EP. 101: TAKING CONTROL OF YOUR CANCER JOURNEY
WITH KATHY GIUSTI
A two-time cancer survivor and Co-Founder of the Multiple Myeloma Research Foundation shares her remarkably successful efforts to discover new treatments for her own disease.
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Episode Summary
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.
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Kathy Giusti is a business leader and a healthcare disrupter. She is a two-time cancer survivor, having been diagnosed with multiple myeloma and breast cancer. Kathy co-founded the Multiple Myeloma Research Foundation (MMRF) where she served as CEO and President for nearly two decades. She also co-chaired the HBS Kraft Precision Medicine Accelerator, which she helped found as a Senior Fellow at Harvard Business School.
Kathy has been named one of TIME magazine’s 100 Most Influential People in the World and was ranked #19 on Fortune’s list of the World’s 50 Greatest Leaders. She has been featured in the Wall Street Journal, the New York Times, and Fast Company, and on the Today Show, Bloomberg, and CNN.
Under Giusti, the MMRF raised more than $500 million to fund research and has established partnerships and collaborative research models in precision medicine, including the Multiple Myeloma Research Consortium (MMRC), which has conducted nearly 100 trials, the MMRF CoMMpass™ study, CureCloud®, the Right Track, and the Myeloma Investment Fund. Since the MMRF was founded, 15 drugs have been approved to treat multiple myeloma and many clinical trials are underway. These efforts have accelerated the pace at which treatments are brought to patients and have more than tripled patients’ survival.
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In this episode, you will hear about:
• 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
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Henry Bair: [00:00:01] Hi, I'm Henry Bair.
Tyler Johnson: [00:00:02] And I'm Tyler Johnson.
Henry Bair: [00:00:04] And you're listening to The Doctor's Art, a podcast that explores meaning in medicine. Throughout our medical training and career, we have pondered what makes medicine meaningful. Can a stronger understanding of this meaning create better doctors? How can we build healthcare institutions that nurture the doctor patient connection? What can we learn about the human condition from accompanying our patients in times of suffering?
Tyler Johnson: [00:00:27] In seeking answers to these questions, we meet with deep thinkers working across healthcare, from doctors and nurses to patients and health care executives those who have collected a career's worth of hard earned wisdom probing the moral heart that beats at the core of medicine. We will hear stories that are by turns heartbreaking, amusing, inspiring, challenging, and enlightening. We welcome anyone curious about why doctors do what they do. Join us as we think out loud about what illness and healing can teach us about some of life's biggest questions.
Henry Bair: [00:01:03] When Kathy Giusti was told she had cancer on 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. As she put it, she didn't just have any cancer, but one of the lousy ones with the weird name and no effective treatment. She was given three years to live. It was multiple myeloma, a cancer arising from a type of white blood cell called a plasma cell. Instead of sitting back, however, Kathy took action to create her own hope. That meant not only conducting research 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 153 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 serves as a guide for cancer patients to 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 health care system work for them. Cathy, welcome to the show.
Kathy Guisti: [00:02:55] Thank you for having me.
Henry Bair: [00:02:58] 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?
Kathy Guisti: [00:03:11] 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 life span of a patient was three 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 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.
Tyler Johnson: [00:04:56] 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 was 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?
Kathy Guisti: [00:06:13] 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 confusion. 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.
Tyler Johnson: [00:07:45] So now let's go back to and pick up the thread of the narrative that you were talking about earlier. Right? So as an oncologist, I just sort of make the assumption that when I give someone really difficult news now, ironically, I'm almost never the person who gives the patient the news that they have cancer, right? Because they usually don't come and see me until someone's already told them that. But nonetheless, sometimes I divulge to them that their cancer has. Come back, or that it has spread in such a way that we don't have effective treatments or what have you. But all of this is just to say that I have learned over the years that when I give difficult news, I should just make the assumption that from the time the difficult news is out of my mouth, that the patient will not really hear and process anything else during at least the rest of that visit, because there's so much emotional overwhelm that comes with just the word cancer or recurrence or, you know, what have you. And then I have to imagine that that is an order of magnitude even more true when, as we were just talking about you're being diagnosed with a disease that I'm just going to go out on a limb and guess that when someone said, you might have multiple myeloma, you probably didn't know what a myeloma was either.Right?
Kathy Guisti: [00:08:57] Right.
Tyler Johnson: [00:08:58] All of that is just to say, can you just take us through, you know, here it is. It's Christmas time, as you say. You, you know, felt like you had kind of advanced one of the spaces on the game of life, right? You've bought a house and you have a child and you're putting up the Christmas tree, and it looks like life is just ready to unfold in front of you. Whatever. Right. And now you have this doctor calling you because of what you thought were some basically, you know, routine lab tests. You get this call that they're worried about something. They do confirmatory tests, then they do diagnostic tests, probably eventually a bone marrow, whatever. And eventually you're sitting in a hematologist office and they say you have this disease that you had never even heard of and that you've now discovered is fatal. What did that do to your interior life? Like how did it change your perspective on what was important, and how did it change the way that you knew you were going to live your life going forward?
Kathy Guisti: [00:09:52] Well, I think what happens is for me and you, you know this as well. There's a process to having your cancer confirmed and a process to having it confirmed by what stage you're in and exactly what's going on with that form of cancer. So in this situation, it took days upon days because it went from my internist talking to me. I was literally driving home from work back then. It was car phones, remember? This is this was a while back. You know, he's giving me his suspicions and he doesn't want to say what he thinks it is. But ironically, multiple myeloma skews older, male and African American. So by him looking at what he was seeing in my blood tests and his suspicions, what had happened was when he asked me to go back in and repeat the test, he had ironically call it serendipity. Another patient who was a young woman, and he had gone through a long time diagnosing her with multiple myeloma. It's not like someone like me would walk into, you know, an internist office looking for the okay to go see a fertility doctor and just randomly getting routine blood tests that he would look at someone like me and think, oh, well, she has potentially multiple myeloma, even looking at what he was seeing in the blood test. But because he had had a patient like me and we looked similar, it just turned his radar on.
