WEBVTT - Case #18: Every Cure Pt.2 (Gary) 0:00:01.080 --> 0:00:09.920 Previously unsymptomatic. David Fegenbaum, a college quarterback deeply impacted by 0:00:09.920 --> 0:00:13.200 his mother's fight with brain cancer, was a prime example 0:00:13.240 --> 0:00:14.800 of peak health and motivation. 0:00:15.520 --> 0:00:18.680 The moment that I saw her dealing with her cancer, 0:00:19.040 --> 0:00:22.560 I just said, this is what I have to spend 0:00:22.600 --> 0:00:24.880 the rest of my life doing. And by this, it's 0:00:24.960 --> 0:00:28.160 taking care of people with horrible diseases, and it's searching 0:00:28.200 --> 0:00:30.920 for treatments so that people don't suffer. 0:00:31.640 --> 0:00:35.720 But during med school, everything quickly came crashing down when 0:00:35.800 --> 0:00:39.320 Castleman disease took him from treating patients to the brink 0:00:39.360 --> 0:00:41.320 of death in a matter of days. 0:00:41.720 --> 0:00:45.519 I was so sick that my doctors encouraged my family 0:00:45.520 --> 0:00:46.400 to say goodbye to me. 0:00:47.000 --> 0:00:50.640 I'll never forget the moment when a priest came in 0:00:50.720 --> 0:00:53.479 and read him his last rites. In this moment of sorrow, 0:00:53.560 --> 0:00:56.280 I remember I couldn't really keep it together, I couldn't 0:00:56.320 --> 0:01:00.440 hide help. Horrifying it was to see him in that state. 0:01:01.880 --> 0:01:06.280 After exhausting all the treatments available for Castleman, David's body 0:01:06.400 --> 0:01:09.520 was ravaged by chemo and he was out of viable options. 0:01:10.000 --> 0:01:12.840 That's when he decided to take matters into his own hands. 0:01:14.080 --> 0:01:15.959 I had to take some action, and it had to 0:01:16.000 --> 0:01:18.440 be a pretty crazy step, and that is to start 0:01:18.480 --> 0:01:20.840 testing one of these drugs that I was studying in 0:01:20.880 --> 0:01:23.320 the lab on myself. All the drugs I was studying 0:01:23.360 --> 0:01:26.240 the lab were all ft approved for something else, they 0:01:26.280 --> 0:01:27.640 just weren't used for Castlemen. 0:01:28.440 --> 0:01:32.880 After repurposing a medicine originally designed for kidney transplant patients 0:01:33.120 --> 0:01:36.600 to send his disease into long term remission, David was 0:01:36.680 --> 0:01:40.440 determined to prevent others from that similar dead end. His 0:01:40.600 --> 0:01:44.680 theories around expanding the approved uses for certain medicines would 0:01:44.720 --> 0:01:48.080 quickly be put to the test. Seeing Gary Gravina fight 0:01:48.200 --> 0:01:51.880 for his life against Castleman, just like David had a 0:01:51.920 --> 0:01:53.200 few short years before. 0:01:54.760 --> 0:01:57.880 Yes, his heart is technically beating. Yes he's technically breathing 0:01:58.160 --> 0:02:00.800 because of what we're doing medically, but he's not going 0:02:00.840 --> 0:02:03.840 to come back from this. And I just remember being 0:02:03.960 --> 0:02:07.320 so devastated to hear that, and then at the same 0:02:07.360 --> 0:02:10.440 time remember still running down the hall to the lab 0:02:10.800 --> 0:02:15.160 and still running the experiments because like who knows, there was. 0:02:15.120 --> 0:02:18.480 At least one night in both of my flares where 0:02:18.600 --> 0:02:21.560 it was just that close. I was in a coma. 0:02:22.200 --> 0:02:24.680 You know, everything in me was tanking, and I can 0:02:24.760 --> 0:02:27.320 just remember crying tears of frustration. 0:02:33.400 --> 0:02:37.000 How terrifying would it be to fight an unknown enemy, 0:02:37.520 --> 0:02:41.360 one you didn't recognize and didn't see coming. What if 0:02:41.400 --> 0:02:45.440 that enemy was coming from within a disease that even 0:02:45.600 --> 0:02:51.239 doctors couldn't identify. Nearly half of all Americans suffer from 0:02:51.320 --> 0:02:56.000 some chronic illness, and many struggle for an accurate diagnosis. 