July 23, 2024 • 40 mins
Dr. David Fajgenbaum, once a college quarterback and competitive weightlifter, turned medical researcher, was the picture of health until he became critically ill at the age of 25. After all available treatments failed to keep him out of the ICU, David, with his friend Grant’s help, races to save his own life, repurposing existing drugs to find a cure.
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****** SPOILER ALERT BELOW ******
If you’re looking for information on Castleman disease or if would like to find out more about the work of Grant, David, and the Every Cure team, visit EveryCure.org.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:04):
I'll never forget my doctor walking into the room and saying, David,
your liver, your kidneys, your bone marrow, your heart, and
your lungs are shutting down. I was just treating patients
down the hall.
Speaker 2 (00:19):
I was just spiraling, not knowing what was actually happening,
just being so confused because I just talked to him,
like two days ago.
Speaker 3 (00:27):
A priest came in and read him his last rites,
and then a few of us friends came in and
ultimately hugged him goodbye.
Speaker 1 (00:35):
I had to take some action, and it had to
be like a crazy step, and that is to start
testing one of these drugs that I was studying in
the lab on myself.
Speaker 4 (00:48):
How terrifying would it be to fight an unknown enemy,
one you didn't recognize and didn't see coming. What if
that enemy was coming from within a disease even doctors
couldn't identify. Nearly half of all Americans suffer from some
chronic illness, and many struggle for an accurate diagnosis. These
(01:12):
are their stories. I'm Lauren bred Pacheco, and this is symptomatic.
(01:34):
David Fagenbaum grew up in Raleigh, North Carolina.
Speaker 1 (01:37):
And I've got two older sisters, seven and five years
older than me, and two amazing parents. They immigrated to
the United States from Trinidad and Tobago and the Caribbean,
so they were sort of making this new life the
American dream in the States.
Speaker 4 (01:52):
And childhood exposure to a very American sport ignited one
of David's biggest dreams. And your dad is an orthoped
surgeon and worked for a period of time with North
Carolina State wolfback team. That's right, which is where at
the age of seven you had this burning desire to
play which position in what division?
Speaker 1 (02:14):
I wanted to play quarterback? And I want to play
Division one college football. That was like my first dream
and that is all I could think about for about
a decade.
Speaker 4 (02:23):
Your dad working so much, your mom kind of became
almost your football trainer.
Speaker 1 (02:30):
She did. She was my football trainer. She was my
mom obviously. She was also one of my closest friends.
And there was a hill behind her house and she
would stand at the top of this hill and I
would throw the football into the hill and then she could,
you know, throw it back down. She just wanted to
help me in any way that she could, even if
it was just you know, rolling footballs down a hill.
Speaker 4 (02:49):
At an early age. David showed his ability for extreme
dedication and focus becoming a star high school quarterback. But
that's just one of the reasons he caught the attention
of Caitlin, his future wife.
Speaker 2 (03:02):
He was the president of student council and we had
morning meeting every morning. He got up there with his
best friend and nothing to do.
Speaker 5 (03:14):
With school at all.
Speaker 2 (03:15):
They started rapping eminem songs. The whole student body was
just like, what is happening?
Speaker 5 (03:23):
I even said that.
Speaker 2 (03:24):
I'm like, I was very confused by him, but I
was also like, Wow, he's really attractive.
Speaker 4 (03:31):
Attractive and driven. You ended up playing quarterback for Georgetown.
Speaker 6 (03:37):
That's right.
Speaker 1 (03:37):
Listeners may not know Georgetown has a football team, but
we do and we are Division one.
Speaker 6 (03:43):
Yes.
Speaker 1 (03:43):
For me, it was the ultimate dream that I Yeah,
I'd been thinking about for over ten years.
Speaker 4 (03:48):
It's bittersweet too, because I know that your mom was
diagnosed your freshman year.
Speaker 6 (03:54):
That's right.
Speaker 1 (03:55):
Actually, just two weeks after she dropped me off to Georgetown,
and I got this phone call for my dad. When
he called, I started telling you all about this football
practice we had and all these touchdowns and all this stuff,
and he was just silent, and then he told me,
he said, David, your mom has brain cancer. And gosh,
I was like, what, you know, that can't be mom,
(04:17):
Like she's she's the most amazing person to everyone, Like
it's not faired, it's not right, and so yeah, that
sort of changed everything in my life. It just everything changed.
Speaker 4 (04:29):
Your family did exactly what in an ideal world any
family would be able to do. You were really there
and you were so present for her. Did it shape
your desire to become a doctor?
Speaker 1 (04:45):
It completely shaved my desire to become a doctor. I mean,
the moment that I heard my mom had cancer, and
of course the moment that I saw her dealing with
her cancer, I just said, this is what I have
to spend the rest of my life life doing. And
by this, it's taking care of people with horrible diseases,
and it's searching for treatments so that people don't suffer
(05:07):
like I witnessed my mom suffering.
Speaker 4 (05:09):
You know, I can't imagine how painful, Because you were
nineteen when she passed.
Speaker 6 (05:16):
I could go on all day about her. She was
such a force.
Speaker 1 (05:20):
She battled brain cancer for fifteen months, just so valiantly,
and everything about it you know, I share about the
humor that she brought into it. You know, the very
first brain surger she had. You know, we were devastated
going to that surgery. You know, what's mom going to
be like coming out of this? Is she gonna be
the same person. So I'll go back to see her,
and I remember that they pulled this curtain back and
(05:42):
she had this wrap around her head and then she
had this tube coming out of the incision and it
had sort of a bull at the end.
Speaker 6 (05:49):
It was actually collecting the fluid.
Speaker 1 (05:51):
She looked at us and she pointed to her head
and she said, shaquida banana lady, and we just like
burst into laughter. It was we needed. But my mom's
passing it impaled me and then it set me on fire.
Speaker 4 (06:11):
David's focus now set on medicine. He graduated from Georgetown
and was attending the University of Pennsylvania for his medical degree,
and although no longer leading a football team, his drive
for physical fitness continued.
Speaker 1 (06:25):
I continued to exercise a lot, and that was just
an out with it I loved. And so as a result,
I became like really.
Speaker 4 (06:30):
Fit, and you had a nickname because of it.
Speaker 1 (06:33):
Yes, I was called the Beast because I was in
really good shape. I want a bench pressing contest. In fact,
I set the Virginia state record for bench pressing, which
if you were to look at me now, you'd be like,
you sure about that, because I definitely am not going
to set any bench pressing records these days.
Speaker 3 (06:48):
He was really one of the healthiest guys I'd ever met.
We'd go to the cafeteria and he'd get a piece
of chicken and pick the fat off the chicken, even
because he was soicular about what was going into his body.
Speaker 4 (07:02):
That's Grant Mitchell, David's longtime friend, colleague and college roommate.
Speaker 3 (07:07):
So in medical school you do rotations in different hospitals,
and we got posted out for our Obigian rotation in Bethlehem, Pennsylvania,
outside of Philadelphia, and we were staying in some dorms
there and there was no gym, and so that was
not going to stop David from working out. And so
we found a tree outside of the dorm there that
(07:30):
had a nice branch.
Speaker 1 (07:31):
The tree branch, he just looked too perfect. It was horizontal,
it was perfect, so.
Speaker 3 (07:36):
We could hang from and do pull ups from.
Speaker 1 (07:39):
And so yeah, every time we walked past this tree.
We had to do pulps before we went to treat patients,
So yeah, we had to get pull ups in every morning.
Speaker 4 (07:46):
And in a weird way, that tree branch ended up
being an indicator that you were getting sick.
Speaker 1 (07:55):
You're right, because as the weeks went on, I stopped
wanting to do the pull ups. I didn't have the
energy to do the pulps. I actually hadn't thought about
that until you mentioned that. Now, yeah, I couldn't do them.
I was just dragging.
Speaker 4 (08:08):
At this point in his third year of medical school,
David's mental focus was on his residency and passing exams.
But suddenly I'm quite out of character. David was having
trouble keeping up physically, and.
Speaker 1 (08:22):
Then the fatigue became, this fatigue that I had never
experienced before. It was like this insatiable fatigue. Basically, like
no matter how much I slept, I just was exhausted.
Speaker 6 (08:32):
I couldn't get out of bed.
Speaker 1 (08:33):
I noticed lumps and bumps in my neck and flewid
around my ankles, and I didn't want to go there mentally,
but I knew that if a patient walked into my office.
I was a third year medicinistation walked into my room
and I'm the doctor looking at them, I would have
been very concerned, and I would have specifically said, I'm
very worried that you have an aggressive lymphoma, and in
(08:57):
such an aggressive lymphoma that you know you might have
a few weeks to live of it was moving so rapidly,
but I was like trying to just block that out
of my brain while at the same time I knew
something really bad was happening.
Speaker 6 (09:09):
I even told.
Speaker 3 (09:09):
Grant one day he walked into the living room of
our apartment and he said, something.
Speaker 6 (09:16):
Is just wrong.
Speaker 3 (09:18):
I think I'm gonna die. And David, what, You're not
going to die? Like, what's gotten into you?
Speaker 4 (09:25):
How did you process that? Maybe just the stress of
med school getting to him.
