At The Forefront Live: Childhood Cancers
September 9, 2019
About 70,000 young people are diagnosed with cancer each year in the United States. Pediatric oncologist James LaBelle and Jennifer McNeer join us to discuss the latest advances in cancer treatments and care for teens and young adults with this disease. You'll also hear from a patient and first baseman Anthony Rizzo, who were both diagnosed with Hodgkin's lymphoma in their late teens.
And remember, we'll take your questions live on the air. That's coming up now on At the Forefront Live.
And joining us today, we have Dr. Jennifer McNeer. And Dr. James. Labelle we want to remind our viewers that we'll take as many questions as we possibly can over the next half hour, but this program is not designed to take the place of a visit with your physician. Welcome to the program.
If we can start off at first, just have each one of you tell us a little bit about yourself and what you do here at UChicago Medicine. And Dr. McNeer, if we can start with you.
I am Dr. Jennifer McNeer. I'm a pediatric hematologist an oncologist here at UChicago Medicine. My focus is on children, adolescents, and young adults who have hematologic malignancies, such as leukemia and lymphoma.
Yes. And I am Dr. LaBelle. I am also a pediatrician, a pediatric oncologist, at the UChicago Medicine and specialize in young children who need stem-cell transplantation and other cellular therapies.
OK, Let's start off and talk a little bit about some of the programs we have here at UChicago Medicine. One that was particularly interesting to me-- and I found out a little bit about this when we were talking with you for an interview a little while back-- is the AYA program, which is for Adolescents and Young Adults. What exactly is that, and why is that so important?
So the Adolescent and Young Adult Oncology Program here at UChicago Medicine was started about seven years. Ago and we bring together medical oncologists and pediatric oncologists into the same space to take care of adolescent and young adults who have cancer generally between the ages of 13 and 39.
And in addition to bringing together physicians, we have nurse practitioners, Fellows , and then we also have a number of supportive staff, such as psychologists, social workers, physical therapists, and pharmacists, who help us out as well.
So we talked to Anthony Rizzo and Anthony Bendy, and you'll see a couple of clips from them later on in the program. They're both great guys and a lot of fun to get to know both of them. And it was a chuckle on this one. Every time I think of Anthony Bendy, the young man that you treated, he's got this full head of hair now, and he's very proud of that. His mother was a little bit-- she wasn't as excited about them.
But he's doing great. And I think it's a great example of how the program can really impact in a positive way these young people that are going through this situation. Dr. LaBelle, I don't know if you want to comment a little bit on Anthony and just the program in general.
Yeah. I first met Anthony after he had actually relapsed from his disease and was under Dr. McNeer's care. And it was clear at that point that Anthony needed a stem-cell transplant. And we worked really closely with Dr. McNeer and her team to sort of orchestrate that and to continue on with Anthony's therapy.
And he was quite a force when I first met him. He was really an amazing, and continues to be, a really amazing young man. And we learned a lot from him. And it's wonderful, as you said, to see him doing so well now. I see him in the hallway now, and I kind of chuckle with him. But no, he's doing fantastic.
One of my favorite parts when he came to visit with Anthony Rizzo, the baseball player-- they both have the same disease Hodgkin's lymphoma-- and they took some time out, talked with the kids in the play room at Comer. And it was just so neat to see both of them interacting. And of course, Anthony Rizzo-- the young people knew who he was. But Anthony Bendy, as well-- he stood up there, and he gave them some great advice. And it was just really a powerful moment. I thought it was just great to see the two of them. And he's a good guy.
When we talk about young people, you said the age between 13 and 39-- correct-- for the AYA program? Why is that bridge so important? Because it seems like a lot of times, when we talk about treating patients, you talk about pediatrics, and you talk about adults. But with cancer, maybe it's a little bit different. Is that correct?
Yeah, it really is. These patients are not necessarily pediatric anymore, yet they are not adults. They are generally at a time in their life where they are trying to navigate becoming more autonomous, they are trying to figure out where they're going in terms of education, maybe they are starting new jobs. They may be navigating some of their first adult relationships. And all of a sudden, cancer comes in and takes over for a little bit of time.
And so a lot of our focus is on making sure that we are really up to date on how to treat their particular cancer because we know the biology is different in this age group. But we also have to take into account the big picture. And how can we help these adolescents and young adults take a pause and then continue on with where they were going so that they can continue to be the successful people that they were destined to be?
