Latest / Get Real with Jim Weiss / Kathy Guisti, CEO of The MMRF and Author of Fatal to Fearless: 12 Steps to Beating Cancer in a Broken Medical System

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Kathy Guisti, CEO of The MMRF and Author of Fatal to Fearless: 12 Steps to Beating Cancer in a Broken Medical System · Get Real with Jim Weiss

• 0:09
  Speaker 1: I'm Jim Weiss, chairman and founder of Real Chemistry, and
• 0:12
  Speaker 1: this is the Get Real with the Chairman Podcast. So
• 0:20
  Speaker 1: today's guest with me is the legendary Kathy Judicty, a
• 0:24
  Speaker 1: force of nature, an author, and the co founder and
• 0:27
  Speaker 1: CEO of the Multiple Maloma Research Foundation. Today we're discussing
• 0:32
  Speaker 1: her tour divorce debut book, Fatal to Fearless, Twelve Steps
• 0:36
  Speaker 1: to Beating Cancer in a Broken Medical System. Please purchase
• 0:40
  Speaker 1: it for yourself and for anyone you know who has
• 0:43
  Speaker 1: been impacted by cancer, which is one in two people,
• 0:47
  Speaker 1: basically all of us. Kathy has been in remission for
• 0:50
  Speaker 1: multiple maloma, a blood cancer affecting the plasma cells in
• 0:54
  Speaker 1: bone marrow for three decades. With her at the helm,
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  Speaker 1: the MMRF has raised a remark remarkable half a billion
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  Speaker 1: dollars and change the paradigm for those diagnosed with this disease.
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  Speaker 1: It's an honor to have her on the show today. Kathy,
• 1:10
  Speaker 1: thanks for joining us here today on to Get Real
• 1:14
  Speaker 1: with the Chairman Podcast. So let's get real around a
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  Speaker 1: lot of things, primarily multiple maloma. I want to start
• 1:20
  Speaker 1: with your career and the evolution of the Multiple my
• 1:24
  Speaker 1: Lowa Research Foundation, and then move on to your book. So,
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  Speaker 1: just for everyone out there, can you explain in relatively
• 1:32
  Speaker 1: simple terms what multiple my looma is.
• 1:35
  Speaker 2: Yeah, so, multiple maloma is a cancer the plasma cell,
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  Speaker 2: which is one of the cells of the immune system.
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  Speaker 2: And so what happens with multiple maloma is you keep
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  Speaker 2: making all these wacky plasma cells and it overtakes your
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  Speaker 2: bone marrow and it crowds out your healthy red blood cells,
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  Speaker 2: white blood cells, platelets, And that's what causes problem with
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  Speaker 2: the disease.
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  Speaker 1: How do you find it?
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  Speaker 2: It used to be hard to diagnosed because it was
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  Speaker 2: considered a rare cancer, but in today's world, because my
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  Speaker 2: aloma has had so much awareness, it's actually relatively easy
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  Speaker 2: to spot. The way people can spot it as you
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  Speaker 2: see an elevated protein in the blood and you also
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  Speaker 2: see high anemia, and other ways to spot it are
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  Speaker 2: people come in and complain of bone pain or bone damage.
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  Speaker 2: And then the final thing is it can also affect
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  Speaker 2: your kidneys. The issue with myeloma is it is one
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  Speaker 2: of the most complicated cancers I've ever read about, even
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  Speaker 2: having worked in the field for so long, because it's
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  Speaker 2: a blood cancer, but it affects your bones and your kidneys.
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  Speaker 2: And also the name makes no sense either, Like if
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  Speaker 2: you say breast cancer, people understand what you have. If
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  Speaker 2: you say multiple myeloma, your back explaining well, it's a
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  Speaker 2: blood cancer similar to leukemia and lemboma.
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  Speaker 1: How'd you end up in this latest iteration of your
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  Speaker 1: career and involved with multiple myeloma if you were an
• 3:00
  Speaker 1: industry yourself was diagnosed at a very young age, and
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  Speaker 1: so talk a little bit about the journey here.
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  Speaker 2: I think what helped me the most was, yes, you're
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  Speaker 2: absolutely right. I was working in the pharmaceutical industry. I
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  Speaker 2: had taken a job with merc and I started in
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  Speaker 2: sales and then moved into headquarters quickly.
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  Speaker 3: And was doing marketing with them.
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  Speaker 2: I then took a leave to go on to Harvard
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  Speaker 2: Business School and then went back out to consumer marketing
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  Speaker 2: at Gillette, and then back into pharmaceutical marketing at Cerrol,
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  Speaker 2: which became part of Visor. The only reason I even
• 3:34
  Speaker 2: mentioned that is I think it was incredibly wise to
• 3:38
  Speaker 2: understand both the sales and marketing and general management side
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  Speaker 2: of pharma. I also think it's incredibly wise to make
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  Speaker 2: sure that you've done both consumer and pharmaceutical because there's
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  Speaker 2: a lot of overlap between healthcare marketing and trying to
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  Speaker 2: talk directly to consumers, so my background ended up being
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  Speaker 2: really strong. The interesting thing was, I felt like I
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  Speaker 2: worked in every category in the pharmaceutical industry, from sleep
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  Speaker 2: to infectious disease to our ritists, but I had never
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  Speaker 2: worked in oncology. So, surprise, surprise, at the age of
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  Speaker 2: thirty seven, I was running worldwide operations at Searle when
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  Speaker 2: completely unexpectedly, I had gone to an internist just to
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  Speaker 2: get a referral to a fertility doctor for having a
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  Speaker 2: second child. And when the internes sell, my blood results
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  Speaker 2: come back, and again this is decades ago, he was
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  Speaker 2: on it like this, and he saw elevated protein, and
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  Speaker 2: he saw the anemia, and he sent me back in
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  Speaker 2: for additional testing and then diagnosed my multiple maleomma ironically malamascus.