Speaker 3 (09:30):
Yeah, I just thought that, you know, he was focused
on health, and I didn't think much of it, just
told him to, you know, relax, it's okay. A lot
of medical students go through this when they are in
medical school and they're learning thousands of different ailments that
can occur in the human body, and you start sort
of thinking about what's going on inside of you and
(09:52):
even get a little sense of paranoia. And overdiagnosis. It's
kind of a running joke within medical school. Everyone's sort
of diagnosing themselves and all the different things that could
be happening. And so I just thought it.
Speaker 4 (10:03):
Was that, in addition to the exhaustion and swelling, David
was noticing rashes and redness popping up all over his body.
It was clear that whatever was going on it needed
immediate attention, but David, being hyper focused, was determined to
make it through his OBGYN exam before turning his attention
(10:24):
towards himself.
Speaker 1 (10:25):
I remember, while I'm taking the exam, just like full
body sweating. I'm like shivering, I like can't keep my
eyes open. But I went from taking the exam and
I went down the hall and I just I went
straight to the er and they took me back almost immediately.
I just was I was so ill, and they did
blood work, and I'll never forget my doctor walking into
(10:46):
the room and saying, David, your liver, your kidneys, your
bone marrow, your heart, and your lungs are shutting down.
We have to hospitalize you right away. And I'm like
sitting I'm like, but I was just treating patients down
the hall like a couple days ago.
Speaker 2 (11:05):
We weren't taking a break at this point, and I
remember being on Facebook and seeing a lot of people
writing on his page and praying for you.
Speaker 5 (11:15):
I'm thinking about you. So I was wondering what was
going on.
Speaker 1 (11:20):
I hope that it was maybe some virus, because viruses
come and go. You might get really sick, but it'll
be gone at some point. We hoped it was a virus.
Didn't turn out to be a virus. We then thought,
maybe it's not an immune disease, but you know, none
of that immune disease tests were coming back, and then
that sort of left us with, like, what's the other
thing that could be caused in this sort of the big, bad,
scary thing, and that was lymphoma. But the tests we
(11:40):
were doing weren't giving us an answer. And that was
actually one of the last really vivid memories I have
from what then turned into hospitalization, where I just became
more and more confused and less and less aware of
what was going on.
Speaker 4 (11:55):
David and his family found themselves in an all too
familiar and painful situation, gathered around a hospital bed, only
this time David as the patient. Doctors performed a bone
marrow biopsy, pet scans, MRIs a liver biopsy, among other tests,
none of which provided clarity around the cause of these symptoms.
(12:17):
David was given high dose corticosteroids, a common practice in
the ICU when there is no clear path to treatment,
and as the days and weeks progressed, David's illness was
impossible to ignore.
Speaker 1 (12:32):
The physical morph was pretty incredible, and sometimes you have
to see the pictures to really understand, but I'll try
to describe what happened to me. So, because my liver
and my kidneys stopped working, what happens is you start
getting fluid all over your body. So I gained what
we estimate to be close to one hundred pounds. Now
(12:53):
imagine at the same time, you're not eating because you're
so sick and you can't keep down any food, and
your immune system is literally ravaging all your right organs.
So as a result, you lose all of the muscle
mass and any lean mass that you have. So you're
left with a body that has one hundred pounds of fluid,
(13:13):
has lost fifty to sixty pounds of muscle. You're just
bone and fluid everywhere. You're just like a swollen skeleton. Basically,
that's what I looked like.
Speaker 3 (13:26):
The pictures that we have of him in the hospital
are not even close to how bad it was. And
the reason for that was because David didn't want any pictures.
That's not how he wanted to be remembered. David thought
he was dying.
Speaker 4 (13:44):
David was airlifted back to his hometown to the hospital
his father worked out of. He spent seven more weeks
there until he improved just enough to be discharged, only
to find himself right back where he was one month later.
After months testing and hospitalization, David had a lymph node biopsy,
which returned some surprising results.
Speaker 1 (14:09):
I wasn't talking, I wasn't doing anything. I was just
laying there. So imagine there's eleven weeks of like my
dad and my two sisters just being there for me
through everything, helping me to breathe. I didn't want to breathe, like,
just fighting for my life. And the first moment where
like the three of them are not in the room,
it's like the moment when the sturse comes in. So
she's like, you know, I got the news. I just figured,
(14:31):
you know, i'd deliver it to you. And she's like
good news. It's not lymphoma. And then she looks at
the piece of paper because she like doesn't know what
the word is, like she's never seen it. She's like, uh,
you have something called castlemans.
Speaker 6 (14:40):
I'm like, well, is that good? Is that bad? She's like, well,
it's not lymphoma. Like it's great, I guess.
Speaker 1 (14:46):
And so here I am by myself and I'm like great,
it's like Castleman's like, I don't I'm a med student,
but I don't remember learning about it.
Speaker 6 (14:52):
I think maybe I heard it once in my life.
Speaker 3 (14:54):
So good news. We know what it is. So what
do you do when you first hear about something? I
learn more?
Speaker 6 (15:00):
You google it.
Speaker 3 (15:01):
Then you see the Wikipedia page.
Speaker 1 (15:03):
The way that it was described was that it was
just uniformly fatal and everyone died within a couple of
years of diagnosis. And I was just devastated to read
about this disease.
Speaker 4 (15:12):
Castleman disease is a rare condition that causes the immune
system to go into hyperdrive, attacking organs and bodily pathways.
In the United States, they're only about five thousand new
cases annually, with each prognosis varying based on the subtype.
David was unfortunately diagnosed with one of the most aggressive variations.
(15:33):
Desperate to quickly find a treatment that worked, David was
transferred to the hematology and oncology ward at Duke in Durham,
North Carolina.
Speaker 1 (15:43):
When I was at Duke for my second hospitalization, I
was so sick that my doctors encouraged my family to
say goodbye to me.
Speaker 3 (15:52):
It was shocking. You know, we were still very young.
It was the time in our lives where we were
energized to you know, we were healthy, we were young,
we were ready to go conquer the world. And to
see the person among us that seems the strongest transformed
so abruptly was startling. It was hard to process. I
(16:14):
didn't think it was even real, like, surely he'll just
be fine soon. And that changed dramatically for us when
they ultimately told him that they didn't know what else
they could do. I'll never forget the moment when a
priest came.
Speaker 1 (16:31):
In to read me my last rites. That was in
November of twenty ten. I was twenty five years old.
Speaker 3 (16:36):
Then a few of his friends came in and ultimately
hugged him goodbye. And I think everyone tried to keep
a positive outlook, you know you're going to be okay.
And I remember I couldn't really keep it together. David
and I talked about that a lot. He says that
he almost knew how bad it was when I came
(16:57):
in the room and you saw my face because I
couldn't hide help. Horrifying it was to see him in
that state.
Speaker 1 (17:07):
Yeah, And when you're administer your last rods, when you
say goodbye to your family, you don't do it like
thinking that I'm going to get another shot at this.
Speaker 6 (17:15):
It's like this is it.
Speaker 4 (17:23):
David, who had been the physical ideal of athleticism and
health just months before, was now unrecognizable, seemingly at the
end of his fight with Castleman, Caitlyn traveled to visit
him in the hospital. Despite no longer dating at the time,
there was still a connection between them.
Speaker 2 (17:41):
If this was going to be the last time, I
wanted to talk to him, just to hold his hand,
to see how he was doing.
Speaker 1 (17:50):
I can barely form sentences. I don't know what the
heck's going on. I'm confused, and this is going to
be the last time Caitlyn's going to see me. I'm
not going able to tell her the things that I
want to tell her. So she came to visit me
multiple times, and each time I had somehow communicated to
my sisters that I didn't want her to come.
Speaker 6 (18:08):
In the room.
Speaker 2 (18:09):
I thought that maybe she didn't know that I was
trying to see him, because you know, I had his
phone number, and I would reach out and I just
you know, wouldn't hear back from him.
Speaker 5 (18:18):
So then I would reach.
Speaker 2 (18:19):
Out to his sisters and just see And I did
think that they were maybe they were mad at me
because I broke up with him, and you know, I
thought maybe there was like something like petty, but like
there wasn't.
Speaker 5 (18:30):
They were just protecting their brother.
Speaker 1 (18:32):
I regret that, because who cares if I didn't look
like my former self? And who cares, you know, if
I didn't say the right words.
Speaker 4 (18:41):
David had now come to the brink of death twice
in a span of three months.
Speaker 1 (18:46):
Turned out that there were no FD approved drugs, but
there were a couple of drugs that have been tried,
particularly chemotherapies, and one of them worked for a little
bit of time, and then I started to relapse while.
Speaker 4 (18:57):
The chemo suppressed David's immune system stopped been Castleman from
attacking his body. It also took a heavy toll on
David's ability to fight, but there was one last hope
waiting for him in Arkansas.
Speaker 1 (19:10):
I learned that there was the world's expert was in
Little Rock, Arkansas. So I traveled out to the Mecca
Castle and Disease. I've been given the plan like I'm
going to be on an experimental drug. It was going
into going a clinical trial and everyone and it was
working for a bunch of people, and I was like,
oh my gosh, Like, you know, we'd been praying for
this for my mom and we never got it. But
now here we were for me, like maybe we got this.
This is like the drug we've been waiting for. And
(19:32):
you know, just before I was supposed to fly back
to North Carolina, which is where my family lives, to recover,
the test results came back from my Little Rock visit
that my labs were all horrible and my organs were
all shutting down again. So we actually were we were
actually in the airport in Little Rock getting ready to leave,
and then we just went back to the hospital. That
(19:57):
was the beginning of about a seven week long hospitalization
and where I.
