Good Life Project - Chasing My Cure | Dr. David Fajgenbaum

Episode Date: September 21, 2020

As a kid, all David Fajgenbaum could think about was football. It consumed his life, being the quarterback on a top college team was his singular mission. And, he accomplished that, landing a spot on Georgetown’s team. But, fate would soon step in, when the loss of his mom to aggressive brain cancer would change his focus and inspire a new devotion, to help find a cure and support families moving through loss. But his dance with illness was just beginning. In the blink of an eye, Fajgenbaum went from being a beast-like college quarterback to receiving his last rites while in medical school and nearly dying four more times battling a rare disease, with no known cure, that ravaged his body with a cytokine storm that essentially set his immune system up to attack every other system in his body. To try to save his own life, and realizing nobody was coming to save him but him, David spearheaded an innovative approach to researching his own cure, launching the Castleman Disease Collaborative Network (CDCN) and discovering a treatment that has put him into his longest remission ever. This alone, is an incredible story. But, that thing I mentioned was killing him - a cytokine storm - well, you’ve likely heard that phrase many times this year. Because it is at the heart of the immune system meltdown that makes the Covid-19 pandemic so lethal. David is now focusing this same approach to other diseases ('His method could save millions,' CNN) like COVID-19, turning his lab and collaborative global network loose on identifying drugs that might be lifesavers when used “off-label” to treat the disease. His powerful story is beautifully documented in his book, Chasing My Cure (https://amzn.to/39XgMtq), which has been translated into five languages and named one of the “Best Non-Fiction Books of 2019” by Next Big Ideas Club.You can find Dr. David Fajgenbaum at:Website : http://www.chasingmycure.com/Instagram : https://www.instagram.com/dfajgenbaum/-------------Have you discovered your Sparketype yet? Take the Sparketype Assessment™ now. IT’S FREE (https://www.goodlifeproject.com/sparketypes/) and takes about 7-minutes to complete. At a minimum, it’ll open your eyes in a big way. It also just might change your life.If you enjoyed the show, please share it with a friend. Thank you to our super cool brand partners. If you like the show, please support them - they help make the podcast possible. Hosted on Acast. See acast.com/privacy for more information.

So as a kid, all David Fagenbaum could think about was football. It consumed his life. Being the quarterback on a top college team was his singular mission, and he accomplished that, landing a spot on Georgetown's Division I team. But shortly into his college run, fate would step in when the loss of his mom to aggressive brain cancer would profoundly change his focus and inspire a new devotion to help find cures and also really to support families moving through loss. But his dance with illness, unbeknownst to him, was just beginning. In the blink of an eye, Fagerman went from being a beast-like college

quarterback to receiving his last rites while in medical school and nearly dying four more times battling a rare disease with no known cure. This was a disease that ravaged his body with something known as a cytokine storm that essentially set his immune system up to attack every other system in his body. And to try and save his own life, he eventually realized nobody else was coming. It would have to be him. So he spearheaded a innovative approach to researching his own cure, launching along the way the Castleman Disease Collaborative Network and discovering a treatment that has put him into his longest remission ever. Now that alone is an

incredible story, but that thing that I mentioned was killing him, a cytokine storm. Well, you have likely heard that phrase many times over the last year or so, because it is also at the heart of the immune system meltdown that makes the COVID-19 pandemic so lethal for so many people. David is now focusing that same approach to finding a cure or treatment for other diseases on COVID-19 and so many other conditions, turning his lab and collaborative global network loose on identifying drugs that might be lifesavers when used, quote, off-label to treat diseases and illnesses. His powerful story is beautifully documented in his book, Chasing My Cure, which has been translated into five languages and named one of the best nonfiction books of 2019. I am so excited to share this conversation, his insights,

and wisdom with you. I'm Jonathan Fields, and this is Good Life Project. The Apple Watch Series 10 is here. It has the biggest display ever. It's also the thinnest Apple Watch ever, making it even more comfortable on your wrist, whether you're running, swimming, or sleeping. And it's the fastest-charging Apple Watch, getting you eight hours of charge in just 15 minutes. The Apple Watch Series X.

Available for the first time in glossy jet black aluminum. Compared to previous generations, iPhone XS or later required, charge time and actual results will vary. Mayday, mayday. We've been compromised. The pilot's a hitman. I knew you were gonna be fun. On January 24th. Tell me how to fly this thing. Mark Wahlberg. I've heard you describe your life as two halftimes and five overtimes,

which is kind of interesting, you know, because it, sports reference comes easy to you. Growing up as a kid in around Raleigh, North Carolina, it sounded like your life, you pretty much lived, it was like football was your religion almost. Yeah, that's right. Tell me, I mean, what, what was it about that? Because there seems to be, interestingly, some foreshadowing in terms of conviction and devotion and work ethic that showed up there and relentlessness that has transferred later into life. But so I'm curious, what were your aspirations back then?

Early on, I just had this dream of one day playing college football. And I don't know if it was because I was so close to the NC State football team. My dad was the team doctor for NC State. And so I spent so much time there and kind of just idolizing the players. And I love the sport. I love the, I guess, the athletic part of football, but I also always really, really liked the strategy part of football. There's, as you know, there's so much more going on between snaps and during snaps than, than you necessarily can see. And so I just, I loved the game. And I think as now I look back, you know, many years later, I think that it also is probably just a reflection of my personality

that I locked on to something. And yes, there are things about football that I love, but it was also just the thing that I was locked on to and the goal that I had set. And so I just put everything I had into it. Yeah. So your doctor was the team doc for the team. My dad. Yes, that's right. Yeah. Your dad. Yes. Did he share any of the experiences? Because I know it's interesting because football has had an interesting reputation and it's had a spotlight over the last really decade from a medical standpoint. I'm curious whether as you were coming up and playing at higher and higher levels, your dad being the doctor who was working with a lot of football athletes, whether you guys had ever had conversations about that? Well, so my dad actually included me with him for like everything. I mean, I was on the sidelines with him for football games and I was in the locker room with him before games and halftime

and after games. And so I was very much with him throughout. And, but I do have to say that this is like the nineties, two thousands when, when we really just didn't know what we know now. I mean, we thought concussions were a temporary thing that you just kind of worked through over a few days. We had no sense for, for the long-term impact of them. And so as I look back on, on that, I mean, it was almost like we were playing the sport and we didn't know the risks. And you had aspirations beyond, I mean, high school was, you know, one big thing, but also it sounds like you had aspirations for sure for college. Was there an inkling in your mind that said, I want this to be my career or was it just,