And there've been studies-- and I think you were telling me this earlier when we met a few weeks ago-- that show that survival rates for young people that go through a program like this are higher.
It's true. When you're treated in a program that does specialize in adolescents and young adults, you have treatment teams who are really up to date on, as I mentioned before, the biology of their particular diseases. Are there therapies that might be better tailored to treat those diseases? And furthermore, how can we optimize things with compliance with appointments and adherence to medication regimens at home? Because we're also asking these folks to do a lot in terms of being at the hospital frequently for appointments, taking medications at home. And really partnering with them to make sure that they are adhering to that is hugely important in terms of achieving high cure rates.
So Dr. LaBelle, you treated Anthony Bendy when he needed the stem cell, or bone-marrow transplant. How exactly does it work?
So there's multiple different ways in which a stem-cell transplant works. And in Anthony's case, we needed to harvest Anthony stem cells, sort of to provide a rescue after he got very high-dose chemotherapy to allow him the best chance of survival after his after his chemotherapy. And so we actually collected his stem cells prior to the stem-cell transplant. And after giving him high-dose chemotherapy, we actually infused those stem cells afterwards, allowed his immune system to come back strong enough so he could continue on with his therapy afterwards.
And actually, one of the unique features of the UChicago Medicine AYA program here, as led by Dr. McNeer, is that we work really symbiotic early with the patients in the same clinic. So those patients like Anthony are actually seen both by their primary oncologists, as well as the stem-cell-transplant group. And our stem-cell-transplant group is also made up of physicians, nurse practitioners, social workers that actually specialize in stem-cell transplantation.
But we don't do it separately than his primary oncology team. It's actually very quite symbiotic. And that's one of the need features of Anthony's care as it relates to the AYA clinic.
I may sound like a little bit of a broken record on this because we talk about this almost every program. But one of the things that I think that I just see it over and over again with the physicians here at UChicago Medicine, which I think is just so important, is just this team effort. And it seems like every step of the way, no matter what the prognosis, diagnosis is, we see our physicians working together with all the caregivers. And it really makes a big difference.
And as you as you put together the care plan, how important is that to you to be able to talk to other physicians, other caregivers as you work through that care plan?
It's hugely important. This is a long and complex process. And if we're not working together from day one, then we're not really going to be able to facilitate proper care for these patients. So it's not just us clinicians who need to work hand-in-hand, but it's our pathologists, our radiologists, all these other specialists who may be behind the scenes, as far as the patients are concerned. But it's just hugely important in terms of delivering the best care.
Could we talk a little bit about immunotherapy because that's something we hear a lot about recently, and it seems like it's gaining traction in the treatment of patients. How important that is that for when you deal with these AYA patients?
Immunotherapy is really becoming an integral part of their treatment. So we're learning more about what proteins may be expressed on the surface of these cancer cells that we can target with a treatment that brings chemotherapy or other therapy right up to the cancerous cells. We're finding that these therapies are very successful in treating patients who have relapsed disease or disease that's resistant to upfront treatment. And so now we're trying to bring that into upfront therapy to see if we can push those cure rates even higher.
And Dr. LaBelle, I don't know if you can speak to this, but I know it's also very important that we're part of an academic institution. We do a lot of research, there are a lot of clinical trials and things like that. How important is that when you look at treatments for these patients?
It's imperative, actually and particularly, when we think about immunotherapy. The oldest form of immunotherapy is stem-cell transplantation. So it's the oldest and most truest form. The problem is that there are biologic problems with any kind of therapy like. That so stem-cell transplantation has other issues that we need to deal with.
And so this advent of immune therapy is actually using the person's immune system to actually target their own cancer cells by unlocking that veil of non-reactivity. And this has only been done through academic relationships. And now, really, we're at a new dawn, as far as being able to treat patients with refractory disease or patients who conventional chemotherapy has not provided them with cure. And the only way we can do this, particularly in the pediatric and AYA population, is through academic basic science, and then bringing that basic science to the patient's bedside.
What about fertility-preservation options? Because again, for young people, that's very important. What's going on there?
Yeah, So it is very important because as I mentioned before, what we want to do is really stress that this time is a pause in life, and life will go on after treatment and in the survivorship time. We know that a lot of our therapies can impact fertility, and some patients are infertile after they're done with treatment-- not all of them, but some of them are.
