Case #17: Every Cure Pt.1 (Dr. David Fajgenbaum) 40:48

I'll never forget my doctor walking into the room and saying, "David, your liver, your kidneys, your bone marrow, your heart, and your lungs are shutting down." I was just treating patients down the hall. I was just spiraling, not knowing what was actually happening, just being so confused because I had just talked to him like two days ago.

A priest came in and read him his last rites. And then a few of his friends came in and ultimately hugged him goodbye. I had to take some action and it had to be like a crazy step and that is to start testing one of these drugs that I was studying in the lab on myself. How terrifying would it be to fight an unknown enemy? One you didn't recognize and didn't see coming.

What if that enemy was coming from within? A disease that even doctors couldn't identify. Nearly half of all Americans suffer from some chronic illness and many struggle for an accurate diagnosis. These are their stories. I'm Lauren Bright Pacheco, and this is Symptomatic.

David Fagenbaum grew up in Raleigh, North Carolina. And I've got two older sisters, seven and five years older than me, and two amazing parents. They immigrated to the United States from Trinidad and Tobago in the Caribbean. So they were sort of making this new life the American dream in the States. And childhood exposure to a very American sport ignited one of David's biggest dreams.

And your dad is an orthopedic surgeon and worked for a period of time with North Carolina State Wolfpack team. That's right. Which is where at the age of seven, you had this burning desire to play which position in what division? I wanted to play quarterback and I want to play Division One college football. That was like my first dream. And that is all I could think about for about a decade.

Your dad working so much, your mom kind of became almost your football trainer. She did. She was my football trainer. She was my mom, obviously. She was also one of my closest friends. And there was a hill behind our house. And she would stand at the top of this hill and throw the football into the hill. And then she could throw it back down. She just wanted to help me in any way that she could, even if it was just rolling footballs down a hill. Yeah.

At an early age, David showed his ability for extreme dedication and focus, becoming a star high school quarterback. But that's just one of the reasons he caught the attention of Caitlin, his future wife. He was the president of student council, and we had morning meeting every morning. He got up there with his best friend, and nothing to do with school at all. They started rapping Eminem songs.

The whole student body was just like, what is happening? I even said that. I'm like, I was very confused by him, but I was also like, wow, he's really attractive.

Attractive and driven. You ended up playing quarterback for Georgetown. That's right. Listeners may not know Georgetown has a football team, but we do. And we are Division I. Yes, for me, it was the ultimate dream that I, yeah, I'd been thinking about for over 10 years. It's bittersweet too, because I know that your mom was diagnosed your freshman year.

That's right. Actually, just two weeks after she dropped me off to Georgetown and I got this phone call from my dad. When he called, I started telling him all about this football practice we had and all these touchdowns and all this stuff. And he was just silent. And then he told me, he said, David, your mom has brain cancer. And...

Gosh, I was like, what? You know, that can't be. Mom, like she's the most amazing person to everyone. Like it's not fair. It's not right. And so, yeah, that sort of changed everything in my life. It just, everything changed. Your family did exactly what in an ideal world any family would be able to do. You were really there and you were so present for her there.

Did it shape your desire to become a doctor? It completely shaped my desire to become a doctor. I mean, the moment that I heard my mom had cancer and of course the moment that I saw her dealing with her cancer, I just said,

This is what I have to spend the rest of my life doing. And by this, it's taking care of people with horrible diseases and it's searching for treatments so that people don't suffer like I witnessed my mom suffering. You know, I can't imagine how painful because you were sick

19 when she passed I could go on all day about her she was such a force she battled brain cancer for 15 months just so valiantly and every everything about it you know I share about the humor that she brought into it you know the the very first brain surgery she had you know we were devastated going that surgery you know what's mom gonna be like coming out of this is she gonna be the same person so we all go back to see her and I remember that they pulled this curtain back

And she had this wrap around her head and then she had this tube coming out of the incision and it had sort of a bulb at the end. It was actually collecting the fluid. She looked at us and she pointed to her head and she said, Chiquita Banana Lady. And we just like burst into laughter. It was what we needed. But my mom's passing, it impaled me and then it set me on fire.

