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Speaker 1: I'll never forget my doctor walking into the room and saying, David,

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Speaker 1: your liver, your kidneys, your bone marrow, your heart, and

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Speaker 1: your lungs are shutting down. I was just treating patients

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Speaker 1: down the hall.

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Speaker 2: I was just spiraling, not knowing what was actually happening,

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Speaker 2: just being so confused because I just talked to him,

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Speaker 2: like two days ago.

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Speaker 3: A priest came in and read him his last rites,

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Speaker 3: and then a few of us friends came in and

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Speaker 3: ultimately hugged him goodbye.

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Speaker 1: I had to take some action, and it had to

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Speaker 1: be like a crazy step, and that is to start

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Speaker 1: testing one of these drugs that I was studying in

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Speaker 1: the lab on myself.

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Speaker 4: How terrifying would it be to fight an unknown enemy,

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Speaker 4: one you didn't recognize and didn't see coming. What if

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Speaker 4: that enemy was coming from within a disease even doctors

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Speaker 4: couldn't identify. Nearly half of all Americans suffer from some

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Speaker 4: chronic illness, and many struggle for an accurate diagnosis. These

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Speaker 4: are their stories. I'm Lauren bred Pacheco, and this is symptomatic.

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Speaker 4: David Fagenbaum grew up in Raleigh, North Carolina.

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Speaker 1: And I've got two older sisters, seven and five years

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Speaker 1: older than me, and two amazing parents. They immigrated to

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Speaker 1: the United States from Trinidad and Tobago and the Caribbean,

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Speaker 1: so they were sort of making this new life the

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Speaker 1: American dream in the States.

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Speaker 4: And childhood exposure to a very American sport ignited one

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Speaker 4: of David's biggest dreams. And your dad is an orthoped

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Speaker 4: surgeon and worked for a period of time with North

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Speaker 4: Carolina State wolfback team. That's right, which is where at

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Speaker 4: the age of seven you had this burning desire to

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Speaker 4: play which position in what division?

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Speaker 1: I wanted to play quarterback? And I want to play

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Speaker 1: Division one college football. That was like my first dream

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Speaker 1: and that is all I could think about for about

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Speaker 1: a decade.

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Speaker 4: Your dad working so much, your mom kind of became

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Speaker 4: almost your football trainer.

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Speaker 1: She did. She was my football trainer. She was my

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Speaker 1: mom obviously. She was also one of my closest friends.

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Speaker 1: And there was a hill behind her house and she

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Speaker 1: would stand at the top of this hill and I

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Speaker 1: would throw the football into the hill and then she could,

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Speaker 1: you know, throw it back down. She just wanted to

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Speaker 1: help me in any way that she could, even if

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Speaker 1: it was just you know, rolling footballs down a hill.

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Speaker 4: At an early age. David showed his ability for extreme

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Speaker 4: dedication and focus becoming a star high school quarterback. But

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Speaker 4: that's just one of the reasons he caught the attention

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Speaker 4: of Caitlin, his future wife.

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Speaker 2: He was the president of student council and we had

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Speaker 2: morning meeting every morning. He got up there with his

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Speaker 2: best friend and nothing to do.

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Speaker 5: With school at all.

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Speaker 2: They started rapping eminem songs. The whole student body was

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Speaker 2: just like, what is happening?

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Speaker 5: I even said that.

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Speaker 2: I'm like, I was very confused by him, but I

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Speaker 2: was also like, Wow, he's really attractive.

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Speaker 4: Attractive and driven. You ended up playing quarterback for Georgetown.

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Speaker 6: That's right.

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Speaker 1: Listeners may not know Georgetown has a football team, but

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Speaker 1: we do and we are Division one.

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Speaker 6: Yes.

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Speaker 1: For me, it was the ultimate dream that I Yeah,

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Speaker 1: I'd been thinking about for over ten years.

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Speaker 4: It's bittersweet too, because I know that your mom was

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Speaker 4: diagnosed your freshman year.

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Speaker 6: That's right.

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Speaker 1: Actually, just two weeks after she dropped me off to Georgetown,

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Speaker 1: and I got this phone call for my dad. When

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Speaker 1: he called, I started telling you all about this football

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Speaker 1: practice we had and all these touchdowns and all this stuff,

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Speaker 1: and he was just silent, and then he told me,

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Speaker 1: he said, David, your mom has brain cancer. And gosh,

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Speaker 1: I was like, what, you know, that can't be mom,

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Speaker 1: Like she's she's the most amazing person to everyone, Like

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Speaker 1: it's not faired, it's not right, and so yeah, that

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Speaker 1: sort of changed everything in my life. It just everything changed.

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Speaker 4: Your family did exactly what in an ideal world any

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Speaker 4: family would be able to do. You were really there

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Speaker 4: and you were so present for her. Did it shape

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Speaker 4: your desire to become a doctor?

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Speaker 1: It completely shaved my desire to become a doctor. I mean,

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Speaker 1: the moment that I heard my mom had cancer, and

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Speaker 1: of course the moment that I saw her dealing with

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Speaker 1: her cancer, I just said, this is what I have

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Speaker 1: to spend the rest of my life life doing. And

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Speaker 1: by this, it's taking care of people with horrible diseases,

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Speaker 1: and it's searching for treatments so that people don't suffer

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Speaker 1: like I witnessed my mom suffering.

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Speaker 4: You know, I can't imagine how painful, Because you were

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Speaker 4: nineteen when she passed.

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Speaker 6: I could go on all day about her. She was

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Speaker 6: such a force.

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Speaker 1: She battled brain cancer for fifteen months, just so valiantly,

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Speaker 1: and everything about it you know, I share about the

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Speaker 1: humor that she brought into it. You know, the very

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Speaker 1: first brain surger she had. You know, we were devastated

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Speaker 1: going to that surgery. You know, what's mom going to

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Speaker 1: be like coming out of this? Is she gonna be

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Speaker 1: the same person. So I'll go back to see her,

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Speaker 1: and I remember that they pulled this curtain back and

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Speaker 1: she had this wrap around her head and then she

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Speaker 1: had this tube coming out of the incision and it

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Speaker 1: had sort of a bull at the end.

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Speaker 6: It was actually collecting the fluid.

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Speaker 1: She looked at us and she pointed to her head

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Speaker 1: and she said, shaquida banana lady, and we just like

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Speaker 1: burst into laughter. It was we needed. But my mom's

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Speaker 1: passing it impaled me and then it set me on fire.

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Speaker 4: David's focus now set on medicine. He graduated from Georgetown

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Speaker 4: and was attending the University of Pennsylvania for his medical degree,

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Speaker 4: and although no longer leading a football team, his drive

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Speaker 4: for physical fitness continued.

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Speaker 1: I continued to exercise a lot, and that was just

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Speaker 1: an out with it I loved. And so as a result,

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Speaker 1: I became like really.

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Speaker 4: Fit, and you had a nickname because of it.

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Speaker 1: Yes, I was called the Beast because I was in

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Speaker 1: really good shape. I want a bench pressing contest. In fact,

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Speaker 1: I set the Virginia state record for bench pressing, which

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Speaker 1: if you were to look at me now, you'd be like,

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Speaker 1: you sure about that, because I definitely am not going

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Speaker 1: to set any bench pressing records these days.

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Speaker 3: He was really one of the healthiest guys I'd ever met.

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Speaker 3: We'd go to the cafeteria and he'd get a piece

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Speaker 3: of chicken and pick the fat off the chicken, even

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Speaker 3: because he was soicular about what was going into his body.

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Speaker 4: That's Grant Mitchell, David's longtime friend, colleague and college roommate.

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Speaker 3: So in medical school you do rotations in different hospitals,

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Speaker 3: and we got posted out for our Obigian rotation in Bethlehem, Pennsylvania,

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Speaker 3: outside of Philadelphia, and we were staying in some dorms

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Speaker 3: there and there was no gym, and so that was

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Speaker 3: not going to stop David from working out. And so

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Speaker 3: we found a tree outside of the dorm there that

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Speaker 3: had a nice branch.