And so we talk with our adolescent and young-adult patients about various options that exist for males and for females. We refer them to the proper specialists to help with that process. And sometimes, it means holding off on starting treatment for a couple of weeks in order to allow that to happen. And as long as it's safe for the patient to do, it's so important for them to have that safeguard or that guarantee, and I think, too, that feeling that we are looking to the future and that we do anticipate them being parents one day if they would like to.
Could we talk about Teen Cancer America and what our partnership there means and how that helps kids?
Yeah Teen Cancer America is a fantastic organization that is really partnering with various medical centers across the country to help bring a focus to teenagers and young adults who have cancer, and in creating programs that will support these patients, and also, creating some spaces in the hospital that are really geared towards them. We were fortunate to receive a grant from Teen Cancer America several years ago. We've used that money to create an adolescent and young adult lounge in our waiting room. And this is a place where are our teens and our young adults can go to hang out when they're getting their therapy, or waiting for various parts of their appointments. We hope that they can connect with each other in that room and maybe find somebody who they really can identify with who's going through something similar to them.
And then we've also used part of that grant to support a program-coordinator role. And what we're doing with that is having somebody who can put together various programming opportunities for these patients-- so whether they are support groups, some of it has been mindfulness and breathing sessions, there's been some nutrition education. We're bringing people some financial counseling opportunities and things like that.
All right. We've heard a lot about Anthony Bendy and Anthony Rizzo. We've talked a little bit about them. We prepared a video that we want to show now, so we're going to go ahead and roll that, and then we have an interview with the two of them right now.
- What's up, brother?
- Hey, how are you?
- How you doing?
- Good. It's good to see you again.
- Everything good?
- Got hair now?
- Right? A little bit too much. My mom likes to say.
- How long have you been in remission for?
- I've been in remission for a year. But I just finished my chemo, or my immunotherapy, which was like a small--
- It was like maintenance?
- Yeah. It was all brentuximab.
- Feel good, though?
- Yeah, I feel good.
- And I feel really, good.
- That's awesome.
- It's cool to see you again.
- You too.
- That was special because we were so close in age when we had it, same treatment, same type of cancer, and same first name, and he's somebody I already looked up to. And the fact that he got through it, and then now, he's one of the best professional athletes and one of the best people I've ever met, is amazing.
- 2008-- I had Hodgkin's lymphoma. And I remember sitting in the hospital room talking to my mom, my parents about maybe one day, start our own foundation. Getting back to-- I was in the minor leagues at the time so, my dream was to make it to the big leagues and play major league baseball, and on top of that, was to open up a foundation to help kids going through cancer because it's really not fun to go through it alone.
- I believe that the foundation can bring that support and togetherness whether it's to the staff or to the family, and just really create that backbone for people so they don't feel like they're alone, and they're not having to do it on their own.
- Well, obviously, when he went through chemo, everything fell out. And now, he's got a very curly head of hair, which is-- if he wants to keep it, he keeps it. But he might need a--
- He's not keeping it.
- --to groom it maybe just a little bit. But overall, it's great.
- (WHISPERING) It's awful.
- Like I said, he kept a very positive outlook, and recognized that this was an interruption in life, but always knew he would get back to his college classes, back to his athletics, and back to being who he was.
- I have never met doctors, nurses-- from the top to the bottom, everyone has taken such good care of Anthony. He's alive today because of the people here. I have no doubt in my mind about that.
- It's good to know that you he's kind of moving on with his life, and going to school still, and getting his degree, and having a job. And it will be fun to see kind of where the future takes him after.
- He was never alone. We were team Bendy, and team Bendy fought it together.
And welcome back. Joining me now is Anthony Bendy and Anthony Rizzo. We have two Anthonys. First time we've ever had two Anthonys, I think, on the program. Welcome, guys.
Oh, it's good to be here.
How's it going? How are you?
Great. You guys had kind of a similar journey. And this is a pretty neat story because you go back about a year or so when you first met. And I know Anthony Rizzo-- you did something really nice for Anthony Bendy. And Anthony, I'm going to have you tell us about it first.
Well, before you we ever even met, Anthony had sent me a picture, to my mom actually, through email, through the Anthony Rizzo foundation, and it said, "Get well, Anthony," from Anthony. But it was just a nice lift of the spirits, especially-- it was my first day of chemo. So it was something to help me get my mind off of the fact of everything that was going on.
