1 00:00:01,040 --> 00:00:04,640 Speaker 1: Hello, Symptomatic family. We'll be back soon with season four 2 00:00:04,840 --> 00:00:09,879 Speaker 1: featuring more compelling medical mysteries. But first we're re releasing 3 00:00:10,000 --> 00:00:13,560 Speaker 1: a very special episode in light of some incredible milestones 4 00:00:13,600 --> 00:00:18,120 Speaker 1: that deserve celebration. Doctor David Fagenbaum is a cherished member 5 00:00:18,120 --> 00:00:22,279 Speaker 1: of our expanding Symptomatic family. Having shared his powerful story 6 00:00:22,400 --> 00:00:26,720 Speaker 1: in Case Number seventeen, David and Every Cure, His journey 7 00:00:26,840 --> 00:00:30,840 Speaker 1: continues to inspire, and now he's being recognized in a 8 00:00:31,000 --> 00:00:34,800 Speaker 1: major way. Doctor Fagenbaum was recently named to the twenty 9 00:00:34,840 --> 00:00:38,640 Speaker 1: twenty five Time one hundred Health List, honoring the most 10 00:00:38,720 --> 00:00:42,840 Speaker 1: influential figures in health. He also just released an incredibly 11 00:00:42,880 --> 00:00:46,360 Speaker 1: inspiring ted talk, which we've linked in the episode description. 12 00:00:47,080 --> 00:00:51,640 Speaker 1: These achievements reflect the same empathy, curiosity, and determination that 13 00:00:51,720 --> 00:00:54,600 Speaker 1: to find his fight to overcome his own rare disease 14 00:00:55,080 --> 00:00:59,200 Speaker 1: while ultimately helping others do the same. David's story is 15 00:00:59,240 --> 00:01:02,720 Speaker 1: a living test to what's possible when we ask tough questions, 16 00:01:03,120 --> 00:01:06,560 Speaker 1: refuse to give up, and believe in the power of community. 17 00:01:07,120 --> 00:01:10,400 Speaker 1: It also captures the very heart of what symptomatic stands for, 18 00:01:11,080 --> 00:01:14,200 Speaker 1: the courage to seek answers and the strength we find 19 00:01:14,319 --> 00:01:18,280 Speaker 1: when we share our experiences. We hope this episode will 20 00:01:18,319 --> 00:01:21,560 Speaker 1: reinforce the truth that each of us has the power 21 00:01:21,600 --> 00:01:24,200 Speaker 1: to make a difference, both in our own lives and 22 00:01:24,440 --> 00:01:27,320 Speaker 1: in the lives of others. We'll see you very soon 23 00:01:27,400 --> 00:01:30,880 Speaker 1: for a brand new season of Symptomatic. Until then, take 24 00:01:30,920 --> 00:01:32,080 Speaker 1: care and be well. 25 00:01:36,200 --> 00:01:44,360 Speaker 2: Ruby. I'll never forget my doctor walking into the room 26 00:01:44,360 --> 00:01:49,040 Speaker 2: and saying, David, your liver, your kidneys, your bone marrow, 27 00:01:49,680 --> 00:01:54,320 Speaker 2: your heart, and your lungs are shutting down. I was 28 00:01:54,400 --> 00:01:56,080 Speaker 2: just treating patients down the hall. 29 00:01:57,200 --> 00:02:00,800 Speaker 3: I was just spiraling, not knowing what was actually happening, 30 00:02:00,880 --> 00:02:03,040 Speaker 3: just being so confused because I just talked to him 31 00:02:03,080 --> 00:02:04,280 Speaker 3: like two days ago. 32 00:02:05,120 --> 00:02:07,400 Speaker 4: A priest came in and read him his last rites, 33 00:02:07,960 --> 00:02:11,000 Speaker 4: and then a few of us friends came in and 34 00:02:11,520 --> 00:02:12,400 Speaker 4: ultimately hugged him. 35 00:02:12,440 --> 00:02:15,360 Speaker 2: Good buy. I had to take some action, and it 36 00:02:15,400 --> 00:02:17,280 Speaker 2: had to be like a crazy step, and that is 37 00:02:17,320 --> 00:02:19,320 Speaker 2: to start testing one of these drugs that I was 38 00:02:19,400 --> 00:02:21,240 Speaker 2: studying in the lab on myself. 39 00:02:26,240 --> 00:02:29,880 Speaker 1: How terrifying would it be to fight an unknown enemy, 40 00:02:30,400 --> 00:02:34,200 Speaker 1: one you didn't recognize and didn't see coming. What if 41 00:02:34,240 --> 00:02:38,320 Speaker 1: that enemy was coming from within a disease that even 42 00:02:38,440 --> 00:02:44,120 Speaker 1: doctors couldn't identify nearly half of all Americans suffer from 43 00:02:44,200 --> 00:02:48,840 Speaker 1: some chronic illness, and many struggle for an accurate diagnosis. 44 00:02:49,919 --> 00:02:56,600 Speaker 1: These are their stories. I'm Lauren Brat Pacheco, and this 45 00:02:57,000 --> 00:03:15,680 Speaker 1: is symptomatic. David Fagenbaum grew up in Raleigh, North Carolina. 46 00:03:15,880 --> 00:03:18,280 Speaker 2: And I've got two older sisters, seven and five years 47 00:03:18,320 --> 00:03:23,079 Speaker 2: older than me, and two amazing parents. They immigrated to 48 00:03:23,080 --> 00:03:25,399 Speaker 2: the United States from Trinidad and Tobago and the Caribbean, 49 00:03:25,680 --> 00:03:27,720 Speaker 2: so they were sort of making this new life the 50 00:03:27,760 --> 00:03:29,720 Speaker 2: American dream in the States. 51 00:03:29,919 --> 00:03:33,960 Speaker 1: And childhood exposure to a very American sport ignited one 52 00:03:33,960 --> 00:03:38,160 Speaker 1: of David's biggest dreams. And your dad is an orthopedic 53 00:03:38,160 --> 00:03:41,480 Speaker 1: surgeon and worked for a period of time with North 54 00:03:41,520 --> 00:03:45,520 Speaker 1: Carolina State wolfback team. That's right, which is where, at 55 00:03:45,520 --> 00:03:49,240 Speaker 1: the age of seven you had this burning desire to 56 00:03:49,400 --> 00:03:51,800 Speaker 1: play which position in what division? 57 00:03:52,360 --> 00:03:54,680 Speaker 2: I wanted to play quarterback? And I want to play 58 00:03:54,680 --> 00:03:57,520 Speaker 2: Division one college football. That was like my first dream 59 00:03:57,760 --> 00:04:00,960 Speaker 2: and that is all I could think about about a decade. 60 00:04:01,720 --> 00:04:05,480 Speaker 1: Your dad working so much, your mom kind of became 61 00:04:06,360 --> 00:04:07,720 Speaker 1: almost your football trainer. 62 00:04:08,120 --> 00:04:12,280 Speaker 2: She did. She was my football trainer. She was my mom. Obviously, 63 00:04:12,360 --> 00:04:15,320 Speaker 2: she was also one of my closest friends, and there 64 00:04:15,360 --> 00:04:17,760 Speaker 2: was a hill behind her house, and she would stay 65 00:04:17,800 --> 00:04:19,200 Speaker 2: at the top of this hill and I'd throw the 66 00:04:19,200 --> 00:04:21,440 Speaker 2: football into the hill. Then she could, you know, throw 67 00:04:21,480 --> 00:04:23,359 Speaker 2: it back down. She just wanted to help me in 68 00:04:23,400 --> 00:04:24,880 Speaker 2: any way that she could, even if it was just, 69 00:04:25,080 --> 00:04:26,839 Speaker 2: you know, rolling footballs down a hill. 70 00:04:27,839 --> 00:04:31,160 Speaker 1: At an early age, David showed his ability for extreme 71 00:04:31,279 --> 00:04:35,640 Speaker 1: dedication and focus becoming a star high school quarterback. But 72 00:04:35,920 --> 00:04:38,080 Speaker 1: that's just one of the reasons he caught the attention 73 00:04:38,160 --> 00:04:39,880 Speaker 1: of Caitlin, his future wife. 74 00:04:40,839 --> 00:04:46,279 Speaker 3: He was the president of student council and we had 75 00:04:46,440 --> 00:04:49,280 Speaker 3: morning meeting every morning. He got up there with his 76 00:04:49,320 --> 00:04:53,800 Speaker 3: best friend and nothing to do with school at all. 77 00:04:53,880 --> 00:04:59,280 Speaker 3: They started rapping eminem songs. The whole student body was 78 00:04:59,360 --> 00:05:02,800 Speaker 3: just like, what is happening? I even said that I'm like, 79 00:05:03,040 --> 00:05:05,520 Speaker 3: I was very confused by him, but I was also like, wow, 80 00:05:05,520 --> 00:05:07,040 Speaker 3: he's really attractive. 81 00:05:09,320 --> 00:05:15,080 Speaker 1: Attractive and driven. You ended up playing quarterback for Georgetown. 82 00:05:15,360 --> 00:05:18,039 Speaker 2: That's right. Listeners may not know Georgetown has a football team, 83 00:05:18,080 --> 00:05:22,000 Speaker 2: but we do and we are Division one. Yes, for me, 84 00:05:22,120 --> 00:05:24,440 Speaker 2: it was the ultimate dream that I yeah, I'd been 85 00:05:24,440 --> 00:05:26,200 Speaker 2: thinking about for over ten years. 86 00:05:26,480 --> 00:05:29,599 Speaker 1: It's bittersweet too, because I know that your mom was 87 00:05:29,680 --> 00:05:33,320 Speaker 1: diagnosed your freshman year, that's right. 88 00:05:33,480 --> 00:05:35,800 Speaker 2: Actually, just two weeks after she dropped me off to 89 00:05:35,839 --> 00:05:39,400 Speaker 2: Georgetown and I got this phone call from my dad. 90 00:05:39,839 --> 00:05:41,520 Speaker 2: When he called, I started telling you all about this 91 00:05:41,560 --> 00:05:44,440 Speaker 2: football practice we had and all these touchdowns and all 92 00:05:44,440 --> 00:05:46,560 Speaker 2: this stuff, and he was just silent, and then he 93 00:05:46,600 --> 00:05:49,560 Speaker 2: told me. He said, David, your mom has brain cancer. 94 00:05:49,720 --> 00:05:53,480 Speaker 2: And gosh, I was like, what you know. That can't 95 00:05:53,480 --> 00:05:58,719 Speaker 2: be Mom, Like she's the most amazing person to everyone. Like, 96 00:05:58,800 --> 00:06:01,760 Speaker 2: it's not faired, it's not right, and so yeah, that 97 00:06:02,160 --> 00:06:06,480 Speaker 2: sort of changed everything in my life. It just everything changed. 