David's focus now set on medicine. He graduated from Georgetown and was attending the University of Pennsylvania for his medical degree. And although no longer leading a football team, his drive for physical fitness continued.

I continued to exercise a lot and that was just an outlet that I loved. And so as a result, I became like really fit. And you had a nickname because of it? Yes, I was called the beast because I was in really good shape. I won a bench pressing contest. In fact, I set the Virginia state record for bench pressing, which if you were to look at me now, you'd be like, are you sure about that? Because I definitely am not going to set any bench pressing records these days.

He was really one of the healthiest guys I'd ever met. We'd go to the cafeteria and he'd get a piece of chicken and pick the fat off the chicken even because he was so particular about what was going into his body. That's Grant Mitchell, David's longtime friend, colleague, and college roommate. So in medical school, you do rotations in different hospitals. And we got posted out for our OB-GYN rotation program.

Bethlehem, Pennsylvania outside of Philadelphia and we were staying in some dorms there and there was no gym and so that was not going to stop David from working out and so we found a tree outside of the dorm there that had a nice branch. The tree branch it just looked too perfect it was horizontal it was perfect. So we could hang from and do pull-ups from.

And so, yeah, every time we walked past this tree, we had to do pull-ups before we went to treat patients. So, yeah, we had to get pull-ups in every morning. And in a weird way, that tree branch ended up being an indicator that you were getting sick. You're right, because as the weeks went on, I stopped wanting to do the pull-ups. I didn't have the energy to do the pull-ups. I actually hadn't thought about that until you mentioned that now. Yeah, I couldn't do them. I was just dragging.

At this point in his third year of medical school, David's mental focus was on his residency and passing exams. But suddenly, and quite out of character, David was having trouble keeping up physically.

And then the fatigue became this fatigue that I'd never experienced before. It was like this insatiable fatigue. Basically, no matter how much I slept, I just was exhausted. I couldn't get out of bed. I noticed lumps and bumps in my neck and fluid around my ankles. And I didn't want to go there mentally, but I knew that if a patient walked into my office, I was a third-year med student, if a patient walked into my room and I'm the doctor looking at them,

I would have been very concerned and I would have specifically said, I'm very worried that you have an aggressive lymphoma. And such an aggressive lymphoma that, you know, you might have a few weeks to live. It was moving so rapidly. But I was like trying to just block that out of my brain. While at the same time, I knew something really bad was happening. I even told Grant. One day he walked into the living room of our apartment and he said,

Something is just wrong. I think I'm going to die. And David, what? You're not going to die. Like, what's gotten into you? How did you process that? Maybe just the stress of med school getting to him? Yeah, I just thought that, you know, he was focused on health.

And I didn't think much of it. Just told him to, you know, relax. It's okay. A lot of medical students go through this when they are in medical school and they're learning thousands of different ailments that can occur in the human body. And you start sort of thinking about what's going on inside of you and even get a little sense of paranoia and over-diagnosis. It's kind of a running joke within medical school. Everyone's sort of diagnosing themselves and all the different things that could be happening. And so...

I just thought it was that. In addition to the exhaustion and swelling, David was noticing rashes and redness popping up all over his body. It was clear that whatever was going on, it needed immediate attention. But David, being hyper-focused, was determined to make it through his OBGYN exam before turning his attention towards himself. I remember while I'm taking the exam, just like,

full body sweating. I'm like shivering. I like can't keep my eyes open, but, um, I went from taking the exam and I went down the hall and I just, I went straight to the ER and, um, they took me back almost immediately. Um, they just, I just was, I was so ill and they did blood work and I'll never forget my doctor walking into the room and saying, David, your liver is

your kidneys, your bone marrow, your heart and your lungs are shutting down. We have to hospitalize you right away. And I'm like sitting there, I'm like, but I was just treating patients down the hall like a couple of days ago. We weren't taking a break at this point.

