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Chasing My Cure

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Member Reviews

I enjoyed this book, but the book desperately needed an editor before it got to this stage. Nice look at the pressures faced in the medical profession though.

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I love a good book and this is what I consider a good book! I loved how the author drew me in and didn't let go until the end. The writing was exquisite and I was lost in the book. A definite 5 star review!

Thank you to NetGalley and the publisher for an advanced copy of the book for my honest opinion.

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“Chasing My Cure” is an amazing story of one Doctor’s race against time to find a treatment for Castleman Disease before it takes his own life. It is a story of courage and perseverance even when the odds didn’t work in his favor. And more than just one man’s story it speaks to the practice of medicine, the state of medical research, the limitations of our current system as well as the hope of that system and the difference one person truly can make. It is a thoughtful and optimistic book but does not ignore the many barriers placed before those caught in a complicated and often confusing medical system. Ultimately though it is a story of hope not despair-a story of the strength and wisdom that comes from family and friends and doctors that care. It is a book you are not going to want to miss. I was honored to receive a free advanced copy of this book from NetGalley and the Publisher, Random House Publishing Group - Ballantine in exchange for an honest review.

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Very well written and what a great perspective. When you are on the other end of a medical issue and you finally get to feel what it is like how the doctors treat you and you now know both sides it has to be so weird. The author has went through so much and is able to have more empathy because of what he has went through. I hope that he takes this and is able to not only cure himself but be able to get the funding and show that just because it isn't a "popular" disease it is something that needs to be looked at also.

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This was an emotional read. It was interesting as you journey with the author as he discovers and deals with this rare disease. The writing style did not appeal to me. But the story itself was what interested me. The effort the author puts into learning more about Castleman’s Disease demonstrates his tenacity and extreme intelligence.

Thank you to NetGalley and Ballantine Books for my advanced review copy. All opinions and thoughts are my own.

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“Approximately 95% of rare diseases do not have a single FDA-approved therapy because they are so poorly understood.”

Occasionally there are books that are easier to review than others. Chasing My Cure by David Fajgenbaum is more difficult - more for its impact on what it means for me as a healthcare provider and a mom with a daughter with a rare genetic disorder.

The author, Dave, was diagnosed with Castleman’s disease at the age of 25. A disease so rare with little collaborative research at the time. This is his story of personal and professional struggles and triumphs. It was very fortunate that he not only has a father who is physician, but also to be in medical school when he had his first flare of this disease. Already a very driven individual, he has been able to join forces with his education to fight for a cure. A complex disease, he approached the fight different than many by pulling experts around the world together and becomes a cofounder of the Castleman Disease Collaborative Network (CDCN). They work towards the goal of research, network, and to provide answers to professionals and patients alike. I had only heard of the disease at the time of picking this up and appreciate the dedication Dave put into this. Not just for himself, but for those around the world. Hopefully “I don’t know” is said less every day.

In terms of the writing itself, it would not be an easy read for someone outside of medicine around chapter 12 due to the medical terminology. I do think anyone can gain insight from reading this book and appreciate not only the advancements in science, but also learning there are so many unknowns as well. If anything, let this be a reminder to be an advocate for yourself and others when you’re not finding answers. They just might not be found yet.

To learn more about Castleman Disease, I encourage you to go to @curecastleman

Thanks to Netgalley and Ballentine Books for this ebook! All thoughts above are my own.

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David Fajgenbaum, a former college quarterback known for his mental stamina in medical school, began suffering from inexplicable fatigue. On the brink of death within weeks, the doctors were unable to give name to his condition. He miraculously survived, only to endure multiple near-death relapses from what would be identified as Castleman disease, an exceedingly rare condition that is not unlike a cross between cancer and an autoimmune disorder. When he relapsed during the clinical trial for the only drug in development and realized time was short, Fajgenbaum turned to his own charts and tested his own blood, in an effort to unlock a new treatment. Knowing that the only way to help himself was to help others, Fajgenbaum decided to crowdsource the most promising research questions and recruit researchers to tackle them.

Having never heard of Castleman disease, I was definitely interested in learning more. The author does a good job of describing his symptoms, treatments, and research, though I would have liked to have known more about the pharmaceuticals themselves. The biggest issue that I had with the memoir was the fact that Fajgenbaum constantly referred to his mental stamina and prowess, which was not strictly necessary. I also wished that the author had talked more about orphan diseases and orphan medications, as it would have been nice for him to highlight the issues surrounding funding and the like.

Overall, Chasing My Cure: A Doctor's Race to Turn Hope into Action was a good memoir that was well detailed and informative. I would recommend this book to those who are interested in medical science and memoirs about personal struggles and perseverance.

