When Kathy Giusti was told she had multiple myeloma one fateful day in 1996, she was 37 and in the midst of a successful rising career. She was the mother of a one-year-old baby with plans to have a second child. The disease had few treatments and she was given three years to live. Instead of sitting back, however, Kathy took action to create her own hope. That meant not only conducting research on treatments where there was none, but doing it with unprecedented speed and precision.
She founded the Multiple Myeloma Research Foundation and became its first CEO. In the two decades since, the foundation has spearheaded a clinical network that has conducted nearly 100 trials and launched more than 150 new drugs, drastically increasing the life expectancy of patients from 3 to 10 years. For her work, she has been included among Fortune Magazine's list of the World's 50 Greatest Leaders and TIME Magazine's 100 Most Influential People in the world. Kathy is also the author of the 2024 book Fatal to Fearless, which helps cancer patients understand and navigate their own care.
Over the course of our conversation, Kathy describes her life before and after her diagnosis of multiple myeloma, how and why she took initiative to create new treatments for her own disease, what happened after she received a new diagnosis of breast cancer in 2022, and how all patients can better make the healthcare system work for them.
In this episode, we discuss:
3:00 - Kathy’s life before she was diagnosed with cancer
4:56 - What is multiple myeloma?
8:58 - Kathy’s reaction upon learning her diagnosis, both intellectually and emotionally
18:36 - How Kathy navigated the experience of concurrently going through IVF and cancer treatment
22:30 - The sources of support that Kathy leaned on throughout her cancer journey
24:40 - How Kathy and her sister started the Multiple Myeloma Research Foundation
34:53 - How the treatment landscape for multiple myeloma has changed since Kathy was diagnosed in 1996
41:00 - A glossary of medical terms that have been discussed in this episode
44:33 - The current status of Kathy’s multiple myeloma
50:39 - Kathy’s key advice for both cancer patients and health care professionals for navigating cancer treatment
Kathy Guisti is the author of From Fatal of Fearless: 12 Steps to Beating Cancer in a Broken Medical System (2024).
In this episode we discuss the book When Breath Becomes Air by Paul Kalanithi, and the essay The Median is Not the Message by Jay Gould, PhD, and our past episode The Physician Who Cured Himself (with Dr. David Fajgenbaum).
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