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  Speaker 2: Older male and African American. At thirty seven, I was
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  Speaker 2: not your typical maoloma patient. But he had had a
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  Speaker 2: patient similar to me, just a couple of like a
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  Speaker 2: year and a half before, and so when he saw it,
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  Speaker 2: he knew and quickly referred me on to a hematologist oncologist,
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  Speaker 2: and that really became okay.
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  Speaker 3: Now I had this horrible disease.
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  Speaker 2: Back then, it's three years to live, no ifs ends
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  Speaker 2: or bots, three years at best, and everybody at Searle
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  Speaker 2: was just shocked that me, who had been like this
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  Speaker 2: overachiever leader just loved my job and was passionate about it,
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  Speaker 2: was going to have to give everything up and just
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  Speaker 2: go back and take care of our one year old
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  Speaker 2: daughter and work with my husband decide what we would do.
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  Speaker 2: It was then that many of the people at Searle said,
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  Speaker 2: we want to start raising money for you and for
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  Speaker 2: this field.
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  Speaker 3: And that's when I started the nonprofit with my sister.
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  Speaker 1: Tell me, like the moment you found out what went
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  Speaker 1: through your mind?
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  Speaker 2: It takes time, you know. It's so funny because a
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  Speaker 2: lot of people asked me that question. What really happened
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  Speaker 2: was I was running a major kickoff meeting for cearl
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  Speaker 2: in January or like everybody's doing their kickoff meetings in January.
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  Speaker 2: And I was in the city and hundreds of people
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  Speaker 2: at the met and I was driving home had been
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  Speaker 2: a three day meeting, and I was thinking, oh, thank god,
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  Speaker 2: I'm getting home.
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  Speaker 1: That was long.
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  Speaker 2: And I got home and there was a note on
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  Speaker 2: the kitchen counter that my husband had taken and it
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  Speaker 2: was from the intern is saying, here's some information back anemia,
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  Speaker 2: da da da, and by the way, i'd like to
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  Speaker 2: see Kathy and you both together when she gets back.
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  Speaker 2: And I remember looking at my husband and going this
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  Speaker 2: is awful, like this is really bad news, and he's
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  Speaker 2: looking at me saying, well, what's the big deal, And
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  Speaker 2: I said no, doctors don't do this unless there's something
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  Speaker 2: terribly wrong. And so I had to wait because now
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  Speaker 2: it's late at night, and again no internet. It wasn't
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  Speaker 2: like I could go in and start searching things. The
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  Speaker 2: next day, went to work and started calling him to say,
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  Speaker 2: what the heck is going on? What's wrong with me?
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  Speaker 2: And that's when he BONDRII told me he believed it
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  Speaker 2: was multiple myeloma, and at that time it wasn't confirmed.
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  Speaker 2: So it's really important for people to understand, like you
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  Speaker 2: always have these conversations that are we suspect, we believe
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  Speaker 2: it could be this, and then as a patient you
• 7:02
  Speaker 2: go through a lot of confirmatory testing that eventually tells
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  Speaker 2: you like for me, I was hoping I was smoldering
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  Speaker 2: or stage one or early stage, but for other patients
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  Speaker 2: you're trying to figueret what your biomarkers are.
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  Speaker 3: It all takes.
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  Speaker 2: Time, and it's a very stressful multi week period that
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  Speaker 2: you're dealing with at that point.
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  Speaker 1: And you didn't have all those tools then right that
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  Speaker 1: we have now. We were still in the darker ages
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  Speaker 1: of multiple myelomas. So you start MMRF. I mean it
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  Speaker 1: sounds like your employer was positive and supportive, which is great,
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  Speaker 1: and we'll get into that when we get into some
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  Speaker 1: of the points of the book. But what did MMRF
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  Speaker 1: look like when you started in ninety five and how
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  Speaker 1: has it evolved today?
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  Speaker 2: Yes, the interesting thing was I had no idea how
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  Speaker 2: to run a nonprofit. I've never worked in the nonprofit
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  Speaker 2: industry in my life, and having worked a lot in
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  Speaker 2: different fields like artwriters. I was aware of Arth Brightest
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  Speaker 2: Foundation when I was at Searle, but it wasn't necessarily
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  Speaker 2: as a nonprofit.
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  Speaker 3: The top priority for me.
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  Speaker 2: I was focused on drug development and getting a whole
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  Speaker 2: pipeline out the door. And so when I started running
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  Speaker 2: the mm r IF, Remember I thought I.
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  Speaker 3: Was only going to live three years at best.
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  Speaker 2: So the whole point of the MMRPH was to say, well,
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  Speaker 2: if we can raise enough money to bring a few
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  Speaker 2: researchers into the field of myloma. Maybe we'll jump start
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  Speaker 2: enough research that I'll live to be three years and
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  Speaker 2: make it five years and my daughter will remember me.
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  Speaker 2: And that was the only goal I had at starting
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  Speaker 2: the MMR was raise some money, get some grants out
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  Speaker 2: the door, attract researchers to the field. Well, it turns
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  Speaker 2: out that we were pretty good on the fundraising side,
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  Speaker 2: and my sister and me and so we were able
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  Speaker 2: to start raising the money quickly. And I think the
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  Speaker 2: background at HBS and also in Farmer helped me to understand, like,
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  Speaker 2: if you're going to make a difference in a broken
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  Speaker 2: healthcare system, you better figure out how to get everybody
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  Speaker 2: to collaborate. So my very first meetings are things we
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  Speaker 2: did in Pharma all the time, roundtables, Like in Farmer.
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  Speaker 2: You can run a roundtable in your sleep, but the
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  Speaker 2: nonprofit center doesn't necessarily do that all the time. And
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  Speaker 2: I would run them, and I would literally have academic
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  Speaker 2: centers on one side and industry on the other and
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  Speaker 2: FDA and the media.
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  Speaker 3: That just made sense to me. That was like being
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  Speaker 3: at home.
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  Speaker 1: You essentially ran a nonprofit like a Ford profit.
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  Speaker 3: I did. And it wasn't because I was so brilliant.
