Taking Control of the Cancer Journey

— Kathy Giusti gives patients and healthcare workers advice for navigating cancer treatment


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When 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 1-year-old baby with plans to have a second child. The disease had few treatments and she was given 3 years to live. Instead of sitting back, however, Giusti 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 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 and Time magazine's in the world. Kathy is also the author of the 2024 book Fatal to Fearless, which serves as a guide for cancer patients to understand and navigate their own care.

Over the course of Giusti's conversation with Henry Bair and Tyler Johnson, MD, she 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 make the healthcare system better work for them.

In this episode, we discuss:

  • 3:00 Giusti's life before she was diagnosed with cancer
  • 4:56 What is multiple myeloma?
  • 8:58 Giusti's reaction upon learning her diagnosis, both intellectually and emotionally
  • 18:36 How Giusti navigated the experience of concurrently going through IVF and cancer treatment
  • 22:30 The sources of support that Giusti leaned on throughout her cancer journey
  • 24:40 How Giusti and her sister started the Multiple Myeloma Research Foundation
  • 34:53 How the treatment landscape for multiple myeloma has changed since Giusti was diagnosed in 1996
  • 41:00 A glossary of medical terms that have been discussed in this episode
  • 44:33 The current status of Giusti's multiple myeloma
  • 50:39 Giusti's key advice for both cancer patients and healthcare professionals for navigating cancer treatment

The following is a partial transcript (note errors are possible):

Bair: We are excited to dive into your inspiring story. To set the stage for our listeners, can you paint us a picture of what your life was like before you were diagnosed with multiple myeloma?

Giusti: So, you can imagine, I was 37 years old at the time. My husband and I had been married. We just bought our first new home. Our little girl was 18 months old, and we honestly were putting up our Christmas tree and had actually taken the moment to say, oh my God, we're finally at this amazing place in our lives where we've worked so hard to get here, and we are so happy and excited about, like, this whole path forward. And that was as we were putting the Christmas tree up.

But in the meantime, I had gone to my internist just to get some blood tests done because I was getting a referral to a fertility doctor, because we were having trouble having our second child. And in that short window of time, the blood test came back and showed an elevated protein, high anemia, and enough for my internist to notice that there were some strange things going on, at which point he repeated them. And so by the time we were taking that Christmas tree down, it was pretty clear that I was being diagnosed with multiple myeloma.

And the more I had researched multiple myeloma and that form of cancer, the more I realized it was 100% fatal, that the average lifespan of a patient was 3 years. So I would be lucky to make it to 40 years old. So I kind of put that box of Christmas ornaments back together, and I wondered if I would even put up a tree the next year. You know that moment you get where people say your life changes in an instant? It really does. In this situation, it changed over a number of days. It confirmed that I did have multiple myeloma. But yeah, you go from being, you know, one of the happiest people thinking that you just did everything that you were supposed to do, to, oh my gosh, our lives are truly falling apart.

Johnson: Now, Kathy, I want to come back and spend more time talking about those moments of diagnosis and what that was like for you. But before we get there, I want to back up a little bit further for the following reason. So I'm a medical oncologist, right? So I take care of patients with cancer, although I take care of patients with so-called solid tumors.

But if I have a patient who has colon cancer, or one of my colleagues has a patient with lung cancer or prostate cancer or whatever, and they go and they say to someone, oh, I have whatever those kinds of, one of those kinds of cancer that I just mentioned. It's pretty intuitive what that means, right? There's a mass in the place that is described by the name of the cancer, and then maybe it travels to other places, or maybe it doesn't, but you kind of know what's at least what's going on, right, at an intuitive level. That makes sense.

But if you tell someone that you have multiple myeloma, I imagine that most people's eyes just kind of glaze over, right? Because what, like what's a myeloma? That isn't even like, what do those terms even mean? Right? Unless you happen to be a hematologist, I would wager that even a lot of doctors, if you say what's multiple myeloma, just as a spot check, would probably have a little bit of a hard time nailing down exactly what that means, right? So for those in our audience, who are probably many of them, that don't really know what multiple myeloma is, can you tell us what is it and what does it do?

Giusti: Yes. So you nailed one of my greatest frustrations of getting diagnosed with this cancer, was its massive complexity. First of all, you are right. The name doesn't really describe what it is. And so that's confusing. And then also with multiple myeloma, it is, as you said, you focus on solid tumors -- this is what they call a blood cancer, a liquid tumor. And yet it affects your bones and your kidneys. So the whole learning of this cancer was incredibly involved.

But multiple myeloma is a cancer of the bone marrow. It's actually a cancer of the plasma cell, which makes up your immune system. And it just means that those cells have gone completely out of whack. And as you produce more and more of these out-of-line plasma cells, it also crowds out all the really good cells, and then it causes a lot of havoc in your system.

The reason that they often call it multiple myeloma is when you're doing the differential diagnosis of this disease, even when I was like sitting on the floor of Borders bookstores trying to understand what this disease was, I kept seeing that there's one thing you could have that would be positive and that would be a plasmacytoma, which means there's an accumulation of those cells in one area of your body, and potentially they can radiate it and even perhaps get rid of it, and you might do a lot better. So that's a single plasmacytoma. But when you have multiple spots and it's in multiple places, that's when they end up saying you've got the actual disease.

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