did it never sort of like get to that level? You know, I, the goal that I had was to play college football. That was growing up. That was it. That was the goal. It wasn't to play professionally. It wasn't even certain things to do in college. It was just, I want to play college football. And as you know, that kind of singular focus then changed once I got there. But really for me, it was play college football. Yeah. I mean, I'm really curious about what you said also that you were kind of obsessed with not just the physical aspects of the game, but the strategic aspects of it. You ended up playing QB, playing quarterback. And so it's almost like there's a huge strategic aspects of it. You ended up playing QB, playing quarterback. And so it's almost like there's a huge leadership aspect to it. There's a lot of complexity and there's a requirement in that position to process vast amounts of information and a lot of complexity

that's changing in real time. And also not just think about it, but make decisions and take action. Yeah. It's something that I loved about the game was that exactly all those things, integrating so much information, acting on it. And it's something I enjoyed, but I don't think I realized just how important those sort of skills would become as I've moved on and dealt with other challenges in life. So you end up actually in Georgetown playing football. What were you actually studying there? So I planned to go, when I chose to go to Georgetown, one of the main reasons that I wanted to go there is because they had a really strong pre-med program and I wanted to do a health sciences major because I was really interested in sports medicine. It was okay, this is kind of a

way to meld my interest in medicine with my interest in sports. And so I was from the very beginning interested in going into medicine. But as you know, everything really changed once I got there and my interest in sports medicine really, really shifted. So you're there, you're playing ball, and then you get some pretty shattering news about your mom. That's right. I was actually only on campus for about three weeks when I got this call from my dad saying that my mom had a brain tumor and that I would need to come home right away. And so I traveled back to Raleigh

and I actually got back to Raleigh just in time to be able to be in the waiting room during her brain surgery. And I remember being so frightened for, was she going to wake up the same person? Being so frightened, was she going to survive? What form of, you know, what was this cancer? How severe was it? And thankfully she survived.

But unfortunately we found out some, some pretty tough news about, about how bad of a cancer it was. And in the midst of all of this, when we were going through probably the lowest point of my life, we went back to see my mom after her surgery. And we just didn't even know, would she still be the same mom from before? And I remember when the nurse pulled back the curtain and we saw her, she had a bandage around her head and had a bulb coming out of her skull, which was draining fluid. And no one knew what to say. I was wiping away tears.

And my mom pointed up to the wrap and to the bulb and said, Chiquita Banana Lady. And we just burst into laughter. And it was this example of my mom trying to create some light in the midst of darkness. It just, as I look back on it, I mean, she literally was newly diagnosed with cancer. She'd just gone through hours of brain surgery. And she made that joke for us. That wasn't for her. That was to make us smile.

That was, that's a lesson and kind of a principle that I've taken with me. Yeah. I mean, it was also, it sounds like your mom telegraphing to you, like, I'm still here. I'm still in here. Like, I've had surgery. Nobody knew if I would come out. I think it's one of the things that a lot of people maybe don't think about with any sort of, whether it's traumatic brain injury or brain-based surgery, is that who we are from a personality standpoint

is in this thing that sits above our neck. And any changes to that, you can literally emerge a different person. That's exactly right. And we were terrified that that's what was gonna happen. You're right, she was showing us, I'm still here and she wanted to make us smile. Yeah, it sounds like the caretaker in her, the nurture in her was also fiercely on display.

Absolutely. Was that sort of her, I mean, was that how you knew her as a kid as, as really deeply in that role? Oh, absolutely. She was the ultimate just supporter, caregiver, love, just kind of share of love. She was just an incredible person. And when I think about my mom to her core, I think about her during tough times and how she was there for people during the really tough times. And she was just the shoulder to lean on. I remember when I, just a few weeks after that surgery, I was going to the pharmacy to pick up her medications. I remember filling the prescription for a number of different chemotherapies and the pharmacist who I had never met before, I said, who are you picking these up for? Because she recognized the last name, I said, for Ann Marie Fagenbaum. And she just burst into tears. And I was like, do you know

my mom? She said, yeah, your mom's been there for me during all these challenges. I guess she'd gone through a divorce that when somebody's sort of wired that way, and then they end up in a circumstance where they're the person who needs to receive, that it can be really tough. And also that shift in dynamic between you and that person, like the people that normally that person would care for, and now the role is reversed, can be really challenging for everybody involved because it's not an easy thing for that person to receive. And it almost makes it harder for those around them to give. Oh, I totally agree. I mean, what I think ended up happening is that my sisters and I almost started emulating her from the way that she was before she got sick. And so that we could kind of

be there for her the way that she'd always been there for us. But it was really, really tough for her. Yeah. And meanwhile, as you mentioned, you're really early in a college career. You had everything. It sounds like so much of your effort, your energy, your waking hours had been devoted to this one thing until you're 18 years old. You get it. You show up, you are about to start it. And then in the blink of an eye, everything changes. I know it's weird to even sort of explore, but I wonder if you're going through this process of the one time fierce concern about your mom, but also this background realization

that the thing that you had worked for for so long was A, no longer nearly as meaningful, but also B, maybe you're grieving the loss because maybe it's just never going to be what you thought it was going to be. Yeah. And it's funny because for me, it was really more the former where for some reason within like a split second, it just football, which as you said, literally I'd spent all waking moments for about a decade on this goal of playing college football. And within that one sentence of my dad saying, your mom has a brain tumor, you need to come home. Everything changed. I mean, football all of a sudden became the lowest priority for me. And all I could think about was my mom's health and soon

started thinking about, oh my gosh, helping people like my mom at the most critical moments in their life. This is what I want to do. I think sports medicine is so important. And I love that my dad did that sort of work and found a lot of meaning in it. But for me, it just became, that's not what I want to do. What I want to do is I want to help people that are in these sort of situations. Yeah. So I guess when you return also, I mean, that starts as you end up being pre-med, but also even within college, your mom eventually does lose the, I don't even know if it's appropriate these days to use the word battle with cancer.