Kathy Guisti: [00:11:19] And so immediately he was doing more of the testing on that second round of blood testing. And at that point when he was getting that back and he was seeing me, he was pretty sure by looking at the immunoelectrophoresis, which is one of the tests they can do from your blood, that it was multiple myeloma, but again, to validate it and confirm it, they needed me to go see another hematologist oncologist. So this is where you go from your internist to, you know, what becomes the alphabet soup of different oncologists and learning blood cancer doctors versus solid tumor doctors. So I went to the hematologist oncologist. Then he met me. I met the pathologist. They did the bone marrow. And it was at that point they were able to confirm that I did have multiple myeloma. So it's a process that goes over days.
Kathy Guisti: [00:12:04] My father had died of kidney cancer not long before that, and I had been his caregiver. So I kind of knew the game of doing research and finding trials. And again, I was working in the pharmaceutical industry, so my first instinct was just to learn everything I possibly could. But there was no internet back then, so it really meant I was going to borders and I knew to pick up Merck Manual, Harrison's internal medicine. These were all books I was using in my pharmaceutical career, and I'm studying them, but I'm beside myself because the more I'm reading, the more God awful it is. It's it's like there was no gray. It wasn't this disease is treatable, but absolutely fatal. In the back of my mind, even during that time, I kept saying to myself, every patient is a patient of one, and you don't know your whole story yet, so don't panic yet. And the one thing I was holding on to, which turned out to benefit me, was he had found it very early, and when they actually did all of the diagnostic testing, and this took a long time because I went to the Mayo Clinic sometimes. It's hard to know your stage, but the Mayo Clinic was doing really advanced work in specific early stage multiple myeloma called smoldering multiple myeloma. So by doing all my research, I ended up going there. I did tons of testing there. And then it was confirmed that I had smoldering myeloma. Now, it was kind of one of those smoldering levels where they know you're going to go active and you're kind of like a walking time bomb of when it's going to be. But at least I was holding on to that hope that it was earlier than I had initially thought.
Henry Bair: [00:13:44] So I want to applaud you for how proactive you are in gathering all this information, and it's quite remarkable. And the proactivity is obviously apparent in your book and in the advice that you share to patients and caregivers. At the same time, I also want to dig deeper into, okay, now you have the intellectual process sort of underway. What about the emotional side of things? What were you feeling at the same time? Were they two distinct processes that were happening at the same time? Or, you know, were you trying to wrap your mind or your head around it from an intellectual perspective before coming back to the emotional side of it? Like, how did those two play out?
Kathy Guisti: [00:14:24] Yeah, for the emotional side, you know, and I write this in the book is that there's a point in time where I'm back in Borders Bookstore, and as I'm checking out with different books to read, I also decide to pick up a journal. And the reason I picked up a journal because I'd never written in a journal before, was because I felt like I wanted to start writing to our daughter, because at this point now, I knew I had three years to live, and I thought the best way for her to remember me was for me to document, like, what we were all doing together, what our family was like and how we were going to get through this. So that was going to be my story for her. And so what I would do is I would start writing in that journal. And I always say in the book, there's two things that happen to you. One is as a patient, somebody tells you this and it goes back to your needs, like, what are the immediate needs that you have? And for a lot of people fighting cancer, that is, oh my God, what about my job? What am I going to do about insurance? Who's going to help take care of my kids? Who's going to take care of my mom? Like, these are really practical things. And you also have to be aware of you're going to be sick. Who's going to make meals? Who's going to clean? I mean, these are such important needs and physical pieces to it. But at the same time, I was writing about things that were really important to me. When you know you're going to die, you're not worried about yourself because you're going to be dead. What you're worried about is the people you're leaving behind. And so I was really worried for my husband and my daughter, and I really wanted our daughter Nicole to have a sibling.
Kathy Guisti: [00:16:02] But I also thought people were going to think I was insane, like, or irresponsible even for doing that. But I kept writing about it. And, um, you know, I kept putting down what I often call in the book, which was my North Star, which was, if it was the last thing I did was to grow our family, give Nicole a buddy because I grew up with an identical twin, so I always had a buddy by my side and my husband, you know, and they were a group of three, and they got each other through all of this. Then I was going to be a happy camper if that was the last thing I did, and I set my sights on that. But that did become a huge one. And it's what I always tell people, you don't have to have a want that big, because that's a big one, but you have to know what you really do want. Do you want more time with your husband? Do you want to travel? Do you want to be remembered a certain way? Do you want a legacy? Like you have to write those things down? And the more I was writing, the more I knew what I needed to do. And that led me on a parallel path of dealing with oncologists. At the same time as I was dealing with fertility specialists and doing, you know, all kinds of research in both topics, you know, from cancer to IVF.
Tyler Johnson: [00:17:13] So I have to ask. One of my favorite books on mortality and oncology and life is When Breath Becomes Air. So for those who are not familiar, this is a book written by a man who was a neurosurgery resident at Stanford. And then he opens the book by recounting he had had some back pain, got an MRI of his back, and then, as a neurosurgeon, to be was scrolling through his own MRI on the computers at Stanford and saw that his spine was riddled with what were pretty clearly metastatic cancer spots. And then through a process of a bunch of other tests and everything, eventually found out that he had metastatic lung cancer and then started treatment and then basically writes the book from the time that he was diagnosed until he died. And there's a very moving piece where he writes about sort of paralleling what you were just saying about how his thinking changed, and a lot of his thinking became about his child, the legacy that he was leaving his child, and sort of the the way that his perception of time and priorities and all the rest of it changed as he was watching this, you know, very small child learning to walk and to speak and whatever while dealing with his own fatal cancer diagnosis.
