Physician, Heal Thyself: A Memoir of Castleman Disease

John Camoriano, MD
Assistant Professor, Oncology and Consultant, Division of Hematology/Oncology, Department of Internal Medicine, Mayo Clinic, Scottsdale, AZ

In this edition, John Camoriano, MD, reviews Chasing My Cure: A Doctor’s Race to Turn Hope into Action, by David Fajgenbaum, MD, MBA.

Have you read any hematology-related books recently? Let us know what we should read and review by emailing us at ashclinicalnews@hematology.org.


Chasing My Cure, A Doctor’s Race to Turn Hope into Action by David Fajgenbaum

Can you remember your early years in medical training when you met that “sentinel” patient who kickstarted your interest in hematology as a career? In 1983, I was an intern on the medicine service at the Oklahoma City VA Medical Center. One Friday, I interviewed a frightened 45-year-old man with acute onset of fevers, adenopathy, and a peculiar rash. Not quite a lymphoma and not an obvious infection … whatever this condition was, my instructors had never covered it in medical school. I wrung my inexperienced hands as I watched him crash rapidly into a coma in the ICU over the next 48 hours.

My attending physician, the one who first taught me the old cliché, “When tumor is the rumor, tissue is the issue,” charged me with getting an urgent biopsy – a tall order on a Friday afternoon. But I was able to get it done, and on Tuesday morning, we got the results back: “multifocal Castleman disease; plasma cell variant.” Huh?

Neither my supervising resident nor the hematology fellow seemed to have any better idea of what this meant than I did, so I dove into the literature. Because this was in 1983, I discovered a vague and poorly described collection of the three primary variants of this disease: hyaline vascular type, plasma cell variant, and mixed type. There was a further subdivision into unifocal and multifocal – with our patient having the latter.

I was surprised to learn that the first description of the condition was in a clinicopathological case series published in the venerable New England Journal of Medicine. Benjamin Castleman, MD, was on the hot seat as the case discussant, trying to figure out the cause of a patient’s mysterious symptoms. He had the fortitude to present Case 40231 in 1954 as “a new disease.” (Of course, as an editor of that case series, Dr. Castleman had the literary license do it however he wanted.)

When I saw that patient as an intern, 30 years after Dr. Castleman had described the new disease, it also was unfortunately decades before the advent of our modern molecular technology. In the 1980s, a diagnosis did not always lead to a solution. We had no idea about the role of human herpes virus 8 or interleukin 6 in Castleman disease pathology, and no one had thought about designing antibody therapies directed at these yet-to-be elucidated components. Despite receiving an accurate diagnosis and high-dose steroids, my patient succumbed to the disastrous consequences of a cytokine storm and the misfortune of getting an illness three decades too soon.

Fast forward another 30 years, to 2013. A similar patient is brought into the hospital. This time, though, the roles are reversed: The medical trainee is the one afflicted with fever, adenopathy, and a peculiar rash that mystifies his much more modern doctors.

Chasing My Cure: A Doctor’s Race to Turn Hope into Action is the fast-paced, first-person account of a medical student who confronted his own brush with death and with this life-threatening “orphan” disease. The book is a suspense-filled tale of the collision of a devious, high-energy disease with an even more clever, higher-energy, would-be victim who (almost) single-handedly fulfilled the ancient dictum of “Physician, heal thyself.”

David Fajgenbaum MD, MBA, the author and chief protagonist of Chasing My Cure, exposes both the weaknesses and the strengths of our modern medical industrial complex. He deftly combines his initial naïve, open-eyed wonder as a medical student with the sudden shock and terror of becoming a very sick patient, complete with ICU tubing and Catholic last rites, in his battle with a mysterious illness.

I am a physician who is often charged with caring for patients like Dr. Fajgenbaum, so I was delighted and, at times, shamed by the twists and turns of his struggle with both his serious illness and the medical establishments charged with helping him.

The shame came from the realization that our own efforts to unravel this disease during the last 30 years were feeble compared with what Dr. Fajgenbaum accomplished in just a few years. Some of those accomplishments came from him being the right person in the right place at the right time, but it is also a great personal credit to him for his devotion to understanding the disease.

Chasing My Cure also is a tale of motivation leading to activation. It shows what having a fire burning under your own threatened derriere can do for any doctor willing to follow the molecular clues to an illness. Modern techniques of biobanking and gene sequencing helped to elucidate the promising leads he pursued in self-experimentation.

In our current era, the promise of targeted therapy guided by genomics and proteomics also has created a new dilemma: the birth of many new “orphan” diseases. Even breast cancer, once considered a monolithic entity, has been subcategorized into multiple silos of quite different orphan conditions based on mutation profiles, surface markers, tissues of origin, and so forth. The lessons exemplified in Dr. Fajgenbaum’s battle with Castleman disease are relevant to all patients suffering from not just rare diseases but also common malignancies.

In recounting his own story, Dr. Fajgenbaum educates the reader on values like humanism, the power of science, the virtue of tenacity (verging on audacity), and the importance of family. His exposé of medical practice and research is insightful and critical yet hopeful.

At times, his story seems to border on self-aggrandizement. However, once it dawned on me what this young man had actually accomplished, that misconception was corrected. Despite fighting his illness five separate times, he completed dual degrees in medicine and business, co-founded not one but two patient advocacy organizations, and pursued the love of his life to start a family. He also became one of the youngest physicians to land a National Institutes of Health R01 grant and perhaps the first to do so in order to help cure his own disease.

After finishing Dr. Fajgenbaum’s book, I was left with three questions:

  • What can I do to live a life as engaged as his?
  • What might we doctors accomplish if we pursued cures for our patients as if their lives were our own?
  • When will the movie come out?

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