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  Speaker 2: It was just the fact that that was my background,
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  Speaker 2: and it's where I was super comfortable. And I was
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  Speaker 2: very comfortable sitting in a room, integrating these various groups
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  Speaker 2: and then saying to everybody, nobody's going to win here.
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  Speaker 2: Like you know, academic centers, we get it, you need
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  Speaker 2: to publish and perish, and pharmacutical companies, we get it,
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  Speaker 2: you have shareholders report to and FDA.
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  Speaker 3: We understand your issues with safety.
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  Speaker 2: But at the end of the day, everybody's going to
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  Speaker 2: have to give a little and we're going to have
• 9:52
  Speaker 2: to figure out what problem we're solving. And so early
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  Speaker 2: on it became we don't understand this disease. We don't
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  Speaker 2: know anything about the bio of the disease. And I
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  Speaker 2: write in the book about how precious I could see
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  Speaker 2: my tissue was, like as soon as I was there
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  Speaker 2: for a bone marrow, the scientists were running down to
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  Speaker 2: the room with an Iglu Kohler to get my bone
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  Speaker 2: marrow because they wanted to work on fresh tissue. And
• 10:14
  Speaker 2: I said, well, it's that important, let's go to tissue bank.
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  Speaker 2: And so again you would build these collaborative models where
• 10:21
  Speaker 2: again everybody would benefit. Farmer would help pay for those
• 10:24
  Speaker 2: tissue banks, academic centers could use it, and when we
• 10:28
  Speaker 2: met with FDA, we could give them better information on
• 10:30
  Speaker 2: the new targets for the drugs. And so that's how
• 10:33
  Speaker 2: you created a win. Win is always looking for the
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  Speaker 2: white space of the nonprofit what is everybody doing in
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  Speaker 2: the landscape. And I just had a board meeting with
• 10:42
  Speaker 2: the M and y F yesterday. We're still doing that,
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  Speaker 2: Like you have to know your white space and then
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  Speaker 2: go for.
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  Speaker 1: It right and prioritize that because you can't do everything.
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  Speaker 1: But I do think not only did you make huge
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  Speaker 1: impact in multip loma, but in the nonprofit cancer world too.
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  Speaker 1: I think it became a new kind of model of
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  Speaker 1: how to get this industry, nonprofit public health partnership to
• 11:06
  Speaker 1: change the game. So how many patients does mmrir for
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  Speaker 1: each and support today?
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  Speaker 2: Okay, So this is what's really interesting. We just went
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  Speaker 2: through this on the board call yesterday. Because you would
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  Speaker 2: think for every nonprofit out there, whether it's pancreatic or
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  Speaker 2: glioblastoma or leukemia or malema, that we would have every
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  Speaker 2: patient in the database, right, because why.
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  Speaker 3: Would you not.
• 11:29
  Speaker 2: Why would you not knowing all the things and services
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  Speaker 2: the MMR offers to you. But if you look at
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  Speaker 2: it and say that you put together the patients and
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  Speaker 2: or the caregivers, foundations are anywhere from twenty to forty percent,
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  Speaker 2: that's it.
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  Speaker 3: Like you're not getting every patient.
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  Speaker 2: And so part of when I was writing the book,
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  Speaker 2: I offered to do many zoom calls with the patient foundations.
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  Speaker 2: And the reason I was doing that was to help
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  Speaker 2: raise awareness of these organizations because a lot of patients say,
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  Speaker 2: we have no resources, were stocked, the systems broken, we're confused,
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  Speaker 2: there's no navigation. The truth is there's more than they think,
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  Speaker 2: but the patients don't know the organizations are there. Why
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  Speaker 2: because the doctors don't have time to tell them and
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  Speaker 2: they don't want to get into the whole discussion of
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  Speaker 2: what these nonprofits are. I feel like there's not enough
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  Speaker 2: resources for patients, but even the resources that are available,
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  Speaker 2: patients don't know how to use them.
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  Speaker 1: Well. Is that one of the reasons you form out
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  Speaker 1: of the book like a guide?
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  Speaker 3: Absolutely?
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  Speaker 2: I wrote the book because I felt like I had
• 12:35
  Speaker 2: concierge literally thousands and thousands of patients. Probably if I
• 12:40
  Speaker 2: added up over the decades, and every time I do it,
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  Speaker 2: I ask the same questions.
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  Speaker 3: It doesn't matter what cancer they have.
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  Speaker 2: I ask the same questions, and I go through the
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  Speaker 2: exact same process. And finally I said, this is not
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  Speaker 2: a sustainable model. And in today's world where if you
• 12:56
  Speaker 2: don't know how to empower yourself and ask these questions
• 12:59
  Speaker 2: in today's science, and you're going to miss a lot,
• 13:02
  Speaker 2: like you would have major FOMO if you're not on
• 13:05
  Speaker 2: your game, because a new trial could be opening up
• 13:07
  Speaker 2: and you missed it, and that trial could give you
• 13:10
  Speaker 2: a year until the next drug is out there.
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  Speaker 3: So I felt like I had to.
• 13:14
  Speaker 2: Get the book up quickly because I wanted the patients
• 13:17
  Speaker 2: to benefit from it. But I also hope and wish
• 13:20
  Speaker 2: that the doctors and nurses will just recommend it. It's
• 13:23
  Speaker 2: not hard to do that, but all these things take time.
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  Speaker 2: You would think it would be easy, but it's not
• 13:29
  Speaker 2: that easy.
• 13:30
  Speaker 1: Well, I'm going to quote the book one and two
• 13:32
  Speaker 1: people will develop cancer in their lifetime. If that happens
• 13:36
  Speaker 1: to you or a loved one, there's no need to panic.
• 13:38
  Speaker 1: Your first step should be to take a deep breath.