98 00:06:07,160 --> 00:06:12,200 Speaker 1: Your family did exactly what in an ideal world any 99 00:06:12,240 --> 00:06:15,040 Speaker 1: family would be able to do. You were really there 100 00:06:15,279 --> 00:06:19,719 Speaker 1: and you were so present for her. Did it shape 101 00:06:20,120 --> 00:06:22,279 Speaker 1: your desire to become a doctor? 102 00:06:23,320 --> 00:06:26,400 Speaker 2: It completely shaped my desire to become a doctor. I mean, 103 00:06:26,839 --> 00:06:29,479 Speaker 2: the moment that I heard my mom had cancer, and 104 00:06:29,640 --> 00:06:32,600 Speaker 2: of course the moment that I saw her dealing with 105 00:06:32,640 --> 00:06:36,720 Speaker 2: her cancer, I just said, this is what I have 106 00:06:36,800 --> 00:06:39,360 Speaker 2: to spend the rest of my life doing. And by this, 107 00:06:39,440 --> 00:06:42,520 Speaker 2: it's taking care of people with horrible diseases, and it's 108 00:06:42,560 --> 00:06:46,039 Speaker 2: searching for treatments so that people don't suffer like I 109 00:06:46,120 --> 00:06:47,360 Speaker 2: witnessed my mom suffering. 110 00:06:47,760 --> 00:06:50,560 Speaker 1: You know, I can't imagine how painful because you were 111 00:06:51,600 --> 00:06:54,360 Speaker 1: nineteen when she passed. 112 00:06:54,839 --> 00:06:56,719 Speaker 2: I could go on all day about her. She was 113 00:06:56,760 --> 00:07:01,240 Speaker 2: such a force. She battled brain care answer for fifteen months, 114 00:07:01,760 --> 00:07:04,360 Speaker 2: just so valiantly, and everything about it. You know, I 115 00:07:04,560 --> 00:07:06,839 Speaker 2: share about the humor that she brought into it. You know, 116 00:07:07,640 --> 00:07:10,480 Speaker 2: the very first brain surgery she had. You know, we 117 00:07:10,480 --> 00:07:12,680 Speaker 2: were devastated going to that surgery. You know, what's mom 118 00:07:12,760 --> 00:07:14,440 Speaker 2: going to be like coming out of this? Is she 119 00:07:14,480 --> 00:07:16,800 Speaker 2: going to be the same person? So I'll go back 120 00:07:16,840 --> 00:07:18,600 Speaker 2: to see her, and I remember that they pulled this 121 00:07:18,720 --> 00:07:23,120 Speaker 2: curtain back and she had this wrap around her head 122 00:07:23,120 --> 00:07:25,320 Speaker 2: and then she had this tube coming out of the 123 00:07:25,360 --> 00:07:27,680 Speaker 2: incision and it had sort of a ball at the end. 124 00:07:27,680 --> 00:07:30,680 Speaker 2: It was actually collecting the fluid. She looked at us 125 00:07:30,680 --> 00:07:33,040 Speaker 2: and she pointed to her head and she said, Chiquita 126 00:07:33,080 --> 00:07:37,400 Speaker 2: banana lady, and we just like burst into laughter. It 127 00:07:37,760 --> 00:07:42,440 Speaker 2: was what we needed. But my mom's passing it impaled me, 128 00:07:42,640 --> 00:07:45,440 Speaker 2: and then it set me on fire. 129 00:07:48,920 --> 00:07:53,040 Speaker 1: David's focus now set on medicine. He graduated from Georgetown 130 00:07:53,200 --> 00:07:56,840 Speaker 1: and was attending the University of Pennsylvania for his medical degree, 131 00:07:57,240 --> 00:08:00,679 Speaker 1: and although no longer leading a football team, his drive 132 00:08:00,760 --> 00:08:02,640 Speaker 1: for physical fitness continued. 133 00:08:03,120 --> 00:08:05,480 Speaker 2: I continued to exercise a lot, and I was just 134 00:08:05,480 --> 00:08:07,560 Speaker 2: an out with it. I loved and so as a result, 135 00:08:07,880 --> 00:08:09,080 Speaker 2: I became like really. 136 00:08:08,880 --> 00:08:10,920 Speaker 1: Fit, and you had a nickname because of it. 137 00:08:11,360 --> 00:08:13,680 Speaker 2: Yes, I was called the Beast because I was in 138 00:08:13,760 --> 00:08:16,480 Speaker 2: really good shape. I want a bench pressing contest. In fact, 139 00:08:16,520 --> 00:08:19,280 Speaker 2: I set the Virginia state record for bench pressing, which 140 00:08:19,360 --> 00:08:20,600 Speaker 2: if you were look at me now, you'd be like, 141 00:08:21,480 --> 00:08:23,600 Speaker 2: you sure about that, because I definitely am not going 142 00:08:23,640 --> 00:08:25,760 Speaker 2: to set any bench pressing records these days. 143 00:08:26,800 --> 00:08:29,360 Speaker 4: He was really one of the healthiest guys I'd ever met. 144 00:08:29,520 --> 00:08:33,280 Speaker 4: We'd go to the cafeteria and he'd get a piece 145 00:08:33,320 --> 00:08:36,560 Speaker 4: of chicken and pick the fat off the chicken, even 146 00:08:36,640 --> 00:08:39,240 Speaker 4: because he was so particular about what was going into 147 00:08:39,240 --> 00:08:39,760 Speaker 4: his body. 148 00:08:40,520 --> 00:08:45,040 Speaker 1: That's Grant Mitchell, David's longtime friend, colleague and college roommate. 149 00:08:45,520 --> 00:08:48,920 Speaker 4: So in medical school you do rotations in different hospitals, 150 00:08:48,920 --> 00:08:52,959 Speaker 4: and we got posted out for our obi Gian rotation 151 00:08:53,880 --> 00:08:58,080 Speaker 4: in Bethlehem, Pennsylvania, outside of Philadelphia, and we were staying 152 00:08:58,120 --> 00:09:00,640 Speaker 4: in some dorms there and there was there's no gym, 153 00:09:00,840 --> 00:09:03,680 Speaker 4: and so that was not going to stop David from 154 00:09:03,679 --> 00:09:07,079 Speaker 4: working out. And so we found a tree outside of 155 00:09:07,120 --> 00:09:08,960 Speaker 4: the dorm there that had a nice branch. 156 00:09:09,400 --> 00:09:12,120 Speaker 2: The tree branch, he just looked too perfect. It was horizontal, 157 00:09:12,679 --> 00:09:13,960 Speaker 2: it was perfect, so. 158 00:09:14,080 --> 00:09:16,400 Speaker 4: We could hang from and do pull ups from. 159 00:09:17,760 --> 00:09:20,000 Speaker 2: And so yeah, every time we walked past this tree, 160 00:09:20,200 --> 00:09:22,400 Speaker 2: we had to do pulps before we went to treat patients. 161 00:09:22,440 --> 00:09:24,400 Speaker 2: So yeah, we had to get pull ups in every morning. 162 00:09:24,520 --> 00:09:27,480 Speaker 1: And in a weird way, that tree branch ended up 163 00:09:27,480 --> 00:09:32,320 Speaker 1: being an indicator that you were getting sick. 164 00:09:33,040 --> 00:09:35,920 Speaker 2: You're right, because as the weeks went on, I stopped 165 00:09:36,000 --> 00:09:38,640 Speaker 2: wanting to do the pull ups. I didn't have the 166 00:09:38,800 --> 00:09:40,880 Speaker 2: energy to do the pull ups. I actually hadn't thought 167 00:09:40,880 --> 00:09:43,920 Speaker 2: about that until you mentioned that. Now, yeah, I couldn't 168 00:09:43,960 --> 00:09:45,280 Speaker 2: do them. I was just dragging. 169 00:09:45,960 --> 00:09:48,400 Speaker 1: At this point in his third year of medical school, 170 00:09:48,920 --> 00:09:53,000 Speaker 1: David's mental focus was on his residency and passing exams. 171 00:09:53,400 --> 00:09:57,199 Speaker 1: But suddenly, and quite out of character, David was having 172 00:09:57,240 --> 00:09:59,199 Speaker 1: trouble keeping up physically. 173 00:10:00,600 --> 00:10:03,080 Speaker 2: Then the fatigue became this fatigue that I had never 174 00:10:03,160 --> 00:10:07,560 Speaker 2: experienced before. It was like this insatiable fatigue. It basically 175 00:10:07,559 --> 00:10:10,119 Speaker 2: like no matter how much I slept. I just was exhausted. 176 00:10:10,160 --> 00:10:12,960 Speaker 2: I couldn't get out of bed. I noticed lumps and 177 00:10:13,000 --> 00:10:15,800 Speaker 2: bumps in my neck and flewid around my ankles, and 178 00:10:16,720 --> 00:10:19,920 Speaker 2: I didn't want to go there mentally, but I knew 179 00:10:20,480 --> 00:10:22,959 Speaker 2: that if a patient walked into my office I was 180 00:10:23,000 --> 00:10:25,960 Speaker 2: a third year medicinistation walked into my room and I'm 181 00:10:25,960 --> 00:10:29,880 Speaker 2: the doctor looking at them, I would have been very concerned, 182 00:10:29,920 --> 00:10:32,160 Speaker 2: and I would have specifically said, I'm very worried that 183 00:10:32,240 --> 00:10:35,679 Speaker 2: you have an aggressive lymphoma, and in such an aggressive 184 00:10:35,720 --> 00:10:37,720 Speaker 2: lephoma that you know you might have a few weeks 185 00:10:37,720 --> 00:10:41,000 Speaker 2: to live. It was moving so rapidly, but I was 186 00:10:41,040 --> 00:10:43,200 Speaker 2: like trying to just block that out of my brain, 187 00:10:43,880 --> 00:10:46,480 Speaker 2: while at the same time I knew something really bad 188 00:10:46,640 --> 00:10:48,960 Speaker 2: was happening. I even told Grant one day. 189 00:10:49,080 --> 00:10:52,440 Speaker 4: He walked into the living room of our apartment and 190 00:10:52,559 --> 00:10:57,840 Speaker 4: he said, something is just wrong. I think I'm gonna die. 191 00:10:58,200 --> 00:11:02,000 Speaker 4: And David, what, You're not going to die? 192 00:11:02,160 --> 00:11:02,240 Speaker 5: Like? 193 00:11:02,600 --> 00:11:03,480 Speaker 4: What's gotten into you? 194 00:11:03,720 --> 00:11:06,520 Speaker 1: How did you process that? Maybe just the stress of 195 00:11:06,600 --> 00:11:08,080 Speaker 1: med school getting to him. 196 00:11:08,520 --> 00:11:11,120 Speaker 4: Yeah, I just thought that, you know, he was focused 197 00:11:11,120 --> 00:11:13,960 Speaker 4: on health and I didn't think much of it. Just 198 00:11:14,000 --> 00:11:16,880 Speaker 4: tell him to you know, relax, It's okay. A lot 199 00:11:16,880 --> 00:11:20,200 Speaker 4: of medical students go through this when they are in 200 00:11:20,280 --> 00:11:23,760 Speaker 4: medical school and they're learning thousands of different ailments that 201 00:11:23,840 --> 00:11:27,120 Speaker 4: can occur in the human body, and you start sort 202 00:11:27,120 --> 00:11:29,560 Speaker 4: of thinking about what's going on inside of you and 203 00:11:30,080 --> 00:11:33,760 Speaker 4: even get a little sense of paranoia and over diagnosis. 