0:02:57.080 --> 0:03:04.920 These are their stories, Lauren Bribe Pacheco, and this is symptomatic. 0:03:18.120 --> 0:03:21.799 Gary Gravina built a life working with his hands, first 0:03:21.800 --> 0:03:24.239 as a marine and then as a carpenter for over 0:03:24.280 --> 0:03:28.280 twenty seven years. He felt fulfilled when he could craft something, 0:03:28.639 --> 0:03:30.560 even if it was just a song on his guitar. 0:03:31.320 --> 0:03:33.760 Before Gary would face a fight for his life, he 0:03:33.840 --> 0:03:36.840 and his wife Stacy had been hit with their first 0:03:36.960 --> 0:03:39.120 seemingly insurmountable hurdle. 0:03:39.760 --> 0:03:45.040 Let's see about nine months after we all moved in together, 0:03:45.480 --> 0:03:48.960 my steps on Jacob presented with a seizure and had 0:03:49.080 --> 0:03:51.720 a diagnostic journey that the end result was that he 0:03:51.760 --> 0:03:55.680 had brain cancer, and so we were heavily engaged in 0:03:55.800 --> 0:04:00.240 fighting that for just over a year. They had given 0:04:00.320 --> 0:04:03.680 him six months to maybe a year to live as 0:04:03.680 --> 0:04:08.200 the original prognosis, which being Jake. He beat that by 0:04:08.240 --> 0:04:08.640 a week. 0:04:09.280 --> 0:04:09.600 Wow. 0:04:10.360 --> 0:04:12.960 It was huge. It was traumatic, and there was all 0:04:13.000 --> 0:04:17.240 this medical acquaintance that we wish we never had. And 0:04:17.720 --> 0:04:20.280 when the doctor said there was nothing more they could do, 0:04:20.360 --> 0:04:24.680 we were preparing hospice and we had the hospital bed 0:04:24.760 --> 0:04:25.479 being sent here. 0:04:26.040 --> 0:04:28.440 Oh Gary, I'm so sorry. 0:04:28.680 --> 0:04:29.640 Yeah, thank you. 0:04:30.279 --> 0:04:33.599 So you had already been through the ringer before you 0:04:33.720 --> 0:04:35.400 even realized you had symptoms. 0:04:35.600 --> 0:04:37.839 Yeah, something like that happened, and you think, wow, that 0:04:37.920 --> 0:04:40.240 was the most awful thing, and you kind of in 0:04:40.279 --> 0:04:42.640 the back of your head, you're thinking, that must have 0:04:42.720 --> 0:04:45.080 been our big, awful thing that we have to overcome. 0:04:45.800 --> 0:04:48.520 But it was not long until Gary started noticing his 0:04:48.520 --> 0:04:52.280 body change. Heavy fatigue made getting through the day more 0:04:52.320 --> 0:04:58.400 of a chore than usual. Looking back, now, what are 0:04:58.480 --> 0:05:00.720 some of the earliest symptoms. 0:05:00.760 --> 0:05:04.240 You can pinpoint the morning when I felt ill, like 0:05:04.480 --> 0:05:06.240 I felt like I had a flu, but I could 0:05:06.320 --> 0:05:08.279 not push through it. I could not get up and 0:05:08.320 --> 0:05:11.640 go to work. And I mean for the previous eighteen years, 0:05:11.680 --> 0:05:13.800 I think I had taken off two and a half 0:05:13.920 --> 0:05:17.920 days of sick time. I just did not miss work 0:05:17.960 --> 0:05:21.240 if I felt sick during the day, I pushed through 0:05:21.279 --> 0:05:23.200 the end of the day. I got some rest that night, 0:05:23.279 --> 0:05:25.480 and then the next morning I came in and started 0:05:25.520 --> 0:05:28.719 to feel better. But this wasn't happening. And I took 0:05:28.760 --> 0:05:30.640 one day off and I did not feel any better, 0:05:31.600 --> 0:05:33.440 and so I say, it felt like a flu, that 0:05:33.480 --> 0:05:39.039 achy feeling, that drained feeling, and the swimminess in my head. 0:05:40.160 --> 0:05:43.960 My wife started to notice that my stomach was getting larger, 0:05:44.160 --> 0:05:46.520 and I wasn't really eating because I felt so ill, 0:05:47.240 --> 0:05:49.839 and so for me to be putting on weight was weird. 0:05:51.400 --> 0:05:54.200 So Stacy said, you know, we have to get you 0:05:54.279 --> 0:05:57.000 to the doctor. The next thing I remember was being 0:05:57.000 --> 0:05:59.120 at the doctor and him listening to my lungs and saying, 0:05:59.120 --> 0:06:00.400 you need to get to the host hospital. 