I know there are really mixed feelings about that, but she loses her life to this terrible disease from what I understand a little over a year later. So you have to, and your family are going through this loss process, but also it sounds like you externalize it and say, okay, so I can't be the only one going through something like this. And how can I be a part of something bigger? That's right. I made a promise to my mom that at the time, it was the last time that we spoke, it was about two weeks before she passed away. And I just promised her, I said, mom, I'm going to be okay. And I'm going to help other kids just like me. And I had no idea what I was really talking about. I really hadn't thought about it very much. But as we said earlier, that was what my mom did. My mom during tough times, she was just there for people. And it felt like, um, as you said, there, there must be other people

going through the same thing. And so making this promise to her now, all of a sudden that focus laser focus that was previously on football now became, okay, I'm going to start something in my mom's memory. I'm going to name it AMF after her. And I'm going to see if there are other college students coping with the illness or death of a loved one. Were there others? I mean, and were you surprised at the response? I was totally shocked. There were friends of mine from my first year at Georgetown who literally had just gone

through either the death of a loved one to cancer, or they had a recent diagnosis. And we were friends throughout that year and had never spoken about it. I hadn't shared about what I was going through. They hadn't shared about what they were going through. And it really opened up this concept where we all felt alone, but we really weren't. We just felt alone because no one was talking about it. So that really lit a fire in me that not only do I need to do this because I promised it to my mom, but oh my God, there's a huge need here. We're all suffering in silence. Yeah. What was the feeling for you when you start to realize that, okay, all these people that I've

known and just to kind of assume that they were like keeping on, keeping on and at college and doing their thing, that underneath the surface there was this deep sense of loss and sorrow that you were all struggling fiercely with but nobody was was sharing yeah it really just drove me to to pour all of my waking hours into this into this work because there were so many people that were just waiting for the right forum or the right platform or the right space to feel safe enough to actually share. And so that became kind of my new football where that was kind of where I put all my time. And it does sound like the, you know, we talked about the fact that

you through practice, through intention had developed this fierce work ethic and devotion. It seems like a real single-mindedness, Angela Duckworth would probably describe it in some way as grit. And it sounds like that is something which is almost a trait level thing for you rather than a state level thing for you, because it seems like it is this thing that continues to transfer. So as you're doing this, you end up also then in Oxford going to grad school, decide you want to build on that, go into medicine, as you said, but not for sports, but for sort of like a different focus. You're in med school, you're working hard, you are in your mind building a career. You're doing all the work, getting an education. You're, you are learning how to take care of other people who are sick. And once again, in a way that you never saw

coming, everything gets derailed. That's right. Out of nowhere, I was on a OBGYN rotation at the time. So I had literally just helped to deliver my first baby, like helping to bring life into the world. And then within weeks of what I really, I consider that to be kind of a pinnacle experience in medicine. Within weeks of that, experiencing fatigue like I had never felt before. I noticed these like lumps and bumps in my neck, which I didn't, I had a sense for what they were, but I didn't really want to go there mentally. Just started getting more and more ill and noticed fluid around my ankles and abdominal pain. And I kept kind of putting off going to see a doctor and saying, well, I'm on this really important rotation. Let me just get

through this rotation. Afterwards, I'll go see someone. And I remember taking my medical school exam. I was so sick. I was just dripping head to toe in sweat. I had fevers and I felt awful. And I remember during the exam thinking to myself, is it A or is it C between these like answer choices and then saying, well, it doesn't matter because whatever I have, I'm not going to be around for much longer. And that's, that's what went through my head. And I was like, why am I thinking that way? You know, what's going on here? But, but I really had a sense that this wasn't an illness like I'd ever felt before, that whatever I had was really, really, really bad.

And so I turned in my exam and I walked down the hall because I was already in the hospital and I went to the emergency department. They ran some tests and I'll never forget the doctor walking in and saying, David, your liver, your kidneys, your bone marrow, your heart, and your lungs are all shutting down. We need to hospitalize you right away. And, um, and unfortunately I don't really remember very much over the next seven to 11 weeks because I was so, so sick. Mayday, mayday. We've been compromised. The pilot's a hitman. I knew you were going to be fun. On January 24th. Tell me how to fly this thing.

Mark Wahlberg. You know what the difference between me and you is? You're going to die. Don't shoot him, we need him. Y'all need a pilot? Flight risk. The Apple Watch Series 10 is here. It has the biggest display ever.

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jet black aluminum. Compared to previous generations, iPhone XS or later required, charge time and actual results will vary. It's interesting also, I think some people would hear the story like this and also wonder, okay, so you're somebody who has seen somebody very, very close to you be diagnosed with something, go through it and then lose their life to it. You're in med school. You're surrounded by every possible opportunity and resource to kind of say, oh, wait a minute, let me immediately dive into this and see if I can figure out what's wrong.

And yet at the same time, you are just massively heads down. You're like, no, no, no, I've committed to this thing, to this education, to this round. And I'm not going to pull out of it no matter how I feel, no matter how much my intuition is saying there's something really wrong until I've sort of like checked the final box there. Yeah. I think that it goes back to what you were saying where there's, I think something a bit intrinsic to me about being single-minded on a goal. And there's never been room for swaying off of that path. And certainly, my own health had never previously forced me to go off that path. And so I didn't want it to here, but eventually I had no choice. Yeah.

I mean, I'm curious, even before you eventually walk down to your yard and get all the tests and realize, okay, all systems are shutting down, you say you had this intuitive knowing that this was really, really bad. Do you have any sense for whether that was related to your experience with your mom or whether there was just something else going on? It's so hard for me to wrap my head around it. And it's funny, things like this were things that after they happened, I didn't really take my brain back to them to reflect until I started writing Chasing My Cure. And then all of a sudden I was forced to pull out these memories that I didn't want to think about. But in writing it, I had to think about them. And I think that it's hard for me to really put my finger on it. It was probably a combination of it was sicker than I'd ever felt before. But it was also, as you said, I was in a setting in medical school where I was watching people

get really, really sick and dying in front of me. And there's almost a pattern you can pick up. And as you're watching patients who are the ones that you're going to worry about the most because they're the most sick, that I was starting to sense there's another experience around that time where I told my roommates that I thought I was dying as part of my describing how sick I felt. And that just is not my personality to be kind of dramatic and exaggerating like that. And that kind of caught that. And that like, kind of, I like caught myself and like, did I really just say that? I don't really, am I really dying? I mean, I'm just really tired right now. Um, and then as, as we discussed, I, I actually,

