Chasing My Cure: A Doctor Who Ran His Own Clinical Trial, and Why Almost No One Else Should

Chasing My Cure is David Fajgenbaum's account of surviving idiopathic multicentric Castleman disease (iMCD), a rare disorder that nearly killed him five times while he was a medical student, and of the research career he built afterward to find a treatment for it. Penguin Random House published it in September 2019, with the subtitle A Doctor's Race to Turn Hope into Action.

Spoilers ahead. Fajgenbaum survived and remains alive today, in remission since treating himself with a repurposed drug after his fifth relapse. This page does not withhold that outcome as a twist; the book itself is framed around his survival and what he built from it.

Fajgenbaum writes that his mother died of brain cancer while he was in college, and that he had entered medical school partly because of that experience. He then developed iMCD during his third year, an illness that caused his organs to fail as his immune system attacked his own body. He describes being given last rites at one point.

The book is not primarily a science book, though it moves through real biology. It is a first-person account of illness from the position of someone trained to understand it clinically, and of what he did with that training when standard treatment stopped working for him.

The book moves chronologically: his mother's death, medical school, the first onset of symptoms, a sequence of relapses that took him repeatedly to intensive care, a period of profound decline, and then the shift from patient to researcher as he began working, alongside his physicians, to understand his own case in enough depth to act on it.

A substantial portion of the book covers what he did after stabilizing: co-founding the Castleman Disease Collaborative Network, an organization built to pool clinical data and drive research on a disease that, being rare, had never attracted the sustained research attention that more common cancers receive. That section of the book functions as an argument about how rare-disease research gets funded and organized, not only as a personal narrative. It describes the practical machinery of that effort: recruiting other researchers who had never met each other or shared data before, building a biobank of patient samples, and pushing to make the disease's own natural history, meaning what typically happens to a patient over time, into something documented and shared rather than scattered across individual physicians' private case notes.

The most discussed portion describes his identification of a lab finding suggesting a specific immune pathway was overactive in his case, his connection of that finding to an existing immunosuppressant drug, sirolimus, and the decision, made with his physicians rather than alone, to try it after conventional options had been exhausted.

The book is strongest as an account of what it feels like to be a patient with medical training, watching your own case unfold and unable to simply defer to a process that, for a genuinely rare disease, may not have accumulated enough evidence to offer clear answers.

It is also honest, in a way memoirs of dramatic recovery often are not, about how much of his path depended on resources most patients do not have: access to research literature, colleagues willing to test an unconventional idea, and physicians willing to try an off-label treatment based on a case he helped build himself. He does not claim this was a normal patient experience, and the book is more interesting for not pretending otherwise.

Its account of building the Castleman Disease Collaborative Network is a genuinely useful window into how rare-disease research actually gets organized: patient registries, shared biosample collection, and structured collaboration among researchers who would otherwise be working in isolation on a disease too rare for any single center to study alone.

This is the book in the category most likely to be misread as a treatment guide, and it is worth being direct about why it is not one.

What worked for Fajgenbaum is, in the language of clinical research, a case report: a detailed account of one patient's outcome. Case reports are valuable because they generate hypotheses worth testing properly. They cannot, on their own, establish that a treatment is safe or effective, because a single favorable outcome cannot be distinguished from coincidence, an unusually mild case, or factors specific to that one patient. Fajgenbaum, as a physician himself, understands this distinction and does not claim his experience proves sirolimus works broadly for iMCD; the book itself notes that formal trials followed his own experience specifically because a single case was not enough to establish an answer.

It is also worth being honest about survivorship bias. This is a memoir by someone whose self-directed approach worked. A book cannot easily be written by someone for whom the same kind of improvised, high-risk approach did not work, which means the genre itself tends to select for dramatic successes rather than for the more common, quieter outcome of a self-directed treatment attempt that fails or causes harm.

Finally, iMCD itself is not formally classified as cancer, though it shares features with lymphoma and is managed in similar clinical settings. A reader arriving at this book because a family member has iMCD, rather than a cancer, should know that some of the broader cancer-specific guidance elsewhere on this site does not apply directly, even though the disease can behave aggressively and the emotional experience of a rare, poorly understood diagnosis overlaps closely with a cancer diagnosis.

There is also a narrower point worth making about timing. Fajgenbaum's decision to try sirolimus came after five relapses, extensive testing, and, crucially, after conventional treatments had already failed him. The book is clear that this was not a first resort. A reader early in a diagnosis, with standard options still available and untried, is in a different situation than the one the book describes at its most dramatic point, and the calculus around trying something unproven changes considerably depending on what has already been tried and how much time a person genuinely has.

The book's own arc, from one patient's experience to organized research, tracks closely with why clinical trials are structured the way they are, and it is worth stating NCI's definition directly.

NCI describes clinical trials as research studies that test how well new medical approaches work in people, and identifies several purposes: testing new treatments or new uses of existing treatments, testing ways to prevent cancer in people at high risk, testing methods to detect cancer before symptoms appear, and testing ways to improve quality of life during and after treatment. The core design feature of a proper trial, whether or not the source material spells out every phase, is that it tests an idea across enough people, with enough structure, to distinguish a real effect from chance.

That is precisely the step Fajgenbaum's own path skipped, out of medical necessity, since he did not have years to wait for a formal trial while relapsing toward organ failure, and precisely the step his own organization exists to make possible for the next patient rather than requiring every case to be its own improvised experiment. The Castleman Disease Collaborative Network's model, pooling data across many patients and coordinating structured research, is the trial process applied to a rare disease too small for any one hospital to study alone.

For a reader facing a rare or difficult diagnosis and wondering whether a similar path is available, the honest starting point is not self-experimentation but asking directly whether a clinical trial exists for the condition, and how eligibility works. See what are clinical trials, clinical trial eligibility criteria, and deciding whether to join a cancer clinical trial for that groundwork.

It suits a reader who wants an honest, dramatic account of what it is like to be seriously ill with a disease medicine does not yet understand well, and who is prepared to read it as one extraordinary case rather than as a guide to replicate. It also suits a reader specifically interested in how rare-disease research gets organized and funded, since that is a genuine strength of the book's second half.

It is not the right book for a reader looking for a template for managing their own diagnosis, cancer or otherwise, through self-directed research and self-treatment. Fajgenbaum's path required medical training, direct access to his own case data, and physicians willing to act on an unconventional hypothesis under close supervision; almost no reader is in that exact position, and the book does not claim otherwise. It may also be difficult reading for someone currently facing a diagnosis that has exhausted standard options, since the gap between his outcome and the more common outcome for a case like his can be a hard thing to sit with mid-treatment. Reading it once stable, or with support, is a reasonable way to handle that.

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• Chasing My Cure — publisher's page (Penguin Random House)
• NCI — What Are Clinical Trials?
• clinical trial eligibility criteria (Cancer Explained)

This page discusses Chasing My Cure for education. It is not medical advice, and nothing here is a judgement of anyone's real medical care.