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Speaker 1: The tree branch, he just looked too perfect. It was horizontal,

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Speaker 1: it was perfect, so.

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Speaker 3: We could hang from and do pull ups from.

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Speaker 1: And so yeah, every time we walked past this tree.

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Speaker 1: We had to do pulps before we went to treat patients,

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Speaker 1: So yeah, we had to get pull ups in every morning.

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Speaker 4: And in a weird way, that tree branch ended up

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Speaker 4: being an indicator that you were getting sick.

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Speaker 1: You're right, because as the weeks went on, I stopped

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Speaker 1: wanting to do the pull ups. I didn't have the

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Speaker 1: energy to do the pulps. I actually hadn't thought about

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Speaker 1: that until you mentioned that. Now, yeah, I couldn't do them.

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Speaker 1: I was just dragging.

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Speaker 4: At this point in his third year of medical school,

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Speaker 4: David's mental focus was on his residency and passing exams.

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Speaker 4: But suddenly I'm quite out of character. David was having

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Speaker 4: trouble keeping up physically, and.

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Speaker 1: Then the fatigue became, this fatigue that I had never

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Speaker 1: experienced before. It was like this insatiable fatigue. Basically, like

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Speaker 1: no matter how much I slept, I just was exhausted.

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Speaker 6: I couldn't get out of bed.

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Speaker 1: I noticed lumps and bumps in my neck and flewid

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Speaker 1: around my ankles, and I didn't want to go there mentally,

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Speaker 1: but I knew that if a patient walked into my office.

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Speaker 1: I was a third year medicinistation walked into my room

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Speaker 1: and I'm the doctor looking at them, I would have

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Speaker 1: been very concerned, and I would have specifically said, I'm

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Speaker 1: very worried that you have an aggressive lymphoma, and in

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Speaker 1: such an aggressive lymphoma that you know you might have

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Speaker 1: a few weeks to live of it was moving so rapidly,

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Speaker 1: but I was like trying to just block that out

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Speaker 1: of my brain while at the same time I knew

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Speaker 1: something really bad was happening.

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Speaker 6: I even told.

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Speaker 3: Grant one day he walked into the living room of

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Speaker 3: our apartment and he said, something.

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Speaker 6: Is just wrong.

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Speaker 3: I think I'm gonna die. And David, what, You're not

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Speaker 3: going to die? Like, what's gotten into you?

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Speaker 4: How did you process that? Maybe just the stress of

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Speaker 4: med school getting to him.

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Speaker 3: Yeah, I just thought that, you know, he was focused

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Speaker 3: on health, and I didn't think much of it, just

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Speaker 3: told him to, you know, relax, it's okay. A lot

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Speaker 3: of medical students go through this when they are in

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Speaker 3: medical school and they're learning thousands of different ailments that

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Speaker 3: can occur in the human body, and you start sort

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Speaker 3: of thinking about what's going on inside of you and

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Speaker 3: even get a little sense of paranoia. And overdiagnosis. It's

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Speaker 3: kind of a running joke within medical school. Everyone's sort

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Speaker 3: of diagnosing themselves and all the different things that could

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Speaker 3: be happening. And so I just thought it.

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Speaker 4: Was that, in addition to the exhaustion and swelling, David

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Speaker 4: was noticing rashes and redness popping up all over his body.

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Speaker 4: It was clear that whatever was going on it needed

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Speaker 4: immediate attention, but David, being hyper focused, was determined to

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Speaker 4: make it through his OBGYN exam before turning his attention

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Speaker 4: towards himself.

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Speaker 1: I remember, while I'm taking the exam, just like full

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Speaker 1: body sweating. I'm like shivering, I like can't keep my

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Speaker 1: eyes open. But I went from taking the exam and

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Speaker 1: I went down the hall and I just I went

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Speaker 1: straight to the er and they took me back almost immediately.

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Speaker 1: I just was I was so ill, and they did

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Speaker 1: blood work, and I'll never forget my doctor walking into

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Speaker 1: the room and saying, David, your liver, your kidneys, your

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Speaker 1: bone marrow, your heart, and your lungs are shutting down.

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Speaker 1: We have to hospitalize you right away. And I'm like

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Speaker 1: sitting I'm like, but I was just treating patients down

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Speaker 1: the hall like a couple days ago.

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Speaker 2: We weren't taking a break at this point, and I

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Speaker 2: remember being on Facebook and seeing a lot of people

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Speaker 2: writing on his page and praying for you.

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Speaker 5: I'm thinking about you. So I was wondering what was

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Speaker 5: going on.

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Speaker 1: I hope that it was maybe some virus, because viruses

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Speaker 1: come and go. You might get really sick, but it'll

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Speaker 1: be gone at some point. We hoped it was a virus.

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Speaker 1: Didn't turn out to be a virus. We then thought,

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Speaker 1: maybe it's not an immune disease, but you know, none

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Speaker 1: of that immune disease tests were coming back, and then

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Speaker 1: that sort of left us with, like, what's the other

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Speaker 1: thing that could be caused in this sort of the big, bad,

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Speaker 1: scary thing, and that was lymphoma. But the tests we

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Speaker 1: were doing weren't giving us an answer. And that was

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Speaker 1: actually one of the last really vivid memories I have

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Speaker 1: from what then turned into hospitalization, where I just became

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Speaker 1: more and more confused and less and less aware of

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Speaker 1: what was going on.

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Speaker 4: David and his family found themselves in an all too

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Speaker 4: familiar and painful situation, gathered around a hospital bed, only

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Speaker 4: this time David as the patient. Doctors performed a bone

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Speaker 4: marrow biopsy, pet scans, MRIs a liver biopsy, among other tests,

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Speaker 4: none of which provided clarity around the cause of these symptoms.

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Speaker 4: David was given high dose corticosteroids, a common practice in

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Speaker 4: the ICU when there is no clear path to treatment,

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Speaker 4: and as the days and weeks progressed, David's illness was

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Speaker 4: impossible to ignore.

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Speaker 1: The physical morph was pretty incredible, and sometimes you have

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Speaker 1: to see the pictures to really understand, but I'll try

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Speaker 1: to describe what happened to me. So, because my liver

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Speaker 1: and my kidneys stopped working, what happens is you start

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Speaker 1: getting fluid all over your body. So I gained what

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Speaker 1: we estimate to be close to one hundred pounds. Now

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Speaker 1: imagine at the same time, you're not eating because you're

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Speaker 1: so sick and you can't keep down any food, and

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Speaker 1: your immune system is literally ravaging all your right organs.

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Speaker 1: So as a result, you lose all of the muscle

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Speaker 1: mass and any lean mass that you have. So you're

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Speaker 1: left with a body that has one hundred pounds of fluid,

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Speaker 1: has lost fifty to sixty pounds of muscle. You're just

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Speaker 1: bone and fluid everywhere. You're just like a swollen skeleton. Basically,

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Speaker 1: that's what I looked like.

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Speaker 3: The pictures that we have of him in the hospital

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Speaker 3: are not even close to how bad it was. And

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Speaker 3: the reason for that was because David didn't want any pictures.

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Speaker 3: That's not how he wanted to be remembered. David thought

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Speaker 3: he was dying.

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Speaker 4: David was airlifted back to his hometown to the hospital

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Speaker 4: his father worked out of. He spent seven more weeks

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Speaker 4: there until he improved just enough to be discharged, only

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Speaker 4: to find himself right back where he was one month later.

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Speaker 4: After months testing and hospitalization, David had a lymph node biopsy,

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Speaker 4: which returned some surprising results.

