Chasing My Cure

by David Fajgenbaum

  How many other drugs are there like this, just sitting on shelves in pharmacies? Unfortunately, few incentives exist for pharmaceutical companies to invest in expensive clinical trials to determine if an already FDA-approved drug may be effective for a rare condition. And when clinical trials are performed, the data are rarely submitted to the FDA for approval in this new use. The whole process is just too expensive and time-consuming. And there are potential downsides: If the drug elicits new side effects in the trial for the rare disease, its approval for the original disease is put at risk. We need to incentivize the study of already approved treatments for patients with no other options. Both my uncle and I are living proof that there could be many other options already out there for many patients, we just haven’t discovered them…yet.

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  As I write this, I’m the healthiest I’ve been since I became ill, in 2010 (though I no longer exercise—not because I can’t, but because I want all of my energy to go toward unmasking this disease and spending time with Caitlin and other loved ones). I had five deadly episodes in the first three and a half years after becoming ill. Since I took over my treatment, I haven’t had a single relapse in five years, which is by far the longest stretch of health for me since my diagnosis. This remission is about seven times as long as my previous average remissions. I feel confident saying that sirolimus is extending my life. It is amazing to think that it had always been less than a mile away at my neighborhood pharmacy, but no one had thought to use it. Sometimes the answer is hiding in plain sight.

  But the war is far from over. It’s not the end, because we haven’t cured Castleman disease yet and patients are still suffering from this disease. With recent media exposure, I get a lot of congratulatory emails for “curing your disease.” Unfortunately, these are premature. No doubt, to use a football metaphor, we were backed up near our own goal line in 2012 and the game was basically over. But, against all odds, we have taken back the momentum and we’re marching down the field. Today, we’re approaching midfield. We’re locked in on several promising leads. But the clock is ticking and we need help chasing our cure. We still have a ways to go—for me and for the thousands of other people in the fight of their lives with this disease. And I know that if we don’t continue to push forward, no one else will.

  And I know I’m not totally in the clear. My disease can come back at any moment. At the same time that I’m getting further from my last relapse, I’m likely getting closer to my next recurrence. But despite that, when I do get sick again, it won’t be the same as before—because the medical community’s understanding and treatment of iMCD have changed. And I’ve changed. I’ve learned the difference between being hopeful and being invincible in hope, as my mom’s newspaper clipping said. There’s a big difference, as big as the distance between wishing and doing. Knowing that I’m doing everything humanly possible to unlock the mysteries of this disease in the time before my next relapse helps me to worry less about when, and dare I say if, it will come. I won’t have any regrets. I will have fought with everything I’ve got. And I will have enjoyed every moment of this journey chasing hope and life around the track.

  I CONSIDER MYSELF to be very fortunate.

  Not always in the literal sense—I’ve clearly had some pretty lousy luck in the health department. But my experience has liberated me to follow my passions and has given me peace, knowing that I’m making the most of every day while my clock is ticking. I have an incredible sense of purpose now, and I feel as though I have powers I never could have imagined before I got sick. Now I lead an army, and I get to watch people I’ve helped motivate strike back against the thing that almost killed me, and that continues to threaten and shorten lives around the world.

  On August 19, 2018, my fortunes turned yet again. I rushed down the halls of Pennsylvania Hospital just as I had many times before—to perform CPR (unsuccessfully), to administer the umpteenth mental status exam to George and (successfully) reconnect him with his daughter, to get a power nap in Ben Franklin’s old library. I even passed by the same security guard I had passed so many times in my early days working in the hospital. But this time was different. Caitlin and I were rushing down the halls together to deliver our first child, the newest AMF: Amelia Marie Fajgenbaum. Almost exactly eight years after I lay in the ICU wishing and hoping that I’d be able to survive so that one day I could have a family with Caitlin. And thirty-one years after Caitlin was born in the very same hospital. I got to see life, my daughter’s life in the same place where I’d seen so much tragedy and where I’d sharpened my sword.

