Speaker 1: I'll never forget my doctor walking into the room and saying, David,
Speaker 1: your liver, your kidneys, your bone marrow, your heart, and
Speaker 1: your lungs are shutting down. I was just treating patients
Speaker 1: down the hall.
Speaker 2: I was just spiraling, not knowing what was actually happening,
Speaker 2: just being so confused because I just talked to him,
Speaker 2: like two days ago.
Speaker 3: A priest came in and read him his last rites,
Speaker 3: and then a few of us friends came in and
Speaker 3: ultimately hugged him goodbye.
Speaker 1: I had to take some action, and it had to
Speaker 1: be like a crazy step, and that is to start
Speaker 1: testing one of these drugs that I was studying in
Speaker 1: the lab on myself.
Speaker 4: How terrifying would it be to fight an unknown enemy,
Speaker 4: one you didn't recognize and didn't see coming. What if
Speaker 4: that enemy was coming from within a disease even doctors
Speaker 4: couldn't identify. Nearly half of all Americans suffer from some
Speaker 4: chronic illness, and many struggle for an accurate diagnosis. These
Speaker 4: are their stories. I'm Lauren bred Pacheco, and this is symptomatic.
Speaker 4: David Fagenbaum grew up in Raleigh, North Carolina.
Speaker 1: And I've got two older sisters, seven and five years
Speaker 1: older than me, and two amazing parents. They immigrated to
Speaker 1: the United States from Trinidad and Tobago and the Caribbean,
Speaker 1: so they were sort of making this new life the
Speaker 1: American dream in the States.
Speaker 4: And childhood exposure to a very American sport ignited one
Speaker 4: of David's biggest dreams. And your dad is an orthoped
Speaker 4: surgeon and worked for a period of time with North
Speaker 4: Carolina State wolfback team. That's right, which is where at
Speaker 4: the age of seven you had this burning desire to
Speaker 4: play which position in what division?
Speaker 1: I wanted to play quarterback? And I want to play
Speaker 1: Division one college football. That was like my first dream
Speaker 1: and that is all I could think about for about
Speaker 1: a decade.
Speaker 4: Your dad working so much, your mom kind of became
Speaker 4: almost your football trainer.
Speaker 1: She did. She was my football trainer. She was my
Speaker 1: mom obviously. She was also one of my closest friends.
Speaker 1: And there was a hill behind her house and she
Speaker 1: would stand at the top of this hill and I
Speaker 1: would throw the football into the hill and then she could,
Speaker 1: you know, throw it back down. She just wanted to
Speaker 1: help me in any way that she could, even if
Speaker 1: it was just you know, rolling footballs down a hill.
Speaker 4: At an early age. David showed his ability for extreme
Speaker 4: dedication and focus becoming a star high school quarterback. But
Speaker 4: that's just one of the reasons he caught the attention
Speaker 4: of Caitlin, his future wife.
Speaker 2: He was the president of student council and we had
Speaker 2: morning meeting every morning. He got up there with his
Speaker 2: best friend and nothing to do.
Speaker 5: With school at all.
Speaker 2: They started rapping eminem songs. The whole student body was
Speaker 2: just like, what is happening?
Speaker 5: I even said that.
Speaker 2: I'm like, I was very confused by him, but I
Speaker 2: was also like, Wow, he's really attractive.
Speaker 4: Attractive and driven. You ended up playing quarterback for Georgetown.
Speaker 6: That's right.
Speaker 1: Listeners may not know Georgetown has a football team, but
Speaker 1: we do and we are Division one.
Speaker 6: Yes.
Speaker 1: For me, it was the ultimate dream that I Yeah,
Speaker 1: I'd been thinking about for over ten years.
Speaker 4: It's bittersweet too, because I know that your mom was
Speaker 4: diagnosed your freshman year.
Speaker 6: That's right.
Speaker 1: Actually, just two weeks after she dropped me off to Georgetown,
Speaker 1: and I got this phone call for my dad. When
Speaker 1: he called, I started telling you all about this football
Speaker 1: practice we had and all these touchdowns and all this stuff,
Speaker 1: and he was just silent, and then he told me,
Speaker 1: he said, David, your mom has brain cancer. And gosh,
Speaker 1: I was like, what, you know, that can't be mom,
Speaker 1: Like she's she's the most amazing person to everyone, Like
Speaker 1: it's not faired, it's not right, and so yeah, that
Speaker 1: sort of changed everything in my life. It just everything changed.
Speaker 4: Your family did exactly what in an ideal world any
Speaker 4: family would be able to do. You were really there
Speaker 4: and you were so present for her. Did it shape
Speaker 4: your desire to become a doctor?
Speaker 1: It completely shaved my desire to become a doctor. I mean,
Speaker 1: the moment that I heard my mom had cancer, and
Speaker 1: of course the moment that I saw her dealing with
Speaker 1: her cancer, I just said, this is what I have
Speaker 1: to spend the rest of my life life doing. And
Speaker 1: by this, it's taking care of people with horrible diseases,
Speaker 1: and it's searching for treatments so that people don't suffer
Speaker 1: like I witnessed my mom suffering.
Speaker 4: You know, I can't imagine how painful, Because you were
Speaker 4: nineteen when she passed.
Speaker 6: I could go on all day about her. She was
Speaker 6: such a force.
