Customer Reviews

The Patient from Hell: How I Worked with My Doctors to Get the Best of Modern Medicine and How You Can Too

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Schneider's account is indispensable on many levels. It is a sobering analysis of how the political economy of the health care industry limits treatment options and often results in suboptimal care. It is an instructive case study of how patients can use decisional and probability analysis to discriminate among various treatment options, and use their own research to come up with promising revisions to conventional treatments. Most importantly, it is a gripping and inspiring narrative of how Schneider and his wife worked through the trauma of a brutal lymphoma diagnosis, cogently analyzed treatment options, and persistently partnered with their oncologist to arrive at a satisfactory protocol.

This book will fascinate anyone interested in some of the perversities of our medical system, but it will be particularly compelling and instructive for anyone -- as a patient, spouse or family member-- grappling with life-threatening illnesses and complicated treatment issues.

My husband was diagnosed with incurable cancer in March of 2005. What can you say or do for yourself when an Oncologist tells you; you will die within a few months? What you do is read "Patient from Hell." After reading Dr Schneider's book "Patience from Hell" I had an overwhelming sense of hope for my husband's situation, something I had lost before reading this book. It confirmed my own thoughts that doctors may not know everything there is to know about a specific cancer and new treatments being tested and how you must take your life into your own hands instead of handing your life over to a stranger. The book shows how to talk with doctors to get answers and how important it is for each individual, based on the specific cancer, to do research and learn all you can about your cancer and how to bring those findings to your doctor without bruising the sensitive ego that most medical professionals seem to share. Dr. Schneider shares with his readers the side effects he encountered and how life can go on very close to normal during and after treatment. I am forever grateful to Dr Schneider for sharing his experience with the world. This book is an easy read as well as a must read for anyone fighting cancer or caregivers to cancer patients.
Sheilagh Morin

I have no first-hand experience with the issues discussed here, but I want to be prepared for the day when I will face the Medical Establishment.

While Schneider was successful in his own quest for a cure, the vast majority of patients -- anywhere in the world -- will not be able to duplicate his efforts. Schneider dealt with his oncologist as an equal - both full professors in the same university. He is male and married; doctors tend to patronize and dismiss women in general and single women in particular. And his wife was singularly well-equipped to serve as his advocate: a scientist who could take a sabbatical from her own good job.

Schneider enjoyed financial resources and (apparently) incredibly good medical insurance. His internist was one of those new "no-insurance" doctors who can actually take time with patients.

And Schneider is careful to attack "the system," not the doctors.

But most patients will not be treated the way Schneider was. His doctors seemed polite and respectful. I'm amazed he didn't encounter even one obnoxious nurse.

And if anything, Schneider was far too forgiving. He notes the stupidity of identifying a "nadir" which essentially means drawing a curve from one data point. He accepted unnecessary tests - his oncologist points out, "Even if we found a few cancer cells, we wouldn't know what to do." And his own oncologist skipped a scheduled appointment, not even arranging for a secretary to call and cancel.

Schneider warns us to stop reading if we're already skeptical of the medical establishment, so of course I should have listened! As he might have predicted, this story can actually scare off patients with an unintended lesson: If this is what happens to an educated, elite patient, what happens to everyone else?

Dr. Schneider's book is about mantle cell lymphoma (MCL) in particular but his discussions apply to cancer treatment in general. He teaches you how to understand your treatment plan and to talk to your doctor about individualizing it depending on your type of cancer and medical history.

My treatment plan for MCL was essentially the same as Dr. Schneider's but without the full body radiation that he used as an additional tool to kill as many cancer cells as possible prior to autologous stem cell transplantation. My oncologist who works for a Seattle HMO has been very open in discussing treatment options with me. We eventually adopted Dr. Schneider's and his oncologist's plan of doing maintenance treatment with Rituxan and PCR testing following the stem cell transplantation.

