cover of episode Case #18: Gary (Part 2)

Case #18: Gary (Part 2)

2024/7/30
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Previously on Symptomatic. David Fagenbaum, a college quarterback deeply impacted by his mother's fight with brain cancer, was a prime example of peak health and motivation. The moment that I saw her dealing with her cancer, I just said, this is what I have to spend the rest of my life doing. And by this, it's taking care of people with horrible diseases and it's searching for treatments so that people don't suffer.

But during med school, everything quickly came crashing down when Castleman disease took him from treating patients to the brink of death in a matter of days. I was so sick that my doctors encouraged my family to say goodbye to me. I'll never forget the moment when a priest came in and read him his last rites. In this moment of sorrow... I remember I couldn't really keep it together. I couldn't hide how horrifying it was to see him in that state.

After exhausting all the treatments available for Castleman, David's body was ravaged by chemo and he was out of viable options. That's when he decided to take matters into his own hands. I had to take some action and it had to be a pretty crazy step and that is to start testing one of these drugs that I was studying in the lab on myself. All the drugs I was studying in the lab were all FDA approved for something else. They just weren't used for Castleman.

After repurposing a medicine originally designed for kidney transplant patients to send his disease into long-term remission, David was determined to prevent others from that similar dead end. His theories around expanding the approved uses for certain medicines would quickly be put to the test seeing Gary Gravina fight for his life against Castleman, just like David had a few short years before.

Yes, his heart is technically beating. Yes, he's technically breathing because of what we're doing medically. But he's not going to come back from this. And I just remember being so devastated to hear that. And then at the same time, remember still running down the hall to the lab and still running the experiments. Because like, who knows? There was at least one night in both of my flares where it was just that close. I was in a coma.

You know, everything in me was tanking and I can just remember crying tears of frustration. How terrifying would it be to fight an unknown enemy? One you didn't recognize and didn't see coming. What if that enemy was coming from within? A disease that even doctors couldn't identify. Nearly half of all Americans suffer from some chronic illness and many struggle for an accurate diagnosis.

These are their stories. I'm Lauren Bright Pacheco, and this is Symptomatic. Gary Gravina built a life working with his hands, first as a Marine and then as a carpenter for over 27 years. He felt fulfilled when he could craft something, even if it was just a song on his guitar. Before Gary would face a fight for his life, he and his wife, Stacey, had been hit with their first seemingly insurmountable hurdle.

Let's see, seven, eight, about nine months after we all moved in together, my stepson Jacob presented with a seizure and had a diagnostic journey that the end result was that he had brain cancer. And so we were heavily engaged in fighting that for just over a year. They had given him six months to maybe a year to live as the original prognosis, but

which being Jake, he beat that by a week. Wow. It was huge. It was traumatic. And there was all this medical acquaintance that we wish we never had. And when the doctor said there was nothing more they could do, we were preparing hospice and we had the hospital bed being sent here. Oh, Gary, I'm so sorry.

Yeah, thank you. So you had already been through the ringer before you even realized you had symptoms. Yeah, something like that happened and you think, wow, that was the most awful thing. And you kind of in the back of your head, you're thinking that must have been our big awful thing that we have to overcome. But it was not long until Gary started noticing his body change. Heavy fatigue made getting through the day more of a chore than usual.

Looking back now, what are some of the earliest symptoms you can pinpoint? The morning when I felt ill, like I felt like I had a flu, but I could not push through it. I could not get up and go to work. And I mean, for the previous 18 years, I think I had taken off two and a half days of sick time.

I just did not miss work. If I felt sick during the day, I pushed through the end of the day, I got some rest that night, and then the next morning I came in and started to feel better. But this wasn't happening, and I took one day off and I did not feel any better. And so I say it felt like a flu, that achy feeling, that drained feeling, and the swimminess in my head. My wife started to notice that my stomach was getting larger, and I wasn't really eating 'cause I felt so ill.