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Speaker 1: I wasn't talking, I wasn't doing anything. I was just

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Speaker 1: laying there. So imagine there's eleven weeks of like my

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Speaker 1: dad and my two sisters just being there for me

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Speaker 1: through everything, helping me to breathe. I didn't want to breathe, like,

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Speaker 1: just fighting for my life. And the first moment where

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Speaker 1: like the three of them are not in the room,

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Speaker 1: it's like the moment when the sturse comes in. So

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Speaker 1: she's like, you know, I got the news. I just figured,

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Speaker 1: you know, i'd deliver it to you. And she's like

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Speaker 1: good news. It's not lymphoma. And then she looks at

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Speaker 1: the piece of paper because she like doesn't know what

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Speaker 1: the word is, like she's never seen it. She's like, uh,

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Speaker 1: you have something called castlemans.

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Speaker 6: I'm like, well, is that good? Is that bad? She's like, well,

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Speaker 6: it's not lymphoma. Like it's great, I guess.

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Speaker 1: And so here I am by myself and I'm like great,

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Speaker 1: it's like Castleman's like, I don't I'm a med student,

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Speaker 1: but I don't remember learning about it.

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Speaker 6: I think maybe I heard it once in my life.

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Speaker 3: So good news. We know what it is. So what

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Speaker 3: do you do when you first hear about something? I

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Speaker 3: learn more?

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Speaker 6: You google it.

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Speaker 3: Then you see the Wikipedia page.

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Speaker 1: The way that it was described was that it was

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Speaker 1: just uniformly fatal and everyone died within a couple of

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Speaker 1: years of diagnosis. And I was just devastated to read

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Speaker 1: about this disease.

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Speaker 4: Castleman disease is a rare condition that causes the immune

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Speaker 4: system to go into hyperdrive, attacking organs and bodily pathways.

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Speaker 4: In the United States, they're only about five thousand new

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Speaker 4: cases annually, with each prognosis varying based on the subtype.

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Speaker 4: David was unfortunately diagnosed with one of the most aggressive variations.

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Speaker 4: Desperate to quickly find a treatment that worked, David was

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Speaker 4: transferred to the hematology and oncology ward at Duke in Durham,

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Speaker 4: North Carolina.

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Speaker 1: When I was at Duke for my second hospitalization, I

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Speaker 1: was so sick that my doctors encouraged my family to

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Speaker 1: say goodbye to me.

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Speaker 3: It was shocking. You know, we were still very young.

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Speaker 3: It was the time in our lives where we were

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Speaker 3: energized to you know, we were healthy, we were young,

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Speaker 3: we were ready to go conquer the world. And to

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Speaker 3: see the person among us that seems the strongest transformed

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Speaker 3: so abruptly was startling. It was hard to process. I

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Speaker 3: didn't think it was even real, like, surely he'll just

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Speaker 3: be fine soon. And that changed dramatically for us when

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Speaker 3: they ultimately told him that they didn't know what else

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Speaker 3: they could do. I'll never forget the moment when a

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Speaker 3: priest came.

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Speaker 1: In to read me my last rites. That was in

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Speaker 1: November of twenty ten. I was twenty five years old.

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Speaker 3: Then a few of his friends came in and ultimately

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Speaker 3: hugged him goodbye. And I think everyone tried to keep

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Speaker 3: a positive outlook, you know you're going to be okay.

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Speaker 3: And I remember I couldn't really keep it together. David

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Speaker 3: and I talked about that a lot. He says that

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Speaker 3: he almost knew how bad it was when I came

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Speaker 3: in the room and you saw my face because I

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Speaker 3: couldn't hide help. Horrifying it was to see him in

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Speaker 3: that state.

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Speaker 1: Yeah, And when you're administer your last rods, when you

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Speaker 1: say goodbye to your family, you don't do it like

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Speaker 1: thinking that I'm going to get another shot at this.

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Speaker 6: It's like this is it.

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Speaker 4: David, who had been the physical ideal of athleticism and

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Speaker 4: health just months before, was now unrecognizable, seemingly at the

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Speaker 4: end of his fight with Castleman, Caitlyn traveled to visit

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Speaker 4: him in the hospital. Despite no longer dating at the time,

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Speaker 4: there was still a connection between them.

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Speaker 2: If this was going to be the last time, I

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Speaker 2: wanted to talk to him, just to hold his hand,

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Speaker 2: to see how he was doing.

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Speaker 1: I can barely form sentences. I don't know what the

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Speaker 1: heck's going on. I'm confused, and this is going to

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Speaker 1: be the last time Caitlyn's going to see me. I'm

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Speaker 1: not going able to tell her the things that I

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Speaker 1: want to tell her. So she came to visit me

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Speaker 1: multiple times, and each time I had somehow communicated to

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Speaker 1: my sisters that I didn't want her to come.

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Speaker 6: In the room.

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Speaker 2: I thought that maybe she didn't know that I was

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Speaker 2: trying to see him, because you know, I had his

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Speaker 2: phone number, and I would reach out and I just

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Speaker 2: you know, wouldn't hear back from him.

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Speaker 5: So then I would reach.

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Speaker 2: Out to his sisters and just see And I did

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Speaker 2: think that they were maybe they were mad at me

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Speaker 2: because I broke up with him, and you know, I

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Speaker 2: thought maybe there was like something like petty, but like

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Speaker 2: there wasn't.

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Speaker 5: They were just protecting their brother.

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Speaker 1: I regret that, because who cares if I didn't look

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Speaker 1: like my former self? And who cares, you know, if

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Speaker 1: I didn't say the right words.

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Speaker 4: David had now come to the brink of death twice

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Speaker 4: in a span of three months.

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Speaker 1: Turned out that there were no FD approved drugs, but

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Speaker 1: there were a couple of drugs that have been tried,

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Speaker 1: particularly chemotherapies, and one of them worked for a little

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Speaker 1: bit of time, and then I started to relapse while.

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Speaker 4: The chemo suppressed David's immune system stopped been Castleman from

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Speaker 4: attacking his body. It also took a heavy toll on

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Speaker 4: David's ability to fight, but there was one last hope

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Speaker 4: waiting for him in Arkansas.

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Speaker 1: I learned that there was the world's expert was in

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Speaker 1: Little Rock, Arkansas. So I traveled out to the Mecca

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Speaker 1: Castle and Disease. I've been given the plan like I'm

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Speaker 1: going to be on an experimental drug. It was going

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Speaker 1: into going a clinical trial and everyone and it was

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Speaker 1: working for a bunch of people, and I was like,

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Speaker 1: oh my gosh, Like, you know, we'd been praying for

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Speaker 1: this for my mom and we never got it. But

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Speaker 1: now here we were for me, like maybe we got this.

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Speaker 1: This is like the drug we've been waiting for. And

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Speaker 1: you know, just before I was supposed to fly back

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Speaker 1: to North Carolina, which is where my family lives, to recover,

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Speaker 1: the test results came back from my Little Rock visit

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Speaker 1: that my labs were all horrible and my organs were

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Speaker 1: all shutting down again. So we actually were we were

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Speaker 1: actually in the airport in Little Rock getting ready to leave,

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Speaker 1: and then we just went back to the hospital. That

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Speaker 1: was the beginning of about a seven week long hospitalization

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Speaker 1: and where I.

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Speaker 6: Sort of went off the cliff again.

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Speaker 4: My gosh, you you had to go through this cycle

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Speaker 4: so many times. How did you find the strength in

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Speaker 4: those moments to just keep going?

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Speaker 6: Yeah?

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Speaker 1: I think for me, there were a few things that

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Speaker 1: helped me to keep fighting. I mean, for one, I

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Speaker 1: felt like I had this unfinished business to do. Like

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Speaker 1: I promised my mom, I was going to find drugs

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Speaker 1: for people suffering from diseases.

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Speaker 6: And I'm a third year med student.

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Speaker 1: I'm sort of like finally somewhat trained to start helping people,

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Speaker 1: and then now I'm going to go out and never

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Speaker 1: be able to do the thing that I promised my mom.