Speaker 1: She battled brain cancer for fifteen months, just so valiantly,
Speaker 1: and everything about it you know, I share about the
Speaker 1: humor that she brought into it. You know, the very
Speaker 1: first brain surger she had. You know, we were devastated
Speaker 1: going to that surgery. You know, what's mom going to
Speaker 1: be like coming out of this? Is she gonna be
Speaker 1: the same person. So I'll go back to see her,
Speaker 1: and I remember that they pulled this curtain back and
Speaker 1: she had this wrap around her head and then she
Speaker 1: had this tube coming out of the incision and it
Speaker 1: had sort of a bull at the end.
Speaker 6: It was actually collecting the fluid.
Speaker 1: She looked at us and she pointed to her head
Speaker 1: and she said, shaquida banana lady, and we just like
Speaker 1: burst into laughter. It was we needed. But my mom's
Speaker 1: passing it impaled me and then it set me on fire.
Speaker 4: David's focus now set on medicine. He graduated from Georgetown
Speaker 4: and was attending the University of Pennsylvania for his medical degree,
Speaker 4: and although no longer leading a football team, his drive
Speaker 4: for physical fitness continued.
Speaker 1: I continued to exercise a lot, and that was just
Speaker 1: an out with it I loved. And so as a result,
Speaker 1: I became like really.
Speaker 4: Fit, and you had a nickname because of it.
Speaker 1: Yes, I was called the Beast because I was in
Speaker 1: really good shape. I want a bench pressing contest. In fact,
Speaker 1: I set the Virginia state record for bench pressing, which
Speaker 1: if you were to look at me now, you'd be like,
Speaker 1: you sure about that, because I definitely am not going
Speaker 1: to set any bench pressing records these days.
Speaker 3: He was really one of the healthiest guys I'd ever met.
Speaker 3: We'd go to the cafeteria and he'd get a piece
Speaker 3: of chicken and pick the fat off the chicken, even
Speaker 3: because he was soicular about what was going into his body.
Speaker 4: That's Grant Mitchell, David's longtime friend, colleague and college roommate.
Speaker 3: So in medical school you do rotations in different hospitals,
Speaker 3: and we got posted out for our Obigian rotation in Bethlehem, Pennsylvania,
Speaker 3: outside of Philadelphia, and we were staying in some dorms
Speaker 3: there and there was no gym, and so that was
Speaker 3: not going to stop David from working out. And so
Speaker 3: we found a tree outside of the dorm there that
Speaker 3: had a nice branch.
Speaker 1: The tree branch, he just looked too perfect. It was horizontal,
Speaker 1: it was perfect, so.
Speaker 3: We could hang from and do pull ups from.
Speaker 1: And so yeah, every time we walked past this tree.
Speaker 1: We had to do pulps before we went to treat patients,
Speaker 1: So yeah, we had to get pull ups in every morning.
Speaker 4: And in a weird way, that tree branch ended up
Speaker 4: being an indicator that you were getting sick.
Speaker 1: You're right, because as the weeks went on, I stopped
Speaker 1: wanting to do the pull ups. I didn't have the
Speaker 1: energy to do the pulps. I actually hadn't thought about
Speaker 1: that until you mentioned that. Now, yeah, I couldn't do them.
Speaker 1: I was just dragging.
Speaker 4: At this point in his third year of medical school,
Speaker 4: David's mental focus was on his residency and passing exams.
Speaker 4: But suddenly I'm quite out of character. David was having
Speaker 4: trouble keeping up physically, and.
Speaker 1: Then the fatigue became, this fatigue that I had never
Speaker 1: experienced before. It was like this insatiable fatigue. Basically, like
Speaker 1: no matter how much I slept, I just was exhausted.
Speaker 6: I couldn't get out of bed.
Speaker 1: I noticed lumps and bumps in my neck and flewid
Speaker 1: around my ankles, and I didn't want to go there mentally,
Speaker 1: but I knew that if a patient walked into my office.
Speaker 1: I was a third year medicinistation walked into my room
Speaker 1: and I'm the doctor looking at them, I would have
Speaker 1: been very concerned, and I would have specifically said, I'm
Speaker 1: very worried that you have an aggressive lymphoma, and in
Speaker 1: such an aggressive lymphoma that you know you might have
Speaker 1: a few weeks to live of it was moving so rapidly,
Speaker 1: but I was like trying to just block that out
Speaker 1: of my brain while at the same time I knew
Speaker 1: something really bad was happening.
Speaker 6: I even told.
Speaker 3: Grant one day he walked into the living room of
Speaker 3: our apartment and he said, something.
Speaker 6: Is just wrong.
Speaker 3: I think I'm gonna die. And David, what, You're not
Speaker 3: going to die? Like, what's gotten into you?
Speaker 4: How did you process that? Maybe just the stress of
Speaker 4: med school getting to him.
Speaker 3: Yeah, I just thought that, you know, he was focused
Speaker 3: on health, and I didn't think much of it, just
Speaker 3: told him to, you know, relax, it's okay. A lot
Speaker 3: of medical students go through this when they are in
Speaker 3: medical school and they're learning thousands of different ailments that
Speaker 3: can occur in the human body, and you start sort
Speaker 3: of thinking about what's going on inside of you and
Speaker 3: even get a little sense of paranoia. And overdiagnosis. It's
Speaker 3: kind of a running joke within medical school. Everyone's sort
Speaker 3: of diagnosing themselves and all the different things that could
Speaker 3: be happening. And so I just thought it.
Speaker 4: Was that, in addition to the exhaustion and swelling, David
Speaker 4: was noticing rashes and redness popping up all over his body.
Speaker 4: It was clear that whatever was going on it needed
Speaker 4: immediate attention, but David, being hyper focused, was determined to
Speaker 4: make it through his OBGYN exam before turning his attention
Speaker 4: towards himself.