Speaker 6 (20:00):
Sort of went off the cliff again.
Speaker 4 (20:03):
My gosh, you you had to go through this cycle
so many times. How did you find the strength in
those moments to just keep going?
Speaker 6 (20:14):
Yeah?
Speaker 1 (20:14):
I think for me, there were a few things that
helped me to keep fighting. I mean, for one, I
felt like I had this unfinished business to do. Like
I promised my mom, I was going to find drugs
for people suffering from diseases.
Speaker 6 (20:28):
And I'm a third year med student.
Speaker 1 (20:29):
I'm sort of like finally somewhat trained to start helping people,
and then now I'm going to go out and never
be able to do the thing that I promised my mom.
Another one was just the amazing support I got from
my family. My sisters never left my side, my dad
never left my side. I just wanted to be with
them longer, Like, I just wanted more time with them.
Speaker 4 (20:50):
Having traveled nearly one thousand miles to the world's foremost
castleman expert David recognized the continued cycle of chemotherapy with
catch up to him. That's when things changed. He was
no longer content to merely be the patient.
Speaker 1 (21:08):
My doctor explains to me that, like we've tried everything,
there's nothing else that we can do. And I just
hid rock bottom. I thought, I'm going to get to
work and tried to find a treatment for this disease
to save my life.
Speaker 4 (21:25):
We'll be right back with Symptomatic, a Medical Mystery Podcast.
Now back to Symptomatic, a Medical Mystery Podcast. David Fagenbaum,
once a college quarterback and powerlifting champion, was coming out
of his third hospitalization from Castleman disease. After the only
(21:49):
known drug to help treat Castleman failed, David went through
seven weeks of multi agent chemotherapy, daily blood transfusions and dialysis.
David and his family returned home to North Carolina, fearful
of when the next relapse would begin, but this time
he had a little extra support.
Speaker 1 (22:13):
So this stage, this is when I had lost my
hair from chemotherapy. I still had about fifty pounds of
fluid all over my body. My belly, you know, was
indistinguishable from someone who would be eight months pregnant.
Speaker 6 (22:26):
And Caitlin she was at my door.
Speaker 2 (22:31):
I didn't know how bad it was when I was there,
because no one gave me the details. When I was
reaching out to his sisters, no one said, this is it.
He's being read his last right. I didn't find these
things out until later, which almost helped.
Speaker 5 (22:44):
It kind of helped me cope.
Speaker 1 (22:47):
And she said to me, I want us to get
back together. I'd been hoping for that for so long,
but here I am with like this horrible, deadly disease.
I don't think any human could have more baggage than
I had at that moment, being like, or are you sure?
Like you know, I got a what going on? You know,
got this horrible, deadly disease, like are you sure? And
she looked at me like she was offended that I
(23:10):
was asking her that, like of course, like are you
kidding me?
Speaker 6 (23:14):
Like, of course, I want us to get back together.
Speaker 1 (23:15):
And it was like that's exactly what I needed.
Speaker 5 (23:18):
In that moment, I knew it was him.
Speaker 2 (23:20):
It was still him in there, so it just didn't
matter the physical appearance.
Speaker 4 (23:25):
Is there a moment that you look back where you
worried because it was just too much for David?
Speaker 2 (23:31):
I mean, it was definitely when his doctors said that
they've tried everything and there was nothing else that they
could do.
Speaker 5 (23:37):
That's when Dave was like, I got to take this
into my hands. What can I do for myself?
Speaker 1 (23:42):
If I'm gonna hope for a drug to save my life,
Like shouldn't I be acting or like doing something to
get there? So for me, it was okay, I'm gonna
get involved in research. I'm going to build an organization
called the Castle Clibor Network. I'm gonna start conducting laboratory
research myself, and I'm gonna get to work.
Speaker 2 (23:59):
In day fashion that how he copes, he's going to
fix it. So we were his doers, and he was
the fixer while he's in the hospital bed having ice
packs under his arms because he is fevers.
Speaker 3 (24:10):
And for someone who is as focused as Dave, there's
nothing that will focus you more in this life than
staring down that clock. You know, we call it a
dream team, but you know, David was the engine. David
was the force behind it all. He was quarterbacking it absolutely.
He slotted right in in that role.
Speaker 4 (24:29):
David spent the next six months at home regaining his strength,
and although the experimental drug still tuxamab, that David had
taken failed to help him recover, he was now using
it in hopes that it would work as a preventative measure.
He returned to medical school and got to work on
finding a cure for castlemen.
Speaker 1 (24:47):
We weren't just going to hope that Santa's elves were
going to like magically come up with some brilliant idea
and do the research. We simply said, what should we do?
We asked everyone that, and then we simply found the
best people in the world to do the things that
were prioritized to us. So that was one major shift,
and the other one was again a very simple realization,
and that was it costs between one and two billion
(25:08):
dollars to create a new drug from scratch, and that
can take ten to fifteen years for one drug. So
I didn't have a billion dollars. I didn't have ten
to fifteen years. So I say, okay, well, how else
could I potentially be treated? Well, all those chemotherapies that
I got that saved my life, they weren't made for
castleum and disease. What if there's some other drug out
there that wasn't made for Castle disease. I mean, the
chemo doesn't work long term, but it's saved my life
(25:29):
a few times. I appreciate the chemo. Is there something else?
So that became my mission. Can I figure out what's
going wrong in my body? And then can I figure
out is there a drug that's already FDA prooved for
some other disease that might actually be able to be
useful for my disease that I thought could save my life.
Speaker 4 (25:47):
David recruited experts from all over the world to join
the Castleum Disease Collaborative Network or CDCN, and diligently continued
his lab research to understand what was happening in his body.
Despite all the effort toward finding a cure, David experienced
a four to th relapse in April of twenty twelve.
After his longest stretch of stability. The now standard playbook
(26:11):
for flare up, David gets a massive round of chemo,
all while trying to maintain some sort of normalcy in
his life.
Speaker 1 (26:19):
So at this stage, Caitlin and I are engaged, were
engaged to get married in May twenty fourth, twenty fourteen,
and I know that I'm not going to make it
there at the current rate. I Actually my last relapse
was while I was getting weekly chemotherapy for the first
time ever. We were like, let's try it prementive chemo,
which is not a thing, but let's try it like
in advance and see if that'll stop it. And it
(26:39):
still roared its head, it's still exploded. Still put me
in nice you for a month. So that didn't work.
Speaker 3 (26:44):
It's impossible to work backwards from there to figure out
what went wrong that led to it. And it occurred
to us that instead of taking samples from his blood
while he was in the throes of these flares, we
should take those samples before and after, and we should
do it every few weeks so that we can study
(27:07):
maybe the progenitor markers of what is initiating this cascade,
and if we can find out what's going on early
before it goes full blown, maybe we can stop the
cascade from ever occurring.
Speaker 1 (27:21):
I've said goodbye to my family five times, and this
thing's gonna keep coming back. So if I wanted to
make it to May twenty four to twenty fourteen, I
had to take some action, and it had to be
a pretty in hindsight like sort of crazy step, and
that is to start testing one of these drugs that
I was studying in the lab on myself.
Speaker 5 (27:40):
And I was like, what are the side effects?
Speaker 2 (27:43):
You know?
Speaker 5 (27:44):
He was like, it could either work or you know,
it doesn't work. So I just I was very confused.
Speaker 2 (27:51):
I was like, are you sure, like yourself, you're going
to try this on yourself? And so I was very
unsure about it. I didn't have a lot of faith,
but this was going to work. I felt like we
were just going to be in the same place fifteen
months later.
Speaker 4 (28:06):
Was that your biggest fear?
Speaker 5 (28:08):
Yeah, that it was just going to be a cycle.
Speaker 4 (28:11):
As David battles Castleman disease for the fifth time, he
starts to put his research to the test, trying drugs
that will target the immune system. First on the list,
David started taking cyclosporin. While he showed no signs of improvement,
his condition didn't worsen, which seemed positive. He then moved
on to the second drug, ivig hope. David feel better
(28:35):
almost immediately. Blood tests were finally heading in the right direction,
only for Castleman disease to knock David down once again.
A few weeks later, it was back to the old
playbook and David had to undergo another massive round of chemo.
Speaker 1 (28:52):
There was some real heartbreak, right. It was like, Caitlin,
I've been doing this work in the lab. I've been
experimenting on my own blood samples and been experimenting on
flinto tissue. That's like the moment where you want to
try these drugs to see, like while you're getting worse,
like does it stabilize things?
Speaker 6 (29:05):
And it didn't, and that was heartbreaking.
Speaker 3 (29:08):
And the tricky thing about this disease is that you
don't necessarily know if it's working or not until you
don't have a flare. So you have to wait. And
these flares that happen about every year. So let's say
a flare occurs and then you realize the drug that
you're on didn't work, and now you try a new
(29:31):
drug after the flare subsides, and it doesn't just subside.
You have to obliterate your immune system with seven agent
chemo to stop it. And then once you survive that
onslaught of toxic drugs and you say, okay, now we'll
try a new drug.
Speaker 1 (29:47):
And I don't know how I survived that fifth one.
