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

by Stephen H. Schneider and Janica Lane

Book Overview

In the bewildering days after diagnosis of a severe disease, patients learn two daunting facts: One, no doctor has all the answers, and two, there are no answers, only odds. For readers (and their families) who want to be involved in the key choices regarding treatment, Dr. Schneider is the ideal guide. A climate scientist, his life's work is decision making in the face of great uncertainty. This important book is both his own gripping story of working...

• Format: Paperback
• Language: English
• ISBN: 0738210781
• ISBN13: 9780738210780
• Release Date: September 2006
• Publisher: Da Capo Lifelong Books
• Length: 300 Pages
• Weight: 0.80 lbs.
• Dimensions: 0.9" x 6.1" x 9.1"

Customer Reviews

From one Stanford patient to another

Stephen is the absolute definition of a busy man, successful in a multitude of directions. A professor at Stanford University, an expert in the climate of our world and an acting contributor to change that will improve the way we live. Unfortunately he was diagnosed with "Mantle cell lymphoma" in August 2001. An uncommon cancer! A lot for any person to deal with, but Stephen's book shows us how he did just that. Both he and his wife Terry, learn as much as they can about this disease and current ways to treat it. Stephen has written this book, so we, the readers will learn how to stay alert to our options. Have faith in our doctors and the medical field, but reach out and ask questions and even request various treatments. Expand our decision making beyond the norm when necessary, encourage our doctors to think outside of the box. Get the best treatment available. One of his goals is to move doctors thinking beyond "Clinical trials." I have to take this opportunity to thank Stephen for all his hard work and contributions. An example is that Stanford purchased the Isolex 300i machine (a blood-cleansing machine) due to Stephens urging. The fluid extracted from a patient who is using their own stem cells could have rogue cancer cells. This machine will help to eliminate re-infecting the patient with his or her own cancer. I could have been one of those patients, because I also had a stem cell transplant at Stanford about a year after Stephen. His book "The Patient from Hell" is packed full of good ideas, thought provoking statements and courage. This book is a valuable tool for everyone to read facing cancer or dramatic change in their life.

Rational Insight from the Stanford Patient

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.

Cancer Treatment - Working with Your Doctor

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.

A logical look at treating cancer

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

a superb analysis and inspiring story

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.