Speaker 1: I remember, while I'm taking the exam, just like full
Speaker 1: body sweating. I'm like shivering, I like can't keep my
Speaker 1: eyes open. But I went from taking the exam and
Speaker 1: I went down the hall and I just I went
Speaker 1: straight to the er and they took me back almost immediately.
Speaker 1: I just was I was so ill, and they did
Speaker 1: blood work, and I'll never forget my doctor walking into
Speaker 1: the room and saying, David, your liver, your kidneys, your
Speaker 1: bone marrow, your heart, and your lungs are shutting down.
Speaker 1: We have to hospitalize you right away. And I'm like
Speaker 1: sitting I'm like, but I was just treating patients down
Speaker 1: the hall like a couple days ago.
Speaker 2: We weren't taking a break at this point, and I
Speaker 2: remember being on Facebook and seeing a lot of people
Speaker 2: writing on his page and praying for you.
Speaker 5: I'm thinking about you. So I was wondering what was
Speaker 5: going on.
Speaker 1: I hope that it was maybe some virus, because viruses
Speaker 1: come and go. You might get really sick, but it'll
Speaker 1: be gone at some point. We hoped it was a virus.
Speaker 1: Didn't turn out to be a virus. We then thought,
Speaker 1: maybe it's not an immune disease, but you know, none
Speaker 1: of that immune disease tests were coming back, and then
Speaker 1: that sort of left us with, like, what's the other
Speaker 1: thing that could be caused in this sort of the big, bad,
Speaker 1: scary thing, and that was lymphoma. But the tests we
Speaker 1: were doing weren't giving us an answer. And that was
Speaker 1: actually one of the last really vivid memories I have
Speaker 1: from what then turned into hospitalization, where I just became
Speaker 1: more and more confused and less and less aware of
Speaker 1: what was going on.
Speaker 4: David and his family found themselves in an all too
Speaker 4: familiar and painful situation, gathered around a hospital bed, only
Speaker 4: this time David as the patient. Doctors performed a bone
Speaker 4: marrow biopsy, pet scans, MRIs a liver biopsy, among other tests,
Speaker 4: none of which provided clarity around the cause of these symptoms.
Speaker 4: David was given high dose corticosteroids, a common practice in
Speaker 4: the ICU when there is no clear path to treatment,
Speaker 4: and as the days and weeks progressed, David's illness was
Speaker 4: impossible to ignore.
Speaker 1: The physical morph was pretty incredible, and sometimes you have
Speaker 1: to see the pictures to really understand, but I'll try
Speaker 1: to describe what happened to me. So, because my liver
Speaker 1: and my kidneys stopped working, what happens is you start
Speaker 1: getting fluid all over your body. So I gained what
Speaker 1: we estimate to be close to one hundred pounds. Now
Speaker 1: imagine at the same time, you're not eating because you're
Speaker 1: so sick and you can't keep down any food, and
Speaker 1: your immune system is literally ravaging all your right organs.
Speaker 1: So as a result, you lose all of the muscle
Speaker 1: mass and any lean mass that you have. So you're
Speaker 1: left with a body that has one hundred pounds of fluid,
Speaker 1: has lost fifty to sixty pounds of muscle. You're just
Speaker 1: bone and fluid everywhere. You're just like a swollen skeleton. Basically,
Speaker 1: that's what I looked like.
Speaker 3: The pictures that we have of him in the hospital
Speaker 3: are not even close to how bad it was. And
Speaker 3: the reason for that was because David didn't want any pictures.
Speaker 3: That's not how he wanted to be remembered. David thought
Speaker 3: he was dying.
Speaker 4: David was airlifted back to his hometown to the hospital
Speaker 4: his father worked out of. He spent seven more weeks
Speaker 4: there until he improved just enough to be discharged, only
Speaker 4: to find himself right back where he was one month later.
Speaker 4: After months testing and hospitalization, David had a lymph node biopsy,
Speaker 4: which returned some surprising results.
Speaker 1: I wasn't talking, I wasn't doing anything. I was just
Speaker 1: laying there. So imagine there's eleven weeks of like my
Speaker 1: dad and my two sisters just being there for me
Speaker 1: through everything, helping me to breathe. I didn't want to breathe, like,
Speaker 1: just fighting for my life. And the first moment where
Speaker 1: like the three of them are not in the room,
Speaker 1: it's like the moment when the sturse comes in. So
Speaker 1: she's like, you know, I got the news. I just figured,
Speaker 1: you know, i'd deliver it to you. And she's like
Speaker 1: good news. It's not lymphoma. And then she looks at
Speaker 1: the piece of paper because she like doesn't know what
Speaker 1: the word is, like she's never seen it. She's like, uh,
Speaker 1: you have something called castlemans.
Speaker 6: I'm like, well, is that good? Is that bad? She's like, well,
Speaker 6: it's not lymphoma. Like it's great, I guess.
Speaker 1: And so here I am by myself and I'm like great,
Speaker 1: it's like Castleman's like, I don't I'm a med student,
Speaker 1: but I don't remember learning about it.
Speaker 6: I think maybe I heard it once in my life.
Speaker 3: So good news. We know what it is. So what
Speaker 3: do you do when you first hear about something? I
Speaker 3: learn more?
Speaker 6: You google it.
Speaker 3: Then you see the Wikipedia page.
Speaker 1: The way that it was described was that it was
Speaker 1: just uniformly fatal and everyone died within a couple of
Speaker 1: years of diagnosis. And I was just devastated to read
Speaker 1: about this disease.
Speaker 4: Castleman disease is a rare condition that causes the immune
Speaker 4: system to go into hyperdrive, attacking organs and bodily pathways.