Tyler Johnson: [00:18:36] So all of that is just to say that I can only imagine if, on top of all of those concerns, which I'm sure were already present, as you're sort of articulating for the child that you already had, if you're then adding on top of that the idea of trying to conceive another child, not to mention the fact that that then is going to have to be sort of interlaced with what treatments do you need for the cancer, and when are the treatments going to happen and when would conception, I mean, you know, I mean, there's a whole like that just becomes very, very medically complicated. So can can you talk through what your inside life was like as you tried to navigate your way through what must have been both a very medically complicated and then very emotionally fraught process?
Kathy Guisti: [00:19:27] Yeah, there's a beautiful piece in the book where I'm talking to my husband. He has our daughter, Nicole has her in the rocking chair. He's just reading to her, and I'm just looking at the two of them. And I'm thinking to myself, I can't just leave the two of them alone. I just can't. And it had been something I was writing about over and over again. And so it took time for me to sit down and talk with him, because you have to imagine the impact this has on your spouse. Your spouse wants you to live as long as you can live. And now you're saying, I want to take the chance to have another child. It's a child you're going to have to raise because I'm not going to be here. So you're going to have two children to raise. It's going to be a lot. And also, we don't know what the what the pregnancy is going to do to me and whether it's more risk. But I was explaining to my husband, Paul, like, this is the most important thing I can do if I'm going to die in three years anyway. And now I die in two and a half. But I leave you guys healthy and happy. That's the most important thing to me.
Kathy Guisti: [00:20:26] But there's another scene in the book where I didn't take this lightly. Like, you don't just make decisions like this and, you know, sit on the floor with your husband and say, so this sounds like a good idea, like you have to think it through. And this is where I always recommend in the book, reach out to a resource like a social worker, somebody in your church, somebody who can be a really trusted third party for you and walk through this process. So we met with a social worker once I started having this discussion with Paul. You know, the social worker told us both to step away and come back at the next visit and explain to him where we expected to be in the next six months. And, you know, I'd gone to Starbucks and I wrote it all on a piece of paper. I knew exactly what we would be doing for the next six months and how this was all going to play out. And Paul came in with nothing. And I write in the book. It's not that he came in with nothing because he didn't want to think about it, or he didn't want to do the exercise. He just wanted to do what he thought I wanted to do, and he wanted to be there to support me. But by working with a social worker, it did tell us we couldn't do this alone. We didn't have family, anybody around us in Chicago, and that we would have to move back east near his family and my family so that he would have emotional support as well. And so we created a plan. You know, you have to sit down and say you've got your immediate needs. Those are often easy for other people to help you take care of. Friends can help you. You can find rides from the hospital. There's all kinds of resources available to you. But the tricky thing is, in that moment of potential fatality, knowing it is what you want and actually making that your North Star and putting that plan together, but making sure you're watching how it's impacting everybody else you love too, and making sure you understand, like what are the steps to get you there and how do you do it? And I think my business background probably helped me a lot. Like my first instincts, you know, was always is in my job. I had to, you know, do the launch, set the strategy, write the plan. And that's what I was used to doing. So I just kept doing the same thing in our personal life.
Henry Bair: [00:22:30] So when you look back on that period of your life, what were some of the biggest sources of support? And I mean, this not just in terms of like emotional support, but like, you know, even broader, like existential support, for example, like what were the things surprising or otherwise, that really kept you going?
Kathy Guisti: [00:22:48] It was surprising to me was, you know, I'm not a particularly religious person. Um, my husband was raised Catholic, and so he was more religious than I was. But somehow we belong to this most beautiful little church and the town we were living in outside of Chicago. And when we were doing the IVF, it wasn't working. And I remember saying to Paul, like, we can't do anymore. Like, this is just too much going on in my body. And we decided we would do one last try. And there's a beautiful piece in the book where I write that on the way to doing the egg retrieval and then moving on to embryos one more time, we went to the church and we lit a candle, and I have to say that the priest and that church played a surprisingly pivotal role in our lives, because we then ended up having our son, David, on that last try. And we came to the church and it was Mother's Day. And the priest there who had been with us every step of the way, because he really did help my husband tremendously through this process. It was time we were going to be leaving. Now we were going to be heading back east to be closer to our family, and the whole church just stood up and prayed for us. It was like this amazing community that I've never found again on the religious side. It helped us through unbelievably. And then I think on the other side is just knowing that part of the plan was getting back to my identical twin, my sister, who I missed tremendously. Anyway, she was on the East Coast and ironically, she lived near Paul's parents. So my moving back east, I could get near my sister and he could get near his parents. And that was kind of a gift for us, is knowing that if we could make this plan work, we would have that level of support around us. But yeah, there were a lot of surprises in the process of how you get through something like that.
Tyler Johnson: [00:24:40] So can you talk us through then a little bit. So every story with cancer is unique right? Every journey is its own. And one of the unique aspects of your journey is that you go from. So, you know, initially, as you've described, there's this period where you're not even sure yet what's going on. Then you get the diagnosis fixed, meaning in place, fixed in place, and then there's a period of grappling with what that means and what the immediate treatments are going to look like, or if there are going to be any immediate treatments since it was smoldering myeloma. But anyway, and then working out the piece about fertility and trying to have another child, but then there's this whole other chapter for you, which is how you went from grappling with your own diagnosis to then making a better understanding of and better ability to treat this disease, sort of the quest of a lifetime, right, where you made a decision not just to grapple with your own diagnosis, but to try to equip the people who were studying this disease and its treatments with the funding that they needed to have better tools to be able to do that. Yes, for you, but for anybody who was diagnosed with this. So can you talk with us a little bit about what that part of your journey looked like?