They gave me like humanly impossible doses. I was like
taking like large animal doses of chemo, but I knew
that it wasn't gonna work long term.
Speaker 4 (29:58):
I can't imagine watching someone you love suffer the way
he obviously suffered with all of those relapses, but particularly
in the case of the chemo, the treatment seemed even
worse than the disease. How grueling was it to watch
(30:18):
him go through a cycle of relapses.
Speaker 2 (30:23):
It was just like such a letdown when you would think, like,
he just did the chemo and now he's he's been
better for sixteen to eighteen months, and then all of
a sudden, you know, it happens again.
Speaker 5 (30:36):
It was just so frustrating, like.
Speaker 2 (30:38):
How many times can a body get this much chemotherapy?
Speaker 4 (30:42):
After recovering from his fifth barrage of chemo, David looks
at the last option on the table from his research
getting to know Castleman disease. Through their experimentation, Grant and
David learned that his subtype causes the bodily communication line
called intour to go in to overdrive. Mtour tells the
(31:02):
immune system to mobilize and activates tea cells to go
to war attacking foreign cells or in David's case, his
own I.
Speaker 6 (31:12):
Thought that, hey, why don't use an mTOR inhibitor.
Speaker 1 (31:14):
I mean again, it was very simple, as there was
too much This communication line looked like it was turned
into overdrive.
Speaker 6 (31:19):
Here's a drug that turns it off. Let's try it.
Speaker 3 (31:22):
We were at a point where there was a no
regret move to try something else, and that was something
called serri limis. It is isolated from a fungus found
in the soil of Easter Island. It hits the mtour
pathway and reduces T cell activation. Maybe it could prevent
(31:45):
the cascade that ultimately led to cytokind storm that would
attack his body.
Speaker 1 (31:49):
This was the third and frankly probably the last possible attempt.
There weren't many more drugs on our list of possibilities,
and there wasn't much more time, so it was the
last ditch effort after like many last.
Speaker 4 (32:02):
Ditch efforts, Now taking the only medication left on the table,
David and Caitlin did have something worth looking forward to
their wedding. But what was weighing on David's mind the
issue of the hair on his head, or lack thereof.
Speaker 3 (32:20):
I remember we were in the hotel room getting ready
for the wedding and he had just started to grow
his hair back. He was so protective of every hair
on his head. You know, it didn't look good. It
was just kind of like thinly there and a little
bit on his neck, and like I was, like David,
(32:41):
let me, just shave these hairs on the back of
your neck so you can look nice and trim for
your wedding day.
Speaker 1 (32:48):
And I told him absolutely not, because my hair had
just come in, Like I got like my hair started
to grow like two weeks before my wedding day, so
it kind of looked like I just had this like
very short buzz cut or something. But yeah, I had
your neck hair had grown back, and Grant's like, let
me clean you up.
Speaker 6 (33:04):
It's your wedding now.
Speaker 1 (33:04):
I'm like, no, like every every follicle matters, like you're not.
There's every hair that is on my head, it is
staying there.
Speaker 5 (33:12):
I love that.
Speaker 3 (33:14):
But it was just awesome because, like I said, after
I hugged him goodbye that day, I didn't think I'd
ever seen him again.
Speaker 4 (33:22):
Having already been through until death do us part? What
did it mean to exchange vows? What did your wedding
mean to you? On a deeper level.
Speaker 5 (33:35):
It was so powerful.
Speaker 7 (33:36):
It was like those words were so real where I
feel like people just say those as their vowels, but
really we meant them so much to each other.
Speaker 5 (33:49):
We had already been through it. Yeah, it just meant
so much to us.
Speaker 4 (33:53):
As David and Caitlin now looked towards the future. They
couldn't help but be troubled by lingering thoughts of fear.
Will Castleman disease return, and if so, what other possible
options are left on the table.
Speaker 3 (34:07):
We didn't know right away if it was working or not.
Speaker 2 (34:10):
We kind of just waited each month and we're like,
is it coming?
Speaker 3 (34:14):
Is it coming? We had to wait a full year
to see if he was going to undergo another flare.
So eight months go by, we're on the edge of
our seat. Twelve months go by, we're watching and waiting.
Fourteen months, sixteen, eighteen.
Speaker 5 (34:32):
Nineteen months, twenty months, twenty.
Speaker 3 (34:34):
One months, two years go by, and it.
Speaker 2 (34:36):
Wasn't coming back. We were kind of like, oh, my gosh,
something's working.
Speaker 3 (34:41):
Months and months after, longer than he'd ever been in
remission or not in flair. My god, my god, he's okay.
We think we found a cure.
Speaker 1 (34:55):
This cri linemus. That's the one that worked, and that's
why I'm here and on this podcast right If it
didn't work, I'm not here. Ten years ago is when
I pass and I'm you know, very much a memory
for Caitlin and my family. But it's because we connected
on that last one that I'm still here and that
that now I can continue to pursue this for other people.
Speaker 4 (35:22):
How did this shape your perspective once it went into remission,
if I may use that word.
Speaker 1 (35:32):
Yeah, absolutely, I do like to use that word. And
ever since this permission started, I just have this feeling
of overtime. It's like, okay, like I don't know when
the disease could come back, and of course there's more
and more days go by, the more confident I feel that,
you know, maybe we've really, you know, gotten this disease
under under full control. But it's just given me this
urgency where it's like I got to do as many
things as I can do.
Speaker 2 (35:53):
When we finally got off the hamster wheel, Yeah, it
was just like I can just like feel even saying
it to you right now, I can feel like wait,
just coming off my chest, like in that moment, we
were so relieved.
Speaker 4 (36:11):
David Fagenbaum was pushed to the brink of death five
times before finally finding a medicine that sent his Castleman
disease into remission. David and Caitlin didn't just make it
to their first wedding anniversary. They're now celebrating their tenth
and counting, along with the two adorable children they welcomed
along the way.
Speaker 5 (36:30):
We're just so much more grateful for the small things.
Speaker 2 (36:33):
Amelia's having her preschool graduation and now Dave gets to
be at like her preschool graduation, so like huge milestone
for our family. We're just so grateful for that, just
having him be able to come to her dance recital.
We're just so grateful that we are in this overtime
for our family.
Speaker 5 (36:50):
And I truly believe our overtime is going to go
on for.
Speaker 2 (36:53):
A long time.
Speaker 4 (36:58):
Just as living through his mother's cancer treatment pushed him
to study medicine, living through Castleman disease lit a new
fire within David.
Speaker 1 (37:07):
You know, after finding out that serria limus could save
my life, all I've been able to think about for
these last ten years is how many more drugs are
sitting out there they could be life saving for other people.
I mean, I was walking back and forth past this
CVS that ended up being the place where I got
my serrial limis from for years it was always there,
and like for years, I'm sick with this horrible disease,
(37:29):
I'm in the ICU, and then I'm home, and then
I'm back in the ICU, and all along that pill
bottle with serrial limis, And it had been there because
it's a proof for kidney transplant rejection and it's utilized
by people all over the world, but it's not used
for Castleman's. And it's like, oh, my gosh, how many
more of those drugs that your CVS could be life
saving for you or someone you love. I mean, like, like,
(37:51):
what is the untapped potential within our medical system?
Speaker 4 (37:55):
And Grant, you decided to join him in this pursuit.
Speaker 3 (37:59):
Yeah, And we called all the researchers in the world
that might know anything about this disease. There are only
twenty of them or so, and we invited them all
to a conference. And I'll never forget sitting there at
the head of the table with David. So this is David,
I'm Grant, you know, and we're here to cure Castleman disease.
And just seeing these researchers who had been at this
(38:22):
for years around the table kind of chuckle and say, okay, kids,
you know, good luck. You know, we'll try and be helpful.
It's just one of those moments where we were young
and naive enough to have the audacity to think that
we could do anything.
Speaker 4 (38:38):
Unlocking the off label potential of approved medicines will quickly
be put to the test. In Part two of David's story,
join us next week as David crosses paths with another
patient battling Castleman disease, Gary Gravina, who is clinging to
life during a terrifying flare up.
Speaker 8 (38:55):
My wife started to notice that my stomach was getting larger,
and I wasn't really eating because I felt so ill,
and so for me to be putting on weight was weird.
I'm thinking, well, this is going to be something really
simple and they're going to take care of it. And
then when they started talking about admitting me, I'm like,
come on, this is this is not something like that.
(39:16):
I don't need to be in the hospital. This is ridiculous.
By the end of that week, I was in a
medically into his cooma.
Speaker 4 (39:22):
Having beaten back his own Castleman disease. David is determined
to help Gary fight his.
Speaker 1 (39:28):
I'm told, hey, there's a patient with your subtype of Castleman's.
You know, this very rare subtype. All of his organs
are obviously failing, and he looks just like me when
I was at my sickest. I remember telling him that,
you know, we're going to beat this.
Speaker 4 (39:44):
But when David's course of action for Gary doesn't work,
they find themselves thrust into the same desperate race against time.
David knows all too well.
Speaker 8 (39:53):
I was in a coma and I was just, you know,
everything in me was tanking, all the fingers connected to you,
and you're just kind of you feel apart from everything,
and I can just remember crying tears of frustration.
Speaker 4 (40:16):
Symptomatic Medical Mystery Podcast is a production of Ruby Studio
from iHeartMedia. Our show is hosted by me Lauren Brett Pacheco.