I was. Yeah. I mean, I wonder also if when you come from a sort of like a background where you feel relatively invincible, you know, and you had up until that point, you know, you're, I mean, I've seen the pictures that are out there of you when you were at, you know, in peak condition, competing on the field and you were a physical beast, you know, you, you were sort of like what people would define as optimally fit and well. So it's almost like when you take that and there's a sense of invincibility that has to be there to do this thing that you had trained to do, that when you transfer that into the possibility of profound medical trauma, that it's almost like you can't quite process

it because that's just not you. Yeah. And I think that it went so counter against the fact that I, you know, ate exquisitely well, I exercised all this, you know, so often I, you know, did all the right things to be healthy. And, and the truth is, is the same, same situation with my mom. She was so healthy in so many ways and still became ill. But, but you're right. You. My mom, she was so healthy in so many ways and still became ill, but, but you're right. You get this sense. I think that when you are very healthy and you're doing all the right things that, that, that bad things just, you know, illnesses shouldn't come. And especially, you know, you get a sense also, you know, if you're, if you're doing good

things that, you know, maybe really bad things shouldn't happen. That's such an interesting addition, actually. It's almost like, well, if I am on purpose and that purpose is to make a huge difference in the greater good in humanity, then I should be somewhat protected. And yet there's so many people out there and that's not the truth. Absolutely. I think that I'll definitely say that I felt that certainly with my mom. I mean, I really felt less with me, but more just like, oh my gosh, she's just like, just helping everyone doing all the right things. How could someone with this sort of like mission and purpose, you know, not be able to continue to do all this good, but you're right. I mean,

there are just far too many examples where that's not the case. You go into this window of almost three months of just spiraling downward, system shutting down, all sorts, I mean, deepening illness to a point where at some point you're actually given last rites and essentially say goodbye to your family. Yeah. A priest came in and this was 11 weeks into this. So I was really, really sick at that stage. So I don't have many memories, but I do remember seeing the shadow of a priest. It was really dark in my room and, and kind of understanding what that meant. I mean, my brain was, so my liver and my kidneys were completely shut down. So I, I had some of them in my blood was basically filled

with all the things that they're supposed to clear out. So I was some of them and my blood was basically filled with all the things that they're supposed to clear out. So I was just so confused, but I do remember thinking, I think I know what this means. And this is, this isn't good around the time. I remember saying goodbye to my family and being very, very sad and very scared. It's almost like the fact that my brain wasn't working a hundred percent, maybe is a good thing. Maybe it's good that when you're in a position like that, that you aren't thinking through really complex stuff, but it was, it was a really, really sad time. And meanwhile, with all this going on, the, your, the team of healthcare professionals around you are still trying to figure out what is going on. I mean, there's no clear sort of like

everything's shutting down and they're running every test they can. But it takes almost that same amount of time, I guess, almost three months for them to actually start to figure out what's happening. Yeah. Right around the time that my last rights were read to me is right when the diagnosis was finally made of idiopathic multicentric Castleman disease, which is this really rare immune system disorder where basically your immune system attacks your vital organs and shuts them down. And it's relentless until, until it kills you. The only way to stop it at the time was with chemotherapy. And I guess, unfortunately it didn't work right away. And so I continued to, to get, to get worse, but then actually it finally did kick in kind of in the final hour. I do say that it took 11 weeks for the diagnosis

and if it had taken 11 weeks in one day, I most likely wouldn't have survived. And the first word in the diagnosis of the four words is idiopathic. Explain what that actually means. Idiopathic means that the cause is unknown. And so in medicine, there's kind of this running joke where it's like, you don't want to have a disease that has idiopathic in it, because if you don't know the cause, then that likely means there's been very little research, which likely means there've been very few treatments. And then that was exactly the case for Castleman's. Yeah. Which has got to be so frustrating because you're in there, you've got a team, your dad is like, this is what he does, you know? And, and there's literally, because they can't even figure out what causes this in people. And, you know, it's, it's, as you mentioned,

the majority of people don't survive this, whether it's immediately over a period of a few years, you get a diagnosis, but on the one hand, it's like, okay, of a few years, you get a diagnosis. But on the one hand, it's like, okay, we know what this is. But then on the other hand, it's like, but we have no idea why it happens. And we kind of know one thing that sometimes might work. But beyond that, it's like just a black hole. You're exactly right. I thought that the journey would kind of be over once we figure out what

this is. You know, this thing's been trying to kill me for almost three months, but okay, if we can figure out what it is, then this was a terrible three-month period, but you know, okay. And then finding out the diagnosis, it almost was like, it almost felt like, oh my gosh, it was better when we didn't know what this was. You know, now that we know what it is, there's still very little, there's very few things that we can actually do about it. Yeah. I mean, you described the, I guess the frontline approach and maybe until you start working on this, the only approach was let's try chemo. When most people hear chemo, what they immediately think about is cancer. So, but you're not describing a condition where cancer or any of the more medical words for cancer are part of it.

I'm curious, what's the relationship there and why was chemo sort of like the go-to option? So idiopathic multicenter Caslum disease, because we don't know what causes it, it actually may be caused by a cancer or a proliferation of cancer-like cells. So it may be that we figure out that, okay, this actually should be called a cancer. And if so, it would be a lymphoma. But for right now, we don't know why the immune system gets out of control. And so at the end of the day, the problem is, is that your immune system is just going berserk and it's attacking all the things that it shouldn't be attacking. And chemotherapy, one of the things that it's really, really good at is killing immune cells. It's why when you have cancer and you get chemotherapy, you're at risk of getting all kinds of stuff because it just wipes out your immune system. And so in this case, that's what

we want. And so I get really intense and very high levels of chemotherapy with the intention of just wiping out the whole immune system. Because if you don't know what to target, it's kind of like you could either use a sniper rifle and hit the target, or you can drop a nuclear bomb and just wipe out everything. And that's what chemo is. Yeah. So that approach for Castleman was really, let's just see if we can effectively wipe out the existing system and see if it resets itself in a calmer way where it's not attacking itself anymore. Exactly. And even if it's not so much a reset for the future, it's almost just like a bomb for the short term. Like at least if we can just wipe it out right now, I don't know what's going to happen in three months time or a month's

