An estimated 1.6 million people in the U.S. are living with or in remission from blood cancer. Many of these people are children. Today, thanks to the work of clinicians and researchers like Dr. Andy Kolb of the Leukemia and Lymphoma Society, those patients are living longer and undergoing less toxic treatments. In this episode, Dr. Kolb joins Chuck and Alicia to explain how his organization is improving the lives of patients with leukemia, lymphoma, myeloma, and other blood cancers.
Downloadable transcript here
TRANSCRIPT:
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Dr. Alicia Morgans: This is The Good News About Cancer. I'm Dr. Alicia Morgans.
Dr. Charles Ryan: And I'm Dr. Chuck Ryan.
Alicia: We're oncologists, and we've spent our careers working to understand cancer. We believe that there's more progress now in research and treatment than there ever has been, and we're here to share that with you.
Chuck: In each episode of the show, we talk to one of our colleagues about a new development in cancer treatment or diagnosis. We'll break down what's new, why it matters, and how it points the way forward.
Dr. Andy Kolb: We've seen precision medicine grow across the spectrum. We've seen immunotherapy, cellular immunotherapies, and we've seen survival rates for diseases like leukemia and lymphoma steadily increase year after year. So there is a lot of great stuff to talk about.
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Alicia: So, Chuck, let's talk a little bit about blood cancers. These may be a little more difficult to kind of wrap your mind around than something like breast cancer or prostate cancer or lung cancer, that really develops in an organ. And we all know what this looks like and, and how those things can be really, really challenging.
Chuck: You know, we all know what a lung is and what a liver is and what a breast is. And so when cancers develop in those organs, we kind of have a clear sense of what's– where it's going on. But we have less of a sense about myeloid cells and lymph cells and blood cells.
And so that's what blood cancers are. They're basically cancers that occur in the lymphatic system, the blood development system – they make your red blood cells, they make your white blood cells. And they're not rare cancers. It's estimated that about 1.6 million people in the United States are living with or in remission from leukemia, lymphoma, myeloma, or one of the other myeloid cancers – or blood cancers, as we call them.
So there's a lot of us walking around with them. And these cancers also can affect children. It's estimated that about 55,000 children and adolescents younger than the age of 20 in the US are living with or in remission from one of these cancers. So it's not as rare as people think.
Alicia: Yeah. You know, these are some of the most common cancers that kids get. And I have family members who have been treated for things like leukemia. And one of the most amazing things, one of the most important good news stories, I think, around cancer, is that these cancers – leukemias, lymphomas, that used to kill little children on a regular basis and there wasn't anything we could do – these are now highly curable cancers.
And it's all because of the work that oncologists that study these diseases and treat children have been able to accomplish and make this terrible thing into one of the best good news stories that we have.
Chuck: One of the most searing memories I have from my childhood is when I was in third grade, I was playing over at my friend Tom Gibson's house, and we were playing in the driveway and my mom came up and I thought, this is weird that my mom is here.
And she told me –and started to cry – that my cousin David, who was pretty much my exact same age, had just been diagnosed with cancer.
Well, it turns out that David – we were in third grade – David had a form of blood cancer called Hodgkin's Lymphoma – or called Hodgkin's Disease – and we thought things were going to go very, very poorly for David. But he had treatment, and you know, within a year he had completed the treatment and was cured.
So for me as a kid, it was one of those first moments learning about cancer, but it was also the one of the first moments of learning that people get cured from cancer. And David is alive and well, I think in its mid-fifties now. And uh, David, if you're out there, I hope you're doing well.
Alicia: So let's talk to Dr. Andy Kolb. He's a world-renowned pediatric hematologist, oncologist and a researcher. He's also the president and chief executive officer of the Leukemia and Lymphoma Society.
He's taken care of many, many children with these kinds of diseases, and he also heads a society that continues to invest in research and advocacy to make sure that progress continues for these children, and certainly for the rest of us, as well.
Let's hear our conversation with Dr. Andy Kolb.
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Alicia: Andy, it's so nice to have you on. I wonder if you could share just a little bit of background so that everyone is on the same page.
First, what is the Leukemia Lymphoma Society, or LLS, and what role does it play in helping us have more good news when it comes to these blood-type cancers?