• 13:41
  Speaker 1: Your body senses your fear it might go into flight,
• 13:45
  Speaker 1: fight or freeze mode, but stop and focus and take
• 13:49
  Speaker 1: your time. And we hear a lot about that, but
• 13:52
  Speaker 1: I think what the message there is, stop breathe, there
• 13:56
  Speaker 1: is something that can be done. To your point, there's
• 13:59
  Speaker 1: a clinical trial, there's another person to talk to. Can
• 14:03
  Speaker 1: you elaborate on how to handle those initial weeks?
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  Speaker 3: Yeah?
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  Speaker 2: I think what happens initially is you get into this
• 14:10
  Speaker 2: mode of you start telling people you have this diagnosis,
• 14:14
  Speaker 2: and everybody starts telling you go to Sloan Cantery and
• 14:17
  Speaker 2: go to Dana Farber or go see this doctor. I
• 14:19
  Speaker 2: had my favorite doctor and I had broad Stay cancer.
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  Speaker 2: And that's not the way to do it. Because every
• 14:25
  Speaker 2: cancer center, every academic center, every community center is good
• 14:30
  Speaker 2: at certain cancers, but.
• 14:31
  Speaker 3: It may not be yours.
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  Speaker 2: If you're in New York City, I'm going to send
• 14:35
  Speaker 2: you to very specific centers for my aluma. They're different
• 14:38
  Speaker 2: than where I'm going to send you for breast cancer
• 14:42
  Speaker 2: or Press state cancer. It just depends on how the
• 14:44
  Speaker 2: center is organized, how they're funding is established, and who
• 14:48
  Speaker 2: are the.
• 14:48
  Speaker 3: Best people there.
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  Speaker 2: So when I was putting the book out, you'll notice
• 14:52
  Speaker 2: the book has three sections. One you've just been diagnosed.
• 14:56
  Speaker 2: The second is now you're running into treatment, it's full
• 14:59
  Speaker 2: blown get your act together. And the third is you've
• 15:02
  Speaker 2: gotten through treatment, now what. So in that very first step,
• 15:06
  Speaker 2: it's we are very lucky in the US. We actually
• 15:09
  Speaker 2: have decent websites that have the name cancer in them.
• 15:13
  Speaker 2: So the National Cancer Institute is Cancer dot gov, ASCO,
• 15:18
  Speaker 2: which is the American side of Peltogoncology, great great website
• 15:22
  Speaker 2: cancer dot net and ACS cancer dot org. So you
• 15:26
  Speaker 2: can't go wrong in this country going to cancer dot something.
• 15:30
  Speaker 3: But immediately after you do that, make sure.
• 15:33
  Speaker 2: You identify the disease foundation that's available to you. And
• 15:37
  Speaker 2: that's just as simple as putting in Multiple Myeloma and
• 15:41
  Speaker 2: Foundation or lung cancer and Foundation and then looking to
• 15:46
  Speaker 2: see which organizations are the best. But I often tell
• 15:49
  Speaker 2: patients too, is that when you're looking at foundations, there's
• 15:53
  Speaker 2: several areas that they tend to work on research, education,
• 15:57
  Speaker 2: or policy. And so if you want to be a
• 16:00
  Speaker 2: patient who's an advocate or a donor or anything like that,
• 16:04
  Speaker 2: support the organization that's doing what you really care about.
• 16:07
  Speaker 2: It could be researched, it could be any of those,
• 16:09
  Speaker 2: but make sure you understand what their mission is, and
• 16:12
  Speaker 2: then you get your second opinion and know your insurance.
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  Speaker 1: I just did want to know in ninety five you
• 16:17
  Speaker 1: drove to Borders Books to buy medical books right there?
• 16:20
  Speaker 1: Really wasn't you know? You didn't have the benefit of that.
• 16:24
  Speaker 1: The point you made about the internet, how has it
• 16:27
  Speaker 1: made the diagnosis and treatment easier? But also what are
• 16:31
  Speaker 1: the pitfalls? What should we watch out for? I know
• 16:35
  Speaker 1: for my own experience, one of the things people said
• 16:37
  Speaker 1: is don't read the fine print on the studies and
• 16:42
  Speaker 1: how long one might live and all of that. But
• 16:44
  Speaker 1: what are your thoughts on all of that.
• 16:45
  Speaker 2: I think it's really hard to look at some of
• 16:48
  Speaker 2: the data, and sometimes a lot of the data you're
• 16:51
  Speaker 2: looking at is outdated. So what I often tell people
• 16:54
  Speaker 2: is if you don't want to go down that path,
• 16:57
  Speaker 2: that's okay, But know when the medical meeting are happening. Right, so,
• 17:01
  Speaker 2: pretty soon the American Society of Clinical Oncology is happening.
• 17:06
  Speaker 2: Eventually you'll see the San Antonio Breast Conference happening, and
• 17:10
  Speaker 2: in December every year you will see the American Society
• 17:12
  Speaker 2: of Humatology. You don't need to be an expert. You
• 17:16
  Speaker 2: don't need to attend these meetings. You just need to
• 17:19
  Speaker 2: know they're happening because you want to put in to
• 17:22
  Speaker 2: your web system ASCO twenty twenty four in your cancer
• 17:27
  Speaker 2: and when ascoes happening, there's going to be some amazing
• 17:31
  Speaker 2: information that comes up. It will be current, and I
• 17:35
  Speaker 2: think at that point it's important for you to see
• 17:37
  Speaker 2: what's going on in the field and at least know
• 17:40
  Speaker 2: about it and go talk to your doctor about it. Again,
• 17:42
  Speaker 2: abstracts are not easy for patients to read, but if
• 17:46
  Speaker 2: you at least can understand the basics of them, they're
• 17:49
  Speaker 2: worth talking with your doctor about.
• 17:51
  Speaker 1: You started to say what some of the key steps are.
• 17:53
  Speaker 1: Can you walk us through how you make your action plan?
• 17:57
  Speaker 1: What are step one to twelve? I know you've got
• 18:00
  Speaker 1: an interesting approach. You discuss the teas, buying time, past treatments, trials, tribulations, traditions.