And so for me to be putting on weight was weird. So Stacey said, you know, we have to get you to the doctor. The next thing I remember was being at the doctor and him listening to my lungs and saying, you need to get to the hospital. Wow. And at what point did they realize they were dealing with something far more serious than the flu? That whole first day at the emergency room,

I'm thinking, well, this is going to be something really simple and they're going to take care of it. And then when they started talking about admitting me, I'm like, come on, this is not something like that. I don't need to be in the hospital. This is ridiculous. I just, this sense of this, this is all just a big mistake. By the end of that week, I was in a medically induced coma. And I don't think I really squared myself with that until I woke up, you know, three and a half weeks later, what was going on.

Going into the hospital, it was this sense was frustration like this. We just need to find the thing that this is. And this should be a simple answer. I shouldn't I shouldn't be here.

Though Gary didn't know it, as he endured the challenges of his undiagnosed Castleman disease, David was hard at work in a lab not far away. Through the creation of the Castleman Disease Collaborative Network, or CDCN, David was honoring his mission to repurpose drugs that could treat Castleman disease and other immunodeficiency conditions.

There are only 3,000 FDA-approved drugs, and 95% of rare diseases have no medical-approved treatment in terms of medication. That's right. There's so much here. I mean, all I've been able to think about for these last 10 years is...

how many more drugs are sitting out there that could be life-saving for other people? And what we've learned, the more I've done it, the more I've just been blown away by the fact that of those 3,000 drugs, the vast majority of them are generic. Over 80% of them are generic, which means that they are very inexpensive and they're not profitable any longer because once a drug becomes generic, then multiple manufacturers can make that drug, price plummets. And so what that means is that our medical system doesn't study drugs

Over 80% of our drugs that are at the CVS to find new uses for them because there is no incentive within our system. And it's like, wait a minute. Of the drugs, the 3,000 that can help us, 80% of them are not being studied? That's crazy.

It wasn't always smooth sailing for the CDCN. David shared his dream with Grant, his best friend from medical school, but they were up against lots of skepticism from the medical community to make it happen. Tell me just a little bit about thinking outside the box in terms of

wanting to evaluate medicines that already had FDA approval, but for off-label impact. Yeah. And maybe before I do that, I'll tell you one more story about our sort of naive optimism. When we first realized that we were going to try to be they, we called it

everyone we knew to currently be they, which was all the researchers in the world that might know anything about this disease. There were only 20 of them or so. They were in France and Japan at the NIH. And we invited them all to a conference that they might have been interested in attending anyway and said, "If you're already going to be there, you know, please come to this side room with David and I to discuss Castleman disease research." And I'll never forget sitting there at the head of the table with David

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

This passionate naivete needed to change from an inspiring concept to a reality quickly if it was going to save Gary from irreparable damage. After the first flare-up, Gary was now going in and out of medically induced comas, clinging to life. He was eventually diagnosed with Castleman disease, the same disease that plagued David years earlier. However, the diagnosis didn't guarantee a clear path to effective treatment.

When you first woke up and you felt and saw the physical transformations of your body coming out of that coma, how surreal was that for you? That must have been honestly like living an episode of The Twilight Zone. Yeah.

Yeah. Coming out of a coma, at least for me, was nothing like they show it in TV and movies where you open your eyes and you look up and you see your loved one and you remember the last thing that was going on. It's a kind of a slow drift back toward reality. And then also, you know, as the head of the family, I can't imagine how heavily it weighed on you that this is happening again and you're not there anymore.

to physically fight it. Yeah, that was huge because with Jacob, I was by Stacey's side as a caregiver helping her take care of him. And then in this situation, suddenly Stacey was back in the role of caregiver and my condition was plummeting. And part of the reason I was so frustrated and wanted to figure out the simple thing that this had to be was that I didn't want to be the reason that Stacey went through that again.

grappling with guilt on top of the physical fight for his life, even as additional symptoms pile up. And so I woke up with purple hands and they felt gravelly, they felt sandy. They were numb, but also uncomfortable. You know, it was not the biggest pain that I had, but it was very uncomfortable because I've always used my hands for everything I do. And so to have them not there was really, it was freaky.