And secondly, how did Andy Kolb get involved? What drives you and what brings you to the table in this really important way?
Andy: Thank you, Alicia. The Leukemia and Lymphoma Society is the world's largest volunteer healthcare organization dedicated to blood cancers. We've been around for 75 years. Our mission is to cure blood cancer and improve the quality of life of patients and their families.
And we do that through research, we do that through patient support and education, and we do that for advocacy, particularly advocacy for policies that help patients access and afford the care that they deserve.
As far as my personal history, I'm a pediatric oncologist. I trained at the same institution with Chuck, many years ago. We lived in the same building and our kids played together. But I am a pediatric oncologist and I've focused my entire career on blood cancers, particularly some of the more difficult to treat leukemias.
And I have been a volunteer for the Leukemia Lymphoma Society since 2007. I started doing LLS events shortly after my wife was diagnosed with lymphoma.
And most recently I've been a funded research scientist helping LLS to develop programs more focused on developing therapies for children. And then for the last two years, I've had the privilege of serving as the president and CEO.
Chuck: From your vantage point as CEO of this organization that's been doing great work for now, I think 75 years or more, tell us what's the good news coming out of the world of leukemia and lymphoma?
Andy: Yeah. I think in our world, in the world of blood cancer, we have seen just a tremendous amount of progress.
We've seen precision medicine grow across the spectrum. We've seen immunotherapy, cellular immunotherapies, and we've seen survival rates for diseases like leukemia and lymphoma steadily increase year after year. So there is a lot of great stuff to talk about.
Alicia: So, Andy, can you just set the stage for us, really kind of the 1000 foot view. What are some of the general types of blood cancers and who do they affect? How dangerous are they? Are these things that are really important for us to recognize and treat quickly? So that we understand some of the progress that has been made and the good news when it comes to blood cancers.
Andy: So blood cancers can be divided up into a few big categories: leukemias, lymphomas, myelomas, and then there are some of the more indolent or or pre-blood cancer conditions that are out there. All of those conditions can be divided up into many, many different diseases. But leukemia, lymphoma, myeloma, those are some of the major categories.
Blood cancers can affect people at any age. There are children that are born with leukemia, and there are older adults who have leukemia, lymphomas and myeloma. Leukemias and lymphomas, they do have very good cure rates, but can be difficult to treat in many patients. Myeloma survival rates are improving, but still many patients die of their myeloma.
So these are very serious types of cancers that can be very difficult to treat, and often the treatment can be quite debilitating. Which is why we're so excited about the progress that we've been making, particularly with precision medicine and immune therapies that allow us to reduce exposure to some of those toxic, more toxic chemotherapy drugs.
Alicia: I wonder if you could share sort of the history behind that. You know, where were we before the advent of these multi-chemotherapy combination strategies and ways that we attack these cancers from many angles at once– where were we before, and where are we now with these childhood leukemias?
Andy: You know, children with leukemia were some of the first patients to receive chemotherapy back in the forties and fifties. But it really wasn't until the 1970s when we started to effectively combine chemotherapies that we were able to see survival rates increase.
And this is for children with acute lymphoblastic leukemia, the more common type of leukemia that children get. And then the eighties and nineties with more aggressive therapy with chemotherapy to prevent relapse in their spinal fluid and the tissues around their brain, we saw survival rates approaching 80-90% for acute lymphoblastic leukemia.
And during my career, we've started to dial back a little bit, to identify the patients who need less therapy, and with that we're able to preserve survival rates. And I think one of the great things to talk about is that a drug called blinatumomab was just to prove this year for children and adults with acute lymphoblastic leukemia. And it was approved, in part, because of a trial done in children that showed that it improved overall survival.
This is an antibody that brings the immune system to the cancer cell and tells the immune system to kill the cancer cell. But you know what it has also done? It's allowed us to spare children even more chemotherapy and more steroids, which have long-term side effects.
This drug isn't always easy to give, but as far as we know, the long-term side effects are much more limited. So we've improved survival and we've decreased the cumulative toxicity of the therapy. Just wonderful, wonderful progress.