time, but let's just see if we can save his life right now by just destroying the immune system. What you described also sounds a lot like what a lot of people are describing as some of the potential worst case scenarios for the pandemic that we're in right now, which is the term that's been thrown out there is cytokine storm, where essentially the immune system goes bonkers for some reason, it massively over responds. And it's, it's that secondary effect that causes such huge trauma. And I kind of want to circle back to that a bit later on conversation, but is that in fact, would it be a cytokine storm that was really at the heart of what was happening? Heart of calcium disease is a cytokine storm, exactly. And so I know that we'll get to it later in the conversation, but cytokine storms are the problem

in Castleman disease and became my new focus several years ago. And of course, as you said, cytokine storms, that's the heart of the problem in the most severely ill COVID patients. It's not actually the virus itself that causes many of these individuals to die. It's actually the immune system just getting completely out of control that causes the death. Yeah. So it's so fascinating. It's almost like there's this threshold where up to a certain point, you want the immune system to work really, really well because it fights whatever it is that's going on in your body. But for some reason, in some people, without an understanding of when or why or how, there's like a tipping point where it then kind of just explodes and starts to eat itself. And it becomes that thing that was saving you is now the thing that is taking your life.

Yeah. To use a military analogy, I know earlier we were saying we sometimes want to avoid military analogies in medicine, but one that I like to think about is that a cytokine storm is kind of like you're fighting an enemy in Castleman's, we don't know what it is, but it might be fighting an enemy. And then sometimes you have some friendly fire where you actually start directing your aim at the good guys. But what happens in a cytokine storm would be like, if you had some friendly fire that led to like return friendly fire, which led to more friendly fire. And it's like this cycle where it's like, you know, you end up just causing incredible amount of collateral damage as a result. Yeah. So as you shared this, you do this, you do this intensive round of chemo. It takes a bit of iteration on this, but eventually it does work enough to buy you time.

Yeah, it gave me about a month. Of course, at the time, I didn't know how long it would be. I just want to take that back. It was about a month until I got out of the hospital and then another month that I would be out. So it gave me about two months of remission. And when I was out of the hospital, I knew that I was – well, first off, I was just so thankful that the chemo saved my life, but I knew that I was not in the clear. I now had a chance to actually read up about this awful disease, idiopathic multicenter Castleman disease. I was now familiar with the beast that I was now

fighting. For me, I realized that the most important thing I could do is to find a doctor who's experienced treating this and go to see him or her. And I'm guessing because this is not a very common disease, finding that one person is hard. And then finding one person who's actually seen enough of it that they have a broad enough data set in their head to really understand what is effective and what is the deeper context nature of this. It's got to be brutally hard. It is really hard to find experts like this. Fortunately, one of my medical school classmates found a paper written by this doctor in Little Rock, Arkansas, who turns out to be the world's expert. But this paper, it was so well-written and I read every part of it and reached out to him. And Dr. Van Rie,

he got back to me right away and said, sure, come on out for a visit. So what, in your mind, what is your mission becoming at that point? At that stage, it was really all about survival. For me, it was, and actually in between hospitalizations, I was still trying to help to run AMF, the organization I mentioned earlier. At that stage, AMF had now progressed into being a national nonprofit organization supporting college students around the country. So while I was in the hospital, I was worried about the fact that I was behind on emails for AMF and that things were falling through the cracks. When I would get out, it was, okay, I need to survive and I need to keep pushing forward on AMF.

You know, this is the thing that I care about. But there were really no kind of bigger picture goals at that stage about Castleman disease. I kind of felt like there are doctors like Dr. Van Rie thinking about Castleman disease, I kind of felt like there are doctors like Dr. Van Rie thinking about Castleman disease. There are other people that can kind of worry about Castleman. Let me stay focused on what I was working on. You shared, I guess there were a series of relapses along the way also, which were not, there was no full remission early on. This bought you a short amount of time and then you relapse and have to sort of like bounce back and forth and go into a bad place again, and then come back to

essentially what sounds like just enough. So you were kind of functional enough to keep searching. That's right. And keep searching just for a solution to keep me alive. And it was, it was very much focused on, yeah, just, just, just survival. And part of the reason, I mean, I think all of us obviously want health and a state of health. But for me, it became pretty clear to me early on in my very first hospitalization, one of the things that really was going to drive me to keep fighting in that was that I realized the girl that I'd been dating for a few years before I got sick, and that we had broken up and I just kind of like, you know, let, let our relationship fade away. I realized just how

important she was to me because she was really kind of all I could think about when I was laying in my hospital bed. And so I kept fighting really with the thought in mind that, you know, if I can get through this, I want to, I want to get back together with Caitlin and, um, you know, maybe, maybe, you know, one day there could be a family for us. But it was very much like that was kind of just a dream and a hope, but it really did. It helped me to keep fighting. Yeah. I mean, I'm curious about that too, because here you are with a diagnosis that is in truth grim for the moment you were in thinking about this woman who you loved and

how much she really meant and how you really wanted to be back with her and spend whatever time you had with her. And at the same time, knowing that if you then make that phone call and say, hey, how are you doing? And then you step back into a relationship with her. If she's, if she's open to it, the agreement between you is profoundly different at that moment. You're totally right. It was so scary to have those early conversations. And, um, I, I was not only going into them thinking about this is something that I want, but I needed to, you know, be sure that it was something that she wanted. And even if she did want it, was it also the right thing for everyone involved? Thankfully, I remember having the first conversation with her and my head was bald from the chemo and I had this huge belly that looked like I was about eight months pregnant. I was still so sick. I mean, I could barely open my eyes. And I remember, you know,

telling her she'd actually flown down to see me. This was the third time she had, she had tried to see me. I had pushed her away the first couple of times, but she she's there with me. Um, third time she's tried. And I remember her saying, you know, are you sure that this is what you want? And she looked at me with like, such like a surprise look like, of course, I'm sure this is this is what I want. And and that was kind of the confidence that I needed to hear from her that she really, really wanted this and that that she was even shocked that I would even question, you know, how much that, you know, she wanted us to get back together. And thankfully, that that's really how she felt. Yeah. What made you push her away the first two times?