Executive producers are Matt Romano and myself. Our EP of
post production is James Foster. Our producers are Sierra Kaiser
and John Irwin. And this episode was researched by Diana
(40:37):
Davis
I'll never forget my doctor walking into the room and saying, David,
your liver, your kidneys, your bone marrow, your heart, and
your lungs are shutting down. I was just treating patients
down the hall.
Speaker 2 (00:19):
I was just spiraling, not knowing what was actually happening,
just being so confused because I just talked to him,
like two days ago.
Speaker 3 (00:27):
A priest came in and read him his last rites,
and then a few of us friends came in and
ultimately hugged him goodbye.
Speaker 1 (00:35):
I had to take some action, and it had to
be like a crazy step, and that is to start
testing one of these drugs that I was studying in
the lab on myself.
Speaker 4 (00:48):
How terrifying would it be to fight an unknown enemy,
one you didn't recognize and didn't see coming. What if
that enemy was coming from within a disease even doctors
couldn't identify. Nearly half of all Americans suffer from some
chronic illness, and many struggle for an accurate diagnosis. These
(01:12):
are their stories. I'm Lauren bred Pacheco, and this is symptomatic.
(01:34):
David Fagenbaum grew up in Raleigh, North Carolina.
Speaker 1 (01:37):
And I've got two older sisters, seven and five years
older than me, and two amazing parents. They immigrated to
the United States from Trinidad and Tobago and the Caribbean,
so they were sort of making this new life the
American dream in the States.
Speaker 4 (01:52):
And childhood exposure to a very American sport ignited one
of David's biggest dreams. And your dad is an orthoped
surgeon and worked for a period of time with North
Carolina State wolfback team. That's right, which is where at
the age of seven you had this burning desire to
play which position in what division?
Speaker 1 (02:14):
I wanted to play quarterback? And I want to play
Division one college football. That was like my first dream
and that is all I could think about for about
a decade.
Speaker 4 (02:23):
Your dad working so much, your mom kind of became
almost your football trainer.
Speaker 1 (02:30):
She did. She was my football trainer. She was my
mom obviously. She was also one of my closest friends.
And there was a hill behind her house and she
would stand at the top of this hill and I
would throw the football into the hill and then she could,
you know, throw it back down. She just wanted to
help me in any way that she could, even if
it was just you know, rolling footballs down a hill.
Speaker 4 (02:49):
At an early age. David showed his ability for extreme
dedication and focus becoming a star high school quarterback. But
that's just one of the reasons he caught the attention
of Caitlin, his future wife.
Speaker 2 (03:02):
He was the president of student council and we had
morning meeting every morning. He got up there with his
best friend and nothing to do.
Speaker 5 (03:14):
With school at all.
Speaker 2 (03:15):
They started rapping eminem songs. The whole student body was
just like, what is happening?
Speaker 5 (03:23):
I even said that.
Speaker 2 (03:24):
I'm like, I was very confused by him, but I
was also like, Wow, he's really attractive.
Speaker 4 (03:31):
Attractive and driven. You ended up playing quarterback for Georgetown.
Speaker 6 (03:37):
That's right.
Speaker 1 (03:37):
Listeners may not know Georgetown has a football team, but
we do and we are Division one.
Speaker 6 (03:43):
Yes.
Speaker 1 (03:43):
For me, it was the ultimate dream that I Yeah,
I'd been thinking about for over ten years.
Speaker 4 (03:48):
It's bittersweet too, because I know that your mom was
diagnosed your freshman year.
Speaker 6 (03:54):
That's right.
Speaker 1 (03:55):
Actually, just two weeks after she dropped me off to Georgetown,
and I got this phone call for my dad. When
he called, I started telling you all about this football
practice we had and all these touchdowns and all this stuff,
and he was just silent, and then he told me,
he said, David, your mom has brain cancer. And gosh,
I was like, what, you know, that can't be mom,
(04:17):
Like she's she's the most amazing person to everyone, Like
it's not faired, it's not right, and so yeah, that
sort of changed everything in my life. It just everything changed.
Speaker 4 (04:29):
Your family did exactly what in an ideal world any
family would be able to do. You were really there
and you were so present for her. Did it shape
your desire to become a doctor?
Speaker 1 (04:45):
It completely shaved my desire to become a doctor. I mean,
the moment that I heard my mom had cancer, and
of course the moment that I saw her dealing with
her cancer, I just said, this is what I have
to spend the rest of my life life doing. And
by this, it's taking care of people with horrible diseases,
and it's searching for treatments so that people don't suffer
(05:07):
like I witnessed my mom suffering.
Speaker 4 (05:09):
You know, I can't imagine how painful, Because you were
nineteen when she passed.
Speaker 6 (05:16):
I could go on all day about her. She was
such a force.
Speaker 1 (05:20):
She battled brain cancer for fifteen months, just so valiantly,
and everything about it you know, I share about the
humor that she brought into it. You know, the very
first brain surger she had. You know, we were devastated
going to that surgery. You know, what's mom going to
be like coming out of this? Is she gonna be
the same person. So I'll go back to see her,
and I remember that they pulled this curtain back and
(05:42):
she had this wrap around her head and then she
had this tube coming out of the incision and it
had sort of a bull at the end.
Speaker 6 (05:49):
It was actually collecting the fluid.
Speaker 1 (05:51):
She looked at us and she pointed to her head
and she said, shaquida banana lady, and we just like
burst into laughter. It was we needed. But my mom's
passing it impaled me and then it set me on fire.
Speaker 4 (06:11):
David's focus now set on medicine. He graduated from Georgetown
and was attending the University of Pennsylvania for his medical degree,
and although no longer leading a football team, his drive
for physical fitness continued.
Speaker 1 (06:25):
I continued to exercise a lot, and that was just
an out with it I loved. And so as a result,
I became like really.
Speaker 4 (06:30):
Fit, and you had a nickname because of it.
Speaker 1 (06:33):
Yes, I was called the Beast because I was in
really good shape. I want a bench pressing contest. In fact,
I set the Virginia state record for bench pressing, which
if you were to look at me now, you'd be like,
you sure about that, because I definitely am not going
to set any bench pressing records these days.
Speaker 3 (06:48):
He was really one of the healthiest guys I'd ever met.
We'd go to the cafeteria and he'd get a piece
of chicken and pick the fat off the chicken, even
because he was soicular about what was going into his body.
Speaker 4 (07:02):
That's Grant Mitchell, David's longtime friend, colleague and college roommate.
Speaker 3 (07:07):
So in medical school you do rotations in different hospitals,
and we got posted out for our Obigian rotation in Bethlehem, Pennsylvania,
outside of Philadelphia, and we were staying in some dorms
there and there was no gym, and so that was
not going to stop David from working out. And so
we found a tree outside of the dorm there that
(07:30):
had a nice branch.
Speaker 1 (07:31):
The tree branch, he just looked too perfect. It was horizontal,
it was perfect, so.
Speaker 3 (07:36):
We could hang from and do pull ups from.
Speaker 1 (07:39):
And so yeah, every time we walked past this tree.
We had to do pulps before we went to treat patients,
So yeah, we had to get pull ups in every morning.
Speaker 4 (07:46):
And in a weird way, that tree branch ended up
being an indicator that you were getting sick.
Speaker 1 (07:55):
You're right, because as the weeks went on, I stopped
wanting to do the pull ups. I didn't have the
energy to do the pulps. I actually hadn't thought about
that until you mentioned that. Now, yeah, I couldn't do them.
I was just dragging.
Speaker 4 (08:08):
At this point in his third year of medical school,
David's mental focus was on his residency and passing exams.
But suddenly I'm quite out of character. David was having
trouble keeping up physically, and.
Speaker 1 (08:22):
Then the fatigue became, this fatigue that I had never
experienced before. It was like this insatiable fatigue. Basically, like
no matter how much I slept, I just was exhausted.
Speaker 6 (08:32):
I couldn't get out of bed.
Speaker 1 (08:33):
I noticed lumps and bumps in my neck and flewid
around my ankles, and I didn't want to go there mentally,
but I knew that if a patient walked into my office.
I was a third year medicinistation walked into my room
and I'm the doctor looking at them, I would have
been very concerned, and I would have specifically said, I'm
very worried that you have an aggressive lymphoma, and in
(08:57):
such an aggressive lymphoma that you know you might have
a few weeks to live of it was moving so rapidly,
but I was like trying to just block that out
of my brain while at the same time I knew
something really bad was happening.
Speaker 6 (09:09):
I even told.
Speaker 3 (09:09):
Grant one day he walked into the living room of
our apartment and he said, something.
Speaker 6 (09:16):
Is just wrong.
Speaker 3 (09:18):
I think I'm gonna die. And David, what, You're not
going to die? Like, what's gotten into you?
Speaker 4 (09:25):
How did you process that? Maybe just the stress of
med school getting to him.
Speaker 3 (09:30):
Yeah, I just thought that, you know, he was focused
on health, and I didn't think much of it, just
told him to, you know, relax, it's okay. A lot
of medical students go through this when they are in
medical school and they're learning thousands of different ailments that
can occur in the human body, and you start sort
of thinking about what's going on inside of you and
(09:52):
even get a little sense of paranoia. And overdiagnosis. It's
kind of a running joke within medical school. Everyone's sort
of diagnosing themselves and all the different things that could
be happening. And so I just thought it.