Speaker 4: In the United States, they're only about five thousand new
Speaker 4: cases annually, with each prognosis varying based on the subtype.
Speaker 4: David was unfortunately diagnosed with one of the most aggressive variations.
Speaker 4: Desperate to quickly find a treatment that worked, David was
Speaker 4: transferred to the hematology and oncology ward at Duke in Durham,
Speaker 4: North Carolina.
Speaker 1: When I was at Duke for my second hospitalization, I
Speaker 1: was so sick that my doctors encouraged my family to
Speaker 1: say goodbye to me.
Speaker 3: It was shocking. You know, we were still very young.
Speaker 3: It was the time in our lives where we were
Speaker 3: energized to you know, we were healthy, we were young,
Speaker 3: we were ready to go conquer the world. And to
Speaker 3: see the person among us that seems the strongest transformed
Speaker 3: so abruptly was startling. It was hard to process. I
Speaker 3: didn't think it was even real, like, surely he'll just
Speaker 3: be fine soon. And that changed dramatically for us when
Speaker 3: they ultimately told him that they didn't know what else
Speaker 3: they could do. I'll never forget the moment when a
Speaker 3: priest came.
Speaker 1: In to read me my last rites. That was in
Speaker 1: November of twenty ten. I was twenty five years old.
Speaker 3: Then a few of his friends came in and ultimately
Speaker 3: hugged him goodbye. And I think everyone tried to keep
Speaker 3: a positive outlook, you know you're going to be okay.
Speaker 3: And I remember I couldn't really keep it together. David
Speaker 3: and I talked about that a lot. He says that
Speaker 3: he almost knew how bad it was when I came
Speaker 3: in the room and you saw my face because I
Speaker 3: couldn't hide help. Horrifying it was to see him in
Speaker 3: that state.
Speaker 1: Yeah, And when you're administer your last rods, when you
Speaker 1: say goodbye to your family, you don't do it like
Speaker 1: thinking that I'm going to get another shot at this.
Speaker 6: It's like this is it.
Speaker 4: David, who had been the physical ideal of athleticism and
Speaker 4: health just months before, was now unrecognizable, seemingly at the
Speaker 4: end of his fight with Castleman, Caitlyn traveled to visit
Speaker 4: him in the hospital. Despite no longer dating at the time,
Speaker 4: there was still a connection between them.
Speaker 2: If this was going to be the last time, I
Speaker 2: wanted to talk to him, just to hold his hand,
Speaker 2: to see how he was doing.
Speaker 1: I can barely form sentences. I don't know what the
Speaker 1: heck's going on. I'm confused, and this is going to
Speaker 1: be the last time Caitlyn's going to see me. I'm
Speaker 1: not going able to tell her the things that I
Speaker 1: want to tell her. So she came to visit me
Speaker 1: multiple times, and each time I had somehow communicated to
Speaker 1: my sisters that I didn't want her to come.
Speaker 6: In the room.
Speaker 2: I thought that maybe she didn't know that I was
Speaker 2: trying to see him, because you know, I had his
Speaker 2: phone number, and I would reach out and I just
Speaker 2: you know, wouldn't hear back from him.
Speaker 5: So then I would reach.
Speaker 2: Out to his sisters and just see And I did
Speaker 2: think that they were maybe they were mad at me
Speaker 2: because I broke up with him, and you know, I
Speaker 2: thought maybe there was like something like petty, but like
Speaker 2: there wasn't.
Speaker 5: They were just protecting their brother.
Speaker 1: I regret that, because who cares if I didn't look
Speaker 1: like my former self? And who cares, you know, if
Speaker 1: I didn't say the right words.
Speaker 4: David had now come to the brink of death twice
Speaker 4: in a span of three months.
Speaker 1: Turned out that there were no FD approved drugs, but
Speaker 1: there were a couple of drugs that have been tried,
Speaker 1: particularly chemotherapies, and one of them worked for a little
Speaker 1: bit of time, and then I started to relapse while.
Speaker 4: The chemo suppressed David's immune system stopped been Castleman from
Speaker 4: attacking his body. It also took a heavy toll on
Speaker 4: David's ability to fight, but there was one last hope
Speaker 4: waiting for him in Arkansas.
Speaker 1: I learned that there was the world's expert was in
Speaker 1: Little Rock, Arkansas. So I traveled out to the Mecca
Speaker 1: Castle and Disease. I've been given the plan like I'm
Speaker 1: going to be on an experimental drug. It was going
Speaker 1: into going a clinical trial and everyone and it was
Speaker 1: working for a bunch of people, and I was like,
Speaker 1: oh my gosh, Like, you know, we'd been praying for
Speaker 1: this for my mom and we never got it. But
Speaker 1: now here we were for me, like maybe we got this.
Speaker 1: This is like the drug we've been waiting for. And
Speaker 1: you know, just before I was supposed to fly back
Speaker 1: to North Carolina, which is where my family lives, to recover,
Speaker 1: the test results came back from my Little Rock visit
Speaker 1: that my labs were all horrible and my organs were
Speaker 1: all shutting down again. So we actually were we were
Speaker 1: actually in the airport in Little Rock getting ready to leave,
Speaker 1: and then we just went back to the hospital. That
Speaker 1: was the beginning of about a seven week long hospitalization
Speaker 1: and where I.
Speaker 6: Sort of went off the cliff again.
Speaker 4: My gosh, you you had to go through this cycle
Speaker 4: so many times. How did you find the strength in
Speaker 4: those moments to just keep going?
Speaker 6: Yeah?