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Speaker 1: Another one was just the amazing support I got from

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Speaker 1: my family. My sisters never left my side, my dad

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Speaker 1: never left my side. I just wanted to be with

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Speaker 1: them longer, Like, I just wanted more time with them.

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Speaker 4: Having traveled nearly one thousand miles to the world's foremost

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Speaker 4: castleman expert David recognized the continued cycle of chemotherapy with

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Speaker 4: catch up to him. That's when things changed. He was

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Speaker 4: no longer content to merely be the patient.

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Speaker 1: My doctor explains to me that, like we've tried everything,

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Speaker 1: there's nothing else that we can do. And I just

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Speaker 1: hid rock bottom. I thought, I'm going to get to

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Speaker 1: work and tried to find a treatment for this disease

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Speaker 1: to save my life.

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Speaker 4: We'll be right back with Symptomatic, a Medical Mystery Podcast.

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Speaker 4: Now back to Symptomatic, a Medical Mystery Podcast. David Fagenbaum,

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Speaker 4: once a college quarterback and powerlifting champion, was coming out

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Speaker 4: of his third hospitalization from Castleman disease. After the only

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Speaker 4: known drug to help treat Castleman failed, David went through

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Speaker 4: seven weeks of multi agent chemotherapy, daily blood transfusions and dialysis.

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Speaker 4: David and his family returned home to North Carolina, fearful

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Speaker 4: of when the next relapse would begin, but this time

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Speaker 4: he had a little extra support.

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Speaker 1: So this stage, this is when I had lost my

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Speaker 1: hair from chemotherapy. I still had about fifty pounds of

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Speaker 1: fluid all over my body. My belly, you know, was

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Speaker 1: indistinguishable from someone who would be eight months pregnant.

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Speaker 6: And Caitlin she was at my door.

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Speaker 2: I didn't know how bad it was when I was there,

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Speaker 2: because no one gave me the details. When I was

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Speaker 2: reaching out to his sisters, no one said, this is it.

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Speaker 2: He's being read his last right. I didn't find these

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Speaker 2: things out until later, which almost helped.

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Speaker 5: It kind of helped me cope.

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Speaker 1: And she said to me, I want us to get

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Speaker 1: back together. I'd been hoping for that for so long,

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Speaker 1: but here I am with like this horrible, deadly disease.

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Speaker 1: I don't think any human could have more baggage than

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Speaker 1: I had at that moment, being like, or are you sure?

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Speaker 1: Like you know, I got a what going on? You know,

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Speaker 1: got this horrible, deadly disease, like are you sure? And

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Speaker 1: she looked at me like she was offended that I

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Speaker 1: was asking her that, like of course, like are you

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Speaker 1: kidding me?

443
00:23:14,280 --> 00:23:15,800
Speaker 6: Like, of course, I want us to get back together.

444
00:23:15,840 --> 00:23:18,200
Speaker 1: And it was like that's exactly what I needed.

445
00:23:18,240 --> 00:23:20,480
Speaker 5: In that moment, I knew it was him.

446
00:23:20,920 --> 00:23:23,439
Speaker 2: It was still him in there, so it just didn't

447
00:23:23,440 --> 00:23:24,800
Speaker 2: matter the physical appearance.

448
00:23:25,359 --> 00:23:27,639
Speaker 4: Is there a moment that you look back where you

449
00:23:27,800 --> 00:23:30,919
Speaker 4: worried because it was just too much for David?

450
00:23:31,600 --> 00:23:33,760
Speaker 2: I mean, it was definitely when his doctors said that

451
00:23:33,840 --> 00:23:36,119
Speaker 2: they've tried everything and there was nothing else that they

452
00:23:36,160 --> 00:23:36,560
Speaker 2: could do.

453
00:23:37,680 --> 00:23:39,159
Speaker 5: That's when Dave was like, I got to take this

454
00:23:39,200 --> 00:23:41,400
Speaker 5: into my hands. What can I do for myself?

455
00:23:42,280 --> 00:23:44,960
Speaker 1: If I'm gonna hope for a drug to save my life,

456
00:23:45,000 --> 00:23:47,919
Speaker 1: Like shouldn't I be acting or like doing something to

457
00:23:47,960 --> 00:23:50,360
Speaker 1: get there? So for me, it was okay, I'm gonna

458
00:23:50,359 --> 00:23:52,399
Speaker 1: get involved in research. I'm going to build an organization

459
00:23:52,440 --> 00:23:55,680
Speaker 1: called the Castle Clibor Network. I'm gonna start conducting laboratory

460
00:23:55,720 --> 00:23:58,960
Speaker 1: research myself, and I'm gonna get to work.

461
00:23:59,000 --> 00:24:01,439
Speaker 2: In day fashion that how he copes, he's going to

462
00:24:01,440 --> 00:24:04,480
Speaker 2: fix it. So we were his doers, and he was

463
00:24:04,520 --> 00:24:08,120
Speaker 2: the fixer while he's in the hospital bed having ice

464
00:24:08,119 --> 00:24:09,840
Speaker 2: packs under his arms because he is fevers.

465
00:24:10,680 --> 00:24:14,320
Speaker 3: And for someone who is as focused as Dave, there's

466
00:24:14,359 --> 00:24:16,440
Speaker 3: nothing that will focus you more in this life than

467
00:24:16,680 --> 00:24:19,960
Speaker 3: staring down that clock. You know, we call it a

468
00:24:20,040 --> 00:24:23,080
Speaker 3: dream team, but you know, David was the engine. David

469
00:24:23,200 --> 00:24:27,480
Speaker 3: was the force behind it all. He was quarterbacking it absolutely.

470
00:24:27,560 --> 00:24:29,000
Speaker 3: He slotted right in in that role.

471
00:24:29,520 --> 00:24:32,600
Speaker 4: David spent the next six months at home regaining his strength,

472
00:24:32,920 --> 00:24:36,800
Speaker 4: and although the experimental drug still tuxamab, that David had

473
00:24:36,840 --> 00:24:40,080
Speaker 4: taken failed to help him recover, he was now using

474
00:24:40,119 --> 00:24:42,720
Speaker 4: it in hopes that it would work as a preventative measure.

475
00:24:43,200 --> 00:24:45,600
Speaker 4: He returned to medical school and got to work on

476
00:24:45,680 --> 00:24:47,480
Speaker 4: finding a cure for castlemen.

477
00:24:47,920 --> 00:24:49,919
Speaker 1: We weren't just going to hope that Santa's elves were

478
00:24:49,920 --> 00:24:52,520
Speaker 1: going to like magically come up with some brilliant idea

479
00:24:52,640 --> 00:24:55,120
Speaker 1: and do the research. We simply said, what should we do?

480
00:24:55,520 --> 00:24:57,240
Speaker 1: We asked everyone that, and then we simply found the

481
00:24:57,240 --> 00:24:58,760
Speaker 1: best people in the world to do the things that

482
00:24:58,800 --> 00:25:01,720
Speaker 1: were prioritized to us. So that was one major shift,

483
00:25:01,760 --> 00:25:05,200
Speaker 1: and the other one was again a very simple realization,

484
00:25:05,320 --> 00:25:08,040
Speaker 1: and that was it costs between one and two billion

485
00:25:08,080 --> 00:25:10,560
Speaker 1: dollars to create a new drug from scratch, and that

486
00:25:10,640 --> 00:25:13,560
Speaker 1: can take ten to fifteen years for one drug. So

487
00:25:13,600 --> 00:25:15,199
Speaker 1: I didn't have a billion dollars. I didn't have ten

488
00:25:15,240 --> 00:25:17,520
Speaker 1: to fifteen years. So I say, okay, well, how else

489
00:25:17,560 --> 00:25:21,080
Speaker 1: could I potentially be treated? Well, all those chemotherapies that

490
00:25:21,119 --> 00:25:23,280
Speaker 1: I got that saved my life, they weren't made for

491
00:25:23,320 --> 00:25:25,800
Speaker 1: castleum and disease. What if there's some other drug out

492
00:25:25,800 --> 00:25:27,480
Speaker 1: there that wasn't made for Castle disease. I mean, the

493
00:25:27,520 --> 00:25:29,920
Speaker 1: chemo doesn't work long term, but it's saved my life

494
00:25:29,920 --> 00:25:33,280
Speaker 1: a few times. I appreciate the chemo. Is there something else?