Disclaimer: I was given an Advanced Reader's Copy of Chasing My Cure: A Doctor's Race to Turn Hope into Action: A Memoir by NetGalley and the publisher. The choice to read and review this book was entirely my own.

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This book was amazing. The fact that it is a true story makes it so heartwarming and scary at same time. He endured life threatening illnesses that couldn’t be identified and then when diagnosed was given dire prognosis. I admire him and his courageous attitude to figure out how to help himself and others. The book gets very deep into medical terminology but I see now why that was. It helped him explain his theories and working points. I would highly recommend this book.

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Very interesting book. Its very informative and would be a great read if you're looking for something medical related.

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I have a friend with Castleman's, so I was glad for a chance to learn more about it. The book was very interesting and easy to read. It shows that even if the doctor's think they know exactly what causes and fixes a problem, they may be on the wrong track. It was amazing that David lived long enough to find something to help himself. Now, he's working just as hard to try to help everyone else who has Castleman's Disease.

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This is a well written and relatable book for anyone either in the medical field or with a major medical condition. As a medical professional myself, I could completely relate to many of the situations that the author found himself in through the telling of his story, even the strange comfort in sitting down before a long study session in a library, at a long table with the supplies at hand. It brought back memories. The telling of his own story, how he came to work on Castleman Disease through having it and realizing that so little was known about it, from the pathophysiology to how to treat it, was truly remarkable. I know through family members or friends that have had serious medical conditions, the importance of seeking the second or third opinions and searching for the latest studies for new treatment options. His combination of expertise in medicine and then research (having completed a Masters degree) and then an MBA for the business model to gain the funding knowledge is unique as well. Most doctors are so busy becoming doctors as quickly as possible that they leave no time for the rest and really the business degree, or at least some knowledge in business would be tremendously helpful.
Clearly this will be a lifelong pursuit, which thankfully Dr. Fajgenbaum now has the time to do. I thought that when his liver tumor was found that he would surely have a paraneoplastic syndrome, and still could even with this removed. These tend to occur both before and after the associated tumors are found. The association between the cancer/tumor-causing mechanism (either genetic or otherwise) and the immune system is fascinating. This will be a career to follow and his approach is revolutionary in medicine, where so much in clinical medicine and research is siloed.
My only negative about the writing of this is in questioning who the audience is? If it is intended to be medically trained people, then well done. If it is intended to be for either medical or lay people, then I take issue with the very technical sections that I would imagine would be difficult to follow for those not scientifically trained or medically trained. I tried to read the immunologic and oncologic/hemotologic sections with the mindset of someone who I would be explaining those concepts to in a clinic setting and it would never happen in such technical terms.
For anyone interested in a true medical breakthrough story that reads mostly like a novel, with a small section of heavy science, this book is highly recommended. 4.5

#ChasingMyCure #Netgalley #BallantineBooks

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David Fajgenbaum played football at Georgetown University, graduated with honors, and earned a master’s in less than a year from Oxford University. He was going through medical school rotations (where friends nicknamed him “the Beast” because he could bench-press more than some pro football players) when he started feeling unusually fatigued. Within days, he was admitted to the emergency department of the hospital where he had just been seeing patients; his body quickly deteriorated to the point where he was bloated with 90 pounds of fluid and his organs were failing. He was in and out of consciousness, barely able to think. But he hoped for the chance to make some things right, and to beat the mysterious ailment that so suddenly had taken him down.

He did get another chance; in fact, over time, he had four more chances to come back from repeated visits to death’s door and to fight back. Fajgenbaum was diagnosed with Castleman disease in 2010, a rare disease that had been named in the 1950s but still was little-known or understood. He set his “laser focus” to finding a treatment that would help him live well enough to help others who faced the same diagnosis.

In less than a decade, he has not only found a medication that has kept him in remission for more than five years, but he has founded the Castleman Disease Collaborative Network to “accelerate research and treatment.”

Chasing My Cure is the story of a young doctor’s own battle with a disease that nearly killed him several times and his drive to not only help thousands of other people with the disease but even to change the traditional system that has made it so difficult for researchers and doctors to make significant progress in finding causes and cures for other so-called orphan diseases. At the same time, Fajgenbaum describes how through his experience he found ways to better connect with loved ones and find happiness. He talks throughout about hope and that it’s not what he had thought it was when he was younger: that somehow, somewhere, Santa and his elves are working on solutions to problems, such as cures for all diseases, and they just needed to be wished for or searched for hard enough. Instead, hope is power that should lead us to action to make things better for ourselves and others. And that is certainly what he has done.