Speaker 1: I think for me, there were a few things that
Speaker 1: helped me to keep fighting. I mean, for one, I
Speaker 1: felt like I had this unfinished business to do. Like
Speaker 1: I promised my mom, I was going to find drugs
Speaker 1: for people suffering from diseases.
Speaker 6: And I'm a third year med student.
Speaker 1: I'm sort of like finally somewhat trained to start helping people,
Speaker 1: and then now I'm going to go out and never
Speaker 1: be able to do the thing that I promised my mom.
Speaker 1: Another one was just the amazing support I got from
Speaker 1: my family. My sisters never left my side, my dad
Speaker 1: never left my side. I just wanted to be with
Speaker 1: them longer, Like, I just wanted more time with them.
Speaker 4: Having traveled nearly one thousand miles to the world's foremost
Speaker 4: castleman expert David recognized the continued cycle of chemotherapy with
Speaker 4: catch up to him. That's when things changed. He was
Speaker 4: no longer content to merely be the patient.
Speaker 1: My doctor explains to me that, like we've tried everything,
Speaker 1: there's nothing else that we can do. And I just
Speaker 1: hid rock bottom. I thought, I'm going to get to
Speaker 1: work and tried to find a treatment for this disease
Speaker 1: to save my life.
Speaker 4: We'll be right back with Symptomatic, a Medical Mystery Podcast.
Speaker 4: Now back to Symptomatic, a Medical Mystery Podcast. David Fagenbaum,
Speaker 4: once a college quarterback and powerlifting champion, was coming out
Speaker 4: of his third hospitalization from Castleman disease. After the only
Speaker 4: known drug to help treat Castleman failed, David went through
Speaker 4: seven weeks of multi agent chemotherapy, daily blood transfusions and dialysis.
Speaker 4: David and his family returned home to North Carolina, fearful
Speaker 4: of when the next relapse would begin, but this time
Speaker 4: he had a little extra support.
Speaker 1: So this stage, this is when I had lost my
Speaker 1: hair from chemotherapy. I still had about fifty pounds of
Speaker 1: fluid all over my body. My belly, you know, was
Speaker 1: indistinguishable from someone who would be eight months pregnant.
Speaker 6: And Caitlin she was at my door.
Speaker 2: I didn't know how bad it was when I was there,
Speaker 2: because no one gave me the details. When I was
Speaker 2: reaching out to his sisters, no one said, this is it.
Speaker 2: He's being read his last right. I didn't find these
Speaker 2: things out until later, which almost helped.
Speaker 5: It kind of helped me cope.
Speaker 1: And she said to me, I want us to get
Speaker 1: back together. I'd been hoping for that for so long,
Speaker 1: but here I am with like this horrible, deadly disease.
Speaker 1: I don't think any human could have more baggage than
Speaker 1: I had at that moment, being like, or are you sure?
Speaker 1: Like you know, I got a what going on? You know,
Speaker 1: got this horrible, deadly disease, like are you sure? And
Speaker 1: she looked at me like she was offended that I
Speaker 1: was asking her that, like of course, like are you
Speaker 1: kidding me?
Speaker 6: Like, of course, I want us to get back together.
Speaker 1: And it was like that's exactly what I needed.
Speaker 5: In that moment, I knew it was him.
Speaker 2: It was still him in there, so it just didn't
Speaker 2: matter the physical appearance.
Speaker 4: Is there a moment that you look back where you
Speaker 4: worried because it was just too much for David?
Speaker 2: I mean, it was definitely when his doctors said that
Speaker 2: they've tried everything and there was nothing else that they
Speaker 2: could do.
Speaker 5: That's when Dave was like, I got to take this
Speaker 5: into my hands. What can I do for myself?
Speaker 1: If I'm gonna hope for a drug to save my life,
Speaker 1: Like shouldn't I be acting or like doing something to
Speaker 1: get there? So for me, it was okay, I'm gonna
Speaker 1: get involved in research. I'm going to build an organization
Speaker 1: called the Castle Clibor Network. I'm gonna start conducting laboratory
Speaker 1: research myself, and I'm gonna get to work.
Speaker 2: In day fashion that how he copes, he's going to
Speaker 2: fix it. So we were his doers, and he was
Speaker 2: the fixer while he's in the hospital bed having ice
Speaker 2: packs under his arms because he is fevers.
Speaker 3: And for someone who is as focused as Dave, there's
Speaker 3: nothing that will focus you more in this life than
Speaker 3: staring down that clock. You know, we call it a
Speaker 3: dream team, but you know, David was the engine. David
Speaker 3: was the force behind it all. He was quarterbacking it absolutely.
Speaker 3: He slotted right in in that role.
Speaker 4: David spent the next six months at home regaining his strength,
Speaker 4: and although the experimental drug still tuxamab, that David had
Speaker 4: taken failed to help him recover, he was now using
Speaker 4: it in hopes that it would work as a preventative measure.
Speaker 4: He returned to medical school and got to work on
Speaker 4: finding a cure for castlemen.
Speaker 1: We weren't just going to hope that Santa's elves were
Speaker 1: going to like magically come up with some brilliant idea
Speaker 1: and do the research. We simply said, what should we do?