495
00:25:33,680 --> 00:25:36,920
Speaker 1: So that became my mission. Can I figure out what's

496
00:25:36,960 --> 00:25:39,960
Speaker 1: going wrong in my body? And then can I figure

497
00:25:39,960 --> 00:25:42,080
Speaker 1: out is there a drug that's already FDA prooved for

498
00:25:42,160 --> 00:25:44,199
Speaker 1: some other disease that might actually be able to be

499
00:25:44,280 --> 00:25:46,959
Speaker 1: useful for my disease that I thought could save my life.

500
00:25:47,560 --> 00:25:50,320
Speaker 4: David recruited experts from all over the world to join

501
00:25:50,359 --> 00:25:55,640
Speaker 4: the Castleum Disease Collaborative Network or CDCN, and diligently continued

502
00:25:55,640 --> 00:25:59,560
Speaker 4: his lab research to understand what was happening in his body.

503
00:26:00,000 --> 00:26:04,000
Speaker 4: Despite all the effort toward finding a cure, David experienced

504
00:26:04,000 --> 00:26:06,600
Speaker 4: a four to th relapse in April of twenty twelve.

505
00:26:07,000 --> 00:26:11,320
Speaker 4: After his longest stretch of stability. The now standard playbook

506
00:26:11,359 --> 00:26:14,320
Speaker 4: for flare up, David gets a massive round of chemo,

507
00:26:14,920 --> 00:26:17,720
Speaker 4: all while trying to maintain some sort of normalcy in

508
00:26:17,760 --> 00:26:18,280
Speaker 4: his life.

509
00:26:19,119 --> 00:26:21,960
Speaker 1: So at this stage, Caitlin and I are engaged, were

510
00:26:22,000 --> 00:26:24,600
Speaker 1: engaged to get married in May twenty fourth, twenty fourteen,

511
00:26:25,200 --> 00:26:26,560
Speaker 1: and I know that I'm not going to make it

512
00:26:26,600 --> 00:26:29,520
Speaker 1: there at the current rate. I Actually my last relapse

513
00:26:29,720 --> 00:26:32,520
Speaker 1: was while I was getting weekly chemotherapy for the first

514
00:26:32,560 --> 00:26:35,000
Speaker 1: time ever. We were like, let's try it prementive chemo,

515
00:26:35,200 --> 00:26:37,520
Speaker 1: which is not a thing, but let's try it like

516
00:26:37,600 --> 00:26:39,560
Speaker 1: in advance and see if that'll stop it. And it

517
00:26:39,680 --> 00:26:42,320
Speaker 1: still roared its head, it's still exploded. Still put me

518
00:26:42,320 --> 00:26:44,320
Speaker 1: in nice you for a month. So that didn't work.

519
00:26:44,880 --> 00:26:47,920
Speaker 3: It's impossible to work backwards from there to figure out

520
00:26:48,160 --> 00:26:51,679
Speaker 3: what went wrong that led to it. And it occurred

521
00:26:51,720 --> 00:26:55,359
Speaker 3: to us that instead of taking samples from his blood

522
00:26:55,560 --> 00:26:59,679
Speaker 3: while he was in the throes of these flares, we

523
00:26:59,680 --> 00:27:03,600
Speaker 3: should take those samples before and after, and we should

524
00:27:03,640 --> 00:27:07,480
Speaker 3: do it every few weeks so that we can study

525
00:27:07,920 --> 00:27:13,480
Speaker 3: maybe the progenitor markers of what is initiating this cascade,

526
00:27:14,000 --> 00:27:16,040
Speaker 3: and if we can find out what's going on early

527
00:27:16,200 --> 00:27:19,240
Speaker 3: before it goes full blown, maybe we can stop the

528
00:27:19,280 --> 00:27:20,680
Speaker 3: cascade from ever occurring.

529
00:27:21,960 --> 00:27:25,119
Speaker 1: I've said goodbye to my family five times, and this

530
00:27:25,119 --> 00:27:27,600
Speaker 1: thing's gonna keep coming back. So if I wanted to

531
00:27:27,600 --> 00:27:29,960
Speaker 1: make it to May twenty four to twenty fourteen, I

532
00:27:30,040 --> 00:27:32,040
Speaker 1: had to take some action, and it had to be

533
00:27:32,080 --> 00:27:35,240
Speaker 1: a pretty in hindsight like sort of crazy step, and

534
00:27:35,280 --> 00:27:37,280
Speaker 1: that is to start testing one of these drugs that

535
00:27:37,320 --> 00:27:39,560
Speaker 1: I was studying in the lab on myself.

536
00:27:40,400 --> 00:27:42,960
Speaker 5: And I was like, what are the side effects?

537
00:27:43,320 --> 00:27:43,480
Speaker 2: You know?

538
00:27:44,080 --> 00:27:46,240
Speaker 5: He was like, it could either work or you know,

539
00:27:46,280 --> 00:27:51,080
Speaker 5: it doesn't work. So I just I was very confused.

540
00:27:51,119 --> 00:27:54,199
Speaker 2: I was like, are you sure, like yourself, you're going

541
00:27:54,240 --> 00:27:57,560
Speaker 2: to try this on yourself? And so I was very

542
00:27:57,680 --> 00:27:59,440
Speaker 2: unsure about it. I didn't have a lot of faith,

543
00:28:00,000 --> 00:28:02,359
Speaker 2: but this was going to work. I felt like we

544
00:28:02,400 --> 00:28:04,840
Speaker 2: were just going to be in the same place fifteen

545
00:28:05,040 --> 00:28:05,639
Speaker 2: months later.

546
00:28:06,280 --> 00:28:07,480
Speaker 4: Was that your biggest fear?

547
00:28:08,000 --> 00:28:10,080
Speaker 5: Yeah, that it was just going to be a cycle.

548
00:28:11,640 --> 00:28:14,639
Speaker 4: As David battles Castleman disease for the fifth time, he

549
00:28:14,760 --> 00:28:18,439
Speaker 4: starts to put his research to the test, trying drugs

550
00:28:18,440 --> 00:28:21,600
Speaker 4: that will target the immune system. First on the list,

551
00:28:21,880 --> 00:28:26,200
Speaker 4: David started taking cyclosporin. While he showed no signs of improvement,

552
00:28:26,560 --> 00:28:31,040
Speaker 4: his condition didn't worsen, which seemed positive. He then moved

553
00:28:31,080 --> 00:28:35,160
Speaker 4: on to the second drug, ivig hope. David feel better

554
00:28:35,240 --> 00:28:39,560
Speaker 4: almost immediately. Blood tests were finally heading in the right direction,

555
00:28:40,200 --> 00:28:43,720
Speaker 4: only for Castleman disease to knock David down once again.

556
00:28:43,880 --> 00:28:46,520
Speaker 4: A few weeks later, it was back to the old

557
00:28:46,600 --> 00:28:50,960
Speaker 4: playbook and David had to undergo another massive round of chemo.

558
00:28:52,000 --> 00:28:54,600
Speaker 1: There was some real heartbreak, right. It was like, Caitlin,

559
00:28:54,640 --> 00:28:56,320
Speaker 1: I've been doing this work in the lab. I've been

560
00:28:56,360 --> 00:28:58,720
Speaker 1: experimenting on my own blood samples and been experimenting on

561
00:28:58,800 --> 00:29:01,320
Speaker 1: flinto tissue. That's like the moment where you want to

562
00:29:01,320 --> 00:29:04,000
Speaker 1: try these drugs to see, like while you're getting worse,

563
00:29:04,000 --> 00:29:05,360
Speaker 1: like does it stabilize things?