Dr. Schneider teaches you how to talk to your doctor and other members of your treatment team, how to educate yourself and how to cope with the emotional stresses of treatment - both for you and your caretaker. He shows you how not to be a "Patient from Hell," but an informed and active member of your treatment team which includes your nurses, nutritionists, and oncological pharmacists, among others. This is a warm, informative and humane book. Highly recommended.

I recently finished Patient from Hell -- I have mixed feelings about it; I am a non-Hodgkin's lymphoma patient just finishing my second course of chemo and Rituxan; I relapsed after three years. I experienced small-city medical limitations, to say the least, although everyone involved tried to help. I eventually found my way to UAB in Birmingham, AL, where I found help of the highest quality.

My advice to anyone having trouble at home with the local medical system is to go to a big place--one of the Comprehensive Cancer Centers. Even if you can't afford it, call and see what your options are. I think if you can get yourself to a place like UAB or Johns Hopkins or another cancer research hospital near you, you will find it well worth the effort.

I say all this to say that Dr. Schneider's experience may not be easily compared to what most of us in "average city-USA" face when we have cancer.

I did learn a few new things in Schneider's book, but all the things he "fought for" were recommended to me without my even asking. I think a good Oncologist will do that sort of work for you. Of course, knowledge is power, and I find knowledge casts out fear too, but when I read Dr. Schneider's account of his bone marrow transplant, my heart sank. I know I'm facing that procedure if I relapse again within 12 months of now. He scared me to death; I don't know if I can go through it now.

And what if I don't have an advocate like the one Schneider had? I had a sinking feeling I might not survive based on the fact I don't have an "advocate" - it's just me and my doctor and all his resources - and my family and friends--all with full-time jobs and problems of their own. I certainly will never put a guilt trip on any of them for not standing up for me on some issue they don't even understand.

I found The Patient from Hell similar to Racing for a Cure (Ruzic) -- both books are stories of two men's ways of dealing with mantle cell lymphoma. Both men were above-average in wealth, it is evident, and both had advanced educations and contacts most people can never imagine. In other words, the books, although informative, "just don't fit" what I have experienced as a lymphoma patient. However, I guess the books both are better than nothing if you have lymphoma and need some condensed information.

I have found the Internet and online medical libraries much more helpful in actual information gathering than what I found in either of these books. Dr. Adler's book, Living with Lymphoma: a Patient's Guide, however, is the best commercial book I've read on the topic of lymphoma, and I consider it well worth the investment--I'll reread it; the other two will go into the next book sale. Nonetheless, Ruzic and Schneider did accomplish a great deal in that they dealt with cancer, kept working, traveling, speaking, and found time to write books on the subject, when all I seem to be able to do is write critiques on what others have written.

For anyone diagnosed with cancer, learning about their disease and its treatments can be most discouraging. Someone diagnosed with mantle cell lymphoma, an uncommon, incurable cancer soon realizes that even medical experts are uncertain with regard to treatment outcomes. In The Patient from Hell, Stephen H. Schneider relates how he addresses this "deep uncertainty" while revealing details of personal experiences during his treatment for this aggressive non-Hodgkins lymphoma.

Schneider reduces the challenge to treatment to three overarching issues to which he offers procedural modifications; in turn, he convinces his oncologist to adopt these altered procedures on himself, procedures that are now slowly being incorporated into standard treatments. Firstly, Schneider highlights the contradiction between what medical experts think on one hand and what they do or are allowed to do on the other. What bothers Schneider is that although there exists unanimity that cancer is highly individualistic, medical staff are restricted by bureaucrats to doling out cookie-cutter medicine-by-numbers. Borrowing from his own field of scientific expertise, climatology, Schneider opens the issue rationally by introducing Bayesian updating to mitigate risk and error with respect to his own ongoing treatment choices. Secondly, this rational flexibility leads to procedures to complement his intensive conventional attack with radiation, high-dose chemotherapy, and autologous stem cell rescue. These novel procedures include using the biological, front-line, adjuvant therapy Rituxan, as maintenance therapy, as determined by cancer cell levels measured by polymerase chain reaction. With this, Schneider asserts his status as fully participating patient-as-medical-team-member rather than settling for being an impassive subject of medical treatment. Thirdly, the result of the foregoing becomes another push toward the paradigm shift to treating cancer as chronic disease to be managed, as opposed to battling cancer to remission and awaiting its inevitable return.