0:06:01.360 --> 0:06:04.799 Wow. And at what point did they realize they were 0:06:04.839 --> 0:06:08.040 dealing with something far more serious than the flow. 0:06:08.920 --> 0:06:13.440 That whole first day at the emergency room, I'm thinking, well, 0:06:13.480 --> 0:06:15.120 this is going to be something really simple and they're 0:06:15.120 --> 0:06:16.880 going to take care of it. And then when they 0:06:16.880 --> 0:06:19.120 started talking about admitting me, I'm like, come on, this 0:06:19.200 --> 0:06:21.880 is this is not something like that. I don't need 0:06:21.920 --> 0:06:24.599 to be in the hospital. This is ridiculous. I just 0:06:24.680 --> 0:06:27.000 this sense of this, this is all just a big mistake. 0:06:29.400 --> 0:06:31.400 By the end of that week, I was in a 0:06:31.440 --> 0:06:35.279 medically induced coma, and I don't think I really squared 0:06:35.320 --> 0:06:37.880 myself with that until I woke up, you know, three 0:06:37.880 --> 0:06:41.960 and a half weeks later. What was going on going 0:06:41.960 --> 0:06:45.320 into the hospital, it was this sense was frustration, like this, 0:06:45.880 --> 0:06:47.840 we just need to find the thing that this is. 0:06:48.080 --> 0:06:51.120 And this should be a simple answer. I shouldn't. I 0:06:51.120 --> 0:06:52.160 shouldn't be here. 0:06:56.240 --> 0:06:59.680 Though Gary didn't know it. As he endured the challenges 0:06:59.720 --> 0:07:03.640 of his undiagnosed Castleman disease, David was hard at work 0:07:03.640 --> 0:07:06.560 in a lab not far away. Through the creation of 0:07:06.600 --> 0:07:11.960 the Castleman Disease Collaborative Network or CDCN, David was honoring 0:07:12.000 --> 0:07:15.320 his mission to repurpose drugs that could treat Castleman disease 0:07:15.760 --> 0:07:21.200 and other immuno deficiency conditions. There are only three thousand 0:07:21.480 --> 0:07:27.240 FDA approved drugs, and ninety five percent of rare diseases 0:07:27.840 --> 0:07:32.720 have no medical approved treatment in terms of medication. 0:07:32.920 --> 0:07:36.320 That's right, there's so much here. I mean, all I've 0:07:36.320 --> 0:07:38.640 been able to think about for these last ten years 0:07:38.920 --> 0:07:41.680 is how many more drugs are sitting out there. They 0:07:41.720 --> 0:07:45.000 could be life saving for other people and what we've learned. 0:07:45.160 --> 0:07:47.520 The more I've done it, the more I've just been 0:07:47.560 --> 0:07:50.760 blown away by the fact that of those three thousand drugs, 0:07:50.800 --> 0:07:53.239 the vast majority of them are generic. Over eighty percent 0:07:53.240 --> 0:07:56.280 of them are generic, which means that they are very 0:07:56.320 --> 0:07:59.880 inexpensive and they're not profitable any longer because once it 0:08:00.040 --> 0:08:03.400 drug becomes generic, then multiple manufacturers can make that drug 0:08:03.480 --> 0:08:06.240 price plummets. And so what that means is that our 0:08:06.280 --> 0:08:11.200 medical system doesn't study over eighty percent of our drugs 0:08:11.200 --> 0:08:13.200 that are at the CBS to find new uses for 0:08:13.240 --> 0:08:15.960 them because there is no incentive within our system. And 0:08:15.960 --> 0:08:18.080 it's like, wait a minute, of the drugs, the three 0:08:18.160 --> 0:08:20.840 thousand that can help us, eighty percent of them are 0:08:20.880 --> 0:08:24.280 not being studied. That's crazy. 0:08:26.080 --> 0:08:30.160 It wasn't always smooth sailing for the CDCN. David shared 0:08:30.200 --> 0:08:32.920 his dream with Grant, his best friend from medical school, 0:08:33.280 --> 0:08:36.000 but they were up against lots of skepticism from the 0:08:36.040 --> 0:08:39.880 medical community to make it happen. Tell me just a 0:08:39.960 --> 0:08:45.560 little bit about thinking outside the box in terms of 0:08:46.440 --> 0:08:53.200 wanting to evaluate medicines that already had FDA approval but 0:08:53.600 --> 0:08:55.720 for off label impact. 