204 00:11:33,800 --> 00:11:36,280 Speaker 4: It's kind of a running joke within medical school. Everyone's 205 00:11:36,280 --> 00:11:39,000 Speaker 4: sort of diagnosing themselves and all the different things that 206 00:11:39,040 --> 00:11:41,679 Speaker 4: could be happening. And so I just thought it was. 207 00:11:41,600 --> 00:11:46,080 Speaker 1: That, in addition to the exhaustion and swelling, David was 208 00:11:46,160 --> 00:11:49,760 Speaker 1: noticing rashes and redness popping up all over his body. 209 00:11:50,200 --> 00:11:53,280 Speaker 1: It was clear that whatever was going on it needed 210 00:11:53,360 --> 00:11:58,360 Speaker 1: immediate attention, but David, being hyper focused, was determined to 211 00:11:58,400 --> 00:12:01,800 Speaker 1: make it through his obgyn exam before turning his attention 212 00:12:02,000 --> 00:12:02,840 Speaker 1: towards himself. 213 00:12:03,360 --> 00:12:05,959 Speaker 2: I remember, while I'm taking the exam, just like full 214 00:12:06,000 --> 00:12:09,320 Speaker 2: body sweating. I'm like shivering, I like can't keep my 215 00:12:09,360 --> 00:12:12,800 Speaker 2: eyes open. But I went from taking the exam and 216 00:12:12,800 --> 00:12:14,400 Speaker 2: I went down the hall and I just I went 217 00:12:14,400 --> 00:12:18,280 Speaker 2: straight to the er and they took me back almost immediately. 218 00:12:18,600 --> 00:12:21,240 Speaker 2: They I just was I was so ill, and they 219 00:12:21,240 --> 00:12:24,520 Speaker 2: did blood work, and I'll never forget my doctor walking 220 00:12:24,520 --> 00:12:28,640 Speaker 2: into the room and saying, David, your liver, your kidneys, 221 00:12:29,320 --> 00:12:34,760 Speaker 2: your bone marrow, your heart, and your lungs are shutting down. 222 00:12:35,280 --> 00:12:37,000 Speaker 2: We have to hospitalize you right away. And I'm like 223 00:12:37,040 --> 00:12:39,840 Speaker 2: sitting and I'm like, but I was just treating patients 224 00:12:39,880 --> 00:12:42,280 Speaker 2: down the hall, like a couple days ago. 225 00:12:43,880 --> 00:12:47,679 Speaker 3: We weren't taking a break at this point, and I 226 00:12:47,720 --> 00:12:50,959 Speaker 3: remember being on Facebook and seeing a lot of people 227 00:12:51,000 --> 00:12:54,040 Speaker 3: writing on his page, I'm praying for you, I'm thinking 228 00:12:54,040 --> 00:12:57,160 Speaker 3: about you. So I was wondering what was going on. 229 00:12:58,200 --> 00:13:01,120 Speaker 2: I hope that it was maybe some virus, because viruses 230 00:13:01,120 --> 00:13:02,920 Speaker 2: come and go. You might get really sick, but it'll 231 00:13:02,960 --> 00:13:04,600 Speaker 2: be gone at some point. We hope it was a virus. 232 00:13:04,720 --> 00:13:06,760 Speaker 2: Didn't turn out to be a virus. We then thought 233 00:13:06,760 --> 00:13:08,920 Speaker 2: maybe it's not an immune disease, but you know, none 234 00:13:08,920 --> 00:13:11,080 Speaker 2: of that immune disease tests were coming back, and then 235 00:13:11,360 --> 00:13:13,440 Speaker 2: that sort of left us with, like, what's the other 236 00:13:13,480 --> 00:13:15,160 Speaker 2: thing that could be caused in this sort of the big, bad, 237 00:13:15,240 --> 00:13:18,600 Speaker 2: scary thing, and that was lymphoma. But the tests we 238 00:13:18,600 --> 00:13:21,440 Speaker 2: were doing weren't giving us an answer. And that was 239 00:13:21,440 --> 00:13:24,200 Speaker 2: actually one of the last really vivid memories I have 240 00:13:25,040 --> 00:13:27,800 Speaker 2: from what then turned into hospitalization, where I just became 241 00:13:28,440 --> 00:13:31,440 Speaker 2: more and more confused and less and less aware of 242 00:13:31,480 --> 00:13:32,120 Speaker 2: what was going on. 243 00:13:33,760 --> 00:13:36,520 Speaker 1: David and his family found themselves in an all too 244 00:13:36,600 --> 00:13:41,240 Speaker 1: familiar and painful situation, gathered around a hospital bed, only 245 00:13:41,320 --> 00:13:45,680 Speaker 1: this time David as the patient. Doctors performed a bone 246 00:13:45,720 --> 00:13:50,920 Speaker 1: marrow biopsy, PET scans MRIs, a liver biopsy, among other tests, 247 00:13:51,360 --> 00:13:55,000 Speaker 1: none of which provided clarity around the cause of these symptoms. 248 00:13:55,559 --> 00:13:59,800 Speaker 1: David was given high dose corticosteroids, a common practice in 249 00:13:59,840 --> 00:14:02,319 Speaker 1: the I see you when there is no clear path 250 00:14:02,400 --> 00:14:07,000 Speaker 1: to treatment, and as the days and weeks progressed, David's 251 00:14:07,040 --> 00:14:09,120 Speaker 1: illness was impossible to ignore. 252 00:14:10,679 --> 00:14:15,240 Speaker 2: The physical morph was pretty incredible, and sometimes you have 253 00:14:15,320 --> 00:14:18,240 Speaker 2: to see the pictures to really understand. But I'll try 254 00:14:18,240 --> 00:14:21,880 Speaker 2: to describe what happened to me. So, because my liver 255 00:14:21,920 --> 00:14:25,000 Speaker 2: and my kidneys stopped working, what happens is you start 256 00:14:25,000 --> 00:14:28,600 Speaker 2: getting fluid all over your body. So I gained what 257 00:14:28,680 --> 00:14:31,280 Speaker 2: we estimate to be close to one hundred pounds. Now 258 00:14:31,320 --> 00:14:34,680 Speaker 2: imagine at the same time, you're not eating because you're 259 00:14:34,760 --> 00:14:37,560 Speaker 2: so sick, and you can't keep down any food, and 260 00:14:38,120 --> 00:14:41,440 Speaker 2: your immune system is literally ravaging all your vital organs. 261 00:14:41,760 --> 00:14:44,720 Speaker 2: So as a result, you lose all of the muscle 262 00:14:44,760 --> 00:14:46,960 Speaker 2: mass and any lean mass that you have. So you're 263 00:14:47,080 --> 00:14:51,040 Speaker 2: left with a body that has one hundred pounds of fluid, 264 00:14:51,480 --> 00:14:55,320 Speaker 2: has lost fifty to sixty pounds of muscle. You're just 265 00:14:55,480 --> 00:15:01,200 Speaker 2: bone and fluid everywhere. You're just like a swollen, you know, skeleton. Basically, 266 00:15:01,680 --> 00:15:02,520 Speaker 2: that's what I looked like. 267 00:15:04,240 --> 00:15:06,440 Speaker 4: The pictures that we have of him in the hospital 268 00:15:07,240 --> 00:15:10,320 Speaker 4: are not even close to how bad it was, and 269 00:15:10,400 --> 00:15:14,600 Speaker 4: the reason for that was because David didn't want any pictures. 270 00:15:14,960 --> 00:15:18,360 Speaker 4: That's not how he wanted to be remembered. David thought 271 00:15:18,360 --> 00:15:18,920 Speaker 4: he was dying. 272 00:15:22,800 --> 00:15:26,360 Speaker 1: David was airlifted back to his hometown to the hospital 273 00:15:26,360 --> 00:15:29,240 Speaker 1: his father worked out of. He spent seven more weeks 274 00:15:29,280 --> 00:15:33,160 Speaker 1: there until he improved just enough to be discharged, only 275 00:15:33,160 --> 00:15:36,560 Speaker 1: to find himself right back where he was one month later. 276 00:15:37,200 --> 00:15:40,920 Speaker 1: After months of testing and hospitalization, David had a lymph 277 00:15:41,000 --> 00:15:45,880 Speaker 1: node biopsy, which returned some surprising results. 278 00:15:47,240 --> 00:15:49,880 Speaker 2: I wasn't talking, I wasn't doing anything. I was just 279 00:15:50,000 --> 00:15:53,200 Speaker 2: laying there. So imagine there's eleven weeks of like my 280 00:15:53,320 --> 00:15:56,600 Speaker 2: dad and my two sisters just being there for me, everything, 281 00:15:56,640 --> 00:15:59,440 Speaker 2: helping me to breathe. I didn't want to breathe like 282 00:15:59,800 --> 00:16:02,840 Speaker 2: just fighting for my life. And the first moment where 283 00:16:02,840 --> 00:16:04,480 Speaker 2: like the three of them are not in the room 284 00:16:05,000 --> 00:16:07,160 Speaker 2: is like the moment when the sturse comes in. So 285 00:16:07,200 --> 00:16:09,040 Speaker 2: she's like, you know, I got the news. I just figured, 286 00:16:09,120 --> 00:16:11,280 Speaker 2: you know, i'd deliver it to you. And she's like, 287 00:16:11,320 --> 00:16:13,680 Speaker 2: good news, it's not lymphoma. And then she looks at 288 00:16:13,680 --> 00:16:15,160 Speaker 2: the piece of paper because she like doesn't know what 289 00:16:15,200 --> 00:16:17,440 Speaker 2: the word is, like she's never seen it. She's like, uh, 290 00:16:17,560 --> 00:16:20,000 Speaker 2: you have something called Castleman's. I'm like, well, is that good? 291 00:16:20,040 --> 00:16:21,680 Speaker 2: Is that bad? She's like, well, it's not lymphoma. Like 292 00:16:22,440 --> 00:16:25,320 Speaker 2: it's great, I guess. And so here I am by 293 00:16:25,360 --> 00:16:27,720 Speaker 2: myself and I'm like great, it's like Castleman's Like, I 294 00:16:27,760 --> 00:16:30,200 Speaker 2: don't I'm a med student, but I don't remember learning 295 00:16:30,200 --> 00:16:31,680 Speaker 2: about it. I think maybe I heard it once in 296 00:16:31,720 --> 00:16:32,080 Speaker 2: my life. 297 00:16:32,760 --> 00:16:36,000 Speaker 4: So good news. We know what it is. So what 298 00:16:36,040 --> 00:16:37,880 Speaker 4: do you do when you first hear about something you 299 00:16:37,880 --> 00:16:38,520 Speaker 4: want to learn more? 300 00:16:38,560 --> 00:16:39,160 Speaker 2: You google it. 301 00:16:39,440 --> 00:16:41,160 Speaker 4: Then you see the Wikipedia page. 302 00:16:41,800 --> 00:16:43,520 Speaker 2: The way that it was described was that it was 303 00:16:43,560 --> 00:16:45,760 Speaker 2: just uniformly fatal and everyone died within a couple of 304 00:16:45,840 --> 00:16:48,920 Speaker 2: years of diagnosis. And I was just devastated to read 305 00:16:48,920 --> 00:16:49,800 Speaker 2: about this disease. 