• 18:07
  Speaker 1: How do you plan and then take care of yourself
• 18:10
  Speaker 1: during this process?
• 18:11
  Speaker 2: In the first part, I set you up with what
• 18:13
  Speaker 2: I consider to be important. Again, there was always the
• 18:17
  Speaker 2: physical part of managing cancer, which is how do I
• 18:21
  Speaker 2: get this done?
• 18:21
  Speaker 3: How do I get to the appointments, how do I
• 18:23
  Speaker 3: handle the doctors right?
• 18:24
  Speaker 2: But what I also tell you in that first part
• 18:26
  Speaker 2: is know your needs and ones, and.
• 18:29
  Speaker 3: So that is actually really important.
• 18:31
  Speaker 2: When you're talking about your needs, It's like, oh, my gosh,
• 18:34
  Speaker 2: who's going to feed the kids, who's going to pick
• 18:36
  Speaker 2: the kids up from school? He's taking care of my parents,
• 18:38
  Speaker 2: who's walking the dogs? Like these are immediate things, like
• 18:40
  Speaker 2: you're like, I'm going to be sick. How am I
• 18:42
  Speaker 2: going to do this? Those are your needs. But the
• 18:45
  Speaker 2: second part always comes up when I was conciering your
• 18:48
  Speaker 2: coaching patients, which was I don't want to stop working.
• 18:52
  Speaker 2: A lot of people just say I actually don'tant anybody
• 18:54
  Speaker 2: to know. I just want to keep going. Or it
• 18:56
  Speaker 2: could be I'm working on something really important and I
• 18:59
  Speaker 2: don't want to away from it right now. For other people,
• 19:01
  Speaker 2: could be I want to travel.
• 19:03
  Speaker 1: Were you able to do that during your situation?
• 19:06
  Speaker 2: Right?
• 19:06
  Speaker 1: You were? You had a great support system at Searle.
• 19:09
  Speaker 2: I did, And remember it was then that I sat
• 19:13
  Speaker 2: down and I knew my needs were, oh my god,
• 19:15
  Speaker 2: like what am I going to do about my job?
• 19:17
  Speaker 2: What are we going to do about insurance? But then
• 19:19
  Speaker 2: my want was I really wanted to have another child.
• 19:21
  Speaker 2: I wanted to keep moving in that direction, and that
• 19:24
  Speaker 2: became a huge important part for me, and as I
• 19:28
  Speaker 2: say in the book, like that was my north star
• 19:31
  Speaker 2: was building our family and then making sure we kept
• 19:33
  Speaker 2: building those family memories.
• 19:35
  Speaker 3: So that part of the needs in once.
• 19:38
  Speaker 2: Like I'm not really a very touchy feeling person, but
• 19:41
  Speaker 2: I actually found by reading the journals back that was
• 19:44
  Speaker 2: an important part of making sure you had something to
• 19:48
  Speaker 2: live for.
• 19:49
  Speaker 3: I think that's a really critical thing.
• 19:51
  Speaker 2: Like knowing what you really want to live for, what's
• 19:54
  Speaker 2: going to make you get up every morning and get
• 19:56
  Speaker 2: through these treatments is critical. Okay, Then the second part
• 19:59
  Speaker 2: is is test treatment and trials. So the issue I
• 20:04
  Speaker 2: tell everybody on the diagnostic tests your cancer, the specificity
• 20:09
  Speaker 2: of your cancer is always going to be different and
• 20:12
  Speaker 2: it's going to make you different. So when you're looking
• 20:15
  Speaker 2: at all those abstracts, there's often something about you that
• 20:18
  Speaker 2: makes you different that hopefully will give you some hope,
• 20:21
  Speaker 2: but you need to understand what it is. You need
• 20:23
  Speaker 2: to know your genomics, biomarker testing, great imaging work, and
• 20:28
  Speaker 2: often the insurance companies will not cover it. You have
• 20:33
  Speaker 2: to go in and know the most current tests and
• 20:36
  Speaker 2: then call your insurance company and say you want it
• 20:38
  Speaker 2: and your doctor has to go to bat Ford once
• 20:41
  Speaker 2: you know that specificity of your cancer. I talk about
• 20:44
  Speaker 2: this in the book like I was a certain translocation
• 20:46
  Speaker 2: four fourteen. It was one of the most fatal forms
• 20:50
  Speaker 2: of multiple my aluma. It broke my heart when I
• 20:52
  Speaker 2: realized that I was crushed, but knowing I was four
• 20:56
  Speaker 2: to fourteen actually changed my regimen down the road and
• 20:59
  Speaker 2: could have helped save in my life.
• 21:01
  Speaker 3: So I stayed.
• 21:02
  Speaker 2: I read to get the test done and then moved
• 21:04
  Speaker 2: to the center where you know they're focused on your
• 21:07
  Speaker 2: kind of cancer and make sure that you get the
• 21:11
  Speaker 2: absolute best treatment in that what's the standard of care,
• 21:14
  Speaker 2: but what's even better. And I say that again by
• 21:16
  Speaker 2: looking at the medical meetings and what's happening in them.
• 21:19
  Speaker 2: That's kind of where you are when you're newly diagnosed.
• 21:22
  Speaker 2: But in today's world, there's some that are even moving
• 21:24
  Speaker 2: toward trials earlier because we're all trying to move the
• 21:27
  Speaker 2: best therapies upfront.
• 21:29
  Speaker 3: So get through this well.
• 21:31
  Speaker 2: I think, first of all, the reason I wrote the
• 21:33
  Speaker 2: book the way I did was to help people to
• 21:35
  Speaker 2: know I had everything going for me. I had a
• 21:38
  Speaker 2: great boss, a great husband, kids, my friends, and I
• 21:41
  Speaker 2: still got it wrong, Like I still messed up a lot,
• 21:45
  Speaker 2: even on breast cancer. When you would have thought, oh,
• 21:46
  Speaker 2: she's already been throwed in my aloma, now we would have.
• 21:48
  Speaker 3: To breast canser. I screwed up.