0:08:56.559 --> 0:09:00.000 Yeah, and maybe before I do that, I'll tell you 0:09:00.080 --> 0:09:05.880 one more story about our sort of naive optimism. When 0:09:06.120 --> 0:09:09.080 we first realized that we were going to try to 0:09:09.080 --> 0:09:14.160 be they, we called everyone we knew to currently be they, 0:09:14.440 --> 0:09:16.480 which was all the researchers in the world that might 0:09:16.559 --> 0:09:19.040 know anything about this disease. There were only twenty of 0:09:19.080 --> 0:09:22.440 them or so. They were in France and Japan at 0:09:22.440 --> 0:09:25.600 the NIH and we invited them all to a conference 0:09:25.920 --> 0:09:28.600 that they might have been interested in attending anyway, and said, 0:09:28.679 --> 0:09:30.480 if you're already going to be there, you know, please 0:09:30.520 --> 0:09:33.920 come to this side room with David and I to 0:09:34.000 --> 0:09:38.720 discuss Castleman disease research. And I'll never forget sitting there 0:09:38.840 --> 0:09:41.600 at the head of the table with David said this 0:09:41.679 --> 0:09:44.320 is David. I'm grant, you know, and we're here to 0:09:44.440 --> 0:09:48.960 cure Castleman disease, and just seeing these researchers who had 0:09:48.960 --> 0:09:51.760 been at this for years around the table kind of 0:09:52.320 --> 0:09:55.240 chuckle and say, okay, kids, you know, good luck. You know, 0:09:55.440 --> 0:09:58.080 we'll try and be helpful. It was just one of 0:09:58.080 --> 0:10:01.920 those moments where we were young and naive enough to have 0:10:01.920 --> 0:10:04.080 the audacity to think that we could do anything. 0:10:04.720 --> 0:10:09.000 This passionate naivete needed to change from an inspiring concept 0:10:09.040 --> 0:10:11.720 to a reality quickly if it was going to save 0:10:11.840 --> 0:10:16.560 Gary from arreparable damage. After the first flare up, Gary 0:10:16.679 --> 0:10:19.600 was now going in and out of medically induced comas, 0:10:19.760 --> 0:10:23.800 clinging to life. He was eventually diagnosed with Castleman disease, 0:10:24.200 --> 0:10:28.160 the same disease that plagued David years earlier. However, the 0:10:28.240 --> 0:10:36.280 diagnosis didn't guarantee a clear path to effective treatment. When 0:10:36.280 --> 0:10:39.600 you first woke up and you felt and saw the 0:10:39.600 --> 0:10:45.440 physical transformations of your body coming out of that coma, 0:10:46.240 --> 0:10:49.720 how surreal was that for you? That must have been 0:10:50.960 --> 0:10:55.160 honestly like living an episode of the Twilight Zone. 0:10:55.400 --> 0:10:57.720 Yeah, coming out of a coma, at least for me, 0:10:57.920 --> 0:10:59.959 was nothing like the show it in TV and movie 0:11:00.120 --> 0:11:02.680 where you open your eyes and you look up and 0:11:02.720 --> 0:11:04.840 you see your loved one and you remember the last 0:11:04.840 --> 0:11:07.360 thing that was going on. It's a kind of a 0:11:07.400 --> 0:11:10.280 slow drift back toward reality. 0:11:11.840 --> 0:11:16.280 And then also, you know, as the head of the family, 0:11:16.520 --> 0:11:21.080 I can't imagine how heavily it weighed on you that 0:11:21.559 --> 0:11:25.920 this is happening again and you're not there to physically 0:11:25.920 --> 0:11:26.400 fight it. 0:11:27.440 --> 0:11:32.320 Yeah, that was huge because with Jacob, I was by 0:11:32.440 --> 0:11:36.920 Stacy's side as a caregiver, helping her take care of him, 0:11:37.440 --> 0:11:41.600 and then in this situation, suddenly Stacy was back in 0:11:41.640 --> 0:11:45.840 the role of caregiver, and my condition was plummeting. And 0:11:46.200 --> 0:11:48.199 part of the reason I was so frustrated and wanted 0:11:48.240 --> 0:11:50.520 to figure out the simple thing that this had to 0:11:50.559 --> 0:11:53.320 be was that I didn't want to be the reason 