306 00:16:50,520 --> 00:16:54,320 Speaker 1: Castleman disease is a rare condition that causes the immune 307 00:16:54,360 --> 00:16:58,840 Speaker 1: system to go into hyperdrive, attacking organs and bodily pathways. 308 00:16:59,280 --> 00:17:02,360 Speaker 1: In the United State, they're only about five thousand new 309 00:17:02,400 --> 00:17:06,920 Speaker 1: cases annually, with each prognosis varying based on the subtype. 310 00:17:07,359 --> 00:17:11,760 Speaker 1: David was unfortunately diagnosed with one of the most aggressive variations. 311 00:17:11,800 --> 00:17:14,959 Speaker 1: Desperate to quickly find a treatment that worked, David was 312 00:17:15,000 --> 00:17:19,960 Speaker 1: transferred to the hematology and oncology ward at Duke in Durham, 313 00:17:20,000 --> 00:17:20,840 Speaker 1: North Carolina. 314 00:17:21,680 --> 00:17:24,480 Speaker 2: When I was at Duke for my second hospitalization, I 315 00:17:24,600 --> 00:17:28,280 Speaker 2: was so sick that my doctors encouraged my family to 316 00:17:28,280 --> 00:17:29,080 Speaker 2: say goodbye to me. 317 00:17:30,000 --> 00:17:33,200 Speaker 4: It was shocking. You know, we were still very young. 318 00:17:33,640 --> 00:17:36,840 Speaker 4: It was the time in our lives where we were 319 00:17:37,000 --> 00:17:39,440 Speaker 4: energized to you know, we were healthy, we were young, 320 00:17:39,520 --> 00:17:41,760 Speaker 4: we were ready to go conquer the world. And to 321 00:17:41,800 --> 00:17:47,080 Speaker 4: see the person among us that seems the strongest transformed 322 00:17:47,119 --> 00:17:49,720 Speaker 4: so abruptly was startling. 323 00:17:49,960 --> 00:17:51,200 Speaker 6: Was it was hard to process. 324 00:17:52,320 --> 00:17:54,920 Speaker 4: I didn't think it was even real, like, surely he'll 325 00:17:54,960 --> 00:18:00,239 Speaker 4: just be fine soon. And that changed dramatically for us 326 00:18:00,280 --> 00:18:02,960 Speaker 4: when they ultimately told him that they didn't know what 327 00:18:03,000 --> 00:18:07,760 Speaker 4: else they could do. I'll never forget the moment when 328 00:18:08,760 --> 00:18:10,160 Speaker 4: a priest came in to read. 329 00:18:09,960 --> 00:18:12,680 Speaker 2: Me my last rites. That was in November of twenty ten. 330 00:18:12,680 --> 00:18:13,879 Speaker 2: I was twenty five years old. 331 00:18:14,400 --> 00:18:18,200 Speaker 4: Then a few of his friends came in and ultimately 332 00:18:18,280 --> 00:18:22,240 Speaker 4: hugged him goodbye. And I think everyone tried to keep 333 00:18:22,400 --> 00:18:25,480 Speaker 4: a positive outlook. You know you're going to be okay, 334 00:18:25,560 --> 00:18:29,639 Speaker 4: And I remember I couldn't really keep it together. David 335 00:18:29,640 --> 00:18:31,880 Speaker 4: and I talked about that a lot. He says that 336 00:18:33,040 --> 00:18:35,320 Speaker 4: he almost knew how bad it was. When I came 337 00:18:35,359 --> 00:18:39,520 Speaker 4: in the room. You saw my face because I couldn't 338 00:18:39,600 --> 00:18:44,200 Speaker 4: hide how horrifying it was to see him in that state. 339 00:18:45,040 --> 00:18:47,359 Speaker 2: Yeah, and when you administer your last rounds, when you 340 00:18:47,359 --> 00:18:50,480 Speaker 2: say goodbye to your family, you don't do it like 341 00:18:50,920 --> 00:18:53,479 Speaker 2: thinking that I'm going to get another shot at this. 342 00:18:53,640 --> 00:18:54,840 Speaker 2: It's like this is it. 343 00:19:01,800 --> 00:19:04,919 Speaker 1: David, who had been the physical ideal of athleticism and 344 00:19:05,040 --> 00:19:10,240 Speaker 1: health just months before, was now unrecognizable, seemingly at the 345 00:19:10,320 --> 00:19:13,280 Speaker 1: end of his fight with Castleman, Caitlyn traveled to visit 346 00:19:13,320 --> 00:19:16,560 Speaker 1: him in the hospital. Despite no longer dating at the time, 347 00:19:17,000 --> 00:19:19,200 Speaker 1: there was still a connection between them. 348 00:19:19,800 --> 00:19:22,560 Speaker 3: If this was going to be the last time I 349 00:19:22,640 --> 00:19:25,760 Speaker 3: wanted to talk to him, just to hold his hand, 350 00:19:26,040 --> 00:19:27,560 Speaker 3: to see how he was doing. 351 00:19:28,320 --> 00:19:31,359 Speaker 2: I can barely form sentences. I don't know what the 352 00:19:31,400 --> 00:19:35,040 Speaker 2: heck's going on. I'm confused, and this is going to 353 00:19:35,080 --> 00:19:36,480 Speaker 2: be the last time Caitlyn's going to see me. I'm 354 00:19:36,480 --> 00:19:38,560 Speaker 2: going to able to tell her the things that I 355 00:19:38,640 --> 00:19:41,239 Speaker 2: want to tell her. So she came to visit me 356 00:19:41,440 --> 00:19:44,879 Speaker 2: multiple times, and each time I somehow communicated to my 357 00:19:44,880 --> 00:19:46,920 Speaker 2: sisters that I didn't want her to come in the room. 358 00:19:47,760 --> 00:19:49,879 Speaker 3: I thought that maybe he didn't know that I was 359 00:19:49,920 --> 00:19:52,760 Speaker 3: trying to see him, because you know, I had his 360 00:19:52,760 --> 00:19:54,320 Speaker 3: phone number and I would reach out and I just 361 00:19:54,600 --> 00:19:56,800 Speaker 3: you know, wouldn't hear back from him. So then I 362 00:19:56,840 --> 00:19:58,840 Speaker 3: would reach out to his sisters and just see and 363 00:19:59,760 --> 00:20:02,160 Speaker 3: i'd I did think that they were maybe they were 364 00:20:02,160 --> 00:20:04,840 Speaker 3: mad at me because I broke up with him, and 365 00:20:05,280 --> 00:20:07,520 Speaker 3: you know, I thought maybe there was like something like petty, 366 00:20:07,600 --> 00:20:10,200 Speaker 3: but like there wasn't. They were just protecting their brother. 367 00:20:10,840 --> 00:20:14,320 Speaker 2: I regret that because who cares if I didn't look 368 00:20:14,359 --> 00:20:16,360 Speaker 2: like my former self? And who cares, you know, if 369 00:20:16,359 --> 00:20:17,560 Speaker 2: I didn't say the right words. 370 00:20:19,359 --> 00:20:22,160 Speaker 1: David had now come to the brink of death twice 371 00:20:22,359 --> 00:20:24,359 Speaker 1: in a span of three months. 372 00:20:24,720 --> 00:20:27,560 Speaker 2: Turned out that there were no FD approved drugs, but 373 00:20:27,600 --> 00:20:29,280 Speaker 2: there were a couple of drugs that have been tried, 374 00:20:29,320 --> 00:20:32,160 Speaker 2: particularly chemotherapies, and one of them worked for a little 375 00:20:32,160 --> 00:20:34,040 Speaker 2: bit of time, and then I started to relapse. 376 00:20:34,680 --> 00:20:38,840 Speaker 1: While the chemo suppressed David's immune system, stopping Castleman from 377 00:20:38,880 --> 00:20:42,359 Speaker 1: attacking his body, it also took a heavy toll on 378 00:20:42,480 --> 00:20:46,160 Speaker 1: David's ability to fight. But there was one last hope 379 00:20:46,240 --> 00:20:48,240 Speaker 1: waiting for him in Arkansas. 380 00:20:48,560 --> 00:20:50,520 Speaker 2: I learned that there was the world's expert was in 381 00:20:50,520 --> 00:20:54,000 Speaker 2: Little Rock, Arkansas. So I traveled out to the mecca 382 00:20:54,000 --> 00:20:56,680 Speaker 2: of Castleman disease. I've been given the plan, like I'm 383 00:20:56,680 --> 00:20:58,320 Speaker 2: going to be on an experimental drug, who was going 384 00:20:58,320 --> 00:21:00,359 Speaker 2: into going a clinical trial, and everyone was working for 385 00:21:00,400 --> 00:21:02,040 Speaker 2: a bunch of people, and I was like, oh my gosh, 386 00:21:02,040 --> 00:21:04,080 Speaker 2: Like you know, we'd been praying for this for my 387 00:21:04,160 --> 00:21:06,359 Speaker 2: mom and we never got it. But now here we 388 00:21:06,359 --> 00:21:08,240 Speaker 2: were for me, like maybe we got this. This is 389 00:21:08,240 --> 00:21:10,959 Speaker 2: like the drug we've been waiting for. And you know, 390 00:21:11,080 --> 00:21:14,280 Speaker 2: just before I was supposed to fly back to North Carolina, 391 00:21:14,280 --> 00:21:17,120 Speaker 2: which is where my family lives, to recover, the test 392 00:21:17,160 --> 00:21:19,399 Speaker 2: results came back from my Little Rock visit that my 393 00:21:19,480 --> 00:21:21,840 Speaker 2: labs were all horrible and my organs were all shutting 394 00:21:21,880 --> 00:21:26,000 Speaker 2: down again. So we actually were we were actually in 395 00:21:26,040 --> 00:21:28,240 Speaker 2: the airport in Little Rock getting ready to leave, and 396 00:21:28,240 --> 00:21:35,119 Speaker 2: then we just went back to the hospital. That was 397 00:21:35,160 --> 00:21:38,359 Speaker 2: the beginning of about a seven week long hospitalization where 398 00:21:38,640 --> 00:21:40,359 Speaker 2: I sort of went off the cliff again. 