Once I did wake up, I had to be fed by hand because my arms were so weak and my stomach had grown so large, like I couldn't put my hands together. I didn't have enough strength to reach up that high. So Stacey was spoon feeding me my food when I came out of the coma. When people talk about having an advocate, man, I had the best doctors and nurses in the world. And I mean, I'm very grateful for that, but I would be dead.

I would be dead without Stacey if she hadn't been there to do what she did. The local doctors had exhausted all of the known treatments for Castleman disease and had decided to transfer Gary to the hospital of the University of Pennsylvania for more help. David Fagenbaum had released a study on Castleman disease. Actually, the day I went into the hospital, he published this in Ash Newsletter for Hematology.

Because I think the journal is called Blood. It is. And someone at the second hospital had seen that article. One of the people said, well, this guy, he has the disease and he's fighting it. And so I ended up down at Penn. And I'm told, hey, there's a patient with your subtype of Castleman's, you know, this very rare subtype of Castleman's that's here in the ICU. Can you go up and see the patient? And at this stage, I'm working in the hospital. I'm running this center that does a lot of research. But I'm like,

fiercely avoiding the ICU. Like, I don't want to walk anywhere near the ICU. I got some bad memories when I was in the ICU. And I was nervous. It was almost like I was nervous like you would be for a job application. Like, I hope he lets me in. You know what I mean? It's so weird. And of course, you just hear, you know, doctor, researcher,

and you hear the name dr faginbaum and it's a beautiful name it just it kind of sounds like old doctor so i'm picturing an old gray-haired guy with glasses and and probably broken from the disease but still moving on and then this young guy comes in looking full of life and like all the fight in him and the spirit and the

keenness of his intellect and how compassionate he was. It was just like, wow, okay, I'll take a pass on lymphoma. I'll take what that guy has. It's the craziest thing. I remember it like it was yesterday. I see a patient in the bed and

who is so sick. All of his organs are obviously failing and he looks just like me when I was at my sickest. Like he's got the fluid. When you lose the muscles in your face, you're, you sort of look like, you know, you have these dents next to your eyes, everything. It was like, I'm looking, I'm like, Oh my gosh,

A, he just looks so much like me. And then B, I look and I see his wife, Stacy, and I like see in her eyes, this deep concern, this care, you can just see right away that like, you know, this is her everything right now in the hospital bed and she's losing him. And it's like, you just feel it when you see her. And then I look at this window and I'm like, I recognize this view.

You've said that when David first visited you, that you immediately clutched at the hope that you could get there, that you could get where he is. Did that tap into your marine determination spirit? Yeah, and in particular, that he was leading a research effort and said that I could contribute to it.

that I could not only fight my way out of the bed, but help him fight the whole disease was huge. To turn from this helpless 260 pound bag of fluid into somebody who was fighting was a huge turning point for me. Up until that point, it was something that I was looking for. And that was part of my frustration. Like, why can't we take care of this? Why can't we hit this back?

And so that was the turning point where he said, you know, will you contribute samples to the research? And that was a no brainer. I was I was like, hell yes. I remember telling him that, you know, we're going to beat this. And I really believe it because I'd been in his bed. Although a minute or two later, I learned that literally had been in his bed because when I walked out, one of the nurses came over and gave me a hug. And I actually didn't know who she was or what was going on. And she said, I was your nurse.

when you were here a few years ago which i didn't realize because again when you're in the icu oftentimes you know you're just out of it and so i didn't realize that and she said and this was your hospital room and i was like oh my gosh that's why i recognize that view out the window because like that's the window i've been looking at for weeks and weeks and weeks and i just dreamed it was like one day i could get out of here i get the hairs on my on my arms stand up and that it's amazing

In the same exact shoes and room as David once was, the challenge was now to rethink Gary's treatment. Under the care of David and the CDCN, who were busily working behind the scenes on repurposed treatment options for rare diseases, there was a renewed sense of hope.