Speaker 1: We asked everyone that, and then we simply found the
Speaker 1: best people in the world to do the things that
Speaker 1: were prioritized to us. So that was one major shift,
Speaker 1: and the other one was again a very simple realization,
Speaker 1: and that was it costs between one and two billion
Speaker 1: dollars to create a new drug from scratch, and that
Speaker 1: can take ten to fifteen years for one drug. So
Speaker 1: I didn't have a billion dollars. I didn't have ten
Speaker 1: to fifteen years. So I say, okay, well, how else
Speaker 1: could I potentially be treated? Well, all those chemotherapies that
Speaker 1: I got that saved my life, they weren't made for
Speaker 1: castleum and disease. What if there's some other drug out
Speaker 1: there that wasn't made for Castle disease. I mean, the
Speaker 1: chemo doesn't work long term, but it's saved my life
Speaker 1: a few times. I appreciate the chemo. Is there something else?
Speaker 1: So that became my mission. Can I figure out what's
Speaker 1: going wrong in my body? And then can I figure
Speaker 1: out is there a drug that's already FDA prooved for
Speaker 1: some other disease that might actually be able to be
Speaker 1: useful for my disease that I thought could save my life.
Speaker 4: David recruited experts from all over the world to join
Speaker 4: the Castleum Disease Collaborative Network or CDCN, and diligently continued
Speaker 4: his lab research to understand what was happening in his body.
Speaker 4: Despite all the effort toward finding a cure, David experienced
Speaker 4: a four to th relapse in April of twenty twelve.
Speaker 4: After his longest stretch of stability. The now standard playbook
Speaker 4: for flare up, David gets a massive round of chemo,
Speaker 4: all while trying to maintain some sort of normalcy in
Speaker 4: his life.
Speaker 1: So at this stage, Caitlin and I are engaged, were
Speaker 1: engaged to get married in May twenty fourth, twenty fourteen,
Speaker 1: and I know that I'm not going to make it
Speaker 1: there at the current rate. I Actually my last relapse
Speaker 1: was while I was getting weekly chemotherapy for the first
Speaker 1: time ever. We were like, let's try it prementive chemo,
Speaker 1: which is not a thing, but let's try it like
Speaker 1: in advance and see if that'll stop it. And it
Speaker 1: still roared its head, it's still exploded. Still put me
Speaker 1: in nice you for a month. So that didn't work.
Speaker 3: It's impossible to work backwards from there to figure out
Speaker 3: what went wrong that led to it. And it occurred
Speaker 3: to us that instead of taking samples from his blood
Speaker 3: while he was in the throes of these flares, we
Speaker 3: should take those samples before and after, and we should
Speaker 3: do it every few weeks so that we can study
Speaker 3: maybe the progenitor markers of what is initiating this cascade,
Speaker 3: and if we can find out what's going on early
Speaker 3: before it goes full blown, maybe we can stop the
Speaker 3: cascade from ever occurring.
Speaker 1: I've said goodbye to my family five times, and this
Speaker 1: thing's gonna keep coming back. So if I wanted to
Speaker 1: make it to May twenty four to twenty fourteen, I
Speaker 1: had to take some action, and it had to be
Speaker 1: a pretty in hindsight like sort of crazy step, and
Speaker 1: that is to start testing one of these drugs that
Speaker 1: I was studying in the lab on myself.
Speaker 5: And I was like, what are the side effects?
Speaker 2: You know?
Speaker 5: He was like, it could either work or you know,
Speaker 5: it doesn't work. So I just I was very confused.
Speaker 2: I was like, are you sure, like yourself, you're going
Speaker 2: to try this on yourself? And so I was very
Speaker 2: unsure about it. I didn't have a lot of faith,
Speaker 2: but this was going to work. I felt like we
Speaker 2: were just going to be in the same place fifteen
Speaker 2: months later.
Speaker 4: Was that your biggest fear?
Speaker 5: Yeah, that it was just going to be a cycle.
Speaker 4: As David battles Castleman disease for the fifth time, he
Speaker 4: starts to put his research to the test, trying drugs
Speaker 4: that will target the immune system. First on the list,
Speaker 4: David started taking cyclosporin. While he showed no signs of improvement,
Speaker 4: his condition didn't worsen, which seemed positive. He then moved
Speaker 4: on to the second drug, ivig hope. David feel better
Speaker 4: almost immediately. Blood tests were finally heading in the right direction,
Speaker 4: only for Castleman disease to knock David down once again.
Speaker 4: A few weeks later, it was back to the old
Speaker 4: playbook and David had to undergo another massive round of chemo.
Speaker 1: There was some real heartbreak, right. It was like, Caitlin,
Speaker 1: I've been doing this work in the lab. I've been
Speaker 1: experimenting on my own blood samples and been experimenting on
Speaker 1: flinto tissue. That's like the moment where you want to
Speaker 1: try these drugs to see, like while you're getting worse,
Speaker 1: like does it stabilize things?
Speaker 6: And it didn't, and that was heartbreaking.
Speaker 3: And the tricky thing about this disease is that you
Speaker 3: don't necessarily know if it's working or not until you
Speaker 3: don't have a flare. So you have to wait. And
Speaker 3: these flares that happen about every year. So let's say
Speaker 3: a flare occurs and then you realize the drug that
Speaker 3: you're on didn't work, and now you try a new
Speaker 3: drug after the flare subsides, and it doesn't just subside.
Speaker 3: You have to obliterate your immune system with seven agent
Speaker 3: chemo to stop it. And then once you survive that
Speaker 3: onslaught of toxic drugs and you say, okay, now we'll
Speaker 3: try a new drug.
Speaker 1: And I don't know how I survived that fifth one.
Speaker 1: They gave me like humanly impossible doses. I was like
Speaker 1: taking like large animal doses of chemo, but I knew
Speaker 1: that it wasn't gonna work long term.