In the end the question left begging becomes whether or not The Patient from Hell fulfills the sentiment entailed in its subtitle. Does this book actually enable the consumer of modern oncology to work with his doctors to influence the course of his treatment? Let the reader be the judge. My personal belief is that The Patient from Hell is a must-read for anyone who has experienced the misfortune of cancer diagnosis, a courageous work that well reflects Schneider's own courageous and indomitable spirit and that of his patient advocate, primary care giver, and loving spouse, Terri Root.

What do you write when a book may have saved your life? The "Patient From Hell," dropped into my life at a very hopeless time when I had learned that my three year effort to defeat Mantle Cell Non-Hodgkins Lymphoma had failed after two years of complete remission. In addition to having the same disease as the author, I followed almost the same course of treatment, at the same hospital, in the same waiting rooms and conducted by many of the same talented and overworked staff. With canny accuracy, Stephen Schneider has captured the cancer patient's experience of treatment at a major cancer center - both the benefits of cutting edge medical treatments and the grinding anonymity of large, institutionalized medicine. But the true value of this book lies in the lesson's for all patients with a life-threatening disease in how to make the system work for them. This book has given me the knowledge and, more importantly, the attitude to confront the bureaucracies, the recalcitrant insurance companies and a medical system deluged by overwhelming numbers of patients. Thank you Dr. Schneider.

I recently finished reading Stephen Schneider's book "The Patient from Hell", which describes in detail how he worked with his doctors to achieve a complete remission of his Mantle Cell Lymphoma (MCL) that is now in its fifth year. Dr. Schneider is a senior fellow at the Institute for International Studies at Stanford where he teaches climatology. His medical team included Dr. Sandra Horning, now president of the American Society of Clinical Oncology, who was his oncologist at Stanford University Medical Center where he was treated. I refer to Drs. Schneider and Horning's credentials only to indicate that the book was written by a serious-minded author about his positive interactions with a competent and progressive medical team, lest the title of the book, which alludes to his advocacy for personalized treatment, should give you pause. This is a must read for anyone suffering from MCL or other lymphomas. It provided me with a vital roadmap for my own treatment of MCL, from which I am happy to report I am also in complete remission.

This is an excellent book for the following reasons:

1 - It explains step-by-step, the cancer treatment experienced by the author himself, and includes chemotherapy, surgery, radiation treatment, and finally a bone marrow transplant. I found the treatment for cancer much more complicated then I had expected. It is also no joy-ride.

2 - This book could have been called `Negotiating Medical Treatments' as the author successfully negotiates with doctors for better treatment procedures, and better cancer drugs, resulting in a better outcome for his serious condition. His personal journey highlights the failings of the current HMO-style medical systems that provides an ordinary level of treatment, whereas he seeks a premium service for his life-threatening condition as a Stage IV cancer patient. His options are to go to an advanced cancer clinic in say Europe to get very high quality care but at his own cost, or use his current medical service and negotiate premium treatments every step of the way. He chooses the latter.

3 - The author is a very astute person, a PhD scientist, who uncovers many of the flaws in his cancer treatment protocol, as he progresses through the treatment over several months.

This book will help those who require treatment for cancer, by helping them to navigate through the medical maze of doctors and hospitals.

Stephen Schneider's book was an extremely important read for us, another family dealing with lymphoma. We were elated to have someone with Dr. Schneider's credentials speak up about the difficulties cancer patients face when dealing with medical institutions and its industry. This book shows that no matter how educated and connected one might be, you STILL have to take an extremely active role in dealing with your disease, from diagnosis to treatments and beyond. Dr. Schneider writes in a personal manner so you really get the feeling of being there in that treatment room,(believe us, we've been there too). Through this book a cancer patient can arm themselves with the most important weapon he or she will need, a feeling of control and input - thank you Dr. Schneider.

L. Rudiger