  I have wept tears of joy only five times in my life: when my mom joked that she looked like the Chiquita Banana Lady after her brain surgery, when I learned of my mom’s clean MRI scan during a freshman seminar at Georgetown, when Caitlin said yes to my proposal, when I finally began to turn the tide against Castleman disease with the addition of IVIg, and when I first laid eyes on Amelia. The joy hasn’t stopped either—Amelia has brought more happiness to us in her young life than we could have ever imagined.

  A lot had to occur for this to happen. Broadly speaking, I had to turn my hope for a future family with Caitlin into actions that enabled me to survive. I had to let Santa Claus go after I realized that what I needed wouldn’t appear under the tree unless I put it there. More specifically, Caitlin had to accept me back into her life after I’d largely taken her for granted. And then she had to forgive my instructions to keep her from me when I first got sick.

  By the time this book comes out, I hope it will be more than five years since I’ll have last been sick. I can’t be certain that will be the case. But I’m doing everything in my power to make sure that my hope turns into reality. I can’t help but feel like this is a new overtime for me and my family.

  PEYTON WILLIAMS

  Before overtime: training for Georgetown football.

  Together with my sisters and parents before heading off for my freshman year at Georgetown (2003).

  AP PHOTO/JONATHAN FREDIN

  Losing my mother, whose photo I am holding here, was devastating. Starting the AMF support network and holding fundraising events in her honor—like the 2006 Boot Camp 2 Beat Cancer—were the only silver linings.

  CHRISTOPHER WATTERS

  I first became mysteriously sick in the middle of medical school, 2010. With my vital organs failing, I drifted in and out of consciousness. No matter what, though, my dad always had my back.

  I was finally discharged from the hospital for the first extended period in the spring of 2011, but not before being confused for my dad’s pregnant wife because of my distended belly. Despite the circumstances, we laughed hard at that.

  A year later, in May 2012, I was back in the hospital with another relapse, but I was optimistic and felt ready for war this time around.

  SIMON GRIFFITHS

  During my relapse in May 2012, I learned that I had run out of treatment options. I promised my family that I would dedicate the rest of my life—however long it might be—to finding a cure for this disease. I got to work studying samples in the lab and building an international collaborative research network.

  Chemotherapy spared my life when I relapsed a year later—my fifth near-death episode. Our families and close friends threw Caitlin and me an engagement party a few weeks later. I was bald and weak, but we were together. Now I just needed to discover a new treatment to extend my life so that I could actually marry her…

  JESSICA KOURKOUNIS

  I started out chasing my own cure, but my work today is for the other Castleman disease patients that I have met along the way. Shown here are Katie, who was the second Castleman disease patient ever treated with the drug that I’m on, and Gary, who gave me a first-hand view into how scary it
is to watch someone you love battle Castleman disease. They’ve both generously contributed samples that I have studied in my lab.

  SHIRA YUDKOFF

  Thanks to my Wharton classmates, who rallied behind me when I relapsed during the early days of business school, we have started to turn the tide against Castleman disease. When I was asked to be the student speaker at the 2015 Wharton Commencement, I was so thrilled to be able to formally thank them. It was a very special moment for me.

  JESSICA KOURKOUNIS

  But we still have a lot of work to do to better understand Castleman disease and the workings of the immune system in myriad other diseases. I work like a maniac and often run out of white board space in my University of Pennsylvania office.

  SARAH DICICCO

  RACHEL UTAIN-EVANS

  The loves of my life: Caitlin and our daughter, Amelia.

  I would like to dedicate this book to my mom, my dad, my sisters, and Caitlin and Amelia. You taught me how to live, supported me when I was dying, and inspired me to chase cures for my disease and others. I love you.

  It may seem like my journey all came down to one decision that I made in early 2014. But it wasn’t just one decision and it certainly wasn’t just me. I literally wouldn’t be here today if I didn’t have a family who supported me and sustained me during my toughest moments. If I didn’t first have a mother whose encouragement of my dreams and crazy ideas gave me the courage to question the status quo for my disease. If I didn’t have an incredible army of CDCN physicians, researchers, volunteers, and supporters fighting alongside me. If so many other Castleman disease patients hadn’t channeled their hope through us by giving their blood samples, medical data, and donations. If I didn’t have so many people sharing words of encouragement and prayers as well as taking actions like visiting me when I was sick, attending CDCN events, and donating funding and time for research. These incredible people are helping to move their and my prayers closer to reality, making every second count, and creating silver linings along the way. I want to extend a huge thank-you to this great big group and say that your collective support has meant the world to me. If I’ve inadvertently left anyone out of these thanks, I am so sorry; I so appreciate everyone who has contributed to this fight.