And I remember being on Facebook and seeing a lot of people writing on his page. I'm praying for you. I'm thinking about you. So I was wondering what was going on. I hoped that it was maybe some virus because, you know, viruses come and go. You might get really sick, but it'll be gone at some point. We hoped it was a virus. Didn't turn out to be a virus. We then thought maybe it's not an immune disease.

but none of the autoimmune disease tests were coming back. And then that sort of left us with like, what's the other thing that could be causing this sort of the big, bad, scary thing? And that was lymphoma. But the tests we were doing weren't giving us an answer. And that was actually one of the last really vivid memories I have from what then turned into hospitalization, where I just became more and more confused and less and less aware of what was going on.

David and his family found themselves in an all too familiar and painful situation, gathered around a hospital bed, only this time, David as the patient. Doctors performed a bone marrow biopsy, PET scans, MRIs, a liver biopsy, among other tests, none of which provided clarity around the cause of these symptoms.

David was given high-dose corticosteroids, a common practice in the ICU when there is no clear path to treatment. And as the days and weeks progressed, David's illness was impossible to ignore.

The physical morph was pretty incredible. And sometimes you have to see the pictures to really understand, but I'll try to describe what happened to me. So because my liver and my kidneys stopped working, what happens is you start getting fluid all over your body. So I gained...

what we estimate to be close to 100 pounds. Now imagine at the same time you're not eating because you're so sick and you can't keep down any food and your immune system is literally ravaging all your vital organs. So as a result, you lose all of the muscle mass and any lean mass that you have. So you're left with a body that has 100 pounds of fluid, has lost 50 to 60 pounds of muscle. You're just bone-

and fluid everywhere. You're just like a swollen skeleton, basically. That's what I looked like. The pictures that we have of him in the hospital are not even close to how bad it was. And the reason for that was because David didn't want any pictures. That's not how he wanted to be remembered. David thought he was dying.

David was airlifted back to his hometown, to the hospital his father worked out of. He spent seven more weeks there until he improved just enough to be discharged, only to find himself right back where he was one month later. After months of testing and hospitalization, David had a lymph node biopsy, which returned some surprising results.

I wasn't talking. I wasn't doing anything. I was just laying there. So imagine there's 11 weeks of like my dad and my two sisters just being there for me through everything, helping me to breathe. Right. I didn't want to breathe, like just fighting for my life. And the first moment where like the three of them are not in the room,

It's like the moment when this thirst comes in. So she's like, you know, I got the news. I just figured, you know, I'd deliver it to you. And she's like, good news. It's not lymphoma. And then she looks at the piece of paper because she like doesn't know what the word is. Like she's never seen it. She's like, you have something called Castleman's. I'm like, well, is that good? Is that bad? She's like, well, it's not lymphoma. Like,

It's great, I guess. And so here I am by myself and I'm like, great, it's like Castleman's. I'm a med student, but I don't remember learning about it. I think maybe I heard it once in my life. So good news, we know what it is. So what do you do when you first hear about something and you want to learn more? You Google it. Then you see the Wikipedia page. The way that it was described was that it was just uniformly fatal and everyone died within a couple years of diagnosis. And I was just devastated to read about this disease.

Castleman disease is a rare condition that causes the immune system to go into hyperdrive, attacking organs and bodily pathways. In the United States, there are only about 5,000 new cases annually, with each prognosis varying based on the subtype.

David was unfortunately diagnosed with one of the most aggressive variations. Desperate to quickly find a treatment that worked, David was transferred to the hematology and oncology ward at Duke in Durham, North Carolina. When I was at Duke for my second hospitalization, I was so sick that my doctors encouraged my family to say goodbye to me. It was shocking. You know, we were still very young. It was the time in our lives where

We were energized to, you know, we were healthy, we were young, we were ready to go conquer the world and to see the person among us that seems the strongest transformed so abruptly was startling. It was hard to process. I didn't think it was even real, like surely he'll just be fine soon. And that changed dramatically for us when they ultimately told them that they didn't know what else they could do.