Well, first he got a Castleman's drug that we thought would work and that drug seemed to work a little bit. And then he relapsed and then we ended up giving him a bunch of chemotherapy that sort of seemed to work and get him out of this thing. But the question became, how do we keep it from coming back?

we were getting blood samples on Gary basically every day. And as soon as we get the blood sample, we'd run down to the lab, we'd run something called flow cytometry. And, um, we were getting results back and looking at those results and then saying, you know, is there a different drug we should be using based on what we're seeing in the lab?

And it was like this race against time. It was clear to everyone that Gary's time was running out. His body was too weak to push through continued chemotherapy. David and the CDCN needed to produce results immediately if they were going to save Gary's life.

I get so excited every time we save a life and we find a drug that can help someone. And that's, it's just incredible. But even more incredible, or at least even greater of a feeling than how thankful we are when it works, is just how devastated we are when these drugs don't work. And it's both of those emotions that just...

drive us to keep working. You get a carrot and a stick and it's just like you're just constantly chasing and you get constantly motivated by both the people who are here because of our work and also the people who aren't here despite our work.

Gary, was there a time that you felt like it was pointless to keep fighting? Were you in that much exhaustion and pain at any point to think, I can't do this? And what was it that pulled you out of that? So I would visualize them as scenarios, but what I kept feeling was myself approaching some sort of a boundary or a

a doorway or that sort of thing and it wasn't like a blessed realm where your loved ones come and say hell is not your time or you know there were no no singing or anything like that I would always see my wife and my kids and I would turn away from that and turn turn toward them with my will the first flare was I am not going anywhere near there I want to find the way toward what I knew

I wanted to find my way toward awareness. I was so frustrated that we know what this is. Why am I still here? Why am I stuck in this state? None of us like the lows. I wish I could give all these lows back. But the lows, in some ways, can really create this sort of like potential energy or like this like slingshot effect. And then it's that, you know, horrible moment that results in action and that action results in something that we celebrate.

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

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

Thank you.

These are not all the possible side effects.

Kaskali is available by prescription only. Talk with your doctor and visit Kaskali.com for more information for patients and providers, including full important safety information and patient prescribing information. That's K-I-S-Q-A-L-I dot com. Now back to Symptomatic, a medical mystery podcast. Gary Gravina, a former carpenter and marine, went from his usual routine to being placed in a medically induced coma within a week.

Having supported his wife through the loss of his stepson, Gary was determined to prevent her from experiencing that pain again. But after the treatment for his Castleman disease had failed, Gary's last hope was the research on alternative treatments from Dr. David Fagenbaum.

Initially, though, I know that they had tried a medicine that had worked on other Castleman's patients that didn't work on you. Was there in those initial attempts to find what for you could be the silver bullet, was it devastating or was it more just like bring on the next? No. And when I think about David having five flares, there was a difference in my energy.

I was on ciltuximab to get out of the first flare and I thought that was going to do it. And I think after my third treatment, my blood all looked like it was trending in the right direction. And then like a week later, I was going into my second flare and it was just not working anymore. It had quit. And I thought, oh no, not again. Like, can this just be some other thing that's going on, a side effect? But it had that same feeling, that same feeling.

I cannot lift myself to push through this. The day before at physical therapy, I was pushing and pushing and getting better and better results every day. And there was stuff I just couldn't do that day.

And the physical therapist said, you know, make sure you reach out to your doctor and let them know that you've had this little turning point. Despite some signs of relief and a brief return to routine, Castleman continually returned, sending Gary back to the ICU and David back to the drawing board. Even during my second flare, being comatose again, that fueled me.

the anger that we know what this is. Why am I stuck in this state again? And you're in the ICU room and all the things are connected to you and you're just kind of, you feel apart from everything. And you start to wonder, why am I being singled out? Like, am I being punished? What did I do? I must have done something to deserve this. And I can just remember crying tears of frustration.