Kathy Guisti: [00:25:58] Yeah. So the whole time that I was going through this and I think this a lot of people can relate to this. Our insurance was through me. My husband had his own company and I was working in the pharmaceutical industry. They had a great health insurance plan, so our insurance was through me. So as I'm going through all of this work and this testing and deciding what I'm going to do, I also have to go back to work. My whole life was my career. I'd put myself through school and I'd worked so hard to get to this point, and I was just completely on the fast track at this pharmaceutical company, and now I know I'm going to die, and I have to go in and tell my boss, the CEO, that, you know, I have to take a leave, and then I don't know what I'm going to do. And you know, what happened when they found out I was smoldering was the insurance company said, well, go back to work. And because, you know, I was able to work, I was just emotionally not really focused on it.
Kathy Guisti: [00:26:54] So I did I went back to work and I kept working through all of this while I was working. It was interesting. There was a friend of mine who had every year we had to say, okay, who has to run the United Way campaign for the pharmaceutical company this year? And one of my friends was having to chair it.And so she was saying, listen, for the United Way campaign, we'd love to raise money for Kathy's cancer. And so where I was working at Searle, which, you know, has since become Pfizer, a lot of the employees and everybody around said, we want to raise money for this unknown, uncommon cancer that Kathy has. And everybody started donating. And the reason was because there was no research at all happening in myeloma. So when people asked me, how do you feel about this? You know, you know, is there any room for hope? And I would say, no, like there's not a single drug in the pipeline. You know, we all worked in pharma. If you don't see anything in the pipeline, it's going to take $1 billion in ten years to get something. So, you know, we all knew I was screwed. So we all said, okay, let's raise the money for research. And the whole point of that research was to say, if we can bring some researchers to the fold, like at least get scientists working in this field, that would be a win. Fortunately for me, my identical twin is an attorney, so she was able to take those funds and move it into a community fund, which then allowed us to start funding researchers very quickly in the field of myeloma.
Kathy Guisti: [00:28:18] And you know this all too well, like in order to get scientists to work in a field, you have to have funding, like there's only so much a scientist can do without a grant. So we started doing a lot of grant funding, and then we started doing more fundraising. And next thing we knew, our first event that my sister and I hosted raised half $1 million. And everybody said, okay, clearly the two of you are kind of meant to do this. So we started the Multiple Myeloma Research Foundation as a standalone 501(c)(3), which is a true nonprofit not under a community fund. I didn't want to do it. I have to be honest with you. I was like, okay, I'm moving east. I'm finally leaving my position in the pharmaceutical company. We finally got an insurance through my husband now, and I thought I was just going to be, you know, raising my little baby David and Nicole. And next thing I know, now this this idea is coming forward to raise money. And I thought, okay, well, it'll be slow moving, but it'll be interesting to do. Well, in all honesty, the scientists came forward and we all started working together and there was a tremendous amount of energy.
Kathy Guisti: [00:29:24] There's something about being a very rare, uncommon cancer that is highly fatal and completely neglected and underfunded. It means that whoever is working on it is really paying attention to you. And if you can bring everybody together. In a room, which is what I was really good at from having worked in pharma. I would just be like, okay, I know how to do this. I'm going to bring in whoever the leading academics are, whatever pharma company or biotech might be interested in this field. I'm going to learn what the NCI National Cancer Institute is doing. I'm just going to live it and breathe it and start seeing where we should put our grant funding. And by bringing the community together, we were able to start identifying what is the problem in this disease. And it's not unusual. It's the fact that not enough scientists working on it, and not enough samples or knowledge to understand what this disease was all about. And I find that to be true today for so many rare diseases and cancers. But by having us all work together, we could gradually say, okay, if you need tissue samples. And I could tell they did, because there's a great story in the book where I say, I'm getting my bone marrow done, and the scientists come down with a red igloo cooler and grab the samples, because it's a Friday night and they don't want my cells to die, and they're doing an all nighter just working on my cells. And you're like, okay, tissue is gold. If it's this gold, like, we should give you a tissue bank. So I worked on developing a tissue bank across a multitude of centers, and they had to abide by the rules and give us high quality tissue, not like a second or third pull, but an early pull, and give us the good, the good quality. And we would work together on what scientific questions we would be studying in the tissue bank. And as we move further, I would just keep asking the question, okay, so what else do we need to do now? Genomic sequencing was just starting to develop. So I remember meeting with everybody at the Broad Institute and saying, what do you need to be able to sequence the myeloma genome? And they said this number of samples, this amount of money and, you know, a collaborative leader. And I was like, okay, we're in. So we were the first to sequence the myeloma genome. Once you start understanding your disease, then you can start bringing in pharma and biotech because they now have less work to do to understand what your targets are, what's going on in the disease. And you start bringing industry together. And that was like my sweet spot. And so we started moving through the treatment phase, and we were working on vaccines and making stem cell transplant better.
Kathy Guisti: [00:31:53] But in came this crazy drug called thalidomide. And I write about that in the book, too. A bit of serendipity, where it's anti-angiogenesis is what everybody was studying, and that's what the side a scary drug was doing. And it turned out to be a really effective drug in multiple myeloma. And that forced us to switch our strategy and our business plan to novel drugs. And we just kept moving. It was, again, like I said before, it's look at the strategy. Where are you trying to go together? How are you going to do it? What are the programs to do it? What money do you need to get it done? And as a result, the MMR just became one of the best run organizations out there. It was at the same time it was Michael J. Fox, cystic fibrosis, and us, and all three of us were working together and sharing knowledge. And how are you doing it? How are we doing it? I brought Bob Bell from cystic fibrosis onto our board and we just kept making things better. And it was a crazy time, but the success was quite something.