So the first time I was, it was when I was at my sickest, it was right around the time. Well, that was actually a few weeks before I had my last rights read to me, but maybe at the lowest point for me, certainly the lowest point emotionally for me, I could barely think straight. My, like, I couldn't really put words together and I could kind of agree or disagree, but I couldn't really think very complexly. And so when I heard that she wanted to come visit me, I think I was, I don't know. I didn't want her to see how sick I was. I didn't want this to be her final memory. And I also just knew that I couldn't say any of the things that I actually wanted to say. And so my sisters told her that, that she couldn't

come in the room, which in hindsight, um, I do regret. I think that in hindsight, like, you know, if that was the last chance that I could have had to see Caitlin and the last chance for her to see me, you know, who cares how I looked, who cares? Like that I couldn't have been eloquent with my words. I'm not typically very eloquent anyway. So yeah, I think if I could, could have done it over again, I would have said, yeah, come on in. Yeah. What about the second time? So then the second time it was a similar situation. This time it was about two days after I had my last rights read to me. I think I was just scared to see her and scared for her to see me. And so again, she had actually flown down to see me.

And again, my sisters pushed her away. So the third time was the charm. That's right. That ends up, I mean, you and Caitlin end up getting back together, married. And in the context of all this, starting a family, which I'm curious if you're open to sharing what those conversations were like also, because it's one thing to say, okay, we're two adults who are making this decision consciously knowing we don't know what the future holds. And then when you start to have a conversation saying, well, what about a family beyond the two of us? I'm curious what that

conversation was like for both of you. Yeah. It was a conversation that, that kind of evolved over time. So, um, at this stage in my journey, we've kind of shared about my first three or so times that I almost died. So I guess, as we said earlier, overtime number three, but, um, I would end up getting sick and nearly die two more times. This would have continued until I just didn't survive one of these episodes. Um, but around my fourth time, I decided I would dedicate my life to trying to find a drug that could keep me alive. And so not just, not just fighting for survival,

but actually searching for a drug that could actually save my life. And so it wasn't until years later, years after I discovered this drug that I began testing on myself and that we could feel really confident that it was doing something. Of course, I have no way to guarantee that this drug is going to continue to work. It's been over six and a half years now, but you'll never hear me say it's been almost seven because I don't know about the future, but it has been more than six and a half. As the months went on, as the years progressed, Caitlin and I started thinking

about our future in new ways and in particular about, about being able to have a child together. Hmm. Mayday, mayday. We've been compromised. The pilot's a hitman. I knew you were going to be fun. On January 24th. Tell me how to fly this thing. Mark Wahlberg. You know what the difference between me and you is?

You're going to die. Don't shoot him, we need him. Y'all need a pilot. Flight risk. The Apple Watch Series 10 is here. It has the biggest display ever. It's also the thinnest Apple Watch ever, making it even more comfortable on your wrist,

whether you're running, swimming, or sleeping. And it's the fastest charging Apple Watch, getting you eight hours of charge in just 15 minutes. The Apple Watch Series 10, available for the first time in glossy jet black aluminum. Compared to previous generations, iPhone XS or later required, charge time and actual results will vary. when you said that you um you focused on a drug which has been effective for you for the last six and a half years the and there was a conscious shift which you described as no longer waking up every morning trying to figure out how to survive another day but becoming more proactive in the intentional search for something that will take you out of just pure survival mode and into sustenance mode and some level of, okay, so maybe this is going to be okay. approach is that rather than saying, let me develop something new, your brain says,

is there something that's out there already that might work in an off-label way to treat this? And I'm curious what the reasoning is behind choosing that versus let me see if there's something new that can be developed. I think that it was just knowing the sort of timeframe that I had. So by the time I had my fourth flare, so this is now in about a two year period, I'd almost died four times. And then I would have a fifth one about a year later. And I knew that what I didn't have was time. I knew that there was no way that I would have enough time to identify a new drug and develop and do the safety testing to be able to feel like, you know, I could actually give it to, to myself. I, that just was off the table. I just didn't have the time for that. And so then the question

became, well, is there something that already exists that could be repurposed and used in an off-label way that might be effective? And the answer may have been, no, there is no drug out there. But the only way I would figure that out is if I went on this, you know, chase for a cure and searched for and tried to find these things. And so there was no guarantee. Like it could have been actually there is no drug. You're going to chase, you're going to look, and you're not going to find anything. But there was a chance that maybe there was something there.

I think I, I kind of come back to a couple anecdotes from around that time. The first is that when I relapsed and had number, had my fourth time that I almost died, I was on an experimental drug. I was on a drug that was undergoing clinical trials for my disease. It was basically like the, the, the final hope for me. It was like, this is, this is the drug. It's helping other people. It's going to help you. And so when it didn't work, there was this, there's this really significant shift that occurred in my brain, which went from,

okay, I can no longer just hope that someone somewhere is going to find a drug for me. This is it. This was, this is the drug that someone else somewhere found for me. It didn't work. And the Calvary is not on its way there. There is it. This is the drug that someone else somewhere found for me. It didn't work. And the Calvary is not on its way. There is nothing else. And my doctor, he didn't put it in those exact words, but basically said that, that there are no more drugs in development. There are no more promising leads. There isn't anyone working on anything that looks promising in the near term. And I think that was the frankness that I need. I needed at the time. I needed him to tell me just how bad it was because then that enabled me to make a really important shift. And that was to now go from focusing on AMF because I was continuing to

grow AMF, focusing on becoming a doctor. I was back in medical school to now saying, okay, I'm not, I'm not going to be able to survive much longer and help with AMF or become a doctor unless I tackle this, you know, head on. And so then now my shift became, okay, can I take this disease on? And as you said earlier, it wasn't just survival. It was about finding a drug that maybe could be used. And I realized at the time that there was no, it was very unlikely that I was going to find something on my own. I was going to try, and I was going to certainly roll up my sleeves and start conducting laboratory research. But I also realized that I needed to

create a movement, a network of physicians, researchers, and patients to really tackle Castleman disease holistically. And my book's titled Chasing My Cure, but it really should be Chasing Our Cures because it really wasn't just me chasing my cure. It really, and frankly, I wouldn't be here right now if it wasn't this incredible team that came together. Yeah. I mean, that ends up not only finding this one drug for you that you use in an off-label way and actually, you know you know it works but that launches eventually the Castleman disease collaborative network which is kind of a lab slash collective movement you know using your language where people are coming together and