I'll never forget the moment when a priest came in to read me my last rites. That was in November of 2010. I was 25 years old. Then a few of his friends came in and ultimately hugged him goodbye. And I think everyone tried to keep a positive outlook, you know, you're going to be okay. And I remember I couldn't really keep it together. David and I talk about that a lot. He says that

He almost knew how bad it was when I came in the room and he saw my face because I couldn't hide how horrifying it was to see him in that state. Yeah. And when you're when you're administering your last razzle, when you say goodbye to your family, you don't do it like thinking I'm going to get another shot at this. It's like this is this is it.

David, who had been the physical ideal of athleticism and health just months before, was now unrecognizable. Seemingly, at the end of his fight with Castleman, Caitlin traveled to visit him in the hospital. Despite no longer dating at the time, there was still a connection between them.

If this was going to be the last time I wanted to talk to him just to hold his hand to see how he was doing. I can barely form sentences. I don't know what the heck's going on. I'm confused. And this is going to be the last time Caitlin's going to see me. I'm not going to tell her the things that I want to tell her. So she came to visit me multiple times. And each time I somehow communicated to my sisters that I didn't want her to come in the room.

I thought that maybe he didn't know that I was trying to see him. Because, you know, I had his phone number and I would reach out and I just, you know, wouldn't hear back from him. So then I would reach out to his sisters and just see. And I did think that like they were, maybe they were mad at me because I broke up with him. And, you know, I thought maybe there was like something like petty, but like there wasn't. They were just protecting their brother. I regret that because I,

Who cares if I didn't look like my former self and who cares if I didn't say the right words?

David had now come to the brink of death twice in a span of three months. Turned out that there were no FDA-approved drugs, but there were a couple drugs that had been tried, particularly chemotherapies. And one of them worked for a little bit of time, and then I started to relapse. While the chemo suppressed David's immune system, stopping Castleman from attacking his body, it also took a heavy toll on David's ability to fight.

But there was one last hope waiting for him in Arkansas. I learned that the world's expert was in Little Rock, Arkansas. So I traveled out to the Mecca of Castleman disease. I'd been given the plan. I'm going to be on an experimental drug. It was undergoing a clinical trial. And it was working for a bunch of people. And I was like, oh my gosh. We'd been praying for this for my mom, and we never got it.

But now here we were for me, like maybe we got this. This is like the drug we've been waiting for. And, you know, just before I was supposed to fly back to North Carolina, which is where my family lives to recover, the test results came back from my Little Rock visit that my labs were all horrible and my organs were all shutting down again. So we actually were, we were actually in the airport in Little Rock getting ready to leave. And then we just went back to the hospital. Mr. David Mayport to Gate Beach.

That was the beginning of about a seven week long hospitalization where I sort of went off the cliff again. My gosh, you had to go through this cycle so many times. How did you find the strength in those moments to just keep going? Yeah, I think for me, there were a few things that helped me to keep fighting that.

I mean, for one, I felt like I had this unfinished business to do. Like I promised my mom I was going to find drugs for people suffering from diseases and

And I'm a third year med student. I'm sort of like finally somewhat trained to start helping people. And then now I'm going to go out and never be able to do the thing that I promised my mom. Another one was just the amazing support I got from my family. My sisters never left my side. My dad never left my side. I just wanted to be with them longer. Like I just wanted more time with them.

Having traveled nearly a thousand miles to the world's foremost Castleman expert, David recognized the continued cycle of chemotherapy would inevitably catch up to him. That's when things changed. He was no longer content to merely be the patient.

My doctor explains to me that, like, we've tried everything. There's nothing else that we can do. And I just hit rock bottom. I thought, I'm going to get to work and try to find a treatment for this disease to save my life. We'll be right back with Symptomatic, a medical mystery podcast. What does cascali mean for Lisa, who has HR-positive HER2-negative metastatic breast cancer?