Chuck: So you have a publication that the LLS puts out citing a bold goal for your organization. And in that publication, you estimate that there have been over 21 million years of lives saved with progress against hematologic or blood cancers. Tell us how you reached that number and give us a sense of where that data is coming from. Not only how you collected the data, but is it predominantly curing children, is it predominantly curing across the board? Where are the greatest areas of progress?
Andy: So what we did is we went back and looked at the annual U.S. population each year, the incidence of cancer that's expected each year, and the survival rates. And then we just did the math. How many people are alive each year following a diagnosis of a blood cancer? And those that are surviving are alive because of therapies that have been created.
And, you know, one of the biggest inflections in that curve is in the late nineties when we started using rituximab, which is another monoclonal antibody for lymphoma. Lymphoma being one of the more common blood cancers and occurring in young and older adults, young children through adulthood. So any improvement in survival in lymphoma is going to have a big effect on the number of years of life that are saved. So that's a huge inflection point.
But we also see an inflection point with chronic myelogenous leukemia. I hate to date us, Chuck, but when we were in training, CML was not curable. And if it was, it was after interferon, which is basically flu in a bottle that you would have to take every day and a bone marrow transplant, which at the time was not as used as widely as it is today.
In the late nineties, we started using a drug called Gleevec for CML. Today, if you're diagnosed with CML, your chance of survival is the same as if you didn't have the disease. You won't be cured. The likelihood is you'll never be cured of your CML, but your chances of survival is the same as everybody else.
Chuck: So cure is you get a treatment, the treatment is finished, you're no longer on the treatment, and your cancer is gone.
Management of chronic disease is, you know, with CML, correct me if I'm wrong, you're taking a pill a day and you're being monitored, and the cancer is still there, such that if you stop the medication, it would probably come back.
Andy: Yeah, and I think a great example, I'll, I'll use my wife as an example. She was diagnosed with follicular lymphoma in 2007. At the time, the textbook said it's an incurable form of lymphoma, which is a true statement, but 17 years later she's alive. She's doing great. It's come back a few times, but she continues to get therapy that knocks it down again. Her doctor has told us many times: she will die with her lymphoma, but not from her lymphoma.
Chuck: This chronic disease model is something that we've talked about for a generation, of turning cancer into a chronic disease, and your wife is a good example, and CML is a good example of– it's already happened across many, many cancers. I would argue that prostate cancer, the disease I treat – that we treat – is another good model of that, for the most part, although we still have some work ahead.
Andy: Yeah. You know, cure is a lofty goal, but we can gain a lot of years of life with very effective therapies. And for diseases like CML, some of the lymphomas, there are a lot more options out there today than there were 20 years ago.
Alicia: I want to ask about one other type of leukemia. I remember when I was a fellow, there was a young woman, she was I think in her mid to late forties. She had twin girls who were nearly out of high school. And she was diagnosed with a form of leukemia called acute promyelocytic leukemia.
She went through her treatment, she was cured of her cancer, and she, she sent me letters over time, showing me that her twins graduated and everybody's happy and they're doing so well, and she went back to work after she went through a treatment, and it was just such an inspiring story.
Andy: I'm really glad you mentioned acute acute promyelocytic leukemia, and I'll just call it APL 'cause it's easier to say, but this is a very unique subset of leukemia that is characterized by a specific mutation. A piece of one chromosome breaks off and a piece of another chromosome breaks off. They come together, they form a brand new gene, and that gene is what drives the leukemia cell.
We can actually, with drugs, target both ends of that molecule and completely shut the leukemic process down. It does cause the cells to mature, which can cause some side effects in the short run, but in the long run, in recent studies in children and adults, survival’s almost a hundred percent with a completely chemo-free regimen.
And it's really quite a remarkable response and remarkable progress for leukemia. It's unique. We can't replicate this in all types of blood cancer, but it really is a remarkable result.
Chuck: Andy, when we think about solid tumors, lung cancer, prostate cancer, breast cancer, we focus a lot on prevention and early detection and screening. And that has been a bit more of a challenge around the blood cancers.
Is there any progress you'd like to highlight there? We're, we're getting better at finding these diseases before they become a problem, or is that something that we still have yet to accomplish?
