Multiple Myeloma—A Patient's Perspective: What to Expect, What to Do, and How to Cope

I have had multiple myeloma since 2018. This is the practical guide I could not find when I was diagnosed.

It explains the disease, the treatments, and the day-to-day realities of living with myeloma in plain language, without assuming a medical background or glossing over the difficult parts.

What makes this book different

Much of the myeloma information available to patients is either introductory material that cannot cover much detail or is very narrowly focused, or clinical literature written primarily for specialists.

This book addresses the many different concerns that a patient might face on any given day.

• The medicine. What myeloma is, what your labs and scans mean, how the drugs work, and how treatment decisions get made.
• The practical care. Managing fatigue, pain, infection risk, damaged bones, brain fog, and sleep — and knowing when something warrants a call to your team.
• Everything else. Preparing for appointments, talking to your employer, handling insurance and disability, protecting your relationships, and living with the uncertainty of a disease that is treatable but not curable.

Print edition (softcover), 429 pages. Also available as an Amazon Kindle or Google Play e-book.

Who this book is for

• People who have just been diagnosed and are trying to understand what myeloma is, what happens next, and which questions to ask first.

• Patients in treatment who want a clearer grasp of their lab results, treatment options, side effects, and the decisions they may face over time.

• Caregivers looking for both practical guidance and a better understanding of what the person they care for may be experiencing.

• Nurse navigators, patient educators, oncology social workers, and support-group leaders who are looking for a thorough, accessible resource to recommend or keep in a patient library.

What the book covers

Part I — The Beginning. The big picture; what you as a new patient need to know today; a chapter addressed to caregivers.

Part II — Understanding Your Disease. What myeloma is; diagnosis, staging, and risk; reading your labs; diagnostic imaging.

Part III — Myeloma Treatment. Treatment overview; the myeloma drug toolbox; first-line therapy; stem cell transplant; relapse; late-stage disease.

Part IV — Managing Side Effects. Medical complications; symptoms and physical changes; immune vulnerability; bone and kidney damage; pain; brain fog, appetite, and sleep.

Part V — Social and Emotional Challenges. Family, work, and social life; the emotional reality of myeloma; anxiety and depression.

Part VI — Taking Charge of Your New Life. The routine of living with myeloma; taking care of yourself; financial and workplace navigation; planning ahead.

Appendices. Organizations and online resources; glossary; tables of common drugs; further reading; general and drug indexes; an emergency-symptoms page inside the back cover.

About the author

I am Grant W. Petty. I was diagnosed with multiple myeloma in 2018. Since then, I have been through induction therapy, a stem cell transplant, years of maintenance, a relapse, and the monitoring that never quite stops. I have had the side effects, sat through the scans, lost count of the blood draws and infusions, and learned to read my own lab reports.

I am also a retired professor of atmospheric and oceanic sciences at the University of Wisconsin–Madison and the author of several widely used textbooks. Explaining new material to people meeting it for the first time is what I did for a living. It is what I have tried to do here.

I am not a physician, and this book does not replace your medical team. My goal is that it may accompany your journey and help you to navigate your disease, your treatment, your life with myeloma, and the decisions you will face along the way.

For support groups and patient educators

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