• 21:51
  Speaker 2: I ended up paying complete out of pocket for surgical work.
• 21:55
  Speaker 3: Because I didn't know. I thought I my doctor was
• 21:57
  Speaker 3: in network.
• 21:58
  Speaker 1: He was not.
• 21:59
  Speaker 2: So I it that way so that people would understand
• 22:02
  Speaker 2: if you feel like you're messing up, it's not you,
• 22:05
  Speaker 2: it's the system.
• 22:06
  Speaker 3: It's no matter how smart you are, it's still really hard.
• 22:09
  Speaker 2: The second part is that even though I had a
• 22:12
  Speaker 2: large group around me, the truth is if you have
• 22:15
  Speaker 2: one or two, you're good. And the other is there
• 22:19
  Speaker 2: are people available to help you and you're not finding them.
• 22:23
  Speaker 2: So an example would be, we have full time nurse
• 22:26
  Speaker 2: navigators at the Maylama Research Foundation. We are not alone.
• 22:30
  Speaker 2: Almost every organization is starting to build them. And now
• 22:34
  Speaker 2: in today's world, Medicare is now covering navigation, so every
• 22:38
  Speaker 2: community hospital and academic center is building navigation programs. You
• 22:43
  Speaker 2: have to keep asking for these people and get them
• 22:46
  Speaker 2: assigned to you, whether it's for social work or other areas.
• 22:49
  Speaker 2: They are available but you have to be a squeaky
• 22:53
  Speaker 2: wheel and have your family and friends support you. But
• 22:56
  Speaker 2: where you see a gap, make sure you're talking to
• 22:59
  Speaker 2: the hospital, go to the doctor and getting exactly what
• 23:02
  Speaker 2: you need, or going to outside nonprofit resources if you
• 23:06
  Speaker 2: need to as well.
• 23:14
  Speaker 1: Now I want to shift into a section I'm calling
• 23:17
  Speaker 1: so What's it all mean? Where we hear about your
• 23:19
  Speaker 1: work and action and how it's playing out in the
• 23:21
  Speaker 1: real world. My wife and i've been through this ourselves
• 23:30
  Speaker 1: recently to her journey, and we do say this for
• 23:33
  Speaker 1: a lot of people that cancer is a gift wrapped
• 23:35
  Speaker 1: in barbed wire, which is a quote that someone else
• 23:39
  Speaker 1: gave my wife. She's fighting cancer too. What ways does
• 23:42
  Speaker 1: your experience with cancer align with that's saying?
• 23:46
  Speaker 2: So what I found, and again the beauty of writing
• 23:49
  Speaker 2: the book was in order to go back all of
• 23:51
  Speaker 2: those years, I had to bring out the journals that
• 23:55
  Speaker 2: I'd started writing. The very first one was I left
• 23:58
  Speaker 2: that Border's bookstore. As you discussed in one hand, I
• 24:01
  Speaker 2: had a calendar which was going to be my life
• 24:04
  Speaker 2: moving forward with my husband, which was just basically going
• 24:06
  Speaker 2: to be doctor's appointments and doing all the research and
• 24:10
  Speaker 2: in the secondhand was a journal I was going to
• 24:12
  Speaker 2: write for Nicole, who was eighteen months old, and I
• 24:15
  Speaker 2: was only writing it because I had three years to
• 24:17
  Speaker 2: live and I wanted to document our moments together, what
• 24:21
  Speaker 2: was going to be important to the two of us.
• 24:23
  Speaker 2: And again I talk about this in the book, which
• 24:26
  Speaker 2: by writing to her, I really started to understand my
• 24:28
  Speaker 2: north star, which was I wanted her to have a sibling.
• 24:31
  Speaker 2: I wanted us to keep building memories, and I wanted
• 24:33
  Speaker 2: to go on as long as we could. But the
• 24:36
  Speaker 2: more I kept reading the book, the more I realized
• 24:40
  Speaker 2: how furious I was at.
• 24:42
  Speaker 3: The medical system.
• 24:43
  Speaker 2: I was pissed, and as a patient sitting in all
• 24:47
  Speaker 2: of these rooms, I can't tell you how many times
• 24:49
  Speaker 2: I would look at the farmer company, the academic doctors,
• 24:52
  Speaker 2: all of whom I had tremendous respect for, and I
• 24:56
  Speaker 2: would hear the conversation. I would go, if patients could
• 24:59
  Speaker 2: hear you, now, we'd be cringing. We would just be cringing.
• 25:03
  Speaker 2: And so I was pissed that we couldn't do better,
• 25:07
  Speaker 2: we couldn't collaborate more, we couldn't move drug development faster,
• 25:11
  Speaker 2: and so I created this kind of anger about me.
• 25:14
  Speaker 3: I think and fearless mode.
• 25:17
  Speaker 2: Which was like, I'm going to be in every meeting
• 25:19
  Speaker 2: pushing everybody's bot loops.
• 25:20
  Speaker 3: That's what I'm going to do. I'm going to push
• 25:21
  Speaker 3: every button I can.
• 25:22
  Speaker 2: I'm going to try to get every drug out there
• 25:24
  Speaker 2: as fast as we possibly can. That's great to a
• 25:27
  Speaker 2: certain degree when you're running a company. I think I
• 25:30
  Speaker 2: could have softened the edges quite a bit, But looking back,
• 25:33
  Speaker 2: I don't know. Maybe I wouldn't have gotten as much
• 25:35
  Speaker 2: done if I had been softer. It's hard to bring
• 25:39
  Speaker 2: that home, like when you're so frustrated at what you're
• 25:42
  Speaker 2: seeing and so many patients are dying around you, and
• 25:46
  Speaker 2: you're coming home to make dinner. I can remember times
• 25:49
  Speaker 2: where I was up in my study and it was
• 25:51
  Speaker 2: a Memorial Day weekend and these two beautiful young women
• 25:55
  Speaker 2: were calling me. They knew it was time to say
• 25:57
  Speaker 2: goodbye to their mom, but they didn't know how, and
• 26:00
  Speaker 2: they wanted to talk with me about it, And of
• 26:02
  Speaker 2: course I take all these calls. I had no boundaries,
• 26:05
  Speaker 2: and then I'm like doing all this, I'm heartbroken for them,
• 26:08
  Speaker 2: for their mom, for everybody, and it's like run downstairs
• 26:10
  Speaker 2: and hey, we haven't hot dogs or hamburgers, you know,
• 26:13
  Speaker 2: like it's really hard to run your family like that.
