← Symptomatic: A Medical Mystery Podcast
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- [00:01]
Lauren Bright Pacheco
Previously unsymptomatic David Feigenbaum, a college quarterback deeply impacted by his mother's fight with brain cancer, was a prime example of peak health and motivation.
- [00:15]
David Feigenbaum
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.
- [00:31]
Lauren Bright Pacheco
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.
- [00:42]
David Feigenbaum
I was so sick that my doctors encouraged my family to say goodbye to me.
- [00:47]
Grant
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.
- [01:02]
Lauren Bright Pacheco
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.
- [01:14]
David Feigenbaum
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.
- [01:28]
Lauren Bright Pacheco
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.
- [01:55]
David Feigenbaum
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.
- [02:16]
Gary Gravina
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.
- [02:33]
Lauren Bright Pacheco
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 Stacy had been hit with their first seemingly insurmountable hurdle.
- [03:40]
Gary Gravina
Let's see. Seven, eight. Yeah. About nine months after we all moved in together, my stepson Jacob presented with a seizure and had a diagnostic journey. 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, which, being Jake, he beat that by a week.
- [04:09]
Lauren Bright Pacheco
Wow.
- [04:10]
Gary Gravina
It was huge. It was traumatic. And there was all this medical acquaintance that we wish we never had. And when the doctors said there was nothing more they could do, we were preparing hospice, and we had that. The hospital bed being sent here.
- [04:26]
Lauren Bright Pacheco
Oh, Gary, I'm so sorry.
- [04:28]
Gary Gravina
Yeah. Thank you.
- [04:30]
Lauren Bright Pacheco
So you had already been through the wringer before you even realized you had symptoms.
- [04:36]
Gary Gravina
Yeah. Something like that happens, 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.
- [04:46]
Lauren Bright Pacheco
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.
- [05:03]
Gary Gravina
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 because I felt so ill. And so for me to be putting on weight was weird. So Stacy 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.
- [06:01]
Lauren Bright Pacheco
Wow. And at what point did they realize they were dealing with something far more serious than the flu?
- [06:09]
Gary Gravina
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, 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 that we just need to find the thing that this is. And this should be a simple answer. I shouldn't be here.
- [06:56]
Lauren Bright Pacheco
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 immunotherapy deficiency conditions. There are only 3,000 FDA approved drugs, and 95% of rare diseases have no, you know, medical approved treatment. In terms of medication.
- [07:33]
David Feigenbaum
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. They 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 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.
- [08:26]
Lauren Bright Pacheco
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.
- [08:56]
Grant
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 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, said, 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 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.
- [10:05]
Lauren Bright Pacheco
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.
- [10:55]
Gary Gravina
Yeah. Coming out of a coma, at least for me, was nothing like they show it in TV and movies where you, 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.
- [11:12]
Lauren Bright Pacheco
And then also, you know, as the, 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 to physically fight it.
- [11:27]
Gary Gravina
Yeah, that was huge because with Jacob, I was by Stacy's side as a caregiver, helping her take care of him. And then in this situation, suddenly Stacy 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 Stacy went through.
- [11:54]
Lauren Bright Pacheco
That again, grappling with guilt on top of the physical fight for his life, even as additional symptoms pile up.
- [12:03]
Gary Gravina
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 Stacy 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 Stacy if she hadn't been there to do what she did.
- [13:00]
Lauren Bright Pacheco
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.
- [13:11]
Gary Gravina
David Feigenbaum had released a study on Castleman disease. Actually, the day I went into the hospital, he published this in ASH newsletter for hematology. I guess, I think the journal is called Blood.
- [13:24]
Lauren Bright Pacheco
It is.
- [13:25]
Gary Gravina
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.
- [13:35]
David Feigenbaum
Pennsylvania, and I'm told, hey, there's a patient with your subtype of Castlemans, you know, this very rare subtype of Castlemans 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.
- [13:56]
Gary Gravina
Was in the icu, and I was nervous. It was almost. I was nervous like you would be for a job application. Like. 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. Fagenbaum, 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.
- [14:41]
David Feigenbaum
It's the craziest thing I remember. Like it was yesterday. I see a patient in the bed 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 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 losing him. And it's like you just feel it when you see her. And I look at this window and I'm like, I recognize this view.
- [15:34]
Lauren Bright Pacheco
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 like marine determination spirituality?
- [15:51]
Gary Gravina
Yeah, that, 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.
- [16:32]
David Feigenbaum
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, often times you're 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 that's the window I'd been looking at for weeks and weeks and weeks. And I just dreamed. I was like one day I could get out of here.
- [17:12]
Lauren Bright Pacheco
I get the hairs on. 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.
- [17:38]
David Feigenbaum
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 chemo 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 we were getting results back and looking at those results and then saying, 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.
- [18:12]
Lauren Bright Pacheco
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.
- [18:26]
David Feigenbaum
I get so excited every time we save a life and we find a drug that can help someone. And that's just incredible. But even more incredible, or at least even greater of a feeling than how thankfully 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.
- [18:57]
Lauren Bright Pacheco
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?
- [19:15]
Gary Gravina
So I would visualize them as scenarios, but what I kept feeling was myself approaching some sort of a boundary or a doorway or that sort of thing. And it wasn't like a blessed realm where your loved ones come and say, now is not your time. Or, you know, there were 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?
- [19:55]
David Feigenbaum
None of us 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.
- [20:21]
Lauren Bright Pacheco
We'll be right back with Symptomatic A Medical Mystery Podcast.
- [20:28]
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- [21:59]
Lauren Bright Pacheco
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 Feigenbaum. 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?
- [22:56]
Gary Gravina
No. And when I think about David having five flares, there was a difference in my energy. I was on celtuximab 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, 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.