I started taking Cascali in 2020, and I intend to keep taking it as long as it keeps working for me. I have so much going on in my life. I'm a legal assistant, a minister, a grandmother. I love doing all these things, and it's very important that I'm able to keep going.

Individual results may vary. Hiscali Ribocyclib 200mg tablets is a proven prescription medicine used to treat adults with hormone receptor positive human epidermal growth factor receptor 2 negative breast cancer that has spread to other parts of the body, metastatic, in combination with an aromatase inhibitor as the first endocrine-based therapy.

Thank you.

These are not all the possible side effects.

Kaskali is available by prescription only. Talk with your doctor and visit Kaskali.com for more information for patients and providers, including full important safety information and patient prescribing information. That's K-I-S-Q-A-L-I dot com. Now back to Symptomatic, a medical mystery podcast.

David Fagenbaum, once a college quarterback and powerlifting champion, was coming out of his third hospitalization from Castleman disease. After the only known drug to help treat Castleman failed, David went through seven weeks of multi-agent chemotherapy, daily blood transfusions, and dialysis. David and his family returned home to North Carolina, fearful of when the next relapse would begin, but this time he had a little extra support.

So at this stage, this is when I had lost my hair from chemotherapy. I still had about 50 pounds of fluid all over my body. My belly, you know, was indistinguishable from someone who would be eight months pregnant. And Caitlin, she was my door.

I didn't know how bad it was when I was there because no one gave me the details when I was reaching out to his sisters. No one said, this is it, he's being read his last rights. I didn't find these things out until later, which almost helped. It kind of helped me cope.

And she said to me, I want us to get back together. I'd been hoping for that for so long, but here I am with like this horrible, deadly disease. I don't think any human could have more baggage than I had at that moment. Just being like, are you sure? Like, you know, I got a lot going on, you know, got this horrible, deadly disease. Like, are you sure? And she looked at me like she was offended that I was asking her that like,

Of course. Like, are you kidding me? Like, of course I want us to get back together. And it was like, that's exactly what I needed in that moment. I knew it was him. It was still him in there. So it just didn't matter, the physical appearance. Is there a moment that you look back, were you worried because it was just too much for David? I mean, it was definitely when his doctor said that they've tried everything and there was nothing else that they could do. That's when Dave was like, I got to take this into my hands. What can I do for myself?

I'm going to hope for a drug to save my life. Like, shouldn't I be acting or like doing something to get there? So for me, it was, OK, I'm going to get involved in research. I'm going to build an organization called the Castle News Collaborative Network. I'm going to start conducting laboratory research myself and I'm going to get to work. In day fashion, that's how he copes. He's going to fix it. So we were his doers and he was the fixer while he's in the hospital bed having ice packs under his arms because he has fevers.

And for someone who is as focused as Dave, there's nothing that will focus you more in this life than staring down that clock. You know, we call it a dream team, but, you know, David was the engine. David was the force behind it all. He was quarterbacking it. Absolutely. He slotted right in in that role.

David spent the next six months at home regaining his strength, and although the experimental drug, siltuximab, that David had taken failed to help him recover, he was now using it in hopes that it would work as a preventative measure. He returned to medical school and got to work on finding a cure.

for Castleman. We weren't just going to hope that Santa's elves were going to like magically come up with some brilliant idea and do the research. We simply said, what should we do? We asked everyone that and then we simply found the best people in the world to do the things that were prioritized to us. So that was one major shift. And the other one

was again, a very simple realization. And that was, it costs between one and $2 billion to create a new drug from scratch. And that can take 10 to 15 years for one drug. So I didn't have a billion dollars. I didn't have 10 to 15 years. So I was like, okay, well, how else could I potentially be treated? Well,

All those chemotherapies that I got that saved my life, they weren't made for Castleman disease. What if there's some other drug out there that wasn't made for Castleman disease? I mean, the chemo doesn't work long term, but it's saved my life a few times. I appreciate the chemo. Is there something else? So that became my mission. Can I figure out what's going wrong in my body? And then can I figure out, is there a drug that's already FDA approved for some other disease that might actually be able to be useful for my disease that I thought could save my life?