• 26:16
  Speaker 2: And so I think, moving forward, my recommendation to everybody
• 26:21
  Speaker 2: is don't wait till you're sixty six and writing a
• 26:23
  Speaker 2: book and going back and reading your journals to realize
• 26:26
  Speaker 2: you made a lot of mistakes along the way. Instead
• 26:30
  Speaker 2: acknowledge the fact that your faced with a tough illness,
• 26:34
  Speaker 2: that you have amazing family and friends doing the absolute
• 26:38
  Speaker 2: best they can to help you. That you need to
• 26:40
  Speaker 2: give them very good direction. You need to be grateful
• 26:43
  Speaker 2: for everything they're providing, and in return, they need to
• 26:46
  Speaker 2: be honest with you.
• 26:47
  Speaker 1: Well, you do make a point in the book about
• 26:50
  Speaker 1: not to be shy. This is your life. You do
• 26:52
  Speaker 1: have to ask for what you need and want to
• 26:54
  Speaker 1: get it. And I wonder if this disease, for a
• 26:57
  Speaker 1: lot of people teaches that.
• 26:58
  Speaker 2: Well, the beauty of it is there's moments where you're
• 27:01
  Speaker 2: just sitting there saying, I can't believe I'm seeing this,
• 27:05
  Speaker 2: Like I just can't believe this just happened, you Field
• 27:08
  Speaker 2: in the book, where I'm sitting there thinking, Okay, David's
• 27:11
  Speaker 2: now born David in Nicole. My whole job was to
• 27:14
  Speaker 2: keep them together and now all of a sudden last weekend,
• 27:17
  Speaker 2: he gets engaged. Who's flying home because she would never
• 27:21
  Speaker 2: miss this moment is a sister and she's doing everything
• 27:24
  Speaker 2: with him and for him.
• 27:25
  Speaker 3: And you sit there and go, m yep, this was
• 27:28
  Speaker 3: kind of my north store. And you know what it all?
• 27:31
  Speaker 3: It worked, It really did work.
• 27:33
  Speaker 2: And at the end, I can say that everything that
• 27:36
  Speaker 2: I was dreaming about and everything I was wishing for
• 27:39
  Speaker 2: did come about. But I think part of it was
• 27:42
  Speaker 2: I learned by writing the book that life is it's
• 27:46
  Speaker 2: all about relationships. You can beat your cancer, but if
• 27:49
  Speaker 2: you're not sharing those moments with your family because somehow
• 27:54
  Speaker 2: resentment was built, or something negative happened, or somebody just
• 27:57
  Speaker 2: got frustrated with you, or you're trying.
• 27:59
  Speaker 1: To protect them. I think they can handle it.
• 28:02
  Speaker 3: It all depends on the age.
• 28:03
  Speaker 2: But I always learned by talking with counselors, tell your
• 28:08
  Speaker 2: kids exactly what they need to know, and don't tell
• 28:12
  Speaker 2: them anymore. If they have no questions, they're going to
• 28:15
  Speaker 2: come back to you with more questions.
• 28:17
  Speaker 1: I guess, like you said, you're trying to give a playbook,
• 28:20
  Speaker 1: So let's do that to this audience. I've got pharma
• 28:22
  Speaker 1: and patient advocates. I got a wide range of people
• 28:25
  Speaker 1: who listen to this podcast. What do you want them
• 28:27
  Speaker 1: to do? Obviously by the book, but what else do
• 28:31
  Speaker 1: you want me?
• 28:32
  Speaker 3: You know, it's really funny.
• 28:33
  Speaker 2: I would love for the book to become part of
• 28:35
  Speaker 2: the medical training. I feel like one of the best
• 28:38
  Speaker 2: things a pharmaceutical company can do is to say, Kathy,
• 28:42
  Speaker 2: will you come in and we'll do a fireside chat
• 28:44
  Speaker 2: on this and.
• 28:45
  Speaker 3: By the way, we're going to have our employees here.
• 28:47
  Speaker 2: What you have to say, because I think pharma always
• 28:51
  Speaker 2: says we put the patient at the center.
• 28:52
  Speaker 3: But they don't really know what that means.
• 28:55
  Speaker 2: And I think the more they can have people like
• 28:58
  Speaker 2: me that are brutally honest of what it's like to
• 29:00
  Speaker 2: be a patient and the regrets we've made, I think
• 29:03
  Speaker 2: that's incredibly helpful. In terms of the nurses, it's so funny.
• 29:08
  Speaker 2: I would say the nurses are the ones that have
• 29:10
  Speaker 2: called me the most out of pure frustration to say.
• 29:14
  Speaker 2: The doctors don't have time to refer your book, but
• 29:17
  Speaker 2: we do, and we're trying to figure out how to
• 29:19
  Speaker 2: work with you because we want you to come out
• 29:21
  Speaker 2: to local meetings and work with all of our patients
• 29:24
  Speaker 2: because we're so passionate about it, and so I'm in
• 29:26
  Speaker 2: discussions with them like trying to make sure I'm getting
• 29:28
  Speaker 2: to the major medical meetings like o ANDS or HBC
• 29:31
  Speaker 2: and things like that, just to make sure that they
• 29:34
  Speaker 2: are aware of the books out there, but trying to
• 29:36
  Speaker 2: do it in a way that's not so labor intensive
• 29:40
  Speaker 2: that we don't make a big difference. And then my
• 29:42
  Speaker 2: dream would be that the book became part of the
• 29:44
  Speaker 2: medical school curriculum that a't some point along the way
• 29:48
  Speaker 2: doctors are at least encouraged to understand this. The reason
• 29:52
  Speaker 2: I say this is because I think there's two elements
• 29:55
  Speaker 2: to the broken system. One is the system is broken
• 29:58
  Speaker 2: as I saw it in drug develops and finding cures
• 30:01
  Speaker 2: for patients. There's not nearly enough collaboration that we all
• 30:05
  Speaker 2: love to see. And it's not bad people or bad intent.