  First and foremost, I have to start by thanking my amazing wife, Caitlin; my father, Dr. David Fajgenbaum; sisters Gena Fajgenbaum Combs and Lisa Fajgenbaum; brothers-in-law Chris Combs and Michael Prazenica; and Bernie and Patty Prazenica—my in-laws—for your unconditional love during my toughest times, my happiest moments, and my journey chasing my cure. My beautiful daughter, Amelia, even before you were born, the dream of you inspired me to keep fighting. My dreams of being part of your future continue to inspire me. I am eternally grateful to my grandparents, Patrick and Grace Fitzwilliam and Harry and Claudia Fajgenbaum. You taught me that family is the most important thing in life. Grandad Paddy, your ascension from the mailroom to CEO was an example to me that anything is possible with hard work and respect for others. I am so thankful for all of my aunts, uncles, and cousins in Trinidad, who remind me of my mom and the importance of living a balanced life. My cousin Phillip Fajgenbaum, from the time you were a little guy helping out at Ravenscroft football games and wearing Georgetown gear, you’ve always been in my corner. Thank you. Uncle Michael Fajgenbaum and Aunt Sylvia Fajgenbaum, thank you so much for your hospital visits and support.

  I consider myself so fortunate to have amazing friends who are like family. Your love has contributed in so many ways to my race for a cure. To my best friend, Ben Chesson, you’ve been a constant source of support, advice, and laughter ever since we were teenagers. It means so much to me that we’re both godfathers for our firstborns. Kelli Chesson, thanks so much for always laughing at our jokes and being such a great friend to Caitlin and me. To my godmother, Charlotte Harris, and your family, Steve Harris, Stephanie Sneeden, and Conner Harris, the world is a better place with each of you in it, and I am grateful for your being examples to me of how to live a purposeful life. The Zuccato family, I’ll never forget your believing in me and what the CDCN could achieve in our earliest days, even before I did. And you’ve contributed in so many ways to make our dreams become a reality.

  Marjorie Raines, you are one of the most caring and generous individuals that I have ever met. Knowing your son David and the kind of person he is, I shouldn’t have been surprised by how much you remind me of my mom. Your coming into my life when you did was one of my greatest blessings. Elana Amsterdam, you’re the only person I know who enjoys talking about the immune system and cytokines as much as I do. And, even more, I love brainstorming with you about ways to translate study of the immune system into improved health for those suffering with immune system diseases. Tony Ressler, I won’t soon forget meeting you for the first time at Georgetown. You saw potential in me as a leader and someone who could be inspirational to others, and I so appreciate your guidance and advice in helping to bring out some of the potential you saw. Glen de Vries, your relentless desire to help patients and to always ask what else you can do to support the Castleman disease fight—and then do it!—has meant more to me than I can ever put into words.

  Although my time at Georgetown included my mom’s death—the toughest experience of my young life—my Georgetown family helped me to work through my grief and have some of my best times. I’m forever indebted to Greg Davis, Liam Grubb, Ryan Dinsmore, Pete Fisher, Kate Fredrikson Windt, Matt Zambetti, John Lancaster, and Margaret Farland Griffin. Thank you for showing me how quickly strangers can become close friends and how that bond can last. Fran Buckley, as my “Georgetown mom” you have supported and looked out for me in ways that my mom would be thankful for. Dr. John Glavin, you always pushed me to “think big,” which inspired me to grow AMF beyond Georgetown. Dr. Bette Jacobs, you taught me everything I needed to know about compassionate leadership as the dean, a board member for AMF, and a board member for the CDCN. I am so grateful to Coach Bob Benson, Coach Joe Moorhead, Coach Rob Sgarlata, and all of my teammates on the 2003–2006 Georgetown football teams for the support you provided and life lessons you taught me. To all the members of the AMF family, which began at Georgetown and spread across the country, especially Marcie Gordon, Kiri Thompson, George Apelian, Allan From, Gary Hark, Tony Talerico, Pat Morrell, Josh Haymond, Tom Schaffer, Natasha Garcia, Ken Martin, Alison Malmon Mahowald, Phil Meilman, David Balk, Kelly Crace, Illene Cupit, Robin Lanzi, Heather Seruaty-Seib, Andrea Walker, Fran Solomon, and Kit McConnell, thank you for your support of me and grieving college students everywhere.