David recruited experts from all over the world to join the Castleman Disease Collaborative Network, or CDCN, and diligently continued his lab research to understand what was happening in his body. Despite all the effort toward finding a cure, David experienced a fourth relapse in April of 2012, after his longest stretch of stability.

the now standard playbook for a flare-up, David gets a massive round of chemo, all while trying to maintain some sort of normalcy in his life.

So at this stage, Caitlin and I are engaged. We're engaged to get married on May 24th, 2014. And I know that I'm not going to make it there at the current rate. I actually, my last relapse was while I was getting weekly chemotherapy. For the first time ever, we were like, let's try preventative chemo, which is not a thing, but let's try it like in advance and see if that'll stop it. And it still roared its head. It still exploded. Still put me in the ICU for a month. So that didn't work.

it's impossible to work backwards from there to figure out what went wrong that led to it. And it occurred to us that instead of taking samples from his blood while he was in the throes of these flares, we should take those samples before and after. And we should do it every few weeks so that we can study maybe the progenitor markers of what is initiating this cascade.

And if we can find out what's going on early, before it goes full-blown, maybe we can stop the cascade from ever occurring. I've said goodbye to my family five times and this thing's gonna keep coming back. So if I wanted to make it to May 24, 2014, I had to take some action and it had to be a pretty, in hindsight, like sort of crazy step and that is to start testing one of these drugs that I was studying in the lab on myself.

And I was like, what are the side effects? You know, he was like, it could either work or, you know, it doesn't work. So I just, I, I was very confused. I was like, are you sure? Like yourself, you're going to try this on yourself. And so I was very unsure about it. I didn't have a lot of faith that this was going to work.

I felt like we were just going to be in the same place 15 months later. Was that your biggest fear? Yeah, that it was just going to be a cycle.

As David battles Castleman disease for the fifth time, he starts to put his research to the test, trying drugs that will target the immune system. First on the list, David started taking cyclosporine. While he showed no signs of improvement, his condition didn't worsen, which seemed positive. He then moved on to the second drug, IVIG, helped David feel better almost immediately.

Blood tests were finally heading in the right direction, only for Castleman disease to knock David down once again a few weeks later. It was back to the old playbook and David had to undergo another massive round of chemo.

there was some real heartbreak, right? It was like, "Caitlin, I've been doing this work in the lab. I've been experimenting on my own blood samples. I've been experimenting on the lymph node tissue." That's like the moment where you want to try these drugs to see like, while you're getting worse, does it stabilize things? And it didn't. And that was heartbreaking. And the tricky thing about this disease is that you don't necessarily know if it's working or not until you don't have a flare. So you have to wait

And these flares would happen about every year. So let's say a flare occurs and then you realize the drug that you're on didn't work. And now you try a new drug after the flare subsides. And it doesn't just subside. You have to

obliterate your immune system with seven-agent chemo to stop it. And then once you survive that onslaught of toxic drugs, you say, okay, now we'll try a new drug. And I don't know how I survived that fifth one. They gave me like humanly impossible doses. I was like taking like large animal doses of chemo, but I knew that it wasn't going to work long term.

I can't imagine watching someone you love suffer the way he obviously suffered with all of those relapses. But particularly in the case of the chemo, the treatment seemed even worse than the disease. How grueling was it to watch him go through a cycle of relapses? It was just like such a letdown.

when you would think like he just did the chemo and now he's been better for 16 to 18 months and then all of a sudden, you know, it happens again. It was just so frustrating. Like how many times can a body get this much chemotherapy? After recovering from his fifth barrage of chemo, David looks at the last option on the table from his research.