Tyler Johnson: [00:32:53] So I have this memory as a solid tumor cancer doctor. When I was a fellow in oncology, which was about ten years ago, to about seven years ago, at least, when I started my fellowship for metastatic melanoma. So this is the most dangerous kind of skin cancer. I mean, forget about curing the disease. There was, in effect, nothing to treat the disease because all of the traditional chemo drugs that we use for 90% of other solid tumors just don't work at all in melanoma. And so the only thing that was available was this one really horrifically toxic therapy that had to be given over many, many weeks and months. It was horribly dangerous, had terrible side effects, and almost never worked. But that was the only thing that was available. And while I was a fellow, the only time that I have ever seen before and after Pet scans on the front page of the New York Times was when they did the initial immunotherapy trials for melanoma, which were absolutely game changing. And now the long Terme data from those trials indicates that about a quarter of the patients not just got good treatment benefit, but appear to have been effectively cured because of these immunotherapy drugs, which is just to say that now, whereas previously there was virtually nothing on offer, now even patients with metastatic melanoma can sometimes be cured. So all of that is to say that that change in the landscape, I mean, it's sort of hard to come up with a better word than miraculous. And I don't know the multiple myeloma literature as well, because that's not something that I treat. But I'm hoping that without getting too much into the nitty gritty details, because, you know, all of the treatment acronyms and whatever are probably not going to mean too much to most of our listeners. But can you just give a flavor for sort of where things stood with the treatment landscape when you were diagnosed and where things stand now?
Kathy Guisti: [00:34:50] So when I was diagnosed, there was nothing. I mean, basically, you know, they might be able to give you something for the anemia. And over time, we had some things for building bone density because myeloma attacks your bones as well. So it was called supportive care, but there was nothing effective. So my grandfather had had multiple myeloma. He was treated with melphalan and prednisone. That was basically what they were offering me with a stem cell transplant. So I was fortunate. Stem cell transplant was a new procedure that they were using in myeloma, and it was only a few years old. And so I was, you know, what they consider young and otherwise healthy. I was like the perfect candidate of what anybody would want to move through a stem cell transplant. So the decision for me was, again, and this is where I say to everybody, the science is so darn amazing and moving so darn fast that it's up to the patient to be on their game now more than ever, because the system is not moving as fast as the science, so you've got to learn it. So when I was going through all this, I would go out and talk to everybody on stem cell transplant. Should I do it? Should I do it with my sister? Should I do my own? You know, how was I going to solve this? And depending on where I went, some people were saying, do the transplant right away, go right away. And others were like, no, you're still smoldering. You could buy yourself a few years of time and you should do it that way. And so it took a lot of research for me to decide which was the right decision for me to wait or to go, but I decided to wait, and that was the best move I ever made, because it bought me a lot more time in that window of time.
Kathy Guisti: [00:36:26] What happened was, you know, we started the foundation in 1998. By 1999, we were starting to see things moving with thalidomide. And like I said, that was a game changer for us because all of a sudden you're realizing that there could be drugs that help myeloma. It may not just be working with the immune system. So once we did that, we had a tremendous amount of fortune because thalidomide then became a next generation of drugs. Same kind of approach with revlimid and another drug called pomalyst. So we had this one class of drugs that came out of thalidomide at the same time. And this is where science can be some serendipity, but go for it. Julian Adams was working in a phase one trial of all comers for a new proteasome inhibitor that he'd been working on, and ironically, one of the first patients he put into the study was a myeloma patient who went into a complete response.
Kathy Guisti: [00:37:19] We just didn't see complete responses in myeloma patients back then. So Julian called me and said, hey, listen, I hear you're like, you know, putting the whole group and the community together. I really need to get in front of the myeloma community. So I happen to have a round table going on in Boston. And he took it over and we presented the results and we put together a clinical plan. And that became another class of drugs in myeloma that we brought to market in record speed. It was unbelievable. And that drug was called Velcade. So that whole class then built called proteasome inhibitors. So now we have the drugs that are based off thalidomide, proteasome inhibitors and stem cell transplant. And you can mix and match these to try to buy patients time. Then a fourth drug came out which was an antibody daratumumab from J and J. And then all of a sudden we started realizing antibodies are going to be effective in myeloma as well. And so this all started happening within, like, you know, a decade of time that you're making all of this progress in one disease. So now we have, you know, a lot of really great drugs, and we're able to help patients that are newly diagnosed. But our patients are all still relapsing.
Kathy Guisti: [00:38:30] So that's what happens with myeloma. It's just a sneaky cancer. And so you know you think okay, we're getting more and more patients into a really strong remission. But they're still relapsing. And that's where just like you said the world of immunotherapy stepped in. And so Car-T is a highly effective therapy in multiple myeloma. We were one of the first trials going on with the BCmA and other Car-T therapies. And now what we're also seeing is Bispecifics, which are another immunotherapy highly effective in multiple myeloma. So the job of the Multiple Myeloma Research Foundation today, where I'm still on the board, I'm having been the founder and the CEO for a long, long time, is to say, okay, now we have over 15 drugs approved in the field of multiple myeloma. Our patients are not living just three years like when I was diagnosed, but over ten on average. But these amazing drugs, I honestly believe that between what's approved and what's in the pipeline of clinical trials, we may have potentially curative treatments out there, but we don't know how to use them. We don't know how to combine them. We don't know how to sequence them. We don't know how to dose them. There's still really quite toxic for the patient. So we worried about, you know, just the side effects, the infections, the neurotoxicity, the cytokine release syndrome that they may face. And so it's hard to get them to the community.
Kathy Guisti: [00:39:53] And like I said, you need to get all of these drugs to a place where all the patients can benefit because myeloma, again, skews older, male, African American. We have to make sure we're getting to everybody in the system. So today, myeloma is considered one of the leading cancers in the country in terms of the progress that we've made and in terms of its potential toward a cure. And I think it's just a huge tribute to the entire community, from FDA to NCI to academia to community to the Mwmf. And we became the role model for every other foundation out there, which I thought was such a gift. And I loved teaching that up at Harvard. But we still have a lot of work to do because patients are still dying, they're still dying, or they're struggling through these treatments. And so you have to work with pharma. It's not like people aren't willing to work with you to try to figure these things out, but you have to be a loud voice in the room and say, I think one of the statements I always made all the time was, if patients could hear us now, meaning like, I don't love the way this conversation is going, and having a patient leader, I think, really did help the MMRF.