Speaker 4 (10:03):
Was that, in addition to the exhaustion and swelling, David
was noticing rashes and redness popping up all over his body.
It was clear that whatever was going on it needed
immediate attention, but David, being hyper focused, was determined to
make it through his OBGYN exam before turning his attention
(10:24):
towards himself.
Speaker 1 (10:25):
I remember, while I'm taking the exam, just like full
body sweating. I'm like shivering, I like can't keep my
eyes open. But I went from taking the exam and
I went down the hall and I just I went
straight to the er and they took me back almost immediately.
I just was I was so ill, and they did
blood work, and I'll never forget my doctor walking into
(10:46):
the room and saying, David, your liver, your kidneys, your
bone marrow, your heart, and your lungs are shutting down.
We have to hospitalize you right away. And I'm like
sitting I'm like, but I was just treating patients down
the hall like a couple days ago.
Speaker 2 (11:05):
We weren't taking a break at this point, and I
remember being on Facebook and seeing a lot of people
writing on his page and praying for you.
Speaker 5 (11:15):
I'm thinking about you. So I was wondering what was
going on.
Speaker 1 (11:20):
I hope that it was maybe some virus, because viruses
come and go. You might get really sick, but it'll
be gone at some point. We hoped it was a virus.
Didn't turn out to be a virus. We then thought,
maybe it's not an immune disease, but you know, none
of that immune disease tests were coming back, and then
that sort of left us with, like, what's the other
thing that could be caused in this sort of the big, bad,
scary thing, and that was lymphoma. But the tests we
(11:40):
were doing weren't giving us an answer. And that was
actually one of the last really vivid memories I have
from what then turned into hospitalization, where I just became
more and more confused and less and less aware of
what was going on.
Speaker 4 (11:55):
David and his family found themselves in an all too
familiar and painful situation, gathered around a hospital bed, only
this time David as the patient. Doctors performed a bone
marrow biopsy, pet scans, MRIs a liver biopsy, among other tests,
none of which provided clarity around the cause of these symptoms.
(12:17):
David was given high dose corticosteroids, a common practice in
the ICU when there is no clear path to treatment,
and as the days and weeks progressed, David's illness was
impossible to ignore.
Speaker 1 (12:32):
The physical morph was pretty incredible, and sometimes you have
to see the pictures to really understand, but I'll try
to describe what happened to me. So, because my liver
and my kidneys stopped working, what happens is you start
getting fluid all over your body. So I gained what
we estimate to be close to one hundred pounds. Now
(12:53):
imagine at the same time, you're not eating because you're
so sick and you can't keep down any food, and
your immune system is literally ravaging all your right organs.
So as a result, you lose all of the muscle
mass and any lean mass that you have. So you're
left with a body that has one hundred pounds of fluid,
(13:13):
has lost fifty to sixty pounds of muscle. You're just
bone and fluid everywhere. You're just like a swollen skeleton. Basically,
that's what I looked like.
Speaker 3 (13:26):
The pictures that we have of him in the hospital
are not even close to how bad it was. And
the reason for that was because David didn't want any pictures.
That's not how he wanted to be remembered. David thought
he was dying.
Speaker 4 (13:44):
David was airlifted back to his hometown to the hospital
his father worked out of. He spent seven more weeks
there until he improved just enough to be discharged, only
to find himself right back where he was one month later.
After months testing and hospitalization, David had a lymph node biopsy,
which returned some surprising results.
Speaker 1 (14:09):
I wasn't talking, I wasn't doing anything. I was just
laying there. So imagine there's eleven weeks of like my
dad and my two sisters just being there for me
through everything, helping me to breathe. I didn't want to breathe, like,
just fighting for my life. And the first moment where
like the three of them are not in the room,
it's like the moment when the sturse comes in. So
she's like, you know, I got the news. I just figured,
(14:31):
you know, i'd deliver it to you. And she's like
good news. It's not lymphoma. And then she looks at
the piece of paper because she like doesn't know what
the word is, like she's never seen it. She's like, uh,
you have something called castlemans.
Speaker 6 (14:40):
I'm like, well, is that good? Is that bad? She's like, well,
it's not lymphoma. Like it's great, I guess.
Speaker 1 (14:46):
And so here I am by myself and I'm like great,
it's like Castleman's like, I don't I'm a med student,
but I don't remember learning about it.
Speaker 6 (14:52):
I think maybe I heard it once in my life.
Speaker 3 (14:54):
So good news. We know what it is. So what
do you do when you first hear about something? I
learn more?
Speaker 6 (15:00):
You google it.
Speaker 3 (15:01):
Then you see the Wikipedia page.
Speaker 1 (15:03):
The way that it was described was that it was
just uniformly fatal and everyone died within a couple of
years of diagnosis. And I was just devastated to read
about this disease.
Speaker 4 (15:12):
Castleman disease is a rare condition that causes the immune
system to go into hyperdrive, attacking organs and bodily pathways.
In the United States, they're only about five thousand new
cases annually, with each prognosis varying based on the subtype.
David was unfortunately diagnosed with one of the most aggressive variations.
(15:33):
Desperate to quickly find a treatment that worked, David was
transferred to the hematology and oncology ward at Duke in Durham,
North Carolina.
Speaker 1 (15:43):
When I was at Duke for my second hospitalization, I
was so sick that my doctors encouraged my family to
say goodbye to me.
Speaker 3 (15:52):
It was shocking. You know, we were still very young.
It was the time in our lives where we were
energized to you know, we were healthy, we were young,
we were ready to go conquer the world. And to
see the person among us that seems the strongest transformed
so abruptly was startling. It was hard to process. I
(16:14):
didn't think it was even real, like, surely he'll just
be fine soon. And that changed dramatically for us when
they ultimately told him that they didn't know what else
they could do. I'll never forget the moment when a
priest came.
Speaker 1 (16:31):
In to read me my last rites. That was in
November of twenty ten. I was twenty five years old.
Speaker 3 (16:36):
Then a few of his friends came in and ultimately
hugged him goodbye. And I think everyone tried to keep
a positive outlook, you know you're going to be okay.
And I remember I couldn't really keep it together. David
and I talked about that a lot. He says that
he almost knew how bad it was when I came
(16:57):
in the room and you saw my face because I
couldn't hide help. Horrifying it was to see him in
that state.
Speaker 1 (17:07):
Yeah, And when you're administer your last rods, when you
say goodbye to your family, you don't do it like
thinking that I'm going to get another shot at this.
Speaker 6 (17:15):
It's like this is it.
Speaker 4 (17:23):
David, who had been the physical ideal of athleticism and
health just months before, was now unrecognizable, seemingly at the
end of his fight with Castleman, Caitlyn traveled to visit
him in the hospital. Despite no longer dating at the time,
there was still a connection between them.
Speaker 2 (17:41):
If this was going to be the last time, I
wanted to talk to him, just to hold his hand,
to see how he was doing.
Speaker 1 (17:50):
I can barely form sentences. I don't know what the
heck's going on. I'm confused, and this is going to
be the last time Caitlyn's going to see me. I'm
not going able to tell her the things that I
want to tell her. So she came to visit me
multiple times, and each time I had somehow communicated to
my sisters that I didn't want her to come.
Speaker 6 (18:08):
In the room.
Speaker 2 (18:09):
I thought that maybe she didn't know that I was
trying to see him, because you know, I had his
phone number, and I would reach out and I just
you know, wouldn't hear back from him.
Speaker 5 (18:18):
So then I would reach.
Speaker 2 (18:19):
Out to his sisters and just see And I did
think that they were maybe they were mad at me
because I broke up with him, and you know, I
thought maybe there was like something like petty, but like
there wasn't.
Speaker 5 (18:30):
They were just protecting their brother.
Speaker 1 (18:32):
I regret that, because who cares if I didn't look
like my former self? And who cares, you know, if
I didn't say the right words.
Speaker 4 (18:41):
David had now come to the brink of death twice
in a span of three months.
Speaker 1 (18:46):
Turned out that there were no FD approved drugs, but
there were a couple of drugs that have been tried,
particularly chemotherapies, and one of them worked for a little
bit of time, and then I started to relapse while.
Speaker 4 (18:57):
The chemo suppressed David's immune system stopped been Castleman from
attacking his body. It also took a heavy toll on
David's ability to fight, but there was one last hope
waiting for him in Arkansas.
Speaker 1 (19:10):
I learned that there was the world's expert was in
Little Rock, Arkansas. So I traveled out to the Mecca
Castle and Disease. I've been given the plan like I'm
going to be on an experimental drug. It was going
into going a clinical trial and everyone and it was
working for a bunch of people, and I was like,
oh my gosh, Like, you know, we'd been praying for
this for my mom and we never got it. But
now here we were for me, like maybe we got this.
This is like the drug we've been waiting for. And
(19:32):
you know, just before I was supposed to fly back
to North Carolina, which is where my family lives, to recover,
the test results came back from my Little Rock visit
that my labs were all horrible and my organs were
all shutting down again. So we actually were we were
actually in the airport in Little Rock getting ready to leave,
and then we just went back to the hospital. That
(19:57):
was the beginning of about a seven week long hospitalization
and where I.
Speaker 6 (20:00):
Sort of went off the cliff again.