  Like my time at Georgetown, my time at Penn Med was marked by the highest of highs and the lowest of lows. The “PMBC,” led by Patrick Georgoff, Grant Garcia, Grant Mitchell, Ron Golan, Jeff Neal, Jason Hurd, Elisha Singer, Dan Kramer, Francisco Sanchez, Eamon McLaughlin, Ashwin Murthy, and Duncan Mackay, was always there to keep me smiling no matter what was going on. Penn Med faculty and leadership, such as Helene Weinberg and Drs. Jon Morris, Gail Morrison, and Arthur Rubenstein, helped me to get back on my feet after medical leaves so I could begin chasing my cure. Arthur, you took me under your wing and have guided me like a father.

  At Wharton, Andrew Towne, Alex Burtoft, Alana Rush, Kathy Feeney, and June Kinney were the first five people I opened up to about my personal battle with Castleman disease. I was terrified to do so, but each of you not only made me feel supported but asked how you could help and then jumped into action. Andrew, I am so grateful for the countless hours you invested in brainstorming ways to overcome challenges, fostering the right culture within our CDCN team, and encouraging our classmates to get involved. Andrew, Alex, Alana, Kathy, and June, each of your examples helped to garner support from our entire class, which generated the early momentum the CDCN needed, and it undoubtedly changed the course of history for Castleman disease.

  There a
re so many incredible people who built upon that momentum and pushed our work into uncharted territory. In addition to those already mentioned in the book, the efforts of the following have gone above and beyond: Helen Partridge, Michael Stief, Jenna Kapsar, Kevin Silk, Sophia Parente, Rozena Rasheed, Laura Bessen-Nichtberger, Kim and Nick Driscoll, Mary Guilfoyle, Craig Tendler, Jeff Faris, Emma and Andrew Haughton, Erin NaPier, Jasira Ziglar, Katherine Floess, Johnson Khor, Eric Haljasmaa, Mike Croglio, Amy Liu, Denise Leonardi, Martin Lukac, Ryan Hummel, Aaron Stonestrom, Colin Smith, Alex Suarez, Deanna Morra, Katie Stone, Cristina Kelly, Leo Adalbert, Julie Angelos, Michael Soileau, Molly Gannet, Steph Serafino, Sam Kass, Curran Reilly, Dale Kobrin, Wes Kaupinen, Greta Moretto, Alisa McDonald, Kate Innelli, Jenn Dikan, Nadine El Toukhy, Tony Forte, JC Diefenderfer, Ajay Raju, and Marc Brownstein. I also want to thank the full CDCN Board of Directors, Advisory Council, and Scientific Advisory Board, especially Drs. Frits van Rhee, Tom Uldrick, Corey Casper, Eric Oksenhendler, Amy Chadburn, Elaine Jaffe, Mary Jo Lechowicz, David Simpson, Nikhil Munshi, Gordan Srkalovic, Kazu Yoshizaki, and Alexander Fossa, as well as collaborators and mentors at Penn and beyond, such as Drs. Dan Rader, Lu Zhang, Vera Krymskaya, Kojo Elenitoba-Johnson, Megan Lim, Ivan Maillard, Angela Dispenzieri, Sunita Nasta, David Roth, Lynn Schuchter, Mike Parmacek, Larry Jameson, Dave Teachey, Dermot Kelleher, Mike Betts, and Taku Kambayashi. Taku, thank you for being such a great collaborator and co-mentor for Ruth-Anne. I want to thank Drs. Becky Connor and Arnie Freedman for your dedication to sharing accurate and up-to-date information with Castleman disease physicians worldwide. I am thankful and honored for the opportunity to lead the Castleman Disease Center at Penn and the CDCN—to be a leader among such outstanding leaders—with each of you.