I was moved by Fajgenbaum’s experiences, by his grief at the loss of his mother to cancer and then the pain and fear he and his family endured each time Castleman disease came roaring back into his life. I was particularly fascinated by his explanations of the thought processes he had as he researched and worked with a few specialists to discover potential causes and possible drug treatments. His acumen in medicine and science is evident and admirable. And then his work on rethinking how foundations like the CDCN and medical research into many diseases can function more efficiently and collaboratively (see, it’s in the name!) also left me impressed at the logic and strategy behind it.

Fajgenbaum’s story is fascinating not just because of what he brings to the table as a patient, bright doctor and researcher and even businessman, but because of how much he’s done in a short time to make tremendous progress. His story is recent and ongoing, and I’ll be eager to see more how it plays out in the next five or ten years.

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3.5 stars. This book follows the story of a young man who loses his mom to cancer and is in the process of going to medical school. He finds himself seriously ill and doctors cannot figure out exactly what is wrong with him. As the title states, he finds himself chasing his cure. I very much enjoyed following his story and experiences. A lot of the medical talk was a little hard for me to follow and stay interested in. #netgalley #chasingmycure #sickness #doctors

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Chasing My Cure by David Fajgenbaum is a wonderful read. What happens when the doctor becomes the patient? Well, here is a doctor who not only becomes the patient but becomes an advocate for his own care. This book reminds me a lot of When Breath Becomes Air. It is similar in some ways. Overall, it is an interesting read and I would recommend it. I received a digital copy of this book from the publisher with no obligations. These opinions are entirely my own.

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I couldn’t put this book down! I had to find out how this ended. I felt like the author did a great job conveying his incredible struggle through his illness, searching for a diagnosis and cure. The medical jargon wouldn’t be too hard to follow for anyone.

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WOW!! I was honored to receive this ARC. Being a healthcare professional and having been on that patient side of the bed this book was emotionally difficult to read. Having been on both sides on that roller coaster is so difficult. Seeing how David was able to maintain a focus for treatments is nothing short of amazing. I think for the general reader lots of the medical jargon will get skimmed past.

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This is a story about a young man dealing with the death of his mother, attending college and starting medical school when he is sidelined by a mysterious illness.

Reading this made me a bit anxious. His frenetic energy leading up to his illness emotionally exhausted me. How he and his family deal with his illness is heartwarming. It does tend to get very technical for the everyday reader. Even my being a nurse I found my self skimming a lot of the technical stuff. It’s an interesting read about a rare disease and how he went about finding out a treatment that worked for him.

Thank you Netgalley for the book in exchange for a honest review.

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Inspirational and challenging, a well-written account of one man's battle with a rare disease. The nuances he shares about his life leading up to his diagnosis and during his treatment helped make it a rich read and made his life more relatable. He provides a well explicated account of his tenacious spirit in fighting this rare disease. Instead of giving up hope of a cure ever being formulated by research in his lifetime, he diligently studied and researched his own case and put his medical knowledge to work, which led to hope for not only himself but many others too. This is a true account of why we should never give up hope and how our tenacity can help others along the way.

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So often it's difficult to review a memoir because it's almost as if you are passing judgement on someone's life and choices. It wasn't a problem here. Fajgenbaum has written the story of his life and more importantly, the story of his disease and his quest to solve the puzzle. Castleman's struck him as a young man; it recurred and will continue to recur. This means he has death looming over his shoulder at every moment. And yet, and this is key, he turned his concerns into action. This is terrific. The writing is clear, the problems and medical issues explained concisely and in a manner which informs the lay reader. Thanks to the publisher for the ARC. An excellent read.

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This is an awesome memoir of a dedicated, talented and highly intelligent physician that took the initiative to go above and beyond the confines of current medicine and bring his thoughts and talents to think outside of the box for his own cure. In so doing, he has greatly affected many other patients and extended the lives of many.
His mother would be so proud, as his father, sisters, friends, wife and child are. I work in the medical field, not as a clinician, but as an information systems analyst. I see this type of devotion daily, but I also see some physicians stop at the “I don’t know”, and they do not take the additional step Dr. Fajgenbaum took. By far, one of the best memoir’s I’ve ever read. I so appreciated that the story did stick with the emotional and physical drains and did not get stuck in the medical language that I would not have been able to understand. I wish you the best Dr. Fajgenbaum.
I was very pleased to have been given the opportunity to receive this book from Random House Publishing Group through NetGalley. The opinions expressed in this review are completely my own. This one gets 5*****’s.

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