Speaker 4 (20:03):
My gosh, you you had to go through this cycle
so many times. How did you find the strength in
those moments to just keep going?
Speaker 6 (20:14):
Yeah?
Speaker 1 (20:14):
I think for me, there were a few things that
helped me to keep fighting. I mean, for one, I
felt like I had this unfinished business to do. Like
I promised my mom, I was going to find drugs
for people suffering from diseases.
Speaker 6 (20:28):
And I'm a third year med student.
Speaker 1 (20:29):
I'm sort of like finally somewhat trained to start helping people,
and then now I'm going to go out and never
be able to do the thing that I promised my mom.
Another one was just the amazing support I got from
my family. My sisters never left my side, my dad
never left my side. I just wanted to be with
them longer, Like, I just wanted more time with them.
Speaker 4 (20:50):
Having traveled nearly one thousand miles to the world's foremost
castleman expert David recognized the continued cycle of chemotherapy with
catch up to him. That's when things changed. He was
no longer content to merely be the patient.
Speaker 1 (21:08):
My doctor explains to me that, like we've tried everything,
there's nothing else that we can do. And I just
hid rock bottom. I thought, I'm going to get to
work and tried to find a treatment for this disease
to save my life.
Speaker 4 (21:25):
We'll be right back with Symptomatic, a Medical Mystery Podcast.
Now back to Symptomatic, a Medical Mystery Podcast. David Fagenbaum,
once a college quarterback and powerlifting champion, was coming out
of his third hospitalization from Castleman disease. After the only
(21:49):
known drug to help treat Castleman failed, David went through
seven weeks of multi agent chemotherapy, daily blood transfusions and dialysis.
David and his family returned home to North Carolina, fearful
of when the next relapse would begin, but this time
he had a little extra support.
Speaker 1 (22:13):
So this stage, this is when I had lost my
hair from chemotherapy. I still had about fifty pounds of
fluid all over my body. My belly, you know, was
indistinguishable from someone who would be eight months pregnant.
Speaker 6 (22:26):
And Caitlin she was at my door.
Speaker 2 (22:31):
I didn't know how bad it was when I was there,
because no one gave me the details. When I was
reaching out to his sisters, no one said, this is it.
He's being read his last right. I didn't find these
things out until later, which almost helped.
Speaker 5 (22:44):
It kind of helped me cope.
Speaker 1 (22:47):
And she said to me, I want us to get
back together. I'd been hoping for that for so long,
but here I am with like this horrible, deadly disease.
I don't think any human could have more baggage than
I had at that moment, being like, or are you sure?
Like you know, I got a what going on? You know,
got this horrible, deadly disease, like are you sure? And
she looked at me like she was offended that I
(23:10):
was asking her that, like of course, like are you
kidding me?
Speaker 6 (23:14):
Like, of course, I want us to get back together.
Speaker 1 (23:15):
And it was like that's exactly what I needed.
Speaker 5 (23:18):
In that moment, I knew it was him.
Speaker 2 (23:20):
It was still him in there, so it just didn't
matter the physical appearance.
Speaker 4 (23:25):
Is there a moment that you look back where you
worried because it was just too much for David?
Speaker 2 (23:31):
I mean, it was definitely when his doctors said that
they've tried everything and there was nothing else that they
could do.
Speaker 5 (23:37):
That's when Dave was like, I got to take this
into my hands. What can I do for myself?
Speaker 1 (23:42):
If I'm gonna hope for a drug to save my life,
Like shouldn't I be acting or like doing something to
get there? So for me, it was okay, I'm gonna
get involved in research. I'm going to build an organization
called the Castle Clibor Network. I'm gonna start conducting laboratory
research myself, and I'm gonna get to work.
Speaker 2 (23:59):
In day fashion that how he copes, he's going to
fix it. So we were his doers, and he was
the fixer while he's in the hospital bed having ice
packs under his arms because he is fevers.
Speaker 3 (24:10):
And for someone who is as focused as Dave, there's
nothing that will focus you more in this life than
staring down that clock. You know, we call it a
dream team, but you know, David was the engine. David
was the force behind it all. He was quarterbacking it absolutely.
He slotted right in in that role.
Speaker 4 (24:29):
David spent the next six months at home regaining his strength,
and although the experimental drug still tuxamab, that David had
taken failed to help him recover, he was now using
it in hopes that it would work as a preventative measure.
He returned to medical school and got to work on
finding a cure for castlemen.
Speaker 1 (24:47):
We weren't just going to hope that Santa's elves were
going to like magically come up with some brilliant idea
and do the research. We simply said, what should we do?
We asked everyone that, and then we simply found the
best people in the world to do the things that
were prioritized to us. So that was one major shift,
and the other one was again a very simple realization,
and that was it costs between one and two billion
(25:08):
dollars to create a new drug from scratch, and that
can take ten to fifteen years for one drug. So
I didn't have a billion dollars. I didn't have ten
to fifteen years. So I say, okay, well, how else
could I potentially be treated? Well, all those chemotherapies that
I got that saved my life, they weren't made for
castleum and disease. What if there's some other drug out
there that wasn't made for Castle disease. I mean, the
chemo doesn't work long term, but it's saved my life
(25:29):
a few times. I appreciate the chemo. Is there something else?
So that became my mission. Can I figure out what's
going wrong in my body? And then can I figure
out is there a drug that's already FDA prooved for
some other disease that might actually be able to be
useful for my disease that I thought could save my life.
Speaker 4 (25:47):
David recruited experts from all over the world to join
the Castleum Disease Collaborative Network or CDCN, and diligently continued
his lab research to understand what was happening in his body.
Despite all the effort toward finding a cure, David experienced
a four to th relapse in April of twenty twelve.
After his longest stretch of stability. The now standard playbook
(26:11):
for flare up, David gets a massive round of chemo,
all while trying to maintain some sort of normalcy in
his life.
Speaker 1 (26:19):
So at this stage, Caitlin and I are engaged, were
engaged to get married in May twenty fourth, twenty fourteen,
and I know that I'm not going to make it
there at the current rate. I Actually my last relapse
was while I was getting weekly chemotherapy for the first
time ever. We were like, let's try it prementive chemo,
which is not a thing, but let's try it like
in advance and see if that'll stop it. And it
(26:39):
still roared its head, it's still exploded. Still put me
in nice you for a month. So that didn't work.
Speaker 3 (26:44):
It's impossible to work backwards from there to figure out
what went wrong that led to it. And it occurred
to us that instead of taking samples from his blood
while he was in the throes of these flares, we
should take those samples before and after, and we should
do it every few weeks so that we can study
(27:07):
maybe the progenitor markers of what is initiating this cascade,
and if we can find out what's going on early
before it goes full blown, maybe we can stop the
cascade from ever occurring.
Speaker 1 (27:21):
I've said goodbye to my family five times, and this
thing's gonna keep coming back. So if I wanted to
make it to May twenty four to twenty fourteen, I
had to take some action, and it had to be
a pretty in hindsight like sort of crazy step, and
that is to start testing one of these drugs that
I was studying in the lab on myself.
Speaker 5 (27:40):
And I was like, what are the side effects?
Speaker 2 (27:43):
You know?
Speaker 5 (27:44):
He was like, it could either work or you know,
it doesn't work. So I just I was very confused.
Speaker 2 (27:51):
I was like, are you sure, like yourself, you're going
to try this on yourself? And so I was very
unsure about it. I didn't have a lot of faith,
but this was going to work. I felt like we
were just going to be in the same place fifteen
months later.
Speaker 4 (28:06):
Was that your biggest fear?
Speaker 5 (28:08):
Yeah, that it was just going to be a cycle.
Speaker 4 (28:11):
As David battles Castleman disease for the fifth time, he
starts to put his research to the test, trying drugs
that will target the immune system. First on the list,
David started taking cyclosporin. While he showed no signs of improvement,
his condition didn't worsen, which seemed positive. He then moved
on to the second drug, ivig hope. David feel better
(28:35):
almost immediately. Blood tests were finally heading in the right direction,
only for Castleman disease to knock David down once again.
A few weeks later, it was back to the old
playbook and David had to undergo another massive round of chemo.
Speaker 1 (28:52):
There was some real heartbreak, right. It was like, Caitlin,
I've been doing this work in the lab. I've been
experimenting on my own blood samples and been experimenting on
flinto tissue. That's like the moment where you want to
try these drugs to see, like while you're getting worse,
like does it stabilize things?
Speaker 6 (29:05):
And it didn't, and that was heartbreaking.
Speaker 3 (29:08):
And the tricky thing about this disease is that you
don't necessarily know if it's working or not until you
don't have a flare. So you have to wait. And
these flares that happen about every year. So let's say
a flare occurs and then you realize the drug that
you're on didn't work, and now you try a new
(29:31):
drug after the flare subsides, and it doesn't just subside.
You have to obliterate your immune system with seven agent
chemo to stop it. And then once you survive that
onslaught of toxic drugs and you say, okay, now we'll
try a new drug.
Speaker 1 (29:47):
And I don't know how I survived that fifth one.
They gave me like humanly impossible doses. I was like
taking like large animal doses of chemo, but I knew
that it wasn't gonna work long term.