David, it has to be kind of like solving a puzzle and playing chess at the same time. Yes, that's exactly right. And I think that for me, you know, before I got into this world, when I heard a doctor say, we've tried everything, there's nothing more that we can do, I sort of assumed that meant that like there were no more chess pieces on the chessboard and there were no more puzzle pieces. But I think what I've subsequently learned is that

is that when a doctor says we've tried everything, many times I think they are right and that there isn't actually something that could help that patient. But in many times, I also believe and I've seen and witnessed that actually there is something we can do. There is that chess piece that's on the board, but we, the medical community, just haven't unlocked the potential of it.

Grant breaks down why rare diseases are often referred to as orphans. An orphan disease is very much what it sounds like. It's a disease that very few people get defined by less than 200,000 people having it. And it actually represents the majority of the diseases that are out there, depending on how you count diseases. But let's say if there's 12,000, the vast majority, let's say almost 9,000 of those are rare diseases.

And most of those don't have an approved treatment, not a single approved treatment. 95% of rare diseases don't have a single FDA approved treatment. Wow. Because there's not the money in it because the numbers aren't driving it. Yeah. And, you know, the pharmaceutical industry, it's a business and there are shareholders and there's fiduciary obligations to those shareholders to make money and return their capital.

So I don't blame them for not focusing on diseases that don't make money. That's how the free market works. But that means that there's a lot of diseases that ultimately get neglected and there's no incentive to focus on them. And so that really bothered us. Gary, David talks about a point where he was told by one of the nurses that you weren't going to make it. Yeah. And I think there was at least one night in both of my flares

where it was just that close, but I was in a coma and he was there with Stacy during the second flare and I was just, you know, everything in me was tanking. He was on a ventilator

He was receiving what are called pressers, which is basically when your heart's failing, you give drugs to keep the heart beating as best as it can, even though it's like basically dying. Without the pressers, you die. But just trying to say, you know, we're still looking for drugs for you, Gary. I'm going to take your sample to the lab. We're going to keep fighting for you. And as I walked out of his room, I remember his nurse pulling me aside and saying...

Dave, this is it. You know, I'm an ICU nurse. This is what I do. I'm seeing the changes in his hands and his feet that occur when there is no coming back. Like, yes, his heart is technically beating. Yes, he's technically breathing because of what we're doing medically, but he's not going to come back from this. And I just remember being so, so devastated to hear that. And then at the same time, remember still running down the hall to the lab and still running the experiments. Cause like,

Who knows? And he was telling Stacy, there is hope. Don't give up hope. And as he was leaving, this ICU nurse who had actually been there when he was there said, you should not have told her that. You're giving her false hope. He's not going to make it through the night. And my understanding is she went in and told Stacy, he's that bad. You need to be ready for that. And we still ran the flow cytometry on a sample, and we still thought about what could the next drug be. But I made it through that night.

Gary not only survived the night, but made it through the entire flare-up. David and the CDCN found a treatment regimen that put his Castleman disease into remission, one that was originally developed and approved to treat lymphoma. As the weeks passed and turned into months, they realized this repurposed medicine had given Gary a second chance at life.

So, David, if you can think of what, if you look back, is probably the highest, happiest moment in terms of Gary? There are a few. I think seeing him get into a wheelchair and get rolled out of his hospital room was just amazing. You know, shortly before that, we didn't know if he was going to make it. And then now I got to watch him, you know, get wheeled down the hall. If I don't feel a flare coming on, I have today. And today is beautiful. It's good.

It makes me enjoy moments more and it makes me more ready to accept other setbacks because I have a different sense of scale and proportion when problems arise. I see what can continue. I see a way to fight through those things a little better knowing that, you know, if I wake up tomorrow, that could be the last thing I remember for a long time before I have to start that fight all over again.