Getting to know Castleman disease through their experimentation, Grant and David learned that his subtype causes the bodily communication line called mTOR to go into overdrive. mTOR tells the immune system to mobilize and activates T cells to go to war, attacking foreign cells or, in David's case, his own.

I thought that, hey, why don't use an mTOR inhibitor? I mean, again, it was very simple. There was too much. This communication line looked like it was turned into overdrive. Here's a drug that turns it off. Let's try it. We were at a point where there was a no-regret move to try something else. And that was something called serolimus. It is isolated from a fungus found in the soil of Easter Island.

It hits the mTOR pathway and reduces T cell activation. Maybe it could prevent the cascade that ultimately led to cytokine storm that would attack his body. This was the third and frankly, probably the last possible attempt. There weren't many more drugs on our list of possibilities and there wasn't much more time. So it probably was the last ditch effort after like many last ditch efforts.

Now taking the only medication left on the table, David and Caitlin did have something worth looking forward to, their wedding. But what was weighing on David's mind? The issue of the hair on his head, or lack thereof. I remember we were in the hotel room getting ready for the wedding, and he had just started to grow his hair back. He was so protective of every hair on his head. Ha ha.

You know, it didn't look good. It was just kind of like thinly there and a little bit on his neck. And I was like, David, let me just shave this.

these hairs on the back of your neck so you can look nice and trim for your wedding day. And I told him absolutely not because my hair had just come in. Like I got like my hair started to grow like two weeks before my wedding day. So it kind of looked like I just had this like very short buzz cut or something. But but yeah, I had I had your neck hair had grown back and Grant's like, let me clean you up. It's your wedding day. I'm like, no, like every every follicle matters. Like you're not there. There is every hair that is on my head. It is staying there.

I love that. But it was just awesome. Because like I said, after I hugged him goodbye that day, I didn't think I'd ever see him again. Having already been through Until Death Do Us Part, what did it mean to exchange vows? What did your wedding mean to you on a deeper level?

It was so powerful. It was like those words were so real where I feel like people just say those as their vows. But really, we meant them so much to each other. We had already been through it.

Yeah, it just meant so much to us. As David and Caitlin now look towards the future, they couldn't help but be troubled by lingering thoughts of fear. Will Castleman disease return? And if so, what other possible options are left on the table? We didn't know right away if it was working or not. We kind of just waited each month and were like, is it coming? Is it coming? Is it coming?

We had to wait a full year to see if he was going to undergo another flare. So eight months go by, we're on the edge of our seat. Twelve months go by, we're watching and waiting. Fourteen months, sixteen, eighteen. Nineteen months, twenty months, twenty-one months. Two years go by. And it wasn't coming back. We were kind of like, "Oh my gosh, something's working."

months and months after longer than he'd ever been in remission or not in flare. My God, my God, he's okay. We think we found a cure. The serolimus, that's the one that worked. And that's why I'm here and I'm on this podcast, right? If it didn't work,

I'm not here. 10 years ago is when I pass. And I'm very much a memory for Caitlin and my family. But it's because we connected on that last one that I'm still here and that now I can continue to pursue this for other people. How did this shape your perspective once it went into action?

remission, if I may use that word. Yeah, absolutely. I do like to use that word. And ever since this remission started, I just have this feeling of overtime. It's like, okay, I don't know when the disease could come back. And of course, as more and more days go by, the more confident I feel that maybe we've really gotten this disease under full control. But it's just given me this urgency where it's like, I got to do as many things as I can do. When we finally got off the hamster wheel, yeah, it was just like...

I can just like feel it. Even saying it to you right now, I can feel like weight just coming off my chest. Like in that moment, we were so relieved. David Fagenbaum was pushed to the brink of death five times before finally finding a medicine that sent his Castleman disease into remission.