Tyler Johnson: [00:41:00] So I want to pause briefly. I've sort of been mentally keeping track during our conversation. This has been in some ways an unusually technical conversation, or at least there have been a lot of technical terms. So I just want to sort of rattle off and define a few of them that have come up. So the first one is Car-T cell therapy is it's sort of the newest, coolest thing in cancer, where basically they take a person's own immune cells out and quote unquote, train them to recognize a particular kind of cancer cell and then put the cells back into the body, with the hope being that these trained immune cells will attack the cancer cells and leave the other cells alone. Although in practice, usually people who get this. So in some cases, particularly for blood cancers, the results of this treatment are miraculous. People who have had, you know, have been treated many, many times for their cancer and have no traditional treatments left, sometimes go into complete remission because of the treatment. At the same time, it can make people very, very sick when they're getting the like. People sometimes have to be Preventively admitted to the ICU. Bispecific antibodies is where you basically take a chemotherapy molecule, and then you link it to an antibody that specifically recognizes a particular protein on a cancer cell, so that the idea is that it becomes the drug becomes like a heat seeking missile, where it takes the chemotherapy molecule directly to the cancer cell and again, hopefully leaves the cells around it alone.
Tyler Johnson: [00:42:28] And then the last thing is smoldering myeloma. So as Kathy explained earlier, multiple myeloma happens because plasma cells which are a normal part of. So inside of your bigger bones you have this spongy stuff called bone marrow, which is where your blood cells are made. And your body has to be making blood cells to replace the old ones that are dying throughout your life. That so your bone marrow never shuts down. It's making new blood cells for as long as you're alive. And so one of the immune cells that you have in your bone marrow is called a plasma cell. That's normal. But in the case of multiple myeloma, the plasma cells become abnormal. And then they start to multiply in such a way that they sort of take over the bone marrow and start to crowd out, so to speak, other things. This becomes particularly problematic, as Kathy mentioned, because the plasma cells don't just multiply and sit there, they multiply and also make proteins that they send out into your blood. And then those proteins cause all sorts of problems so they can make your calcium go up, which can cause a number of problems. They can effectively punch holes in your bones, which can make your bones weak and cause a lot of pain. The cells that proliferate in your bone marrow can cause anemia. And then there are other things that go along with that. But those are some of sort of the initial manifestations. And so there's a sort of complex staging system for how advanced the myeloma has become. And basically what smoldering myeloma means is that when you look in the bone marrow, you can see that there's a proliferation of abnormal plasma cells, and you can tell that this is going to become myeloma, but it's not sort of fully matured yet. It's not causing all of the problems that full blown myeloma will cause. But you know that if left unchecked, it will eventually cause that. And so then there's some controversy, as she outlined about do we treat those people like they're people who already have the disease, or do we just kind of watch them carefully until they develop what we traditionally would have defined as the disease?
Henry Bair: [00:44:33] Thanks, Tyler, for that miniature glossary. So, Kathy, listeners at this point might be wondering when you first got your multiple myeloma diagnosis, the prognosis was three years. Yet here you are two and a half decades later. So how are you doing currently in terms of the multiple myeloma?
Kathy Guisti: [00:44:56] Yes. So with multiple myeloma, it's funny. You never say you're cured. You know, working in the field for so long, there's plenty of patients that were before me that, you know, were out ten years and relapsed. It happens. It just happens. And, you know, for me, I still have a spot on a Pet scan that's still lights up. And they just don't know. They don't know if it's myeloma or it's something else. They just don't know. And so you kind of live your life in some ways going, okay, I've been through this so many times now and there's so many treatments, but you still get scared like everybody thinks you should be 100% and you're not, and I did I did have a relapse after my transplant, where I went back up and did donor lymphocyte infusions and revlimid with my sister, and that got me back into remission again. So, you know, I know it happens. And then I think the second thing that happens is, as you're getting older, which I am now, which is a great thing, you're more prone to other cancers. So two things can happen. You may get a second cancer. It's much less common, but you may get a second cancer just because of the treatments you had. So for me, I had radiation to my ribs for my multiple myeloma.That put me at high risk for breast cancer. At the same time, my identical twin sister did get breast cancer and she was diagnosed stage three. And so watching her and trying to help her through that, like made me realize, and it was one of the myeloma docs that I met at a precision medicine meeting that said, you need to get to a surgical specialist. And this is where I write the book to say, duh! How did I not know that? I've been living in the field of cancer, and I didn't think to get to a breast specialist. When my sister got breast cancer and we're identical twins. I should have thought of that.
Kathy Guisti: [00:46:36] And then when I got to see her and she's like, I'm not as worried about that, but I'm more worried about your radiation. So as a result, I was followed very closely for breast cancer, alternating between the mammogram and then doing MRI. And eventually they did find breast cancer for me. They did find it very early and I went through and I thought, okay, well, here I am. This is when I was starting to write the book, and now I'm diagnosed with breast cancer. And I'm realizing, okay, well, the science is interesting and this system is still the same old broken system because you're finding this out and the doctor's looking at you saying, I'm really sorry, this is what you've got. And then again, you're rattling off and now I'm moving, as you were saying earlier, from the blood cancer to the solid tumor. And I hadn't been a solid tumor cancer patient before. So now I'm going on surgical oncologist, medical oncologists, pathologists, radiation oncologists, and I'm doing all of this running around.
Kathy Guisti: [00:47:33] I will be honest with you, I made a lot of mistakes, and one of the biggest mistakes I made was not making my myeloma doctor talk to my surgeons. And I mean both surgeons, my plastic surgeon, and who took care of the plastic surgery after, and my surgical oncologist because I ended up in something that should have been moving toward a double mastectomy for the reasons of having seen my sister stay on Anastrozole and all of these drugs, and realizing if I did that, I wouldn't have to do radiation and treatment. I could be done. I decided I would do that, but the infections kept me at it for four surgeries, five, maybe over 18 months. And it was torture and just a completely different way, like ending up in the hospital in sepsis, just scaring the hell out of my family all over again. I honestly believe if I had kept those doctors in better integration and communication with each other, they would have understood. Like just because a myeloma patient looks like they may have a normal immune system, they don't. And our antibodies aren't the same and we're weaker, and they should have probably done a lot more to keep me away from the infection side. So again, this is where you have to speak up. And I didn't I probably knew in the back of my mind like, why are these guys not getting on a conference call and talking this out? But they don't unless you force it.