Grant and David maintained their collaboration through the early days of their divergent career paths, continually coming back to the idea of scaling the CDCN's research. Impacted by Gary's experience and the rise of AI data aggregation, they saw new potential for revolutionizing their approach to repurposing medicines. And so Grant and I spent a lot of time thinking about, could we start an initiative, an effort to try to

unlock more uses for FDA approved drugs. And about two years ago is when we launched this nonprofit called Every Cure. And we are on a mission to unlock the life-saving potential of every FDA approved medication to treat every disease that it possibly can. There's nothing more motivating than seeing a patient that is now able to be with their family and live their life to their fullest because of the science that you did. It's an amazing experience.

thing that you get to participate in. And so that's always the sort of the guiding light, the North Star. So David, how did Gary's case play a big part of the evolution of Every Cure? You know, my book's called Chasing My Cure because of course this all started out, well, even before Chasing My Cure, it was obviously witnessing my mom's battle, but this all really started with Chasing My Cure and

And I've said before, and I really believe it, we should have called it Chasing Our Cure because as you know and as you've heard us discuss, there were a lot of people part of this. It was actually not me. It was a lot of us. But it started out that way. But then for every patient like Gary, for every patient like Kyla who's getting ready to go off to college because we discovered a drug to save her life just before she would have passed, and patients like Joseph who right now is recovering after we found a drug to save his life just a few months ago.

So each one of those patients has just led us to say, we are so happy we did this for them, but how many more are there out there? And what began to dawn on us throughout the years, because my career went off into the world of machine learning and AI, was that the way to unlock this problem that we have been able to start as a business is potentially to use artificial intelligence and structure it as a nonprofit.

And that was really what unlocked our next sort of journey, which was Become Every Cure. Grant, it's brilliant. It really is. A lot of people are frightened by AI, but I can't think of a more wonderful way to utilize it. This technology could be utilized in maybe a different context. That maybe instead of focusing on one drug and one disease at a time for a company, it

Maybe we could widen the lens. Maybe we could look across all diseases and all drugs and find the interconnectivity between them to figure out which drugs should work for which diseases.

With all the conversations and fear around AI and its evolution upending certain industries, it's heartening to see a powerful and potentially transformative application to save people's lives and offer different treatment options for rare diseases.

Over the last few years, even just the last two years, there has been so many advances. So that whereas what we used to do in my lab where we would study Castleman disease, for example, or related diseases, you know, we spend years working on a proteomic study or genomic sequencing study, for example, years to come up with an insight.

We're really proud of the progress we've made. But now, utilizing artificial intelligence, we can actually apply AI to the world's biomedical knowledge. And we would talk all the time about what is the potential here? What is the potential to scale what's happening in the lab by doing it in the data environment?

and then doing it beyond just one drug and one disease at a time. And we would check in on this every few years. 2016, it wasn't really possible to think as big as we were thinking. The data just wasn't there. And it really wasn't until the last few years that it started to dawn on us that maybe something truly was possible here. So ultimately what we do is we compile every kind of data that exists in the world

that might be able to link one biomedical concept to another. So does a drug hit a target? Where is that target on this protein? What gene generates that protein? What pathway does that protein sit in? What cell type? What organ system?

Of course, the predictions are not going to be perfect and we're not going to say, oh, just because it's number one on our list, it's going to work for everyone. We still need to do clinical trials. We still need to validate it. But the ability to focus in on all the possibilities to the ones that look most promising is just something that's never been possible before in human history. Grant, what are you most proud of in terms of EveryCure? I think I'm most proud of the fact that we have not let this go.