564
00:29:05,560 --> 00:29:08,200
Speaker 6: And it didn't, and that was heartbreaking.

565
00:29:08,800 --> 00:29:12,200
Speaker 3: And the tricky thing about this disease is that you

566
00:29:12,240 --> 00:29:17,080
Speaker 3: don't necessarily know if it's working or not until you

567
00:29:17,160 --> 00:29:21,400
Speaker 3: don't have a flare. So you have to wait. And

568
00:29:21,440 --> 00:29:25,480
Speaker 3: these flares that happen about every year. So let's say

569
00:29:25,520 --> 00:29:28,040
Speaker 3: a flare occurs and then you realize the drug that

570
00:29:28,080 --> 00:29:31,040
Speaker 3: you're on didn't work, and now you try a new

571
00:29:31,120 --> 00:29:35,880
Speaker 3: drug after the flare subsides, and it doesn't just subside.

572
00:29:35,920 --> 00:29:39,640
Speaker 3: You have to obliterate your immune system with seven agent

573
00:29:39,720 --> 00:29:42,680
Speaker 3: chemo to stop it. And then once you survive that

574
00:29:43,040 --> 00:29:46,960
Speaker 3: onslaught of toxic drugs and you say, okay, now we'll

575
00:29:46,960 --> 00:29:47,680
Speaker 3: try a new drug.

576
00:29:47,840 --> 00:29:49,920
Speaker 1: And I don't know how I survived that fifth one.

577
00:29:50,040 --> 00:29:53,280
Speaker 1: They gave me like humanly impossible doses. I was like

578
00:29:53,520 --> 00:29:56,480
Speaker 1: taking like large animal doses of chemo, but I knew

579
00:29:56,520 --> 00:29:57,760
Speaker 1: that it wasn't gonna work long term.

580
00:29:58,400 --> 00:30:02,520
Speaker 4: I can't imagine watching someone you love suffer the way

581
00:30:02,560 --> 00:30:08,840
Speaker 4: he obviously suffered with all of those relapses, but particularly

582
00:30:08,880 --> 00:30:12,120
Speaker 4: in the case of the chemo, the treatment seemed even

583
00:30:12,200 --> 00:30:18,680
Speaker 4: worse than the disease. How grueling was it to watch

584
00:30:18,960 --> 00:30:22,160
Speaker 4: him go through a cycle of relapses.

585
00:30:23,440 --> 00:30:28,320
Speaker 2: It was just like such a letdown when you would think, like,

586
00:30:28,720 --> 00:30:31,080
Speaker 2: he just did the chemo and now he's he's been

587
00:30:31,160 --> 00:30:33,720
Speaker 2: better for sixteen to eighteen months, and then all of

588
00:30:33,760 --> 00:30:36,560
Speaker 2: a sudden, you know, it happens again.

589
00:30:36,600 --> 00:30:38,560
Speaker 5: It was just so frustrating, like.

590
00:30:38,560 --> 00:30:41,480
Speaker 2: How many times can a body get this much chemotherapy?

591
00:30:42,520 --> 00:30:46,080
Speaker 4: After recovering from his fifth barrage of chemo, David looks

592
00:30:46,120 --> 00:30:49,080
Speaker 4: at the last option on the table from his research

593
00:30:49,720 --> 00:30:53,640
Speaker 4: getting to know Castleman disease. Through their experimentation, Grant and

594
00:30:53,720 --> 00:30:58,160
Speaker 4: David learned that his subtype causes the bodily communication line

595
00:30:58,200 --> 00:31:02,600
Speaker 4: called intour to go in to overdrive. Mtour tells the

596
00:31:02,640 --> 00:31:06,719
Speaker 4: immune system to mobilize and activates tea cells to go

597
00:31:06,760 --> 00:31:11,120
Speaker 4: to war attacking foreign cells or in David's case, his

598
00:31:11,160 --> 00:31:12,400
Speaker 4: own I.

599
00:31:12,320 --> 00:31:14,520
Speaker 6: Thought that, hey, why don't use an mTOR inhibitor.

600
00:31:14,520 --> 00:31:16,000
Speaker 1: I mean again, it was very simple, as there was

601
00:31:16,040 --> 00:31:18,360
Speaker 1: too much This communication line looked like it was turned

602
00:31:18,400 --> 00:31:19,000
Speaker 1: into overdrive.

603
00:31:19,200 --> 00:31:21,760
Speaker 6: Here's a drug that turns it off. Let's try it.

604
00:31:22,400 --> 00:31:25,080
Speaker 3: We were at a point where there was a no

605
00:31:25,200 --> 00:31:30,040
Speaker 3: regret move to try something else, and that was something

606
00:31:30,080 --> 00:31:35,040
Speaker 3: called serri limis. It is isolated from a fungus found

607
00:31:35,080 --> 00:31:39,360
Speaker 3: in the soil of Easter Island. It hits the mtour

608
00:31:39,520 --> 00:31:45,280
Speaker 3: pathway and reduces T cell activation. Maybe it could prevent

609
00:31:45,360 --> 00:31:48,120
Speaker 3: the cascade that ultimately led to cytokind storm that would

610
00:31:48,120 --> 00:31:48,960
Speaker 3: attack his body.

611
00:31:49,400 --> 00:31:53,680
Speaker 1: This was the third and frankly probably the last possible attempt.

612
00:31:54,600 --> 00:31:57,360
Speaker 1: There weren't many more drugs on our list of possibilities,

613
00:31:57,560 --> 00:32:00,400
Speaker 1: and there wasn't much more time, so it was the

614
00:32:00,480 --> 00:32:02,880
Speaker 1: last ditch effort after like many last.

615
00:32:02,720 --> 00:32:08,560
Speaker 4: Ditch efforts, Now taking the only medication left on the table,

616
00:32:08,880 --> 00:32:12,040
Speaker 4: David and Caitlin did have something worth looking forward to

617
00:32:12,560 --> 00:32:16,160
Speaker 4: their wedding. But what was weighing on David's mind the

618
00:32:16,440 --> 00:32:19,880
Speaker 4: issue of the hair on his head, or lack thereof.

619
00:32:20,760 --> 00:32:23,120
Speaker 3: I remember we were in the hotel room getting ready

620
00:32:23,200 --> 00:32:26,440
Speaker 3: for the wedding and he had just started to grow

621
00:32:26,520 --> 00:32:30,240
Speaker 3: his hair back. He was so protective of every hair

622
00:32:30,320 --> 00:32:34,760
Speaker 3: on his head. You know, it didn't look good. It

623
00:32:34,800 --> 00:32:38,400
Speaker 3: was just kind of like thinly there and a little

624
00:32:38,400 --> 00:32:41,040
Speaker 3: bit on his neck, and like I was, like David,

625
00:32:41,120 --> 00:32:44,720
Speaker 3: let me, just shave these hairs on the back of

626
00:32:44,800 --> 00:32:47,400
Speaker 3: your neck so you can look nice and trim for

627
00:32:47,520 --> 00:32:48,240
Speaker 3: your wedding day.

628
00:32:48,520 --> 00:32:51,160
Speaker 1: And I told him absolutely not, because my hair had

629
00:32:51,200 --> 00:32:52,920
Speaker 1: just come in, Like I got like my hair started

630
00:32:52,920 --> 00:32:55,280
Speaker 1: to grow like two weeks before my wedding day, so

631
00:32:55,360 --> 00:32:56,800
Speaker 1: it kind of looked like I just had this like

632
00:32:57,360 --> 00:33:00,280
Speaker 1: very short buzz cut or something. But yeah, I had

633
00:33:00,880 --> 00:33:03,440
Speaker 1: your neck hair had grown back, and Grant's like, let

634
00:33:03,480 --> 00:33:03,960
Speaker 1: me clean you up.