399 00:21:41,359 --> 00:21:44,919 Speaker 1: My gosh, you you had to go through this cycle 400 00:21:45,000 --> 00:21:49,280 Speaker 1: so many times. How did you find the strength in 401 00:21:49,280 --> 00:21:51,720 Speaker 1: those moments to just keep going? 402 00:21:52,000 --> 00:21:55,399 Speaker 2: Yeah? I think for me, there were a few things 403 00:21:55,440 --> 00:21:58,359 Speaker 2: that helped me to keep fighting. I mean, for one, 404 00:21:58,760 --> 00:22:01,760 Speaker 2: I felt like I had this unfinished business to do. 405 00:22:01,880 --> 00:22:03,880 Speaker 2: Like I promised my mom, I was going to find 406 00:22:03,960 --> 00:22:06,840 Speaker 2: drugs for people suffering from diseases. And I'm a third 407 00:22:06,920 --> 00:22:09,959 Speaker 2: year med student. I'm sort of like finally somewhat trained 408 00:22:09,960 --> 00:22:12,360 Speaker 2: to start helping people, and then now I'm gonna go 409 00:22:12,440 --> 00:22:14,399 Speaker 2: out and never be able to do the thing that 410 00:22:14,440 --> 00:22:18,080 Speaker 2: I promised my mom. Another one was just the amazing 411 00:22:18,119 --> 00:22:21,080 Speaker 2: support I got from my family. My sister's never left 412 00:22:21,119 --> 00:22:23,439 Speaker 2: my side, my dad never left my side. I just 413 00:22:23,480 --> 00:22:26,679 Speaker 2: wanted to be with them longer, Like, I just wanted 414 00:22:26,680 --> 00:22:28,359 Speaker 2: more time with them. 415 00:22:28,680 --> 00:22:32,440 Speaker 1: Having traveled nearly one thousand miles to the world's foremost 416 00:22:32,480 --> 00:22:37,680 Speaker 1: Castleman expert. David recognized the continued cycle of chemotherapy would 417 00:22:37,680 --> 00:22:41,200 Speaker 1: inevitably catch up to him. That's when things changed. He 418 00:22:41,320 --> 00:22:44,560 Speaker 1: was no longer content to merely be the patient. 419 00:22:46,240 --> 00:22:49,119 Speaker 2: My doctor explains to me that like we tried everything, 420 00:22:49,119 --> 00:22:52,280 Speaker 2: there's nothing else that we can do, and I just 421 00:22:52,400 --> 00:22:54,720 Speaker 2: hit rock bottom. I thought I'm going to get to 422 00:22:54,800 --> 00:22:59,080 Speaker 2: work and tried to find a treatment for this disease 423 00:22:59,240 --> 00:23:03,240 Speaker 2: to save my life. 424 00:23:03,480 --> 00:23:07,879 Speaker 1: We'll be right back with Symptomatic, a Medical Mystery Podcast. 425 00:23:10,800 --> 00:23:18,560 Speaker 1: Now back to Symptomatic, a Medical Mystery Podcast. David Fagenbaum, 426 00:23:18,720 --> 00:23:22,360 Speaker 1: once a college quarterback and powerlifting champion, was coming out 427 00:23:22,359 --> 00:23:26,760 Speaker 1: of his third hospitalization from Castleman disease. After the only 428 00:23:26,960 --> 00:23:31,000 Speaker 1: known drug to help treat Castleman failed. David went through 429 00:23:31,119 --> 00:23:36,680 Speaker 1: seven weeks of multi agent chemotherapy, daily blood transfusions, and dialysis. 430 00:23:39,040 --> 00:23:42,480 Speaker 1: David and his family returned home to North Carolina, fearful 431 00:23:42,720 --> 00:23:45,560 Speaker 1: of when the next relapse would begin, But this time 432 00:23:45,680 --> 00:23:47,200 Speaker 1: he had a little extra support. 433 00:23:51,800 --> 00:23:55,439 Speaker 2: So this stage, this is when I had lost my 434 00:23:55,480 --> 00:23:58,920 Speaker 2: hair from chemotherapy. I still had about fifty pounds of 435 00:23:58,920 --> 00:24:01,000 Speaker 2: fluid all over my body. My belly, you know, was 436 00:24:01,119 --> 00:24:06,200 Speaker 2: indistinguishable from someone who would be eight months pregnant and Caitlin, 437 00:24:06,600 --> 00:24:07,960 Speaker 2: she was at my door. 438 00:24:09,240 --> 00:24:11,520 Speaker 3: I didn't know how bad it was when I was there, 439 00:24:11,560 --> 00:24:14,320 Speaker 3: because no one gave me the details. When I was 440 00:24:14,359 --> 00:24:17,440 Speaker 3: reaching out to his sisters, no one said, this is it. 441 00:24:17,520 --> 00:24:20,280 Speaker 3: He's being read his last right. I didn't find these 442 00:24:20,280 --> 00:24:23,280 Speaker 3: things out until later, which almost helped. It kind of 443 00:24:23,320 --> 00:24:24,720 Speaker 3: helped me cope. 444 00:24:25,520 --> 00:24:27,400 Speaker 2: And she said to me, I want us to get 445 00:24:27,400 --> 00:24:30,359 Speaker 2: back together. I'd been hoping for that for so long, 446 00:24:30,800 --> 00:24:32,960 Speaker 2: but here I am with like this horrible, deadly disease. 447 00:24:33,160 --> 00:24:35,680 Speaker 2: I don't think any human could have more baggage than 448 00:24:35,760 --> 00:24:38,919 Speaker 2: I had at that moment, just being like, or are 449 00:24:39,000 --> 00:24:41,680 Speaker 2: you sure? Like you know, I got a what going on? 450 00:24:41,840 --> 00:24:44,399 Speaker 2: You know, got this horrible deadly disease, Like are you sure? 451 00:24:44,480 --> 00:24:48,080 Speaker 2: And she looked at me like she was offended that 452 00:24:48,200 --> 00:24:51,239 Speaker 2: I was asking her that, like of course, like are 453 00:24:51,600 --> 00:24:53,199 Speaker 2: you kidding me? Like of course, I want us to 454 00:24:53,200 --> 00:24:55,760 Speaker 2: get back together, And it was like that's exactly what 455 00:24:55,800 --> 00:24:56,160 Speaker 2: I needed. 456 00:24:56,160 --> 00:24:59,159 Speaker 3: In that moment, I knew it was him, it was 457 00:24:59,200 --> 00:25:01,760 Speaker 3: still him in it, so it just didn't matter the 458 00:25:01,760 --> 00:25:02,760 Speaker 3: physical appearance. 459 00:25:03,320 --> 00:25:05,560 Speaker 1: Is there a moment that you look back where you 460 00:25:05,760 --> 00:25:08,879 Speaker 1: worried because it was just too much for David. 461 00:25:09,560 --> 00:25:11,680 Speaker 3: I mean, it was definitely when his doctors said that 462 00:25:11,760 --> 00:25:14,040 Speaker 3: they've tried everything and there was nothing else that they 463 00:25:14,080 --> 00:25:16,840 Speaker 3: could do. That's when Dave was like, I got to 464 00:25:16,880 --> 00:25:19,320 Speaker 3: take this into my hands. What can I do for myself? 465 00:25:20,240 --> 00:25:22,400 Speaker 2: If I'm going to hope for a drug to save 466 00:25:22,440 --> 00:25:25,280 Speaker 2: my life, Like, shouldn't I be acting or like doing 467 00:25:25,320 --> 00:25:27,960 Speaker 2: something to get there. So for me, it was Okay, 468 00:25:27,960 --> 00:25:29,560 Speaker 2: I'm going to get involved in research. I'm going to 469 00:25:29,600 --> 00:25:31,680 Speaker 2: build an organization called the Castle, his client or network. 470 00:25:31,680 --> 00:25:35,600 Speaker 2: I'm going to start conducting laboratory research myself, and I'm 471 00:25:35,640 --> 00:25:36,520 Speaker 2: going to get to work. 472 00:25:36,960 --> 00:25:39,359 Speaker 3: In Dave fashion, that's how he copes. He's going to 473 00:25:39,400 --> 00:25:42,439 Speaker 3: fix it. So we were his doers, and he was 474 00:25:42,480 --> 00:25:46,040 Speaker 3: the fixer while he's in the hospital bed having ice 475 00:25:46,080 --> 00:25:48,080 Speaker 3: packs under his arms because he has fevers. 476 00:25:48,600 --> 00:25:52,240 Speaker 4: And for someone who is as focused as Dave, there's 477 00:25:52,280 --> 00:25:54,400 Speaker 4: nothing that will focus you more in this life than 478 00:25:54,600 --> 00:25:57,920 Speaker 4: staring down that clock. You know, we call it a 479 00:25:58,000 --> 00:26:01,040 Speaker 4: dream team, but you know, David was the engine. David 480 00:26:01,119 --> 00:26:02,240 Speaker 4: was the force behind it all. 481 00:26:02,320 --> 00:26:03,520 Speaker 1: He was quarteracking it. 482 00:26:04,920 --> 00:26:06,920 Speaker 4: Absolutely. He slotted right in in that role. 483 00:26:07,480 --> 00:26:10,520 Speaker 1: David spent the next six months at home regaining his strength, 484 00:26:10,880 --> 00:26:14,720 Speaker 1: and although the experimental drug still tuxamab, that David had 485 00:26:14,800 --> 00:26:18,040 Speaker 1: taken failed to help him recover, he was now using 486 00:26:18,080 --> 00:26:20,679 Speaker 1: it in hopes that it would work as a preventative measure. 487 00:26:21,119 --> 00:26:23,520 Speaker 1: He returned to medical school and got to work on 488 00:26:23,600 --> 00:26:25,400 Speaker 1: finding a cure for castlemen. 