0:11:53.360 --> 0:11:54.400 that Stacy went. 0:11:54.240 --> 0:11:57.480 To that again, grappling with guilt. On top of the 0:11:57.520 --> 0:12:02.000 physical fight for his life. Even additional symptoms pile up, 0:12:02.880 --> 0:12:03.319 and so I. 0:12:03.280 --> 0:12:07.000 Woke up with purple hands and they felt gravelly, they 0:12:07.000 --> 0:12:11.960 felt sandy. They were numb, but also uncomfortable. You know, 0:12:12.000 --> 0:12:13.880 it was not the biggest pain that I had, but 0:12:13.960 --> 0:12:17.120 it was very uncomfortable because I've always used my hands 0:12:17.120 --> 0:12:20.360 for everything I do, and so to have them not 0:12:20.840 --> 0:12:26.120 there was really it was freaky. Once I did wake up, 0:12:26.160 --> 0:12:28.240 I had to be fed by hand because my arms 0:12:28.240 --> 0:12:30.559 were so weak and my stomach had grown so large, 0:12:30.600 --> 0:12:32.760 like I couldn't put my hands together. I didn't have 0:12:32.840 --> 0:12:36.960 enough strength to reach up that high. So Stacy was 0:12:37.080 --> 0:12:39.559 spoon feeding me my food when I came out of 0:12:39.600 --> 0:12:44.120 the coma. When people talk about having an advocate, man, 0:12:44.200 --> 0:12:46.840 I had the best doctors and nurses in the world, 0:12:46.960 --> 0:12:50.880 And I mean I'm very grateful for that, but I 0:12:52.000 --> 0:12:56.400 would be dead. I would be dead without Stacy if 0:12:56.840 --> 0:12:58.360 she hadn't been there to do what she did. 0:13:00.000 --> 0:13:03.160 Local doctors had exhausted all of the known treatments for 0:13:03.240 --> 0:13:07.720 Castleman disease and had decided to transfer Gary to the 0:13:07.760 --> 0:13:10.800 hospital of the University of Pennsylvania for more help. 0:13:11.559 --> 0:13:16.240 David Figenbaum had released a study on Castleman disease. Actually 0:13:16.280 --> 0:13:18.440 the day I went into the hospital, he published this 0:13:18.679 --> 0:13:23.320 in esh newsletter for Heematology, because I think the journal 0:13:23.360 --> 0:13:26.200 is called Blood it is. And someone at the second 0:13:26.200 --> 0:13:29.480 hospital had seen that article. One of the people said, well, 0:13:29.559 --> 0:13:33.160 this guy, he has the disease and he's fighting it. 0:13:33.280 --> 0:13:36.520 And so I ended up done at penn and I'm. 0:13:36.400 --> 0:13:39.920 Told, hey, there's a patient with your subtype of Castleman's. 0:13:40.000 --> 0:13:42.920 You know, this very rare subtype of Castlemans that's here 0:13:43.160 --> 0:13:45.200 in the ICU. Can you go up and see the patient? 0:13:45.200 --> 0:13:47.880 And at this stage, I'm working in the hospital, I'm 0:13:47.920 --> 0:13:50.040 running the center that does a lot of research, but 0:13:50.120 --> 0:13:53.240 I'm like fiercely avoiding the ICU, like I don't want 0:13:53.280 --> 0:13:55.080 to walk anywhere near the ic I got some bad 0:13:55.120 --> 0:13:56.640 memories FM when I was in the ICU. 0:13:56.960 --> 0:13:59.880 And I was nervous. It was almost I was nervous 0:13:59.920 --> 0:14:02.560 like you would be for a job application, like like 0:14:02.600 --> 0:14:05.000 I hope he lets me in, you know what I mean. 0:14:05.400 --> 0:14:08.320 It's so weird. And of course you just hear, you know, 0:14:08.400 --> 0:14:12.000 doctor researcher, and you hear the name doctor Fagenbaum, and 0:14:12.160 --> 0:14:14.280 it's a beautiful name. It just it kind of sounds 0:14:14.320 --> 0:14:18.080 like old doctor. So I'm picturing an old, gray haired 0:14:18.120 --> 0:14:22.040 guy with glasses and probably broken from the disease, but 0:14:22.280 --> 0:14:26.520 still moving on. And then this young guy comes in 0:14:27.120 --> 0:14:30.160 looking full of life, and like all the fight in 0:14:30.240 --> 0:14:33.520 him and the spirit and the keenness of his intellect 0:14:33.600 --> 0:14:37.000 and how compassionate he was was just like, wow, okay, 0:14:37.560 --> 0:14:40.080 