635
00:33:04,000 --> 00:33:04,600
Speaker 6: It's your wedding now.

636
00:33:04,600 --> 00:33:08,400
Speaker 1: I'm like, no, like every every follicle matters, like you're not.

637
00:33:08,440 --> 00:33:11,280
Speaker 1: There's every hair that is on my head, it is

638
00:33:11,320 --> 00:33:12,000
Speaker 1: staying there.

639
00:33:12,720 --> 00:33:13,360
Speaker 5: I love that.

640
00:33:14,200 --> 00:33:18,880
Speaker 3: But it was just awesome because, like I said, after

641
00:33:18,920 --> 00:33:21,240
Speaker 3: I hugged him goodbye that day, I didn't think I'd

642
00:33:21,240 --> 00:33:22,240
Speaker 3: ever seen him again.

643
00:33:22,600 --> 00:33:28,560
Speaker 4: Having already been through until death do us part? What

644
00:33:28,680 --> 00:33:32,080
Speaker 4: did it mean to exchange vows? What did your wedding

645
00:33:32,560 --> 00:33:35,440
Speaker 4: mean to you? On a deeper level.

646
00:33:35,400 --> 00:33:36,800
Speaker 5: It was so powerful.

647
00:33:36,920 --> 00:33:41,560
Speaker 7: It was like those words were so real where I

648
00:33:41,600 --> 00:33:44,800
Speaker 7: feel like people just say those as their vowels, but

649
00:33:46,120 --> 00:33:49,480
Speaker 7: really we meant them so much to each other.

650
00:33:49,840 --> 00:33:52,520
Speaker 5: We had already been through it. Yeah, it just meant

651
00:33:52,520 --> 00:33:53,520
Speaker 5: so much to us.

652
00:33:53,920 --> 00:33:56,400
Speaker 4: As David and Caitlin now looked towards the future. They

653
00:33:56,400 --> 00:33:59,600
Speaker 4: couldn't help but be troubled by lingering thoughts of fear.

654
00:34:00,120 --> 00:34:05,000
Speaker 4: Will Castleman disease return, and if so, what other possible

655
00:34:05,040 --> 00:34:06,880
Speaker 4: options are left on the table.

656
00:34:07,960 --> 00:34:09,920
Speaker 3: We didn't know right away if it was working or not.

657
00:34:10,280 --> 00:34:12,600
Speaker 2: We kind of just waited each month and we're like,

658
00:34:13,200 --> 00:34:13,800
Speaker 2: is it coming?

659
00:34:14,239 --> 00:34:17,680
Speaker 3: Is it coming? We had to wait a full year

660
00:34:18,320 --> 00:34:21,600
Speaker 3: to see if he was going to undergo another flare.

661
00:34:22,200 --> 00:34:24,640
Speaker 3: So eight months go by, we're on the edge of

662
00:34:24,640 --> 00:34:28,440
Speaker 3: our seat. Twelve months go by, we're watching and waiting.

663
00:34:29,239 --> 00:34:32,640
Speaker 3: Fourteen months, sixteen, eighteen.

664
00:34:32,480 --> 00:34:34,520
Speaker 5: Nineteen months, twenty months, twenty.

665
00:34:34,200 --> 00:34:36,479
Speaker 3: One months, two years go by, and it.

666
00:34:36,440 --> 00:34:39,600
Speaker 2: Wasn't coming back. We were kind of like, oh, my gosh,

667
00:34:39,680 --> 00:34:40,440
Speaker 2: something's working.

668
00:34:41,320 --> 00:34:44,759
Speaker 3: Months and months after, longer than he'd ever been in

669
00:34:44,840 --> 00:34:49,240
Speaker 3: remission or not in flair. My god, my god, he's okay.

670
00:34:49,840 --> 00:34:51,800
Speaker 3: We think we found a cure.

671
00:34:55,600 --> 00:34:58,560
Speaker 1: This cri linemus. That's the one that worked, and that's

672
00:34:58,600 --> 00:35:01,880
Speaker 1: why I'm here and on this podcast right If it

673
00:35:01,920 --> 00:35:05,160
Speaker 1: didn't work, I'm not here. Ten years ago is when

674
00:35:05,160 --> 00:35:08,920
Speaker 1: I pass and I'm you know, very much a memory

675
00:35:08,960 --> 00:35:11,960
Speaker 1: for Caitlin and my family. But it's because we connected

676
00:35:12,000 --> 00:35:15,239
Speaker 1: on that last one that I'm still here and that

677
00:35:15,239 --> 00:35:17,520
Speaker 1: that now I can continue to pursue this for other people.

678
00:35:22,520 --> 00:35:30,759
Speaker 4: How did this shape your perspective once it went into remission,

679
00:35:30,920 --> 00:35:32,320
Speaker 4: if I may use that word.

680
00:35:32,320 --> 00:35:35,280
Speaker 1: Yeah, absolutely, I do like to use that word. And

681
00:35:35,320 --> 00:35:37,800
Speaker 1: ever since this permission started, I just have this feeling

682
00:35:37,800 --> 00:35:39,560
Speaker 1: of overtime. It's like, okay, like I don't know when

683
00:35:39,560 --> 00:35:41,759
Speaker 1: the disease could come back, and of course there's more

684
00:35:41,800 --> 00:35:44,080
Speaker 1: and more days go by, the more confident I feel that,

685
00:35:44,160 --> 00:35:46,680
Speaker 1: you know, maybe we've really, you know, gotten this disease

686
00:35:46,760 --> 00:35:49,400
Speaker 1: under under full control. But it's just given me this

687
00:35:49,600 --> 00:35:51,919
Speaker 1: urgency where it's like I got to do as many

688
00:35:51,960 --> 00:35:52,719
Speaker 1: things as I can do.

689
00:35:53,480 --> 00:35:57,160
Speaker 2: When we finally got off the hamster wheel, Yeah, it

690
00:35:57,239 --> 00:36:00,920
Speaker 2: was just like I can just like feel even saying

691
00:36:00,960 --> 00:36:03,399
Speaker 2: it to you right now, I can feel like wait,

692
00:36:03,520 --> 00:36:07,000
Speaker 2: just coming off my chest, like in that moment, we

693
00:36:07,000 --> 00:36:09,759
Speaker 2: were so relieved.

694
00:36:11,040 --> 00:36:13,920
Speaker 4: David Fagenbaum was pushed to the brink of death five

695
00:36:14,080 --> 00:36:17,760
Speaker 4: times before finally finding a medicine that sent his Castleman

696
00:36:17,840 --> 00:36:21,680
Speaker 4: disease into remission. David and Caitlin didn't just make it

697
00:36:21,719 --> 00:36:25,400
Speaker 4: to their first wedding anniversary. They're now celebrating their tenth

698
00:36:25,520 --> 00:36:29,200
Speaker 4: and counting, along with the two adorable children they welcomed

699
00:36:29,280 --> 00:36:29,959
Speaker 4: along the way.

700
00:36:30,760 --> 00:36:33,080
Speaker 5: We're just so much more grateful for the small things.

701
00:36:33,880 --> 00:36:36,560
Speaker 2: Amelia's having her preschool graduation and now Dave gets to

702
00:36:36,560 --> 00:36:39,600
Speaker 2: be at like her preschool graduation, so like huge milestone

703
00:36:39,640 --> 00:36:43,000
Speaker 2: for our family. We're just so grateful for that, just

704
00:36:43,080 --> 00:36:45,440
Speaker 2: having him be able to come to her dance recital.

705
00:36:46,239 --> 00:36:48,839
Speaker 2: We're just so grateful that we are in this overtime

706
00:36:49,239 --> 00:36:50,040
Speaker 2: for our family.