489 00:26:25,880 --> 00:26:27,880 Speaker 2: We weren't just going to hope that Santa's elves were 490 00:26:27,880 --> 00:26:30,480 Speaker 2: going to like magically come up with some brilliant idea 491 00:26:30,560 --> 00:26:33,040 Speaker 2: and do the research. We simply said, what should we do? 492 00:26:33,440 --> 00:26:35,159 Speaker 2: We asked everyone that, and then we simply found the 493 00:26:35,160 --> 00:26:36,720 Speaker 2: best people in the world to do the things that 494 00:26:36,760 --> 00:26:39,679 Speaker 2: were prioritized to us. So that was one major shift, 495 00:26:39,680 --> 00:26:43,160 Speaker 2: and the other one was again a very simple realization, 496 00:26:43,240 --> 00:26:45,959 Speaker 2: and that was it costs between one and two billion 497 00:26:46,000 --> 00:26:48,520 Speaker 2: dollars to create a new drug from scratch, and that 498 00:26:48,560 --> 00:26:51,520 Speaker 2: can take ten to fifteen years for one drug. So 499 00:26:51,520 --> 00:26:53,160 Speaker 2: I didn't have a billion dollars. I didn't have ten 500 00:26:53,160 --> 00:26:55,480 Speaker 2: to fifteen years. So I say, okay, well, how else 501 00:26:55,480 --> 00:26:59,040 Speaker 2: could I potentially be treated? Well, all those chemotherapies that 502 00:26:59,040 --> 00:27:01,120 Speaker 2: I got that saved my life, if they weren't made 503 00:27:01,119 --> 00:27:03,760 Speaker 2: for castleman disease? What if there's some other drug out 504 00:27:03,760 --> 00:27:05,399 Speaker 2: there that wasn't made for Castle disease. I mean, the 505 00:27:05,480 --> 00:27:07,840 Speaker 2: chemo doesn't work long term, but it's saved my life 506 00:27:07,880 --> 00:27:11,200 Speaker 2: a few times. I appreciate the chemo. Is there something else? 507 00:27:11,640 --> 00:27:14,879 Speaker 2: So that became my mission. Can I figure out what's 508 00:27:14,920 --> 00:27:17,920 Speaker 2: going wrong in my body? And then can I figure 509 00:27:17,920 --> 00:27:20,040 Speaker 2: out is there a drug that's already FDA proved for 510 00:27:20,119 --> 00:27:22,119 Speaker 2: some other disease that might actually be able to be 511 00:27:22,240 --> 00:27:25,000 Speaker 2: useful for my disease that I thought could save my life. 512 00:27:25,520 --> 00:27:28,240 Speaker 1: David recruited experts from all over the world to join 513 00:27:28,280 --> 00:27:33,560 Speaker 1: the Castleman Disease Collaborative Network or CDCN, and diligently continued 514 00:27:33,560 --> 00:27:37,480 Speaker 1: his lab research to understand what was happening in his body. 515 00:27:37,880 --> 00:27:41,960 Speaker 1: Despite all the effort toward finding a cure, David experienced 516 00:27:41,960 --> 00:27:44,520 Speaker 1: a four to three lapse in April of twenty twelve, 517 00:27:44,920 --> 00:27:49,240 Speaker 1: after his longest stretch of stability. The now standard playbook 518 00:27:49,280 --> 00:27:52,240 Speaker 1: for a flare up, David gets a massive round of chemo, 519 00:27:52,880 --> 00:27:55,679 Speaker 1: all while trying to maintain some sort of normalcy in 520 00:27:55,680 --> 00:27:56,240 Speaker 1: his life. 521 00:27:57,080 --> 00:28:00,359 Speaker 2: So this stage, Caitlin and I are engaged, gage to 522 00:28:00,359 --> 00:28:03,439 Speaker 2: get married in May twenty four, twenty fourteen, and I 523 00:28:03,480 --> 00:28:05,080 Speaker 2: know that I'm not going to make it there at 524 00:28:05,080 --> 00:28:08,160 Speaker 2: the current rate. I Actually my last relapse was while 525 00:28:08,200 --> 00:28:10,880 Speaker 2: I was getting weekly chemotherapy for the first time ever. 526 00:28:10,960 --> 00:28:13,520 Speaker 2: We were like, let's try a preventive chemo, which is 527 00:28:13,520 --> 00:28:16,080 Speaker 2: not a thing, but let's try it like in advance 528 00:28:16,119 --> 00:28:18,760 Speaker 2: and see if that'll stop it. And it still roared 529 00:28:18,760 --> 00:28:20,479 Speaker 2: its head, it's still exploded. Still put me in nice 530 00:28:20,520 --> 00:28:22,280 Speaker 2: to you for a month. So that didn't work. 531 00:28:22,800 --> 00:28:25,879 Speaker 4: It's impossible to work backwards from there to figure out 532 00:28:26,080 --> 00:28:29,640 Speaker 4: what went wrong that led to it. And it occurred 533 00:28:29,640 --> 00:28:33,320 Speaker 4: to us that instead of taking samples from his blood 534 00:28:33,480 --> 00:28:37,720 Speaker 4: while he was in the throes of these flares, we 535 00:28:37,720 --> 00:28:41,560 Speaker 4: should take those samples before and after, and we should 536 00:28:41,560 --> 00:28:45,400 Speaker 4: do it every few weeks so that we can study 537 00:28:45,880 --> 00:28:51,520 Speaker 4: maybe the progenitor markers of what is initiating this cascade, 538 00:28:51,960 --> 00:28:53,960 Speaker 4: and if we can find out what's going on early 539 00:28:54,160 --> 00:28:57,200 Speaker 4: before it goes full blown, maybe we can stop the 540 00:28:57,240 --> 00:28:58,600 Speaker 4: cascade from ever occurring. 541 00:29:00,000 --> 00:29:03,040 Speaker 2: I've said goodbye to my family five times, and this 542 00:29:03,080 --> 00:29:05,480 Speaker 2: thing's going to keep coming back. So if I wanted 543 00:29:05,480 --> 00:29:07,240 Speaker 2: to make it to May twenty four to twenty fourteen, 544 00:29:07,800 --> 00:29:09,680 Speaker 2: I had to take some action and it had to 545 00:29:09,720 --> 00:29:13,120 Speaker 2: be a pretty in hindsight like sort of crazy step, 546 00:29:13,120 --> 00:29:15,160 Speaker 2: and that is to start testing one of these drugs 547 00:29:15,160 --> 00:29:17,480 Speaker 2: that I was studying in the lab on myself. 548 00:29:18,520 --> 00:29:20,920 Speaker 3: I was like, what are the side effects? 549 00:29:21,240 --> 00:29:21,440 Speaker 1: You know? 550 00:29:22,040 --> 00:29:24,160 Speaker 3: He was like, it could either work or you know, 551 00:29:24,240 --> 00:29:29,040 Speaker 3: it doesn't work. So I just I was very confused. 552 00:29:29,080 --> 00:29:32,120 Speaker 3: I was like, are you sure, like yourself, you're going 553 00:29:32,200 --> 00:29:35,520 Speaker 3: to try this on yourself? And so I was very 554 00:29:35,600 --> 00:29:37,400 Speaker 3: unsure about it. I didn't have a lot of faith 555 00:29:37,880 --> 00:29:40,280 Speaker 3: that this was going to work. I felt like we 556 00:29:40,320 --> 00:29:42,760 Speaker 3: were just going to be in the same place fifteen 557 00:29:42,960 --> 00:29:43,600 Speaker 3: months later. 558 00:29:44,200 --> 00:29:45,440 Speaker 1: Was that your biggest fear? 559 00:29:45,920 --> 00:29:48,000 Speaker 3: Yeah, that it was just going to be a cycle. 560 00:29:49,560 --> 00:29:52,600 Speaker 1: As David Battle's Castleman disease for the fifth time, he 561 00:29:52,680 --> 00:29:56,360 Speaker 1: starts to put his research to the test, trying drugs 562 00:29:56,400 --> 00:29:59,560 Speaker 1: that will target the immune system. First on the list, 563 00:30:00,160 --> 00:30:04,120 Speaker 1: it started taking cyclosporin. While he showed no signs of improvement, 564 00:30:04,520 --> 00:30:09,000 Speaker 1: his condition didn't worsen, which seemed positive. He then moved 565 00:30:09,000 --> 00:30:12,840 Speaker 1: on to the second drug, iv ig, hoped David feel 566 00:30:12,840 --> 00:30:16,800 Speaker 1: better almost immediately. Blood tests were finally heading in the 567 00:30:16,840 --> 00:30:21,000 Speaker 1: right direction, only for Castleman disease to knock David down 568 00:30:21,080 --> 00:30:24,040 Speaker 1: once again. A few weeks later, it was back to 569 00:30:24,120 --> 00:30:28,080 Speaker 1: the old playbook and David had to undergo another massive 570 00:30:28,160 --> 00:30:28,880 Speaker 1: round of chemo. 571 00:30:29,920 --> 00:30:32,560 Speaker 2: There was some real heartbreak, right. It was like, Caitlin, 572 00:30:32,600 --> 00:30:34,280 Speaker 2: I've been doing this work in the lab. I've been 573 00:30:34,320 --> 00:30:36,640 Speaker 2: experimenting on my own blood samples and been experimenting on 574 00:30:36,720 --> 00:30:39,280 Speaker 2: flypto tissue. That's like the moment where you want to 575 00:30:39,280 --> 00:30:41,920 Speaker 2: try these drugs to see, like while you're getting worse, 576 00:30:41,960 --> 00:30:45,320 Speaker 2: like does it stabilize things? And it didn't And that 577 00:30:45,400 --> 00:30:46,120 Speaker 2: was heartbreaking. 578 00:30:46,760 --> 00:30:50,120 Speaker 4: And the tricky thing about this disease is that you 579 00:30:50,200 --> 00:30:55,000 Speaker 4: don't necessarily know if it's working or not until you 580 00:30:55,120 --> 00:30:59,320 Speaker 4: don't have a flare. So you have to wait. And 581 00:30:59,360 --> 00:31:03,400 Speaker 4: these flares are happen about every year. So let's say 582 00:31:03,440 --> 00:31:05,960 Speaker 4: a flare occurs and then you realize the drug that 583 00:31:06,080 --> 00:31:09,360 Speaker 4: uron didn't work, and now you try a new drug 584 00:31:09,400 --> 00:31:13,920 Speaker 4: after the flare subsides, and it doesn't just subside. You 585 00:31:13,960 --> 00:31:18,000 Speaker 4: have to obliterate your immune system with seven agent chemo 586 00:31:18,320 --> 00:31:21,720 Speaker 4: to stop it. And then once you survive that onslaught 587 00:31:22,080 --> 00:31:25,080 Speaker 4: of toxic drugs and you say, okay, now we'll try 588 00:31:25,120 --> 00:31:25,960 Speaker 4: a new drug and. 589 00:31:25,920 --> 00:31:28,160 Speaker 2: I don't know how I survived that fifth one. They 590 00:31:28,200 --> 00:31:31,760 Speaker 2: gave me like humanly impossible doses. I was like taking 591 00:31:31,800 --> 00:31:34,480 Speaker 2: like large animal doses of chemo, but I knew that 592 00:31:34,520 --> 00:31:35,680 Speaker 2: it wasn't gonna work long term. 593 00:31:36,320 --> 00:31:40,440 Speaker 1: I can't imagine watching someone you love suffer the way 594 00:31:40,520 --> 00:31:46,800 Speaker 1: he obviously suffered with all of those relapses, but particularly 595 00:31:46,800 --> 00:31:50,040 Speaker 1: in the case of the chemo, the treatment seemed even 596 00:31:50,120 --> 00:31:56,600 Speaker 1: worse than the disease. How grueling was it to watch 597 00:31:56,880 --> 00:32:00,240 Speaker 1: him go through a cycle of relapses. 