Speaker 4 (29:58):
I can't imagine watching someone you love suffer the way
he obviously suffered with all of those relapses, but particularly
in the case of the chemo, the treatment seemed even
worse than the disease. How grueling was it to watch
(30:18):
him go through a cycle of relapses.
Speaker 2 (30:23):
It was just like such a letdown when you would think, like,
he just did the chemo and now he's he's been
better for sixteen to eighteen months, and then all of
a sudden, you know, it happens again.
Speaker 5 (30:36):
It was just so frustrating, like.
Speaker 2 (30:38):
How many times can a body get this much chemotherapy?
Speaker 4 (30:42):
After recovering from his fifth barrage of chemo, David looks
at the last option on the table from his research
getting to know Castleman disease. Through their experimentation, Grant and
David learned that his subtype causes the bodily communication line
called intour to go in to overdrive. Mtour tells the
(31:02):
immune system to mobilize and activates tea cells to go
to war attacking foreign cells or in David's case, his
own I.
Speaker 6 (31:12):
Thought that, hey, why don't use an mTOR inhibitor.
Speaker 1 (31:14):
I mean again, it was very simple, as there was
too much This communication line looked like it was turned
into overdrive.
Speaker 6 (31:19):
Here's a drug that turns it off. Let's try it.
Speaker 3 (31:22):
We were at a point where there was a no
regret move to try something else, and that was something
called serri limis. It is isolated from a fungus found
in the soil of Easter Island. It hits the mtour
pathway and reduces T cell activation. Maybe it could prevent
(31:45):
the cascade that ultimately led to cytokind storm that would
attack his body.
Speaker 1 (31:49):
This was the third and frankly probably the last possible attempt.
There weren't many more drugs on our list of possibilities,
and there wasn't much more time, so it was the
last ditch effort after like many last.
Speaker 4 (32:02):
Ditch efforts, Now taking the only medication left on the table,
David and Caitlin did have something worth looking forward to
their wedding. But what was weighing on David's mind the
issue of the hair on his head, or lack thereof.
Speaker 3 (32:20):
I remember we were in the hotel room getting ready
for the wedding and he had just started to grow
his hair back. He was so protective of every hair
on his head. You know, it didn't look good. It
was just kind of like thinly there and a little
bit on his neck, and like I was, like David,
(32:41):
let me, just shave these hairs on the back of
your neck so you can look nice and trim for
your wedding day.
Speaker 1 (32:48):
And I told him absolutely not, because my hair had
just come in, Like I got like my hair started
to grow like two weeks before my wedding day, so
it kind of looked like I just had this like
very short buzz cut or something. But yeah, I had
your neck hair had grown back, and Grant's like, let
me clean you up.
Speaker 6 (33:04):
It's your wedding now.
Speaker 1 (33:04):
I'm like, no, like every every follicle matters, like you're not.
There's every hair that is on my head, it is
staying there.
Speaker 5 (33:12):
I love that.
Speaker 3 (33:14):
But it was just awesome because, like I said, after
I hugged him goodbye that day, I didn't think I'd
ever seen him again.
Speaker 4 (33:22):
Having already been through until death do us part? What
did it mean to exchange vows? What did your wedding
mean to you? On a deeper level.
Speaker 5 (33:35):
It was so powerful.
Speaker 7 (33:36):
It was like those words were so real where I
feel like people just say those as their vowels, but
really we meant them so much to each other.
Speaker 5 (33:49):
We had already been through it. Yeah, it just meant
so much to us.
Speaker 4 (33:53):
As David and Caitlin now looked towards the future. They
couldn't help but be troubled by lingering thoughts of fear.
Will Castleman disease return, and if so, what other possible
options are left on the table.
Speaker 3 (34:07):
We didn't know right away if it was working or not.
Speaker 2 (34:10):
We kind of just waited each month and we're like,
is it coming?
Speaker 3 (34:14):
Is it coming? We had to wait a full year
to see if he was going to undergo another flare.
So eight months go by, we're on the edge of
our seat. Twelve months go by, we're watching and waiting.
Fourteen months, sixteen, eighteen.
Speaker 5 (34:32):
Nineteen months, twenty months, twenty.
Speaker 3 (34:34):
One months, two years go by, and it.
Speaker 2 (34:36):
Wasn't coming back. We were kind of like, oh, my gosh,
something's working.
Speaker 3 (34:41):
Months and months after, longer than he'd ever been in
remission or not in flair. My god, my god, he's okay.
We think we found a cure.
Speaker 1 (34:55):
This cri linemus. That's the one that worked, and that's
why I'm here and on this podcast right If it
didn't work, I'm not here. Ten years ago is when
I pass and I'm you know, very much a memory
for Caitlin and my family. But it's because we connected
on that last one that I'm still here and that
that now I can continue to pursue this for other people.
Speaker 4 (35:22):
How did this shape your perspective once it went into remission,
if I may use that word.
Speaker 1 (35:32):
Yeah, absolutely, I do like to use that word. And
ever since this permission started, I just have this feeling
of overtime. It's like, okay, like I don't know when
the disease could come back, and of course there's more
and more days go by, the more confident I feel that,
you know, maybe we've really, you know, gotten this disease
under under full control. But it's just given me this
urgency where it's like I got to do as many
things as I can do.
Speaker 2 (35:53):
When we finally got off the hamster wheel, Yeah, it
was just like I can just like feel even saying
it to you right now, I can feel like wait,
just coming off my chest, like in that moment, we
were so relieved.
Speaker 4 (36:11):
David Fagenbaum was pushed to the brink of death five
times before finally finding a medicine that sent his Castleman
disease into remission. David and Caitlin didn't just make it
to their first wedding anniversary. They're now celebrating their tenth
and counting, along with the two adorable children they welcomed
along the way.
Speaker 5 (36:30):
We're just so much more grateful for the small things.
Speaker 2 (36:33):
Amelia's having her preschool graduation and now Dave gets to
be at like her preschool graduation, so like huge milestone
for our family. We're just so grateful for that, just
having him be able to come to her dance recital.
We're just so grateful that we are in this overtime
for our family.
Speaker 5 (36:50):
And I truly believe our overtime is going to go
on for.
Speaker 2 (36:53):
A long time.
Speaker 4 (36:58):
Just as living through his mother's cancer treatment pushed him
to study medicine, living through Castleman disease lit a new
fire within David.
Speaker 1 (37:07):
You know, after finding out that serria limus could save
my life, all I've been able to think about for
these last ten years is how many more drugs are
sitting out there they could be life saving for other people.
I mean, I was walking back and forth past this
CVS that ended up being the place where I got
my serrial limis from for years it was always there,
and like for years, I'm sick with this horrible disease,
(37:29):
I'm in the ICU, and then I'm home, and then
I'm back in the ICU, and all along that pill
bottle with serrial limis, And it had been there because
it's a proof for kidney transplant rejection and it's utilized
by people all over the world, but it's not used
for Castleman's. And it's like, oh, my gosh, how many
more of those drugs that your CVS could be life
saving for you or someone you love. I mean, like, like,
(37:51):
what is the untapped potential within our medical system?
Speaker 4 (37:55):
And Grant, you decided to join him in this pursuit.
Speaker 3 (37:59):
Yeah, And we called all the researchers in the world
that might know anything about this disease. There are only
twenty of them or so, and we invited them all
to a conference. And I'll never forget sitting there at
the head of the table with David. So this is David,
I'm Grant, you know, and we're here to cure Castleman disease.
And just seeing these researchers who had been at this
(38:22):
for years around the table kind of chuckle and say, okay, kids,
you know, good luck. You know, we'll try and be helpful.
It's just one of those moments where we were young
and naive enough to have the audacity to think that
we could do anything.
Speaker 4 (38:38):
Unlocking the off label potential of approved medicines will quickly
be put to the test. In Part two of David's story,
join us next week as David crosses paths with another
patient battling Castleman disease, Gary Gravina, who is clinging to
life during a terrifying flare up.
Speaker 8 (38:55):
My wife started to notice that my stomach was getting larger,
and I wasn't really eating because I felt so ill,
and so for me to be putting on weight was weird.
I'm thinking, well, this is going to be something really
simple and they're going to take care of it. And
then when they started talking about admitting me, I'm like,
come on, this is this is not something like that.
(39:16):
I don't need to be in the hospital. This is ridiculous.
By the end of that week, I was in a
medically into his cooma.
Speaker 4 (39:22):
Having beaten back his own Castleman disease. David is determined
to help Gary fight his.
Speaker 1 (39:28):
I'm told, hey, there's a patient with your subtype of Castleman's.
You know, this very rare subtype. All of his organs
are obviously failing, and he looks just like me when
I was at my sickest. I remember telling him that,
you know, we're going to beat this.
Speaker 4 (39:44):
But when David's course of action for Gary doesn't work,
they find themselves thrust into the same desperate race against time.
David knows all too well.
Speaker 8 (39:53):
I was in a coma and I was just, you know,
everything in me was tanking, all the fingers connected to you,
and you're just kind of you feel apart from everything,
and I can just remember crying tears of frustration.
Speaker 4 (40:16):
Symptomatic Medical Mystery Podcast is a production of Ruby Studio
from iHeartMedia. Our show is hosted by me Lauren Brett Pacheco.
Executive producers are Matt Romano and myself. Our EP of
post production is James Foster. Our producers are Sierra Kaiser
and John Irwin. And this episode was researched by Diana
(40:37):
Davis
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