I'll take a pass on lymphoma. I'll take what that 0:14:40.120 --> 0:14:43.360 guy has. It's the craziest thing I remember, like it 0:14:43.400 --> 0:14:47.920 was yesterday. I see a patient in the bad who 0:14:48.000 --> 0:14:51.680 is so sick. All of his organs are obviously failing, 0:14:51.880 --> 0:14:55.000 and he looks just like me when I was at 0:14:55.040 --> 0:14:58.160 my sickest, Like he's got the fluid. When you lose 0:14:58.200 --> 0:15:00.560 the muscles in your face, you sort of look like, 0:15:00.560 --> 0:15:02.560 you know, you have these dense next to your eyes. 0:15:03.240 --> 0:15:05.000 Everything. It was like I'm looking at I'm like, oh 0:15:05.040 --> 0:15:07.960 my gosh, he he just looks so much like me. 0:15:08.000 --> 0:15:11.200 And then b I look and I see his wife Stacy, 0:15:11.400 --> 0:15:15.119 and I like see in her eyes this deep concern, 0:15:15.480 --> 0:15:18.560 this care. You can just see right away that like, 0:15:19.040 --> 0:15:21.480 you know, this is her everything right now in the 0:15:21.520 --> 0:15:24.520 hospital bed and she's losing him, and it's like you 0:15:24.600 --> 0:15:27.240 just feel it when you see her. And I look 0:15:27.280 --> 0:15:33.680 at this window and I'm like, I recognize this view. 0:15:34.320 --> 0:15:37.240 You've said that when David first visited you that you 0:15:37.320 --> 0:15:41.600 immediately clutched at the hope that you could get there, 0:15:42.040 --> 0:15:45.360 that you could get where he is. Did that tap 0:15:45.400 --> 0:15:49.920 into your like marine determination spirit? 0:15:50.920 --> 0:15:53.600 Yeah, that, and in particular that he was leading a 0:15:53.640 --> 0:15:56.240 research effort and said that I could contribute to it, 0:15:56.720 --> 0:15:58.600 that I could not only fight my way out of 0:15:58.600 --> 0:16:02.400 the bed, but help him the whole disease was huge. 0:16:02.920 --> 0:16:07.000 To turn from this helpless two hundred and sixty pound 0:16:07.400 --> 0:16:11.600 bag of fluid into somebody who was fighting was a 0:16:11.680 --> 0:16:15.520 huge turning point for me up until that point. It 0:16:15.560 --> 0:16:17.440 was something that I was looking for, and that was 0:16:17.480 --> 0:16:19.880 part of my frustration, like why can't we take care 0:16:19.880 --> 0:16:22.440 of this? Why can't we hit this back, and so 0:16:22.720 --> 0:16:24.680 that was the turning point where he said, you know, 0:16:24.720 --> 0:16:28.600 will you contribute samples to the research and that was 0:16:28.720 --> 0:16:31.240 no brainer I was. I was like, hell, yes. 0:16:32.320 --> 0:16:34.960 I remember telling him that you know, we're going to 0:16:35.000 --> 0:16:37.120 beat this, and I really believe it because i'd been 0:16:37.120 --> 0:16:39.640 in his bed, although a minute or two later I 0:16:39.760 --> 0:16:42.160 learned that literally had been in his bed because when 0:16:42.160 --> 0:16:44.960 I walked out, one of the nurses came over and 0:16:44.960 --> 0:16:47.640 gave me a hug, and I actually didn't know who 0:16:47.680 --> 0:16:49.360 she was or you know, what was going on, and 0:16:49.400 --> 0:16:52.080 she said, I was your nurse when you were here 0:16:52.160 --> 0:16:54.520 a few years ago, which I didn't realize. Was again, 0:16:54.520 --> 0:16:56.920 when you're a nice you oftentimes you know you're just 0:16:57.040 --> 0:16:59.480 out of it, and so I didn't realize that. And 0:16:59.520 --> 0:17:02.400 she said, and this was your hospital room, and I 0:17:02.440 --> 0:17:04.560 was like, oh my gosh. That's why I recognized that 0:17:04.640 --> 0:17:07.399 view out the window because that's the window I'd been 0:17:07.440 --> 0:17:09.280 looking at for weeks and weeks and weeks, and I 0:17:09.320 --> 0:17:11.320 just dreamed. I was like, one day I could get 0:17:11.359 --> 0:17:11.840 out of here. 0:17:12.400 --> 0:17:15.600 I get the hairs on my arms, stand up on 0:17:15.680 --> 0:17:21.200 that It's amazing. In the same exact shoes and room 0:17:21.400 --> 0:17:24.680 as David once was. The challenge was now to rethink 0:17:24.760 --> 0:17:28.480 Gary's treatment. Under the care of David and the CDCN, 0:17:28.880 --> 0:17:32.719 who were busily working behind the scenes on repurposed treatment 0:17:32.840 --> 0:17:36.800 options for rare diseases, there was a renewed sense of hope. 0:17:37.920 --> 0:17:39.880 Well, first you got a Castleman's drug that we thought 0:17:39.880 --> 0:17:42.280 would work, and that drug seemed to work a little bit, 0:17:42.600 --> 0:17:44.800 and then he relapsed, and then we ended up giving 0:17:44.880 --> 0:17:48.240 him a bunch of chemotherapy that sort of seemed to 0:17:48.440 --> 0:17:51.080 work and get him out of this thing. But the 0:17:51.200 --> 0:17:53.880 question became, how do we keep it from coming back. 0:17:54.520 --> 0:17:57.520 We were getting blood samples on Gary basically every day, 0:17:57.600 --> 0:17:58.920 and as soon as we get the blood sample, we'd 0:17:59.000 --> 0:18:01.640 run down to the lab. We'd run something called flow sytometry, 0:18:01.840 --> 0:18:04.760 and we were getting results back and looking at those 0:18:04.800 --> 0:18:06.440 results and then saying, you know, is there a different 0:18:06.480 --> 0:18:08.240 drug we should be using based on what we're seeing 0:18:08.240 --> 0:18:11.320 in the lab. And it was like this race against time. 0:18:12.119 --> 0:18:15.160 It was clear to everyone that Gary's time was running out. 0:18:15.359 --> 0:18:18.680 His body was too weak to push through continued chemotherapy. 0:18:19.240 --> 0:18:23.439 David and the CDCN needed to produce results immediately if 0:18:23.480 --> 0:18:25.160 they were going to save Gary's life. 0:18:25.960 --> 0:18:28.480 I get so excited every time we save a life 0:18:28.520 --> 0:18:30.440 and we find a drug that can help someone, and 0:18:30.600 --> 0:18:34.679 that's it's just incredible. But even more incredible, or at 0:18:34.760 --> 0:18:37.040 least even greater of a feeling than how thankful we 0:18:37.080 --> 0:18:39.399 are when it works, is just how devastated we are 0:18:39.440 --> 0:18:41.960 when these drugs don't work. And it's both of those 0:18:42.000 --> 0:18:45.760 emotions that just drive us to keep working. You get 0:18:45.800 --> 0:18:47.680 a carrot and a stick, and it's just like you're 0:18:47.720 --> 0:18:51.560 just constantly chasing, and you get constantly motivated by both 0:18:52.000 --> 0:18:54.320 the people who are here because of our work and 0:18:54.359 --> 0:18:56.800 also the people who aren't here despite our work. 0:18:57.600 --> 0:19:02.359 Gary, was there a time time that you felt like 0:19:02.680 --> 0:19:06.760 it was pointless to keep fighting? Were you in that 0:19:07.080 --> 0:19:10.600 much exhaustion and pain at any point to think I 0:19:10.720 --> 0:19:13.440 can't do this? And what was it that pulled you 0:19:13.560 --> 0:19:14.840 out of that? So? 0:19:15.359 --> 0:19:18.960 I would visualize them as scenarios, But what I kept 0:19:19.000 --> 0:19:22.200 feeling was myself approaching some sort of a boundary or 0:19:23.760 --> 0:19:25.560 a doorway or that sort of thing. And it wasn't 0:19:25.640 --> 0:19:27.720 like a blessed realm where your loved ones come and 0:19:27.840 --> 0:19:30.399 say now is not your time? Or you know, there 0:19:30.440 --> 0:19:33.280 were no singing or anything like that. I would always 0:19:33.280 --> 0:19:35.920 see my wife and my kids, and I would turn 0:19:35.960 --> 0:19:39.760 away from that and turn turn toward them with my will. 0:19:40.600 --> 0:19:43.639 The first flare was I am not going anywhere near there. 0:19:43.960 --> 0:19:46.880 I want to find the way toward what I knew. 0:19:47.680 --> 0:19:50.399 I wanted to find my way toward awareness. I was 0:19:50.480 --> 0:19:52.919 so frustrated that we know what this is. Why am 0:19:52.920 --> 0:19:54.760 I still here? Why am I stuck in the state. 