? You know, of all the history of time, why me?

And for you to realize that word loneliness really got me. Wow. I mean, yeah, that makes sense. It does.

But then to realize, I mean, what was that like then? What was that fight that came back in you? they said, okay, well, I guess I'm the one who's going to be called to look for a solution. I mean, that's a global, that's a game-changing impact on everything.

Yeah, it was, as I said, it was lonely, it was scary, but then it was really, I guess, almost clarifying in the sense that like, okay, like there's, you know, no one else is going to do this. If I don't do it, no one will. And if I, you know, I'm sitting there looking at my girlfriend at the times thinking, you know, if I don't figure this out, then, you know, I won't be able to spend more time with her. I won't be able to maybe have a life with her.

And at the time, I was so sick and I was in and out of the hospital that I wasn't really thinking, you know, years together. I really was thinking, you know, what can I do to get months more together? You know, what can I do to keep me alive, to just make the most of every day, honestly? It wasn't even, I really wasn't measuring expected time in months, but it was just, you know, what could I do to spend more time with the people that I love.

And, um, yeah, I realized that, um, if I didn't do it, that no one else would. And I certainly wasn't confident that I would be able to do it. In fact, I think that I probably didn't think that I was going to make any progress, but I knew that I knew there was a 0% chance, um, if I didn't do anything. And I knew that there was probably a very small percent chance if I did something.

Um, but you know, of course, thinking about a sports metaphor, you know, you miss, you miss 100% of the shots that you don't take. And, um, I knew that if I didn't get going on trying that, um, that I would run out of time. And, and so, you know, I decided to get going. Wow.

Again, thank you for sharing that making the most of every day. You know, I think a lot of us who, who, who maybe don't think we're in overtime months doesn't, don't seem like a big deal. You know, we're looking at quarters and years at a time and, and, and some people honestly are just trying to get through the day. I talked to a lot of leaders.

I talk to a lot of men because I'm a father and a business owner, and I work with a lot of men in different mastermind groups who are really just trying to even figure out how do I even be present with my family when I'm home, let alone do my day-to-day things. And they're just thinking about it and getting through it, not enjoying every moment. And so your perspective here is just profound in making the most of every day and looking at it in days and weeks and months to enjoy and cherish that time.

Thank you. Tell me about - I mean let's talk - we've got about five, six minutes left. I'd love to take a few minutes and let's - I want to hear - so you talked about your girlfriend. And I know you've had some progress since then because I've seen some of the news stories.

I know your story. Tell me about that and then I want to hear more about just with your book. I want to hear more about what people can expect when they read through this memoir. Yeah.

So at the time of my fourth flare, the fourth time I nearly died, Caitlin and I were dating. And as I said, I was just hoping for days or weeks or months of more time with her and with those I love, my friends and my family. And I got to work. I rolled up my sleeves, started doing lab work, created this foundation.

And was making some progress, certainly as quickly as I could, when I relapsed about a year later. And again, nearly died for the fifth time, needed multi-agent chemotherapy to save my life again. And this time it was maybe even more difficult because I had just gotten engaged to Caitlin just a few weeks before I relapsed. And so the stakes almost felt higher.

And it was mainly, again, it wasn't that I was sad that I wouldn't have a long life with her. I think that I was really sad that I wouldn't make it to our wedding day. I was, again, living in a very short-term sort of mindset. our wedding day was five months away and so when I got out of the hospital and I survived for the fifth time I really got to work diving through all of my data to see if I could find some signals in my data to suggest that a drug might be effective for treating my disease and I go through this in detail in the book as to kind of how I got to to identify this drug and think that maybe it could work it was developed for another disease 25 years ago it had never been used before for Castleman disease, but I decided to give it a shot because I had run out of options and all I wanted to do was make it to May 24th 2014 our wedding date And so I started myself on this treatment And just as you mentioned and obviously because I here today on this podcast I survived through May 24th, 2014.

We were able to get married. And I've continued to fight for this disease. I don't know. It's been about five and a half years that I've been in remission now.

