Book Review: “I have WHAT?” Multiple Myeloma, Waldenstrom’s Macroglobulinemia. Amyloidosis, MGUS

Debra Berenson’s book, “I have WHAT” (available on Amazon new $25) is a “must read” for those fighting one of these diseases: multiple myeloma, Waldenstrom’s macroglobulinemia, amyloidosis or MGUS. For those who, while leading a seemingly normal life, were dealt a devastating health diagnosis, information is key. It’s the only way one can choose from a myriad of treatments, find the best doctor out there, and navigate their new life. Part of navigating life with a chronic illness is learning from fellow patients and the doctors that treat them. Today in the United States, there are some 27,000 new cases of multiple myeloma, with more than 150,000 living with the disease. For Waldenstrom’s macroglobulinemia, there are 3,000 new diagnoses each year with more than 20,000 living with the disease. And for MGUS, it’s about 10,000 Americans who have it. While none of these diseases are curable, patients are living longer and better lives than ever. For example, in the 80’s, the average life expectancy for multiple myeloma was about two years. Today, many are living 10, 15 and 20 years post diagnosis. With an ever-expanding list of medications, combinations and treatment options, the future is filled with much hope. However, one of the trickiest aspects of life post diagnosis is that much of the information available on the Internet (or, far worse, in print) is outdated and extremely technical. Also, with outdated information comes outdated survival rates and treatment options. This can be incredibly depressing and hopeless for patients and caregivers alike. This is why getting information from credible, current, and easy-to-understand sources is imperative. Yes, it matters to treatment outcomes and mental state. The first part of this book features a series of stories from patients. Optimistic, hopeful, and with a will to live, they will inspire the reader and serve as an important reminder that life can hold great purpose and meaning despite big challenges. While treatment can be time consuming and include many unwanted side effects, these patients share how they seek to overcome them and thrive. In the second part of the book, doctors explain how patients can manage complications from disease and treatment. With a list of basic questions and simple answers, and explanations of current and upcoming medications and treatment choices, the reader can gain great insight into their disease. Armed with this information, the patient is far better able to have educated discussions with their doctors and make important decisions about their care. And, lastly, and perhaps just as important, the book details various ways to treat and cope with side effects from treatment. “I have WHAT” is definitely worth the read and should be an important part of the myeloma patient or caregiver’s library. As the author writes: “This book offers not only information, but also provides reassurance that your life with these disorders can be fulfilling and long lasting. I also wish to convey that the future is bright as more therapies are becoming available nearly every month for treating these disorders, which certainly will continue the dramatic improvement of the lives of patients.”