Kathy Guisti: [00:48:52] So I think that's where the patient gets hit so badly with the identification of who's your best team. Why do you want to pick that team? How do you integrate the team? And then if, God forbid, you end up with two cancers and you're still battling both, how are you integrating them all together and making sure they're talking to each other so you optimize your care, never mind how you're dealing with all the insurance issues and things like that that are going on. So look, I had a huge support system. I was incredibly lucky. But I will tell you, I wore my family down like you can imagine at this point. My kids are adults. They're like such great kids. They're taking off work. They're coming up to help my husband for the surgery. And next thing you know, it's the morning of surgery. I have Covid, can't do the surgery, and they can't get me back in for, you know, ten days, two weeks, you know, everybody can take off work again. You know, everybody wants to help you so badly because they know that they can be there to cook, to walk the dog, to do all those need things. And everybody wants to help. And sometimes there's just so much unexpected that it could drive you crazy. And that's when you hear in the book, like having read 26 journals of my life to write this book and going back and reading them all over again, you know, I was not surprised that people expected apologies from me. Like, I worked so hard at saving my life and saving everybody else's lives. And that was so important to me and gave me such purpose. But at the end of the day, I did miss a lot and I feel like it did take a toll. So that's why I kind of wrote the book. I was like, if I write the book, maybe I can make it easier for you to save your life, and you can spend more time living your life and trying to enjoy that, that time that's so important with your family.
Tyler Johnson: [00:50:39] You have been through now two cancer journeys, one of them very lengthy, the other one relatively new. And so what I'd like to ask you is if you can first reflect, having been on these journeys, what advice would you give to people who are listening, who are diagnosed with cancer themselves? Like, what are 1 or 2 of the things that you think are most important? And I get that you've written a book on this, but if you had to highlight a couple of things that you really feel like are key, what would those be? On the one hand, and then on the other hand, after having been on this journey, what advice would you give to health care professionals or rising health care professionals? Like what do you think is most important for us to remember as we help patients to navigate these treacherous waters? So first advice to patients, then advice to health care workers.
Kathy Guisti: [00:51:30] Okay. So advice to patients is I'm going to repeat this because it's so important. The science is amazing and the system is not. So unfortunately the burden is left to the patient and the caregiver to make some of the best decisions with their doctor in order for you to be able to do that. The first part of where I set up the book is almost the most important when you're newly diagnosed, and that is number one, you need to know where to go and what the best sites are. So initially what I tell you is you can go to Cancer.gov, which is the NCI. Cancer.net, which is ASCO. I don't mean to throw all these acronyms again when you just explain some of the others, but just know that the Cancer.gov, .org, are all like really good sites for you to use. But the most important thing you can also do is once you know what, you have to go in and put in your disease and a foundation and see if there is an organization like the Multiple Myeloma Research Foundation that can help support you. These nonprofit organizations. And again, some of them are absolutely amazing. Others are tiny and not getting as much done, but some of them are phenomenal and patients don't know they're out there. So like examples I give are Mwmf, Cancer Care longevity, Pancreatic Action Network, like Fight Colorectal Cancer. Like, these are good organizations. All they do is live and breathe your disease. And when you actually go to see them, you can call and you will find out that they have like at the MMRF. We have trained nurses who are on call at all times, that will literally take your case from beginning all the way through clinical trial, if that's what you're looking for. And they get to know you and they know every doctor in the myeloma space, they know where you live, they know exactly when to get you to a social worker. They can help you through the entire process. A lot of organizations have that. Some of the hospitals have it, too. So make sure you're asking those questions.
Kathy Guisti: [00:53:27] Trusted resources that you can use to get you on your game right from the start. The second piece is getting a second opinion and putting your team together. So for me and I think for others, I ended up, you know, you have the choice of a community center, an academic center, an NCI designated cancer center. A lot of it depends on what you're capable of doing and how far you can go. So don't beat yourself up. Go to the hospital that has the highest number of patients that look like you, that can help you. But if you can get a second opinion at an academic center, then allow that doctor to be a resource with your community doctor. They will become a team. Like, I had a great local oncologist that worked with my doctor at Dana-Farber. I didn't want to have to be driving to Boston every day, so having that team approach was super helpful for me and they will do it.
Kathy Guisti: [00:54:17] And then the third is you've got to know your insurance. I just can't say it enough. Like sometimes you get hit with out-of-pocket costs that are just going to throw you over the edge, and it just creates unbelievable stress for you. So that's if you can get those issues done right from the start and then sit down and like I said, put together your list of needs, get your caregiving team. Don't leave it all on one person just because they happen to be in the house with you. Branch out and get to as many people as you can, and then use that moment to actually write down your wants. Your North Star. For me, it was building my family and making sure we created the best memories together. Traditions. And I live with that with my sister. We have all these traditions. We're so lucky to have two amazing families and so we pulled it off. But there are times when I look back and thought, God, I lost my way on that North Star. So you have to really be paying attention to that because cancer can take over your life. On the medical side, I wish that they would help the medical teams to have stronger teams where you allow the doctor to do what the doctor knows best. So typically what happens is we get on average 16 minutes with our oncologist. It's not like the oncologist only wants to spend 16 minutes with you. The oncologist wants to give you as much time as they can. It's just the burden of the system on the health care individuals. So in my mind, and you were referencing this earlier, like, yes, when you're telling a patient they have cancer and you're going through all of this, a lot of it isn't registering with us.