And I dream and I hope and I pray for a long future with my wife. But I also know that I may relapse tomorrow and that I know that my overtime may end tomorrow. So I run a foundation that's fully focused on accelerating research for Castleman disease. There are about 5,000 patients diagnosed each year in the U.

S. with Castleman disease. So it's about as common as ALS, but obviously a lot less well-known. And so I pushed for new drugs and new research.

And then I also run this foundation. And thankfully, a little bit over a year ago, my wife and I had our first child, Amelia. Amelia has been such a gift. As a parent, I know that you can appreciate what kind of gift it was to have Amelia.

And so, you know, I live every day is a blessing. But I also live knowing that I need to keep pushing things forward. And that's, you know, the main reason I wrote this book is to share the lessons I learned about life and about living from nearly dying. But I also wrote this book because I want to raise awareness about Castleman disease and about rare diseases more generally.

These are diseases that are taking people all over the U.S. that are, you know, these deadly illnesses where we need to do more research. And so I'm really hopeful that this book will help to inspire people to live in overtime, to think it, do it, to turn hope into action, and as a byproduct also help to raise awareness about these really frightening and mysterious rare diseases.

it's a beautiful story you know just the story of your wife's commitment to you and your commitment to her and you know those things can go so many different ways when crisis and tragedy happens and to see to see that it's just it's just such a beautiful it's a beautiful love story and then my daughter's not amelia she's emily and i so i love the love the context of that name as well and that's uh just i love hearing that uh chasing my cure.com is that the best place to go to to find your book?

Yeah, the book's available everywhere books are sold. So any local bookstore, you can pick up a copy. It's, of course, also available on Amazon. And if you get a chasing my cure.

com, you can see various places that you can order it online or in a bookstore. You can also read up a little bit more about my story and also read some reviews that others have written. It's been such an honor. The book came out on September 10th, and I got a chance to travel around the country for a couple weeks and spoke to almost 5,000 people over those couple weeks.

And it was so special to hear people talk about what the story meant to them. Of course, there have been so many low points and also so many high points in my journey that the idea that what I went through and these low points that I endured, the idea that those could actually help someone else in dealing with their own challenges kind of makes it easier to think back about what I went through. and what my family went through to think that this is actually able to help others.

And I really hope that it can be an inspirational story that can help many, many more people. Yeah, when you say high points and low points, I know when you say low points, those are very raw moments that are - they're not even moments. They're whole sections of your life with IVs and treatment and diagnosis and feeling that you're letting your family down and seeing the look and all those things. And so for you to share that with us, and I know, again, you have to say it very quickly, high points and low points and lessons, but I know when you say that, that those valleys are some massive valleys that you had to live and continue to have to fight through sometimes.

And so for you to share that with us unselfishly as you are, I appreciate that. And I just wonder, is there any final thoughts about what do you want our listeners, what do you want people to take away from your story? I think the main thing is living in overtime. I think that everyone can understand the heightened sense of awareness in overtime and really being intentional about every move in overtime.

You can't make a mistake. And I think that we should all live like that and not that we should be afraid to make a mistake but that we should be liberated to know that every second counts and let's make the most of it. Let's do the things we love doing. Let's be with the people that we love being with.

Let's tell them how much we love being with them. And I think just being liberated to know that time is so precious. Let's make the most of it. And there's a lot more that obviously I wasn't able to cover today and a number of lessons from kind of approaching death that I really hope that readers will be able to take away and be able to start to implement in their life now.

So they don't have to wait until they have their last rights read to them. They don't have to wait until they go through all that I've gone through to learn these life lessons. Dr. David Fagenbaum, thank you so much.

Again, that book is Chasing My Cure, A Doctor's Race to Turn Hope into Action. You can get it at any bookstore near you. You can go to chasingmycure.com.

You can see it on Amazon. And I really appreciate you taking the time today. It's an inspiration. My heart is definitely touched, and I'm excited to share this book with others and to watch what you're doing.

And if we can help in any other way for any reasons, please don't hesitate to reach out. Thank you so much. It's an honor to be on your show and just so appreciate this opportunity.