707
00:36:50,680 --> 00:36:53,279
Speaker 5: And I truly believe our overtime is going to go

708
00:36:53,320 --> 00:36:53,600
Speaker 5: on for.

709
00:36:53,560 --> 00:36:54,200
Speaker 2: A long time.

710
00:36:58,920 --> 00:37:02,080
Speaker 4: Just as living through his mother's cancer treatment pushed him

711
00:37:02,120 --> 00:37:05,560
Speaker 4: to study medicine, living through Castleman disease lit a new

712
00:37:05,600 --> 00:37:06,840
Speaker 4: fire within David.

713
00:37:07,440 --> 00:37:10,000
Speaker 1: You know, after finding out that serria limus could save

714
00:37:10,040 --> 00:37:12,640
Speaker 1: my life, all I've been able to think about for

715
00:37:12,680 --> 00:37:16,040
Speaker 1: these last ten years is how many more drugs are

716
00:37:16,080 --> 00:37:18,640
Speaker 1: sitting out there they could be life saving for other people.

717
00:37:18,680 --> 00:37:21,360
Speaker 1: I mean, I was walking back and forth past this

718
00:37:21,560 --> 00:37:23,480
Speaker 1: CVS that ended up being the place where I got

719
00:37:23,520 --> 00:37:26,560
Speaker 1: my serrial limis from for years it was always there,

720
00:37:27,120 --> 00:37:29,520
Speaker 1: and like for years, I'm sick with this horrible disease,

721
00:37:29,560 --> 00:37:31,359
Speaker 1: I'm in the ICU, and then I'm home, and then

722
00:37:31,360 --> 00:37:35,080
Speaker 1: I'm back in the ICU, and all along that pill

723
00:37:35,120 --> 00:37:37,319
Speaker 1: bottle with serrial limis, And it had been there because

724
00:37:37,360 --> 00:37:40,600
Speaker 1: it's a proof for kidney transplant rejection and it's utilized

725
00:37:40,600 --> 00:37:42,759
Speaker 1: by people all over the world, but it's not used

726
00:37:42,800 --> 00:37:46,319
Speaker 1: for Castleman's. And it's like, oh, my gosh, how many

727
00:37:46,400 --> 00:37:49,000
Speaker 1: more of those drugs that your CVS could be life

728
00:37:49,000 --> 00:37:51,440
Speaker 1: saving for you or someone you love. I mean, like, like,

729
00:37:51,600 --> 00:37:55,160
Speaker 1: what is the untapped potential within our medical system?

730
00:37:55,520 --> 00:37:59,200
Speaker 4: And Grant, you decided to join him in this pursuit.

731
00:37:59,760 --> 00:38:03,239
Speaker 3: Yeah, And we called all the researchers in the world

732
00:38:03,239 --> 00:38:05,359
Speaker 3: that might know anything about this disease. There are only

733
00:38:05,680 --> 00:38:08,239
Speaker 3: twenty of them or so, and we invited them all

734
00:38:08,280 --> 00:38:11,840
Speaker 3: to a conference. And I'll never forget sitting there at

735
00:38:11,880 --> 00:38:14,640
Speaker 3: the head of the table with David. So this is David,

736
00:38:14,719 --> 00:38:18,240
Speaker 3: I'm Grant, you know, and we're here to cure Castleman disease.

737
00:38:18,640 --> 00:38:22,680
Speaker 3: And just seeing these researchers who had been at this

738
00:38:22,760 --> 00:38:27,560
Speaker 3: for years around the table kind of chuckle and say, okay, kids,

739
00:38:27,640 --> 00:38:30,000
Speaker 3: you know, good luck. You know, we'll try and be helpful.

740
00:38:30,520 --> 00:38:33,759
Speaker 3: It's just one of those moments where we were young

741
00:38:33,800 --> 00:38:35,759
Speaker 3: and naive enough to have the audacity to think that

742
00:38:36,040 --> 00:38:36,840
Speaker 3: we could do anything.

743
00:38:38,320 --> 00:38:42,160
Speaker 4: Unlocking the off label potential of approved medicines will quickly

744
00:38:42,200 --> 00:38:44,760
Speaker 4: be put to the test. In Part two of David's story,

745
00:38:45,239 --> 00:38:48,280
Speaker 4: join us next week as David crosses paths with another

746
00:38:48,440 --> 00:38:53,120
Speaker 4: patient battling Castleman disease, Gary Gravina, who is clinging to

747
00:38:53,160 --> 00:38:54,960
Speaker 4: life during a terrifying flare up.

748
00:38:55,760 --> 00:38:59,520
Speaker 8: My wife started to notice that my stomach was getting larger,

749
00:38:59,680 --> 00:39:02,080
Speaker 8: and I wasn't really eating because I felt so ill,

750
00:39:02,840 --> 00:39:05,880
Speaker 8: and so for me to be putting on weight was weird.

751
00:39:06,600 --> 00:39:08,439
Speaker 8: I'm thinking, well, this is going to be something really

752
00:39:08,480 --> 00:39:10,279
Speaker 8: simple and they're going to take care of it. And

753
00:39:10,320 --> 00:39:12,480
Speaker 8: then when they started talking about admitting me, I'm like,

754
00:39:13,080 --> 00:39:15,960
Speaker 8: come on, this is this is not something like that.

755
00:39:16,000 --> 00:39:18,279
Speaker 8: I don't need to be in the hospital. This is ridiculous.

756
00:39:18,760 --> 00:39:20,759
Speaker 8: By the end of that week, I was in a

757
00:39:20,800 --> 00:39:22,359
Speaker 8: medically into his cooma.

758
00:39:22,600 --> 00:39:26,400
Speaker 4: Having beaten back his own Castleman disease. David is determined

759
00:39:26,440 --> 00:39:27,879
Speaker 4: to help Gary fight his.

760
00:39:28,520 --> 00:39:32,280
Speaker 1: I'm told, hey, there's a patient with your subtype of Castleman's.

761
00:39:32,360 --> 00:39:35,160
Speaker 1: You know, this very rare subtype. All of his organs

762
00:39:35,200 --> 00:39:39,520
Speaker 1: are obviously failing, and he looks just like me when

763
00:39:39,560 --> 00:39:42,200
Speaker 1: I was at my sickest. I remember telling him that,

764
00:39:42,280 --> 00:39:43,319
Speaker 1: you know, we're going to beat this.

765
00:39:44,080 --> 00:39:46,800
Speaker 4: But when David's course of action for Gary doesn't work,

766
00:39:47,239 --> 00:39:50,880
Speaker 4: they find themselves thrust into the same desperate race against time.

767
00:39:51,320 --> 00:39:52,799
Speaker 4: David knows all too well.

768
00:39:53,480 --> 00:39:57,400
Speaker 8: I was in a coma and I was just, you know,

769
00:39:57,440 --> 00:40:00,759
Speaker 8: everything in me was tanking, all the fingers connected to you,

770
00:40:00,880 --> 00:40:03,720
Speaker 8: and you're just kind of you feel apart from everything,

771
00:40:04,520 --> 00:40:07,600
Speaker 8: and I can just remember crying tears of frustration.

772
00:40:16,880 --> 00:40:20,960
Speaker 4: Symptomatic Medical Mystery Podcast is a production of Ruby Studio

773
00:40:21,080 --> 00:40:25,239
Speaker 4: from iHeartMedia. Our show is hosted by me Lauren Brett Pacheco.

774
00:40:25,760 --> 00:40:29,880
Speaker 4: Executive producers are Matt Romano and myself. Our EP of

775
00:40:29,920 --> 00:40:34,280
Speaker 4: post production is James Foster. Our producers are Sierra Kaiser

776
00:40:34,400 --> 00:40:37,680
Speaker 4: and John Irwin. And this episode was researched by Diana

777
00:40:37,760 --> 00:40:38,200
Speaker 4: Davis