598 00:32:01,360 --> 00:32:06,280 Speaker 3: It was just like such a letdown when you would think, like, 599 00:32:06,640 --> 00:32:09,040 Speaker 3: he just did the chemo, and now he's he's been 600 00:32:09,080 --> 00:32:11,680 Speaker 3: better for sixteen to eighteen months, and then all of 601 00:32:11,720 --> 00:32:15,000 Speaker 3: a sudden, you know, it happens again. It was just 602 00:32:15,080 --> 00:32:18,120 Speaker 3: so frustrating, like how many times can a body get 603 00:32:18,120 --> 00:32:19,400 Speaker 3: this much chemotherapy. 604 00:32:20,440 --> 00:32:24,000 Speaker 1: After recovering from his fifth barrage of chemo, David looks 605 00:32:24,040 --> 00:32:27,040 Speaker 1: at the last option on the table from his research 606 00:32:27,680 --> 00:32:31,560 Speaker 1: getting to know Castleman disease. Through their experimentation, Grant and 607 00:32:31,680 --> 00:32:35,960 Speaker 1: David learned that his subtype causes the bodily communication line 608 00:32:36,120 --> 00:32:40,960 Speaker 1: called intour to go into overdrive. Imtour tells the immune 609 00:32:41,040 --> 00:32:44,760 Speaker 1: system to mobilize and activates T cells. To go to 610 00:32:44,840 --> 00:32:49,360 Speaker 1: war attacking foreign cells or in David's case, his own. 611 00:32:50,120 --> 00:32:52,440 Speaker 2: I thought that, hey, why don't use an M tour inhibitor. 612 00:32:52,480 --> 00:32:53,960 Speaker 2: I mean again, it was very simple, as there was 613 00:32:53,960 --> 00:32:56,320 Speaker 2: too much. This communication line looked like it was turned 614 00:32:56,320 --> 00:32:59,280 Speaker 2: into overdrive. Here's a drug that turns it off, let's 615 00:32:59,280 --> 00:32:59,680 Speaker 2: try it. 616 00:33:00,360 --> 00:33:03,000 Speaker 4: We were at a point where there was a no 617 00:33:03,120 --> 00:33:08,000 Speaker 4: regret move to try something else, and that was something 618 00:33:08,000 --> 00:33:12,960 Speaker 4: called sri Limas it is isolated from a fungus found 619 00:33:13,000 --> 00:33:17,280 Speaker 4: in the soil of Easter Island. It hits the intour 620 00:33:17,440 --> 00:33:23,240 Speaker 4: pathway and reduces T cell activation. Maybe it could prevent 621 00:33:23,320 --> 00:33:25,760 Speaker 4: the cascade that ultimately led to cyt, a kind storm 622 00:33:25,760 --> 00:33:26,920 Speaker 4: that would attack his body. 623 00:33:27,320 --> 00:33:31,760 Speaker 2: This was the third and frankly probably the last possible attempt. 624 00:33:32,520 --> 00:33:35,320 Speaker 2: There weren't many more drugs on our list of possibilities, 625 00:33:35,480 --> 00:33:38,200 Speaker 2: and there wasn't much more time, so it probably was 626 00:33:38,280 --> 00:33:41,080 Speaker 2: the last ditch effort after like many last ditch. 627 00:33:40,920 --> 00:33:46,480 Speaker 1: Efforts, now taking the only medication left on the table, 628 00:33:46,840 --> 00:33:50,440 Speaker 1: David and Caitlin did have something worth looking forward to 629 00:33:50,480 --> 00:33:54,120 Speaker 1: their wedding, But what was weighing on David's mind the 630 00:33:54,360 --> 00:33:57,800 Speaker 1: issue of the hair on his head or lack thereof. 631 00:33:58,720 --> 00:34:01,080 Speaker 4: I remember we were in the tel room getting ready 632 00:34:01,120 --> 00:34:04,400 Speaker 4: for the wedding and he had just started to grow 633 00:34:04,440 --> 00:34:08,160 Speaker 4: his hair back. He was so protective of every hair 634 00:34:08,239 --> 00:34:12,640 Speaker 4: on his head. You know, it didn't look good. It 635 00:34:12,680 --> 00:34:16,319 Speaker 4: was just kind of like thinly there and a little 636 00:34:16,320 --> 00:34:19,000 Speaker 4: bit on his neck. And like I was like, David, 637 00:34:19,040 --> 00:34:22,719 Speaker 4: let me just shave these hairs on the back of 638 00:34:22,760 --> 00:34:25,120 Speaker 4: your neck and so you can look nice and trim 639 00:34:25,280 --> 00:34:26,200 Speaker 4: for your wedding day. 640 00:34:26,480 --> 00:34:29,080 Speaker 2: And I told him absolutely not, because my hair had 641 00:34:29,160 --> 00:34:30,840 Speaker 2: just come in, Like I got like my hair started 642 00:34:30,840 --> 00:34:33,239 Speaker 2: to grow like two weeks before my wedding day, so 643 00:34:33,280 --> 00:34:34,719 Speaker 2: it kind of looked like I just had this like 644 00:34:35,280 --> 00:34:38,279 Speaker 2: very short buzz cut or something. But but yeah, I had. 645 00:34:38,320 --> 00:34:41,200 Speaker 2: I had your neck hair had grown back, and Grant's like, 646 00:34:41,280 --> 00:34:43,080 Speaker 2: let me clean you up. It's your wedding now. I'm like, no, 647 00:34:43,239 --> 00:34:47,200 Speaker 2: Like every every follicle matters, like you're not. There's every 648 00:34:47,280 --> 00:34:49,919 Speaker 2: hair that is on my head it is staying there. 649 00:34:50,680 --> 00:34:51,319 Speaker 1: I love that. 650 00:34:52,120 --> 00:34:56,839 Speaker 4: But it was just awesome because, like I said, after 651 00:34:56,880 --> 00:34:59,200 Speaker 4: I hugged him goodbye that day, I didn't think I'd 652 00:34:59,200 --> 00:34:59,799 Speaker 4: ever seen him. 653 00:34:59,680 --> 00:35:05,520 Speaker 1: Again, having already been through until death. Do us part 654 00:35:06,400 --> 00:35:09,560 Speaker 1: what did it mean to exchange vows? What did your 655 00:35:09,600 --> 00:35:12,879 Speaker 1: wedding mean to you? On a deeper level. 656 00:35:13,320 --> 00:35:14,759 Speaker 3: It was so powerful. 657 00:35:14,840 --> 00:35:19,520 Speaker 5: It was like those words were so real where I 658 00:35:19,520 --> 00:35:22,719 Speaker 5: feel like people just say those as their vowels, but 659 00:35:24,040 --> 00:35:27,439 Speaker 5: really we meant them so much to each other. 660 00:35:27,800 --> 00:35:30,439 Speaker 3: We had already been through it. Yeah, it just meant 661 00:35:30,480 --> 00:35:31,239 Speaker 3: so much to us. 662 00:35:31,880 --> 00:35:34,359 Speaker 1: As David and Caitlin now looked towards the future, they 663 00:35:34,360 --> 00:35:37,560 Speaker 1: couldn't help but be troubled by lingering thoughts of fear. 664 00:35:38,040 --> 00:35:42,920 Speaker 1: Will Castleman disease return and if so, what other possible 665 00:35:42,960 --> 00:35:44,840 Speaker 1: options are left on the table. 666 00:35:45,880 --> 00:35:47,839 Speaker 4: We didn't know right away if it was working or not. 667 00:35:48,239 --> 00:35:50,520 Speaker 3: We kind of just waited each month and we're like, 668 00:35:51,160 --> 00:35:51,760 Speaker 3: is it coming? 669 00:35:52,160 --> 00:35:55,600 Speaker 4: Is it coming? We had to wait a full year 670 00:35:56,280 --> 00:35:59,520 Speaker 4: to see if he was going to undergo another flare. 671 00:36:00,160 --> 00:36:03,000 Speaker 4: So eight months go by, around the edge of our seat, 672 00:36:03,440 --> 00:36:08,040 Speaker 4: twelve months go by, we're watching and waiting. Fourteen months, 673 00:36:09,000 --> 00:36:10,560 Speaker 4: sixteen eighteen. 674 00:36:10,400 --> 00:36:13,719 Speaker 3: Nineteen months, twenty months, twenty one months, two years go by, 675 00:36:13,960 --> 00:36:16,520 Speaker 3: and it wasn't coming back. We were kind of like, 676 00:36:17,040 --> 00:36:18,360 Speaker 3: oh my gosh, something's working. 677 00:36:19,280 --> 00:36:22,719 Speaker 4: Months and months after, longer than he'd ever been in 678 00:36:22,760 --> 00:36:27,160 Speaker 4: remission or not in flair. My god, my god, he's okay. 679 00:36:27,800 --> 00:36:29,440 Speaker 4: We think we found a. 680 00:36:29,440 --> 00:36:36,239 Speaker 2: Cure, the Mari Linus. That's the one that worked, and 681 00:36:36,239 --> 00:36:39,120 Speaker 2: that's why I'm here and I'm on this podcast. Right 682 00:36:39,160 --> 00:36:42,480 Speaker 2: If it didn't work, I'm not here. Ten years ago 683 00:36:42,840 --> 00:36:46,840 Speaker 2: is when I pass and I'm very much a memory 684 00:36:46,920 --> 00:36:49,920 Speaker 2: for Caitlin and my family. But it's because we connected 685 00:36:49,920 --> 00:36:52,719 Speaker 2: on that last one that I'm still here and that 686 00:36:53,360 --> 00:36:55,440 Speaker 2: now I can continue to pursue this for other people. 