Speaker 4: I can't imagine watching someone you love suffer the way
Speaker 4: he obviously suffered with all of those relapses, but particularly
Speaker 4: in the case of the chemo, the treatment seemed even
Speaker 4: worse than the disease. How grueling was it to watch
Speaker 4: him go through a cycle of relapses.
Speaker 2: It was just like such a letdown when you would think, like,
Speaker 2: he just did the chemo and now he's he's been
Speaker 2: better for sixteen to eighteen months, and then all of
Speaker 2: a sudden, you know, it happens again.
Speaker 5: It was just so frustrating, like.
Speaker 2: How many times can a body get this much chemotherapy?
Speaker 4: After recovering from his fifth barrage of chemo, David looks
Speaker 4: at the last option on the table from his research
Speaker 4: getting to know Castleman disease. Through their experimentation, Grant and
Speaker 4: David learned that his subtype causes the bodily communication line
Speaker 4: called intour to go in to overdrive. Mtour tells the
Speaker 4: immune system to mobilize and activates tea cells to go
Speaker 4: to war attacking foreign cells or in David's case, his
Speaker 4: own I.
Speaker 6: Thought that, hey, why don't use an mTOR inhibitor.
Speaker 1: I mean again, it was very simple, as there was
Speaker 1: too much This communication line looked like it was turned
Speaker 1: into overdrive.
Speaker 6: Here's a drug that turns it off. Let's try it.
Speaker 3: We were at a point where there was a no
Speaker 3: regret move to try something else, and that was something
Speaker 3: called serri limis. It is isolated from a fungus found
Speaker 3: in the soil of Easter Island. It hits the mtour
Speaker 3: pathway and reduces T cell activation. Maybe it could prevent
Speaker 3: the cascade that ultimately led to cytokind storm that would
Speaker 3: attack his body.
Speaker 1: This was the third and frankly probably the last possible attempt.
Speaker 1: There weren't many more drugs on our list of possibilities,
Speaker 1: and there wasn't much more time, so it was the
Speaker 1: last ditch effort after like many last.
Speaker 4: Ditch efforts, Now taking the only medication left on the table,
Speaker 4: David and Caitlin did have something worth looking forward to
Speaker 4: their wedding. But what was weighing on David's mind the
Speaker 4: issue of the hair on his head, or lack thereof.
Speaker 3: I remember we were in the hotel room getting ready
Speaker 3: for the wedding and he had just started to grow
Speaker 3: his hair back. He was so protective of every hair
Speaker 3: on his head. You know, it didn't look good. It
Speaker 3: was just kind of like thinly there and a little
Speaker 3: bit on his neck, and like I was, like David,
Speaker 3: let me, just shave these hairs on the back of
Speaker 3: your neck so you can look nice and trim for
Speaker 3: your wedding day.
Speaker 1: And I told him absolutely not, because my hair had
Speaker 1: just come in, Like I got like my hair started
Speaker 1: to grow like two weeks before my wedding day, so
Speaker 1: it kind of looked like I just had this like
Speaker 1: very short buzz cut or something. But yeah, I had
Speaker 1: your neck hair had grown back, and Grant's like, let
Speaker 1: me clean you up.
Speaker 6: It's your wedding now.
Speaker 1: I'm like, no, like every every follicle matters, like you're not.
Speaker 1: There's every hair that is on my head, it is
Speaker 1: staying there.
Speaker 5: I love that.
Speaker 3: But it was just awesome because, like I said, after
Speaker 3: I hugged him goodbye that day, I didn't think I'd
Speaker 3: ever seen him again.
Speaker 4: Having already been through until death do us part? What
Speaker 4: did it mean to exchange vows? What did your wedding
Speaker 4: mean to you? On a deeper level.
Speaker 5: It was so powerful.
Speaker 7: It was like those words were so real where I
Speaker 7: feel like people just say those as their vowels, but
Speaker 7: really we meant them so much to each other.
Speaker 5: We had already been through it. Yeah, it just meant
Speaker 5: so much to us.
Speaker 4: As David and Caitlin now looked towards the future. They
Speaker 4: couldn't help but be troubled by lingering thoughts of fear.
Speaker 4: Will Castleman disease return, and if so, what other possible
Speaker 4: options are left on the table.
Speaker 3: We didn't know right away if it was working or not.
Speaker 2: We kind of just waited each month and we're like,
Speaker 2: is it coming?
Speaker 3: Is it coming? We had to wait a full year
Speaker 3: to see if he was going to undergo another flare.
Speaker 3: So eight months go by, we're on the edge of
Speaker 3: our seat. Twelve months go by, we're watching and waiting.
Speaker 3: Fourteen months, sixteen, eighteen.
Speaker 5: Nineteen months, twenty months, twenty.
Speaker 3: One months, two years go by, and it.
Speaker 2: Wasn't coming back. We were kind of like, oh, my gosh,
Speaker 2: something's working.
Speaker 3: Months and months after, longer than he'd ever been in
Speaker 3: remission or not in flair. My god, my god, he's okay.
Speaker 3: We think we found a cure.
Speaker 1: This cri linemus. That's the one that worked, and that's
Speaker 1: why I'm here and on this podcast right If it
Speaker 1: didn't work, I'm not here. Ten years ago is when
Speaker 1: I pass and I'm you know, very much a memory
Speaker 1: for Caitlin and my family. But it's because we connected
Speaker 1: on that last one that I'm still here and that
Speaker 1: that now I can continue to pursue this for other people.
Speaker 4: How did this shape your perspective once it went into remission,
Speaker 4: if I may use that word.