Andy: You know, all the progress that we've made, all those years of life that we've saved in the blood cancer space, has been because of treatment that we've developed. There is no screening, there is no prevention currently for blood cancer patients.
But there may be an exception. There is a recent study at the American Society of Hematology meeting this past year, that international randomized study looking at patients that have something called smoldering myeloma.
This means that they have the risk of developing myeloma in the next three to five years – about a 50% risk of developing myeloma in the next three to five years.
If we give them another antibody therapy. So again, not chemotherapy, not always easy to give, but fewer long-term side effects. If we give them an antibody therapy, it reduces the risk of that smoldering myeloma becoming full-fledged myeloma by 50%. You know, this is one of the first times we've been able to see this type of cancer prevention in a blood cancer like that. So really quite, quite remarkable.
We've also learned a lot about other types of cancer. AML in adults increases in frequency with age. Life, sadly, is leukemogenic. Life, if you live long enough, there's a higher likelihood you're going to get a disease like AML.
But we know the disease-causing mutations and we can test for them in the blood and try to identify patients that are at higher risk, or not, of developing it. The problem is we don't know– we still don't know who's going to get leukemia or when they're going to get it, and we don't have effective therapies that aren't toxic to prevent that progression. We have a lot more work to do, but we're getting there.
Chuck: So what is the LLS doing specifically around this? Funding researchers around the country, around the world promoting clinical trials, doing patient awareness – tell us a little bit about the activities of the organization.
Andy: Yeah, you know, I'll use another exciting example to illustrate that. So in 2007, some investigators discovered this protein called menin. And menin is very much involved in how a specific type of leukemias behave. And within a couple years, they identified an inhibitor for menin and LLS helped them to bring that to a company, help to commercialize it.
Today, LLS is sponsoring two drug– two trials of menin inhibitors. One in children, infants through later childhood, and one in older adults. This is what LLS does, is we fund the early science, the early discovery, and then we help make sure it gets to patients as quickly as possible and as effectively as possible.
You know, we do have a bold goal, which is that by 2040 we're going to enable patients with blood cancer to gain more than 1 million more years of life. We know we're already on a trajectory where patients are going to gain years of life. We want to accelerate that pace. And that means that we've got to make progress in acute myeloid leukemia in children and adults. We have to continue to make progress in patients with multiple myeloma. We need to continue to make sure that patients that have diseases that can be treated with new therapies, that they have access to those new therapies.
We have a lot of work to do, but I'm really excited about what that next innovation is. So we are doubling down, making sure that we continue to push and accelerate progress and whatever happens next, it's going to be another game-changer, the way immunotherapies and precision medicine have been.
There's a lot of great ideas that are being tested, and I can't wait to see what they do for blood cancer patients and, and all cancer patients.
Chuck: So we thank you for your dedication to blood cancers. We thank you for your dedication to children with cancer and we are proud to know you and delighted to have you on the podcast, Andy.
Andy: Thank you both.
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Alicia: Well, that was so exciting and really gives so much hope to those people, whether they're kids or whether they're adults or older adults who are suffering from, or recovering from these terrible diseases.
Chuck: Absolutely agree. What the Leukemia and Lymphoma Society is talking about here is 21 million years of winning, which is 21 million years of life saved due to the advances in treatment of these blood cancers.
That's amazing. And think about the productivity, think about the happiness, think about the weddings, think about the parties, think about the work, think about all of the great things that are happening in the lives of 21 million years of life lived because of treatment. That's pretty remarkable.
Alicia: Well, that is definitely good news.
Chuck: I'm Dr. Chuck Ryan at Memorial Sloan Kettering Cancer Center in New York.
Alicia: And I'm Dr. Alicia Morgans at Dana-Farber Cancer Institute in Boston. The views we express on this show are our own and do not represent the views or opinions of the institutions where we work.
Chuck: Thanks to Lilly for support of the show. Our production partner for this series is CitizenRacecar. This episode was produced by Anna Van Dine with post-production by Alex Brouwer.
Alicia: And there's a whole lot more good news to talk about, so make sure you subscribe to this wherever you listen to podcasts. And if you like the show, share it with someone you think might find it interesting.
Chuck: We'll be back again soon with more good news about cancer.