• 30:09
  Speaker 2: It's just the incentives don't align and the system stinks
• 30:13
  Speaker 2: in terms of giving patients what they need. And I
• 30:16
  Speaker 2: think the second area that it's broken is directly to
• 30:19
  Speaker 2: the patient. You can't expect a patient to be able
• 30:23
  Speaker 2: to navigate all this. It's virtually impossible to say, Okay,
• 30:27
  Speaker 2: now I'm moving from a diagnosis to am I going
• 30:30
  Speaker 2: to a medical oncologist or to a hematologist oncologist. Then
• 30:34
  Speaker 2: I'm moving on to imaging and pathology and PT and surgery.
• 30:37
  Speaker 2: And it's overwhelming and the system just doesn't work for us.
• 30:42
  Speaker 2: And I think the more that people understand where it's
• 30:44
  Speaker 2: broken and how we fix it, the better off we're
• 30:47
  Speaker 2: going to be.
• 30:47
  Speaker 1: So, you know, how can they take the twelve steps
• 30:50
  Speaker 1: and implement them into their lives?
• 30:52
  Speaker 2: Yeah, I think if you follow the twelve steps, there's
• 30:54
  Speaker 2: no doubt in my mind, you will extend your life.
• 30:57
  Speaker 2: If you extend your life and you learn how to
• 30:59
  Speaker 2: do it, you're going to buy yourself time, and that
• 31:02
  Speaker 2: time you buy may deliver the next drug. And that's
• 31:05
  Speaker 2: the game you have to play.
• 31:07
  Speaker 1: Well, that's that's the mic drop. I'd love to end there,
• 31:09
  Speaker 1: but I would be remiss not to say. How can
• 31:11
  Speaker 1: our listeners support the MMRF. Oh?
• 31:15
  Speaker 2: Yes, actually go to the foundation itself multiplemiyluma dot org
• 31:20
  Speaker 2: and you can always support them financially or get involved
• 31:23
  Speaker 2: with the organization in any way as well.
• 31:25
  Speaker 1: Are there chapters and locations all over the place.
• 31:29
  Speaker 2: Wisely and intentionally, the MMRS did not do chapters. Instead's
• 31:34
  Speaker 2: a research foundation. When I was talking earlier, like every
• 31:37
  Speaker 2: organization has their area of strength, the Myeluma Research Foundation
• 31:41
  Speaker 2: really does drug development, so we did not do chapters,
• 31:44
  Speaker 2: but of course we know all the support groups. I
• 31:47
  Speaker 2: think the beauty of the MMRF now is this ability
• 31:50
  Speaker 2: to have navigation done for every patient from the moment
• 31:53
  Speaker 2: of diagnosis all the way through clinical trials with amazing
• 31:57
  Speaker 2: teams while they continue to focus on this new world
• 32:00
  Speaker 2: of ammunotherapy that is exploding in myeloma and potentially curative,
• 32:06
  Speaker 2: and people don't know when to go to CARTI or
• 32:09
  Speaker 2: when to go to a bispecific or ADC, and the
• 32:12
  Speaker 2: MMRF has to stay on top of that and make
• 32:14
  Speaker 2: sure we're answering those tough questions.
• 32:16
  Speaker 1: I agree with you that amminnotherapy is absolutely an exciting
• 32:20
  Speaker 1: new frontier. Do you ever think we'll cure it?
• 32:23
  Speaker 3: Oh?
• 32:23
  Speaker 2: Absolutely absolutely. I think there's probably segments of mieloma patients
• 32:28
  Speaker 2: that we're already curing. And I think between the drugs
• 32:31
  Speaker 2: we have today, the drugs that are in the pipeline,
• 32:36
  Speaker 2: if we can learn how to combine them, sequence them,
• 32:39
  Speaker 2: dohst them, I think there's no doubt we'll continue to
• 32:42
  Speaker 2: cure myeloma patients.
• 32:44
  Speaker 3: It's going to be a process, but I think we're
• 32:46
  Speaker 3: already on our way.
• 32:48
  Speaker 1: Well you're the living example, right you said there was
• 32:50
  Speaker 1: three years and you have followed your north star. Sounds
• 32:53
  Speaker 1: like there's an engagement that happens. So these milestones keep
• 32:57
  Speaker 1: happening and you're still here for them. God love you anyway,
• 33:00
  Speaker 1: Thanks for being here. I have to say, listening to
• 33:03
  Speaker 1: how you did it, I've always known you were a
• 33:06
  Speaker 1: hard driver. Looking from the outside in, I do think
• 33:09
  Speaker 1: that is what it takes to change a paradigm, and
• 33:13
  Speaker 1: that's what you're changing here. That is unusual in the world.
• 33:17
  Speaker 1: So thanks for doing that, and I hope this conversation
• 33:20
  Speaker 1: in the book inspires many others to do that for
• 33:23
  Speaker 1: not just multiple my loma, but for many other cancers.
• 33:26
  Speaker 3: So thanks, thank you, thank you so much.
• 33:29
  Speaker 2: It was really nice talking with you.
• 33:35
  Speaker 1: Hey, everyone, thanks for listening in today. The Get Real
• 33:38
  Speaker 1: with the Chairman podcast is a production of real chemistry.
• 33:42
  Speaker 1: I want to thank my team, led by executive producer
• 33:44
  Speaker 1: Kate Voss, audio engineer Nick Murphy, and composer Matt Lipkins,
• 33:50
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