Speaker 1: Yeah, absolutely, I do like to use that word. And
Speaker 1: ever since this permission started, I just have this feeling
Speaker 1: of overtime. It's like, okay, like I don't know when
Speaker 1: the disease could come back, and of course there's more
Speaker 1: and more days go by, the more confident I feel that,
Speaker 1: you know, maybe we've really, you know, gotten this disease
Speaker 1: under under full control. But it's just given me this
Speaker 1: urgency where it's like I got to do as many
Speaker 1: things as I can do.
Speaker 2: When we finally got off the hamster wheel, Yeah, it
Speaker 2: was just like I can just like feel even saying
Speaker 2: it to you right now, I can feel like wait,
Speaker 2: just coming off my chest, like in that moment, we
Speaker 2: were so relieved.
Speaker 4: David Fagenbaum was pushed to the brink of death five
Speaker 4: times before finally finding a medicine that sent his Castleman
Speaker 4: disease into remission. David and Caitlin didn't just make it
Speaker 4: to their first wedding anniversary. They're now celebrating their tenth
Speaker 4: and counting, along with the two adorable children they welcomed
Speaker 4: along the way.
Speaker 5: We're just so much more grateful for the small things.
Speaker 2: Amelia's having her preschool graduation and now Dave gets to
Speaker 2: be at like her preschool graduation, so like huge milestone
Speaker 2: for our family. We're just so grateful for that, just
Speaker 2: having him be able to come to her dance recital.
Speaker 2: We're just so grateful that we are in this overtime
Speaker 2: for our family.
Speaker 5: And I truly believe our overtime is going to go
Speaker 5: on for.
Speaker 2: A long time.
Speaker 4: Just as living through his mother's cancer treatment pushed him
Speaker 4: to study medicine, living through Castleman disease lit a new
Speaker 4: fire within David.
Speaker 1: You know, after finding out that serria limus could save
Speaker 1: my life, all I've been able to think about for
Speaker 1: these last ten years is how many more drugs are
Speaker 1: sitting out there they could be life saving for other people.
Speaker 1: I mean, I was walking back and forth past this
Speaker 1: CVS that ended up being the place where I got
Speaker 1: my serrial limis from for years it was always there,
Speaker 1: and like for years, I'm sick with this horrible disease,
Speaker 1: I'm in the ICU, and then I'm home, and then
Speaker 1: I'm back in the ICU, and all along that pill
Speaker 1: bottle with serrial limis, And it had been there because
Speaker 1: it's a proof for kidney transplant rejection and it's utilized
Speaker 1: by people all over the world, but it's not used
Speaker 1: for Castleman's. And it's like, oh, my gosh, how many
Speaker 1: more of those drugs that your CVS could be life
Speaker 1: saving for you or someone you love. I mean, like, like,
Speaker 1: what is the untapped potential within our medical system?
Speaker 4: And Grant, you decided to join him in this pursuit.
Speaker 3: Yeah, And we called all the researchers in the world
Speaker 3: that might know anything about this disease. There are only
Speaker 3: twenty of them or so, and we invited them all
Speaker 3: to a conference. And I'll never forget sitting there at
Speaker 3: the head of the table with David. So this is David,
Speaker 3: I'm Grant, you know, and we're here to cure Castleman disease.
Speaker 3: And just seeing these researchers who had been at this
Speaker 3: for years around the table kind of chuckle and say, okay, kids,
Speaker 3: you know, good luck. You know, we'll try and be helpful.
Speaker 3: It's just one of those moments where we were young
Speaker 3: and naive enough to have the audacity to think that
Speaker 3: we could do anything.
Speaker 4: Unlocking the off label potential of approved medicines will quickly
Speaker 4: be put to the test. In Part two of David's story,
Speaker 4: join us next week as David crosses paths with another
Speaker 4: patient battling Castleman disease, Gary Gravina, who is clinging to
Speaker 4: life during a terrifying flare up.
Speaker 8: My wife started to notice that my stomach was getting larger,
Speaker 8: and I wasn't really eating because I felt so ill,
Speaker 8: and so for me to be putting on weight was weird.
Speaker 8: I'm thinking, well, this is going to be something really
Speaker 8: simple and they're going to take care of it. And
Speaker 8: then when they started talking about admitting me, I'm like,
Speaker 8: come on, this is this is not something like that.
Speaker 8: I don't need to be in the hospital. This is ridiculous.
Speaker 8: By the end of that week, I was in a
Speaker 8: medically into his cooma.
Speaker 4: Having beaten back his own Castleman disease. David is determined
Speaker 4: to help Gary fight his.
Speaker 1: I'm told, hey, there's a patient with your subtype of Castleman's.
Speaker 1: You know, this very rare subtype. All of his organs
Speaker 1: are obviously failing, and he looks just like me when
Speaker 1: I was at my sickest. I remember telling him that,
Speaker 1: you know, we're going to beat this.
Speaker 4: But when David's course of action for Gary doesn't work,
Speaker 4: they find themselves thrust into the same desperate race against time.
Speaker 4: David knows all too well.
Speaker 8: I was in a coma and I was just, you know,
Speaker 8: everything in me was tanking, all the fingers connected to you,
Speaker 8: and you're just kind of you feel apart from everything,
Speaker 8: and I can just remember crying tears of frustration.
Speaker 4: Symptomatic Medical Mystery Podcast is a production of Ruby Studio
Speaker 4: from iHeartMedia. Our show is hosted by me Lauren Brett Pacheco.
Speaker 4: Executive producers are Matt Romano and myself. Our EP of
Speaker 4: post production is James Foster. Our producers are Sierra Kaiser
Speaker 4: and John Irwin. And this episode was researched by Diana
Speaker 4: Davis