David and Caitlin didn't just make it to their first wedding anniversary. They're now celebrating their 10th and counting, along with the two adorable children they welcomed along the way. We're just so much more grateful for the small things. Amelia's having her preschool graduation, and now Dave gets to be at, like, her preschool graduation. So, like, huge milestone for our family. We're just so grateful for that. Just having him be able to come to her dance recital...

We're just so grateful that we are in this overtime for our family. And I truly believe our overtime is going to go on for a long time. Just as living through his mother's cancer treatment pushed him to study medicine, living through Castleman disease lit a new fire within David. You know, after finding out that serolimus could save my life, all I've been able to think about for these last 10 years is...

how many more drugs are sitting out there that could be life-saving for other people? I mean, I was walking back and forth past this CVS that ended up being the place where I got my serolimus from for years. It was always there. And for years, I'm sick with this horrible disease. I'm in the ICU, and then I'm home, and then I'm back in the ICU. And all along, that pill bottle was serolimus, and it had been there because it's approved for kidney transplant rejection, and it's utilized by people all over the world, but it's not used for Castleman's. And it's like,

Oh my gosh. How many more of those drugs at your CVS could be life-saving for you or someone you love? I mean, like, what is the untapped potential within our medical system? And Grant, you decided to join him in this pursuit. Yeah. And we called all the researchers in the world that might know anything about this disease. There were only 20 of them or so. And we invited them all to a conference. And I'll never forget sitting there at the head of the table with David and

I said, this is David and I'm Grant, you know, and we're here to cure Castleman disease. And just seeing these researchers who had been at this for years around the table kind of chuckle and say, okay, kids, you know, good luck. You know, we'll try and be helpful. It was just one of those moments where we were young and naive enough to have the audacity to think that we could do anything. ♪

Unlocking the off-label potential of approved medicines will quickly be put to the test in part two of David's story. Join us next week as David crosses paths with another patient battling Castleman disease, Gary Gravina, who is clinging to life during a terrifying flare-up. My wife started to notice that my stomach was getting larger and I wasn't really eating because I felt so ill.

And so for me to be putting on weight was weird. I'm thinking, well, this is going to be something really simple and they're going to take care of it. And then when they started talking about admitting me, I'm like, come on, this is not something like that. I don't need to be in the hospital. This is ridiculous. By the end of that week, I was in a medically induced coma. Having beaten back his own Castleman disease, David is determined to help Gary fight his. I'm

I'm told, hey, there's a patient with your subtype of Castleman's, you know, this very rare subtype. All of his organs are obviously failing, and he looks just like me when I was at my sickest. I remember telling him that, you know, we're going to beat this. But when David's course of action for Gary doesn't work, they find themselves thrust into the same desperate race against time David knows all too well. I was in a coma.

And I was just, you know, everything in me was tanking. All the things are connected to you and you're just kind of, you feel apart from everything. And I can just remember crying tears of frustration.

Sympathetic Medical Mystery Podcast is a production of Ruby Studio from iHeartMedia. Our show is hosted by me, Lauren Bright Pacheco. Executive producers are Matt Romano and myself. Our EP of post-production is James Foster. Our producers are Ciara Kaiser and John Irwin, and this episode was researched by Diana Davis. ♪

What does Cascauley mean for Lisa, who has HR-positive HER2-negative metastatic breast cancer? I started taking Cascauley in 2020, and I intend to keep taking it as long as it keeps working for me. I have so much going on in my life. I'm a legal assistant, a minister, a grandmother. I love doing all these things, and it's very important that I'm able to keep going.

Individual results may vary. Hiscali Ribocyclib 200mg tablets is a proven prescription medicine used to treat adults with hormone receptor positive human epidermal growth factor receptor 2 negative breast cancer that has spread to other parts of the body, metastatic, in combination with an aromatase inhibitor as the first endocrine-based therapy.

Thank you.

These are not all the possible side effects.

Kaskali is available by prescription only. Talk with your doctor and visit Kaskali.com for more information for patients and providers, including full important safety information and patient prescribing information. That's K-I-S-Q-A-L-I dot com.