And then I'm so proud of the people that come and join our team. These are some of the smartest people in the world that could have higher paying jobs, that could be in Silicon Valley doing other things. And they are compelled by this mission. They're compelled by the ability to relieve suffering and save lives. And they're compelled by the

The opportunity to create an engine that should outlast us and will save lives in perpetuity, whether we're working at every cure or not in the future. We want to create something that lasts and something that has major impact. Over 15 drugs where we've identified and or advanced a repurposed drug for disease they weren't intended for. And I'm so proud of that.

Through the work at the CDC and Every Cure over the past 10 years, David and Grant have tirelessly worked to prevent others from enduring the suffering of orphan diseases. David and Gary were both on the brink of death, told there was nothing left to do, just to find out that a medicine that already existed could be the cure. Despite having every reason to give up, they persevered.

Gary, what do you want people to take away from your experience and what got you through it? That's a toughie. So through the CDCN, I try and act as an ambassador to other people who are facing Castleman disease and just let them know that they're not alone. It was right after my last round of chemo and the second flare that I attended the first patient loved one summit.

And suddenly I was in a room full of 60 people who had Castleman disease or who had a loved one who had Castleman disease. And so when I talked about that sense of having felt singled out and being punished,

That was the polar opposite. That was a huge turning point to be around other people who they're describing things and I'm like, yeah, I get that. So that was a big thing for me to really learn to enjoy connecting with people. And you just have that sense of other people being with you. You fight better when you have somebody by your side. Especially someone like Dr. David Fagenbaum.

I have to tell you, it is such a comfort to me to know that people like you exist. And I am deeply indebted to your mother. Thank you. And to your father, your sisters, to Caitlin. Because anybody who has gotten you through what you've gone through to make it possible for me to be sitting and talking to you today, I am honestly in their debt. And the world is too. I don't say that lightly.

What do you want people to take away from your story, from your personal challenges? I think the things that immediately come to mind are that no matter how tough things get, no matter how low the odds are, no matter how difficult things are, I think just realizing that there may be a path out of this. At the same time, I think it's also important to emphasize that the path out is

isn't necessarily going to be delivered on your door. And that for me, the reason I'm alive is not because I got really lucky multiple times. It's because I had the right circumstances around me, the amazing family, the amazing support, and I started taking action. And that doesn't mean that anyone who's dealing with illness or death needs to start experimenting on their own blood samples or starting a grief organization. But it does mean that

that you need to take action in ways that make sense for you. And so that might be getting involved with the disease organization for the disease that you have. It might be driving in your car to the world's expert because like, you know, your local doctor isn't doing what you need. I do think it takes action.

If you'd like to find out more about the work Grant and David and the rest of the team at EveryCure are doing, visit everycure.org. They emphasize the importance of raising awareness and donations as the best way to support their ongoing efforts.

My name is Gary Gravina. I'm David Fagenbaum. And I fought Castleman disease for nine months. And after nearly dying five times in three years from a deadly disease called Castleman disease, David Fagenbaum and the CDCN came up with a regimen that has held me in remission. I've now been alive for over 10 years. For almost eight years now. Thanks to a drug that I discovered that had been sitting on my pharmacy shelf

all along. And now I'm on a mission to try to find as many more uses of existing drugs as possible to save as many lives as possible. Next week on Symptomatic, we dive into the modern landscape of prostate cancer and care. We'll explore emerging therapies, new research, and some of the biggest hurdles faced by both patients and healthcare professionals when trying to fight this deadly disease.

We're also excited to announce that Symptomatic will return for a full season later this year. Thank you for trusting us to share your stories. If you've experienced a mysterious diagnostic journey or have a story of interest you want to share, reach out to us at symptomatic at iheartmedia.com and keep an eye on your feed. Until then, stay well.

Symptomatic, a medical mystery podcast, is a production of Ruby Studio from iHeartMedia. Our show is hosted by me, Lauren Breitpacheco. Executive producers are Matt Romano and myself. Our EP of post-production is James Foster. Our producers are Ciara Kaiser and John Irwin, and this episode was researched by Diana Davis.

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

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

Thank you.

These are not all the possible side effects.

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