687 00:37:00,480 --> 00:37:08,719 Speaker 1: How did this shape your perspective once it went into remission, 688 00:37:08,840 --> 00:37:10,240 Speaker 1: if I may use that word. 689 00:37:10,239 --> 00:37:12,600 Speaker 2: Yeah, absolutely, I do like to use that word. And 690 00:37:13,280 --> 00:37:15,680 Speaker 2: ever since this remission started, I just have this feeling 691 00:37:15,760 --> 00:37:17,600 Speaker 2: of overtime. It's like, Okay, I don't know when the 692 00:37:17,600 --> 00:37:19,839 Speaker 2: disease could come back, and of course there's more and 693 00:37:19,840 --> 00:37:22,040 Speaker 2: more days go by, the more confident I feel that, 694 00:37:22,080 --> 00:37:24,640 Speaker 2: you know, maybe we've really, you know, gotten this disease 695 00:37:25,000 --> 00:37:28,040 Speaker 2: under full control. But it's just given me this urgency 696 00:37:28,480 --> 00:37:30,080 Speaker 2: where it's like I got to do as many things 697 00:37:30,080 --> 00:37:30,680 Speaker 2: as I can do. 698 00:37:31,400 --> 00:37:35,040 Speaker 3: When we finally got off the hamster wheel, Yeah, it 699 00:37:35,160 --> 00:37:38,520 Speaker 3: was just like I can just like feel it even 700 00:37:38,560 --> 00:37:40,960 Speaker 3: saying it to you right now, I can feel like 701 00:37:41,080 --> 00:37:44,520 Speaker 3: weight just coming off my chest. Like in that moment, 702 00:37:44,760 --> 00:37:47,719 Speaker 3: we were so relieved. 703 00:37:49,000 --> 00:37:51,880 Speaker 1: David Fagenbaum was pushed to the brink of death five 704 00:37:52,040 --> 00:37:55,719 Speaker 1: times before finally finding a medicine that sent his Castleman 705 00:37:55,800 --> 00:37:59,600 Speaker 1: disease into remission. David and Caitlin didn't just make it 706 00:37:59,640 --> 00:38:03,360 Speaker 1: to their first wedding anniversary, they're now celebrating their tenth 707 00:38:03,480 --> 00:38:07,160 Speaker 1: and counting, along with the two adorable children they welcomed 708 00:38:07,200 --> 00:38:07,879 Speaker 1: along the way. 709 00:38:08,719 --> 00:38:11,000 Speaker 3: We're just so much more grateful for the small things. 710 00:38:11,800 --> 00:38:14,399 Speaker 3: Amelia is having her preschool graduation and now Dave gets 711 00:38:14,400 --> 00:38:17,560 Speaker 3: to be like her preschool graduation, so like huge milestone 712 00:38:17,560 --> 00:38:20,920 Speaker 3: for our family. We're just so grateful for that, just 713 00:38:21,040 --> 00:38:23,400 Speaker 3: having him be able to come to her dance recital. 714 00:38:24,200 --> 00:38:26,759 Speaker 3: We're just so grateful that we are in this overtime 715 00:38:27,200 --> 00:38:30,880 Speaker 3: for our family. And I truly believe our overtime is 716 00:38:30,880 --> 00:38:32,160 Speaker 3: going to go on for a long time. 717 00:38:36,880 --> 00:38:40,040 Speaker 1: Just as living through his mother's cancer treatment pushed him 718 00:38:40,040 --> 00:38:43,520 Speaker 1: to study medicine, living through Castleman disease lit a new 719 00:38:43,560 --> 00:38:44,800 Speaker 1: fire within David. 720 00:38:45,400 --> 00:38:47,920 Speaker 2: You know, after finding out that Sea Lions could save 721 00:38:48,000 --> 00:38:50,560 Speaker 2: my life, all I've been able to think about for 722 00:38:50,600 --> 00:38:54,000 Speaker 2: these last ten years is how many more drugs are 723 00:38:54,000 --> 00:38:56,600 Speaker 2: sitting out there they could be life saving for other people. 724 00:38:56,640 --> 00:38:59,279 Speaker 2: I mean, I was walking back and forth past this 725 00:38:59,440 --> 00:39:01,480 Speaker 2: CBS that ended up being the place where I got 726 00:39:01,480 --> 00:39:04,520 Speaker 2: my srial limis from. For years, it was always there, 727 00:39:05,040 --> 00:39:07,440 Speaker 2: and like, for years I'm sick with this horrible disease, 728 00:39:07,480 --> 00:39:09,279 Speaker 2: I'm in the ICU, and then I'm home, and then 729 00:39:09,320 --> 00:39:13,040 Speaker 2: I'm back in the ICU, and all along that pill 730 00:39:13,080 --> 00:39:15,280 Speaker 2: bottle with serrial limis, and it had been there because 731 00:39:15,280 --> 00:39:18,520 Speaker 2: it's a proof for kidney transplant rejection and it's utilized 732 00:39:18,560 --> 00:39:20,719 Speaker 2: by people all over the world, but it's not used 733 00:39:20,719 --> 00:39:24,280 Speaker 2: for Castleman's And it's like, oh my gosh, how many 734 00:39:24,320 --> 00:39:26,919 Speaker 2: more of those drugs at your CBS could be life 735 00:39:26,960 --> 00:39:29,480 Speaker 2: saving for you or someone you love. I mean, like, 736 00:39:29,520 --> 00:39:33,040 Speaker 2: what is the untapped potential within our medical system? 737 00:39:33,480 --> 00:39:37,120 Speaker 1: And Grant you decided to join him in this pursuit. 738 00:39:37,760 --> 00:39:41,160 Speaker 4: Yeah, And we called all the researchers in the world 739 00:39:41,200 --> 00:39:43,320 Speaker 4: that might know anything about this disease. There were only 740 00:39:43,640 --> 00:39:46,200 Speaker 4: twenty of them or so, and we invited them all 741 00:39:46,200 --> 00:39:49,799 Speaker 4: to a conference. And I'll never forget sitting there at 742 00:39:49,800 --> 00:39:52,600 Speaker 4: the head of the table with David. So this is David, 743 00:39:52,640 --> 00:39:56,160 Speaker 4: I'm grant, you know, and we're here to cure castleman disease. 744 00:39:56,560 --> 00:40:00,640 Speaker 4: And just seeing these researchers he had been at this 745 00:40:00,680 --> 00:40:05,520 Speaker 4: for years around the table kind of chuckle and say, okay, kids, 746 00:40:05,600 --> 00:40:07,920 Speaker 4: you know, good luck. You know, we'll try and be helpful. 747 00:40:08,440 --> 00:40:11,719 Speaker 4: It's just one of those moments where we were young 748 00:40:11,719 --> 00:40:13,680 Speaker 4: and naive enough to have the audacity to think that 749 00:40:13,960 --> 00:40:14,760 Speaker 4: we could do anything. 750 00:40:16,280 --> 00:40:20,120 Speaker 1: Unlocking the off label potential of approved medicines will quickly 751 00:40:20,120 --> 00:40:22,680 Speaker 1: be put to the test. In Part two of David's story, 752 00:40:23,200 --> 00:40:26,240 Speaker 1: join us next week as David crosses paths with another 753 00:40:26,360 --> 00:40:31,040 Speaker 1: patient battling castleman disease, Gary Gravina, who is clinging to 754 00:40:31,120 --> 00:40:32,879 Speaker 1: life during a terrifying flare up. 755 00:40:33,680 --> 00:40:37,480 Speaker 6: My wife started to notice that my stomach was getting larger, 756 00:40:37,680 --> 00:40:40,040 Speaker 6: and I wasn't really eating because I felt so ill, 757 00:40:40,760 --> 00:40:43,840 Speaker 6: and so for me to be putting on weight was weird. 758 00:40:44,520 --> 00:40:46,399 Speaker 6: I'm thinking, well, this is going to be something really 759 00:40:46,400 --> 00:40:48,239 Speaker 6: simple and they're going to take care of it. And 760 00:40:48,280 --> 00:40:50,400 Speaker 6: then when they started talking about admitting me, I'm like, 761 00:40:51,000 --> 00:40:53,880 Speaker 6: come on, this is this is not something like that. 762 00:40:53,920 --> 00:40:55,280 Speaker 6: I don't need to be in the hospital. 763 00:40:55,280 --> 00:40:56,200 Speaker 2: This is ridiculous. 764 00:40:56,680 --> 00:40:58,680 Speaker 6: By the end of that week, I was in a 765 00:40:58,760 --> 00:41:00,279 Speaker 6: medically induced coma. 766 00:41:00,560 --> 00:41:04,359 Speaker 1: Having beaten back his own Castleman disease. David is determined 767 00:41:04,400 --> 00:41:05,799 Speaker 1: to help Gary fight his. 768 00:41:06,480 --> 00:41:09,680 Speaker 2: I'm told, hey, there's a patient with your subtype of 769 00:41:09,719 --> 00:41:12,480 Speaker 2: Castleman's that you know, this very rare subtype. All of 770 00:41:12,480 --> 00:41:16,640 Speaker 2: his organs are obviously failing, and he looks just like 771 00:41:16,760 --> 00:41:19,800 Speaker 2: me when I was at my sikess. I remember telling 772 00:41:19,840 --> 00:41:21,239 Speaker 2: him that, you know, we're going to beat this. 773 00:41:22,000 --> 00:41:24,760 Speaker 1: But when David's course of action for Gary doesn't work, 774 00:41:25,200 --> 00:41:28,840 Speaker 1: they find themselves thrust into the same desperate race against time. 775 00:41:29,280 --> 00:41:31,240 Speaker 1: David knows all too well. 776 00:41:31,440 --> 00:41:35,319 Speaker 6: I was in a coma and I was just, you know, 777 00:41:35,400 --> 00:41:38,360 Speaker 6: everything in me was tanking. All the things are connected 778 00:41:38,400 --> 00:41:40,960 Speaker 6: to you, and you're just kind of you feel apart 779 00:41:41,040 --> 00:41:45,600 Speaker 6: from everything, and I can just remember crying tears of frustration. 780 00:41:54,840 --> 00:41:58,400 Speaker 1: Symptomatic and Medical Mystery Podcast is a production of Ruby 781 00:41:58,480 --> 00:42:02,400 Speaker 1: Studio from iHeartMedia. Our show is hosted by me Lauren 782 00:42:02,440 --> 00:42:07,279 Speaker 1: brat Pacheco. Executive producers are Matt Romano and myself. Our 783 00:42:07,320 --> 00:42:11,319 Speaker 1: EP of post production is James Foster. Our producers are 784 00:42:11,360 --> 00:42:15,000 Speaker 1: Sierra Kaiser and John Irwin. And this episode was researched 785 00:42:15,000 --> 00:42:16,160 Speaker 1: by Diana Davis