0:19:55.400 --> 0:19:58.800 None of us liked the lows. I wish I could 0:19:58.800 --> 0:20:02.760 give all these lows back. But the lows in some 0:20:02.960 --> 0:20:06.800 ways can really create this sort of like potential energy 0:20:06.920 --> 0:20:10.200 or like this like slingshot effect, and then it's that 0:20:10.720 --> 0:20:14.159 horrible moment that results in action, and that action results 0:20:14.240 --> 0:20:16.000 in something that we celebrate. 0:20:21.520 --> 0:20:25.439 We'll be right back with Symptomatic a Medical Mystery Podcast. 0:20:29.160 --> 0:20:37.200 Now back to Symptomatic a Medical Mystery Podcast. Gary Gravina, 0:20:37.400 --> 0:20:40.880 a former carpenter and marine, went from his usual routine 0:20:41.000 --> 0:20:44.200 to being placed in a medically induced coma within a week. 0:20:44.920 --> 0:20:47.480 Having supported his wife through the loss of his stepson, 0:20:47.920 --> 0:20:51.600 Gary was determined to prevent her from experiencing that pain again. 0:20:52.200 --> 0:20:55.320 But after the treatment for his Castleman disease had failed, 0:20:55.760 --> 0:20:59.719 Gary's last hope was the research on alternative treatments from 0:20:59.760 --> 0:21:07.359 doctor David Fagenbaum. Initially, though I know that they had 0:21:07.440 --> 0:21:10.919 tried a medicine that had worked on other Castleman's patients 0:21:11.000 --> 0:21:15.000 that didn't work on you. Was there in those initial 0:21:15.520 --> 0:21:20.520 attempts to find what for you could be the silver bullet? 0:21:21.359 --> 0:21:24.360 Was it devastating or was it more just like bring 0:21:24.480 --> 0:21:25.920 on the next No? 0:21:26.200 --> 0:21:30.040 And when I think about David having five flares, there 0:21:30.119 --> 0:21:33.960 was a difference in my energy. I was on celtuxamab 0:21:34.320 --> 0:21:36.120 to get out of the first flare, and I thought 0:21:36.200 --> 0:21:37.760 that was going to do it. And I think after 0:21:37.880 --> 0:21:41.040 my third treatment, my blood all looked like it was 0:21:41.119 --> 0:21:45.040 trending in the right direction. And then like a week later, 0:21:45.520 --> 0:21:47.760 I was going into my second flare and it was 0:21:47.960 --> 0:21:51.480 just not working anymore. It had quit, and I thought, 0:21:51.560 --> 0:21:54.800 oh no, not again, Like can this just be some 0:21:54.960 --> 0:21:58.040 other thing that's going on a side effect? But it 0:21:58.160 --> 0:22:01.960 had that same feeling, that same I cannot lift myself 0:22:02.119 --> 0:22:06.120 to push through this. The day before at physical therapy, 0:22:06.960 --> 0:22:09.120 I was pushing and pushing and getting better and better 0:22:09.160 --> 0:22:11.520 results every day, and there were stuff I just couldn't 0:22:11.560 --> 0:22:14.760 do that day, and the physical therapist said, you know, 0:22:14.840 --> 0:22:17.199 make sure you reach out to your doctor and let 0:22:17.280 --> 0:22:19.520 them know that you've had this little turning point. 0:22:20.119 --> 0:22:23.760 Despite some signs of relief and a brief return to routine, 0:22:24.320 --> 0:22:29.159 Castleman continually returned, sending Gary back to the ICU and 0:22:29.359 --> 0:22:31.040 David back to the drawing board. 0:22:31.920 --> 0:22:35.280 Even during my second player being comatose again. That fueled 0:22:36.000 --> 0:22:38.639 the anger that we know what this is? Why am 0:22:38.640 --> 0:22:41.080 I stuck in the state again? And you're in the 0:22:41.560 --> 0:22:43.840 ice your room, and you know all the things are 0:22:43.880 --> 0:22:46.560 connected to you, and you're just kind of you feel 0:22:46.600 --> 0:22:50.280 apart from everything, and you start to wonder why am 0:22:50.320 --> 0:22:52.520 I being singled out? Like am I being punished? 0:22:52.560 --> 0:22:53.119 What did I do? 0:22:53.320 --> 0:22:56.119