saying okay so what else is there out there and and can we it's almost like you're combining human analysis with big data in to solve things like casament i i guess there's sort of this whole category of illnesses and diseases you know known as orphan diseases or where it's sort of like there are enough people that have it that it's devastating for a lot of people but it's not quote a big enough for big pharmaceutical or medical to invest billions of dollars in doing the research and trying to find, you know, the cure or the treatment or the drug because the population of people who have it is so small relative to the investment that it would take that those things are largely ignored. So it's fascinating to me that your brain kind of says, okay, so I know that's really

the chances of that happening for this are almost non-existent. So I've got to look at the universe of things that are already out there and see, is there something about something that nobody's thought about? That's right. And I think that they have to kind of work in parallel or basically the idea was, okay, I'm going to chase after a drug that already exists to see if maybe that drug could work for me. But in parallel, let's not just say that the existing system just doesn't work and let's just forget about it. We also came up with a new way to do rare disease

research that acknowledges the shortcomings of the system, but also tries to build kind of a new path forward. And so that's basically to say that in rare disease research and actually all of medical research, usually the way things progress is that a few researchers come up with a research idea and then they apply for funding from some funding body that's, you know, giving out some sort of grants. And that funding body will pick the best applicant and fund that applicant. And then you kind of just wash and repeat. And each proposal is reviewed independently, and it's not part of a bigger picture. And this kind of works for more common diseases where you have like hundreds of labs applying for billions of dollars because it'll kind of eventually just work itself out.

But for a rare disease, think about how unlikely it is that if you've got five researchers in the whole Castleman's field, what is the likelihood that one of those five people is going to have the best idea in the world for what should be done and also happen to have the skill set that makes them the best person in the world to actually do that work. It's kind of infinitely unlikely. And so what that means is that a lot of randomness happens within the rare disease space. And occasionally, the person with the right idea also has the right skill set and they apply at the right time and the stars align. And that's why progress happens occasionally in the rare disease space, but it happens very slowly because it is kind of up to random chance. So for us, we said, okay, well, if we need to first come up with all

the research questions should be asked, why don't we just crowdsource the entire community of patients, physicians, researchers, let's get as long of a list as possible. Some of the ideas are going to be frankly really bad, but some are going to be really good. And so let's get all that we can, let's prioritize them. And once we say, these are the studies we're going to do, let's then figure out who the best people in the world to do the studies are. And so let's kind of reverse engineer it where we say, what should we do? Then who should do it? And then go recruit them and say, we'll give you money, we'll give you samples, we'll give you data if you'll actually do the studies. And so that has been wildly effective for us in Castleman disease.

And you can imagine that as we are making progress at a really rapid rate over the last eight years, I've spent a lot of time thinking, well, there are a lot of other rare diseases out there. Can we actually share this approach with other rare diseases? And so we partnered with the Chan Zuckerberg Initiative almost two years ago to try to basically scale the collaborative network approach, what we do for Castleman's to other rare diseases. And then more recently, also trying to spread this concept of drug repurposing to really map out how do you

take a drug that's got a purpose for one thing and repurpose it to use it in another way to save lives as quickly as possible. As you're expanding that, as we just touched on a little bit earlier in the conversation, you expand out beyond a wide variety of rare diseases too, and you dive into the moment. So as we're having this conversation, we are in the middle of this global pandemic where COVID is out there. A lot of people are trying a lot of different things, but we're still really early in the window here. And you look at this and say, okay, so I think our approach is really different, but maybe that can make a huge difference in the speed at which we can figure things out. Yeah. You may remember Friday, March 13th is the kind of the day when everything shut down at the beginning of this pandemic. I was actually driving down to North Carolina to see my family because we knew this shutdown was happening. We didn't know, would we be able to travel anytime

soon? And so wife, Caitlin, so we got married. Our daughter, Amelia, we have a two-year-old now. The three of us jumped into our car to drive down to North Carolina to see my family. That night, it was late at night. I was listening to the radio and I remember hearing about this pandemic and thinking to myself, oh my gosh, this is awful. And there's a lot of similarity with this cytokine storm was starting to be kind of tossed around at that stage. And I said, I really hope that some researcher somewhere will look at the research that we've

done and we'll see the papers we publish and the approach we've taken. We'll learn about what we've learned about cytokine storms. And then I hope they'll also look at how we do drug repurposing and how they can systematically look for drugs that could work in new ways. Then I kind of like went back to focusing on the road for about 30 more seconds. And I was like, well, wait a minute, maybe we should just do it. You know, here I am hoping that some researchers somewhere will just do what we've been doing for the last eight years. You know, maybe we should do it. And so that Monday I reached out to my team and I don't remember there was a meme around that time. It's, it and he's like on a horse and it says like, we ride at dawn. And so I sent that out to my team. I was like, we're taking this thing on, we ride at dawn. And so, yeah, we shifted a lot of our focus and have been chasing after COVID. you harness, I think, over 30 people to effectively just go full-time hardcore into

reviewing thousands of papers that had been out there around this to identify these drugs, similar to what you identified as a short list for things to try for Castleman. It's like, okay, can we come up with our own short list for COVID? That's right. And so it's about utilizing all of the data available to try to figure out what drugs have already been tried that look promising and need to move forward to clinical trials and also what drugs maybe haven't been tried yet. But based on the research we've done in the past on other cytokine storm disorders and what we're seeing with this one, what are other drugs that we should be trying?

And so it's been this kind of dual effort to look at what's being used and also think about what else should be trying. And so it's been this kind of dual effort to look at what's being used and also think about what else should be used. And amazingly, we've got this huge team of volunteers. Most of them are medical students from Penn, but also around the country that have been going through like thousands and thousands of medical research articles and pulling out data from these papers. Amazingly, we found that over 250 different drugs have already been given to COVID-19 patients. And, you know, in the news, we hear about the same three to four drugs every day, but actually literally over 200 other drugs have been tried. And the problem is, is that many of those drugs are not getting much attention because, you know,

we focused a lot of effort and resources on a few, few drugs. And so what we're trying to do is to try to keep an eye out on all the drugs being tried, get a sense for which ones look promising and which ones do we need to actually focus more attention on so that we, so that we're, we're not just, you know, putting all of our eggs into a couple of baskets. Which is, I mean, so powerful in a moment like this, you know, I think traditionally there's been not just in medicine, but in science, there's been this sort of siloing effect that tends to happen where you have amazing researchers, amazing labs, amazing teams around the world going deep into very narrow problems and focusing