Kathy Guisti: [00:55:47] But if they would allow the office to bring in a navigator to bring in support staff for the oncologist that you really trust, it could be a nurse practitioner, it could be a navigator, it can be a PA, I don't care, but I wish there was a better way to start funding that level of support so that the oncologist can spend the time really working with you on your treatment, and then the backup team can really help you put that plan together and, you know, answer the questions that you're struggling with. And also be keeping an eye on the caregiver that's sitting with you, who's also probably struggling and trying to listen to it, too. I just feel the way it's set up right now is nobody wins. You don't have a navigator, you don't know where to go. And. Everything is left to the doctor, and you're trying to answer way too many questions. And the patient's not always informed. So come in informed. Work with the doctor as best you can, but find other navigation resources that can help you. It may be at the hospital, it may be at the foundation, but I wish they would give the oncologists that level of support beside them. I did hear that Medicare is now looking at a program to support navigation, actually give it the coding and help it work in the hospital. So I don't know where that is. It's like just starting right now, but I'm hoping that maybe that's a move in the right direction.
Tyler Johnson: [00:57:07] You know, I just have to say, as we close as a person who is an oncologist and is very steeped in the science and research and data in this field, one statistic that may have sort of slipped by, you know, through your ears without really catching your attention, listeners, is that at one point, Cathy pointed out that what's called the median overall survival. So that is how long is a person going to live on average from the time that they're diagnosed, which when she was diagnosed, which, let's just note, remarkably, is 25 years ago that the median overall survival for her disease was three years. Now the median overall survival per her report. Again, I don't know the data because I don't take care of patients with multiple myeloma, but is greater than ten years. And clearly in her case, it has been now more than 25 years. Right. So there are two things that I take away from that, that I think are important, both for health care professionals and for people who are not healthcare professionals who are listening. One, is that a tripling or going towards quadrupling of the median overall survival in any disease in a quarter of a century is just stunning. I mean, there are examples of that happening in cancer, but even in cancer, it would be like there are not that many where the median overall survival has increased by that factor over that time. So which again, I think is a testament, not that it's only this, but part of what is so difficult about achieving that kind of progress is precisely the coordination between the academy and industry and patient groups and funding and getting sort of all of those people to sit in the same room at the same time, to be able to to coordinate the movement of funds through those different places to bring treatments to the fore.
Tyler Johnson: [00:58:57] So that's thing number one. And then thing number two, there was a very famous essay written a number of years ago called The Median is Not the Message, which is a basically a person who is also an author who was diagnosed with a rare cancer, who went and looked at the, you know, what the median overall survival or whatever was. And they were supposed to live for a couple of years and then wrote this essay because they had then gone on, as you have to live decades, which is to say that I always tell my patients because almost always in a oncologist's office, one of the first questions out of people's mouth is, how long am I going to live right? And what I try to always explain to everyone is that every median overall survival is really just one element of a curve, a normalized curve, and that there are people at both of the tails. Right. Which is to say that whatever kind of cancer you have and whatever your your stage and your supposed prognosis, you just never know, both because you never know the personality of your individual cancer, which is literally genetically as unique as you are, and also because you have no idea what's going to happen with the treatment landscape over the time that you have the cancer. And I think both of those things are important to bear in mind.
Kathy Guisti: [01:00:08] Yeah, very well said. Completely agree. I think the whole focus on collaboration across the medical community is critical. There's not a lot of incentives for everybody to do that, and it takes really good leadership to get it there, which is so important. And then it's it's like you're saying too, which is everybody's different. And your your story with your cancer is different. But you have to know where to go, like, who to see. And you have to be on your game in terms of the treatments, you can't just rely on your health care team because there's so many cancers. And just try to go to an American Society of Clinical Oncology meeting and see everything being presented at that meeting, or the American Society of Hematology, and expect your oncologist team to be on top of everything. It's just not humanly possible. So be part of the team. If you're a patient, be part of the team. And if you're a clinician, be glad the patient is engaging and, you know, do your best to work together because it's it's how you're going to find the best treatment plan.
Henry Bair: [01:01:07] Well, with that, we want to thank you again, Kathy, for taking the time to join us for sharing your inspiring story. You know, listening to your path here reminded me of an episode that we recorded a few months ago with David Fajgenbaum.
Kathy Guisti: [01:01:20] Yes.
Henry Bair: [01:01:21] Are you familiar with David's work?
Kathy Guisti: [01:01:23] Yeah, yeah.
Henry Bair: [01:01:23] He was diagnosed with also very rare disease. Castleman disease. No one knew what it was at the time. You telling your story reminded me of what he described on that episode of him, you know, requesting biopsies of his own tissue sample, going to the lab so he could, like, experiment with his own tissue sample. And he eventually succeeded in finding a cure for himself. And now he's launched this foundation, every cure, to repurpose existing drugs for all those all those rare diseases out there that have no treatments yet. And that was a very inspiring episode. This has been an inspiring episode. Thank you very much for all the work that you do, and we'll be sure to link your book in the description to this episode. And of course, we encourage our listeners to check it out.
Kathy Guisti: [01:02:03] Thank you.
Henry Bair: [01:02:08] Thank you for joining our conversation on this week's episode of The Doctor's Art. You can find program notes and transcripts of all episodes at the Doctor's Art.com. If you enjoyed the episode, please subscribe, rate and review our show available for free on Spotify, Apple Podcasts or wherever you get your podcasts.
Tyler Johnson: [01:02:27] We also encourage you to share the podcast with any friends or colleagues who you think might enjoy the program. And if you know of a doctor, patient, or anyone working in health care who would love to explore meaning in medicine with us on the show, feel free to leave a suggestion in the comments.
Henry Bair: [01:02:41] I'm Henry Bair
Tyler Johnson: [01:02:42] and I'm Tyler Johnson. We hope you can join us next time. Until then, be well.
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LINKS
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 Doctor Who Cured Himself (with Dr. David Fajgenbaum).