- [23:50]
Lauren Bright Pacheco
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.
- [24:02]
Gary Gravina
Even during my second flare, being comatose again, that fueled the anger that we know what this is. Why am I stuck in this state again? And you're in the ICU room and, you know, 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.
- [24:32]
Lauren Bright Pacheco
David, it has to be kind of like solving a puzzle and playing chess at the same time.
- [24:39]
David Feigenbaum
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 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 have seen and witnessed that actually there is something that 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.
- [25:22]
Lauren Bright Pacheco
Grant breaks down why rare diseases are often referred to as orphans.
- [25:27]
Grant
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. 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.
- [25:58]
Lauren Bright Pacheco
Wow. Because there's not the money in it, because the numbers aren't driving it.
- [26:03]
Grant
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.
- [26:33]
Lauren Bright Pacheco
Gary. David talks about a point where he was told by one of the nurses that you weren't going to make it.
- [26:41]
Gary Gravina
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.
- [26:57]
David Feigenbaum
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. Like, 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 because, like, who knows?
- [27:52]
Gary Gravina
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.
- [28:14]
David Feigenbaum
And we still ran the flow cytometry on a sample, and we still thought about what could the next drug be.
- [28:18]
Gary Gravina
But I made it through that night.
- [28:24]
Lauren Bright Pacheco
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.
- [28:54]
David Feigenbaum
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.
- [29:08]
Gary Gravina
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 had to start that fight all over again.
- [29:39]
Lauren Bright Pacheco
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.
- [30:01]
David Feigenbaum
And so Grain 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.
- [30:16]
Grant
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 thing that you get to participate in. And so that's always the sort of the guiding light, the North Star.
- [30:44]
Lauren Bright Pacheco
So David, how did Gary's case play a big part of the evolution of every cure?
- [30:51]
David Feigenbaum
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 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 us. 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, and patients like Joseph, who right now is recovering after we found a drug to save his life just a few months ago, 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?
- [31:37]
Grant
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.
- [32:04]
Lauren Bright Pacheco
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.
- [32:14]
Grant
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, 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.
- [32:39]
Lauren Bright Pacheco
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.
- [32:55]
David Feigenbaum
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 calcium 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.
- [33:24]
Grant
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 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?
- [34:22]
David Feigenbaum
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 tr, we'll 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.
- [34:39]
Lauren Bright Pacheco
Grant, what are you most proud of in terms of every cure?
- [34:44]
Grant
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 opportunity to create an engine that should outlast us and will save lives and purpose. 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.
- [35:30]
David Feigenbaum
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.
- [35:39]
Lauren Bright Pacheco
Through the work at the CDCN and every cure over the past 10 years, David and Grant have tirelessly worked to prevent others from enduring. During 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?
- [36:12]
Gary Gravina
Oh, 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 and 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.
- [37:02]
Lauren Bright Pacheco
By your side, especially some like Dr. David Feigenbaum. 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.
- [37:17]
David Feigenbaum
Thank you.
- [37:18]
Lauren Bright Pacheco
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?
- [37:42]
David Feigenbaum
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. Important to emphasize that the path out 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 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.
- [38:52]
Lauren Bright Pacheco
If you'd like to find out more about the work Grant and David and the rest of the team at Every Cure are doing, visit everycure.org they emphasize the importance of raising awareness and donations as the best way to support their ongoing efforts.
- [39:07]
Gary Gravina
My name is Gary Gravina. I'm David Feigenbaum and I fought Castleman Disease for nine months and after nearly.
- [39:15]
David Feigenbaum
Dying five times in three years from a deadly disease called Castleman Disease, David.
- [39:19]
Gary Gravina
Feigenbaum and the CDCN came up with a regimen that has held me in remission.
- [39:24]
David Feigenbaum
I've now been alive for over 10.
- [39:26]
Gary Gravina
Years, for almost 8 years now, thanks.
- [39:29]
David Feigenbaum
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.
- [39:43]
Lauren Bright Pacheco
Next week on Symptomatic, we dive into the modern landscape of primary prostate cancer and care. We'll explore emerging therapies, new research, and some of the biggest hurdles faced by both patients and health care 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@symptomatic.com and keep an eye on your feed. Until then, stay well. Symptomatic Medical Mystery Podcast is a production of Ruby Studio from iHeart Media. Our show is hosted by me, Lauren Bright Pacheco. Executive producers are Matt Romano and myself. Our EP of post production is James Foster. Our producers are Sierra Kaiser and John Irwin, and this episode was researched by Diana Davis.
- [40:51]
Unknown
There's a lot to take in when learning your advanced cancer has spread on your current treatment and is now called Metastatic castration resistant prostate cancer or mcrpc. After all you've been through, you know that every option matters. Pluvicto Lutetium Lu177 Vipivitide Tetraxitan is a prescription treatment for adults with prostate specific membrane antigen positive mcrpc, previously treated with hormone therapy and chemotherapy. It's not chemotherapy. Pluvicto is the first and only radio ligand therapy for PSMA positive mcrpc. It works differently. It targets PSMA positive cell cells including prostate cancer cells, and it could be the next step in your journey. Ask your doctor if Pluvicto is right for you. Discover more@pluvicto.com Pluvicto involves contact with radioactivity, which may increase your risk for cancer and cause fetal harm. Drink plenty of fluids, urinate often, use contraception and talk to your doctor about ways to reduce the risk of exposing others to radiation. During and after treatment, Pluvicto can cause low levels of blood cell counts, kidney problems and infertility. Tell your doctor if you have weakness, pale skin, shortness of breath, bleeding or bruising, more easily an infection or changes in urination. Side effects include tiredness, dry mouth, nausea, appetite loss and constipation. These are not all the risks of Fluvicto. Talk with your doctor.