only on this one question and their very particular ideas that they're having to test them, which is necessary because a lot of times it takes a huge amount of time and resources. And yet when they do that, they're also not communicating. And so little discoveries and things that are being tried all over, they exist in their own silos and there's no sharing and no ability. There's no sort of like meta lens that looks down on all of this until somebody does a meta analysis

and and says okay so across the board what are we learning and it sounds like that's sort of what you're doing in the context of trying to find drugs across all these different research labs you know like that have been working and sharing the information in a central place for everybody to say, oh, and just accelerate the whole process. Yeah. We're doing basically a real-time meta-analysis. The meta-analysis you described, typically you do that like three or four years after the first few trials are done and you look back and you say, when you combine it all together, this is what it really looks like. But what we're saying is that we don't have time to wait three to four to five years to look back. We need to do a real-time meta-analysis. So in real-time, we're looking across the whole board. And the only way to do that is with a lot of

people. And so thankfully, we've had a bunch of volunteers on board. And then I've been able to redirect a number of my members in my lab at Penn. I run a center. It's called the Center for Cytokine Storm Treatment and Laboratory. And it's funny just because cytokine storm is something that we talked about a lot within Castleman disease. But of course, up until recently, this is not something that really had been thought about beyond Castleman's. I mean, there are other cytokine storm disorders. As you said, it was kind of this moment where I found myself saying, I really hope someone follows our approach and I really hope that they can redirect their lab. And then just saying,

you know what, if I was still hoping that someone would find a drug for me for Castleman disease, I wouldn't be here right now. And it's only because I turned that hope into action where I said, okay, I'm hoping for this. I need to do something about it, that I'm even alive. And so it's a cytokine storm disorder where I'm benefiting from a repurposed drug. And we identified it through this really systematic approach. What if we just kind of wash and repeat all three of those things? COVID is a cytokine storm disorder where there's a great opportunity for drug repurposing, but we won't find that drug unless we take a really systematic approach. So you're making great strides. And meanwhile, all these people are in this with you, but when you zoom the lens out in your own life and your personal life, you know, like we're, we're sitting here, we're having this conversation.

You are alive with energy. You know, like you're fiercely committed. You're taking that ethos that you know, like you've had since you were a kid and going all in on this thing, you're smiling and radiant. And yet, you yet, this thing that you have, you still look, nobody knows what time we're guaranteed, but you having been through what you've been through, you wake up every morning fiercely aware of your own mortality and of the lack of promise that you'll wake up the morning after. Yeah. We talked at the very beginning of this about overtime and how overtime in sports is this time that you didn't think you'd have. You don't know how long it's going to last. And if you make all the right moves, you win or you move on to another overtime. If you

make mistakes, the game's over. And the reason that I think that analogy is so fitting for the way that I feel right now and how I live my life is that like all of us, I don't know what tomorrow will hold, but, but I have this awful disease that has shown to be relentless in many other people and also in me. And so I, so I can really sense that the clock is ticking down, but it, for me, it's really helped to focus me even more. I mean, I guess I've never had a problem with getting focused on things, but it really does help me to say, what are the most important things that I need to work on and that I need to focus my attention on because I don't know about the future. And I think that there's, to your point,

there's kind of this macro feeling that I've gotten that COVID has kind of reminded all of us that we're actually all in overtime. You know, we don't like to think about how we're all in overtime, but I think that COVID has made us realize that like, oh my gosh, this virus could just hit one of us or someone we love out of nowhere. And that is terrifying, but it can also be really clarifying and it can help you to say, okay, if that's the case, if I, if I'm in overtime, then maybe I'm going to make some, some decisions that are a little different than if I'm feel like I'm in the first quarter and, you know, I've got the rest of my game to play, which is, I think for me, it was really, um, clear when I think about Caitlin and I's relationship where when, when we broke up, I was like, well, we're 25 years old. If it's

meant to be, it's meant to be. Um, and so now I don't say that, you know, if it's like, well, we're 25 years old. If it's meant to be, it's meant to be. And so now I don't say that, you know, if it's something that I think I want or that, that, that should be done, then, then there's no kind of, let's wait to see if it happens. Yeah. I mean, I think clarifying is a really powerful, you know, when you say, okay, so I can, I can get freaked out and demoralized by this, which, which are actually fine. I mean, you're going to move through that no matter what it is anyone's dealing with. But if you can find the tools and the support and the shift and lens to get to that place where it's like, okay, so this is clarifying. How do I want to spend whatever breaths that I have know, on like, okay, so I have this number

of units of energy today and focus and attention and awareness and love. How am I going to spend it? You know, I think that can be a really powerful way to move into your day in your life. I agree. This feels like a good place for us to come full circle as well. So hanging out here in this container of good life project, if I offer up the phrase to live a good life, what comes up? To live a good life. I think that you have to find that thing that you're passionate about.

I think you have to find your mission. And then I think you have to know that you're doing everything you can every day to get close to that, what you're hoping for and that what you're praying for. Thank you. Thank you so much for listening. And thanks also to our fantastic sponsors who help make this show possible. You can check them out in the links we have included in today's show notes. And while you're at it, if you've ever asked yourself, what should I do with my life? We have created a really cool online assessment that will help you discover the source code for the work that you're here to do. You can find it at sparkotype.com. That's S-P-A-R-K-E-T-Y-P-E.com. Or just click the link in the show notes. And of course,

if you haven't already done so be sure to click on the subscribe button in your listening app. So you never miss an episode and then share, share the love. If there's something that you've heard in this episode that you would love to turn into a conversation, share it with people and have that conversation because when ideas become conversations that lead to action, that's when real change takes hold see you next time we've been compromised. The pilot's a hitman. I knew you were going to be fun. On January 24th. Tell me how to fly this thing.

Mark Wahlberg. You know what the difference between me and you is? You're going to die. Don't shoot him, we need him. Y'all need a pilot? Flight risk. The Apple Watch Series 10 is here. It has the biggest display ever.

It's also the thinnest Apple Watch ever, making it even more comfortable on your wrist, whether you're running, swimming, or sleeping. And it's the fastest charging Apple Watch, getting you eight hours of charge in just 15 minutes. The Apple Watch Series 10, available for the first time in glossy jet black aluminum. Compared to previous generations, iPhone XS or later required, charge time and actual results will vary.