Well, the timing couldn't have been better on that.
Oh, yeah, no.
And so Anthony Rizzo, why'd you do that? Why are you so involved with young people that are going through this?
Well, I've been through it. And it's not fun when you're going through it for anyone. For me, it wasn't fun, for my family, it wasn't fun, for my friends, everyone around me. So I think that whenever you can lift someone up in the smallest ways-- playing for the Cubs and wearing the Cubs uniform all the time-- brings a lot of joy to a lot of people here in Chicago, and really, the country if you're a Cubs fan. So for a player that's been through it to reach out, I think-- I mean, it helped Anthony. So it makes me feel good to know that it is making a little bit of a difference.
And we did something just a few minutes ago that I thought was pretty neat. We'll roll some video of this one when it comes time. But you got to meet with-- both of you got to meet with some of the kids over at Comer Children's Hospital.
And it was really kind of touching to me when you both gave them advice on how to move forward. And I don't know if you want to share a little bit of that and what that meant to you as well.
I think it's really important-- your life after cancer because it's a difficult time. And it's a difficult time for you and everybody around you. And a lot of people just wanted to quit and roll over, but it's important to continue to do the things you want to do and continue to believe in yourself, I think. It's a huge part of why I'm here and what's going to take me where I'm going for the rest of my life.
Anthony, in your role, in your position in life, you meet a lot of people, and a lot of people look up to you. So when you do those situations like that, it means, obviously, a tremendous amount to the kids there and their parents. But what does it mean to you to be able to be participate in that kind of thing?
Well I love it. It kind of just brings me back to when I was sick and sitting in my hospital room thinking about-- at the time, it was 2008, so I was a really big fan of Lance Armstrong and LIVESTRONG Foundation and everything they've done just with their little yellow wristbands. So sitting there and talking to my parents, saying, you know, one day, I'm going to overcome this, I'm going to play major league baseball, and I'm going to be able to start our own foundation. And 10, 11 years later, we have started our own foundation.
And we've really been able to help out and just escape reality for a little bit. Just because you're going through this terrible time of sickness, there's still light at the end of the tunnel. Even on the darkest days, the light's going to come out. So it feels good to just be able to help and make people smile for a little bit.
You know, it's interesting to me because you both had the exact same disease, correct?
So you both had Hodgkin's lymphoma. You've been about a year out now.
And you're almost 11 years out.
And it's just amazing because I met you a year ago as well. It's nice to see the changes with you and the full head of hair, if one thing.
But you're very active again. Obviously, professional-- athletes you're very active as well. This didn't get you down, though, either one of you guys.
No. And then that's the thing is that fortunately, enough-- unfortunately and fortunately enough-- unfortunately, that cancer is just everywhere now. Fortunately, there's so many amazing doctors that will explain to you kind of the process of what it's going to take. And once you kind of get that diagnosis and they tell you, OK, this is kind of what it's going to be like, I took it full on-- full head on. And so did Anthony from everything he said and his attitude.
So there's a couple of ways through it. You can be all mopey, or you can be positive. And I think the positivity and being strong is most important.
Speaking of being positive, one of the things I've noticed about you is you smile constantly. And that's something that the doctor said as well, and the nurses that worked with you, your family. They said they never came in your room and you didn't have a smile on your face, even going through these rough times. Attitude is very important, as is having that family support and the togetherness.
Well, that's the one thing you control is your attitude and how you handle the situation at hand. You can't control having cancer, but you can control how you react to it. I know when I first got diagnosed, I was really, really scared. And I didn't-- because it was something I'd never gone through-- really understood completely. I didn't really even know what chemo was. I didn't even know that it was just IV. I thought maybe you went in a room and all this stuff happened.
But, you know, once I got over that initial fear of the unknown, I set my mind to what I was trying to do, and I never let myself get down. That was really important to me. And I felt like it was something, when my family would come to see me, It was something that would help them see, OK, he's still doing, he's still smiling, he's still fighting. So I thought that was important.
And Anthony Rizzo, you received your treatment at the University of Miami. Is that correct?
And how important was it to you to be at a place-- because it's comprehensive cancer center if I'm not mistaken-- how important was it to be at a place that was on the cutting edge of that kind of technology?
Yeah, it was amazing. So I got diagnosed in Mass General Hospital in Boston. And my first treatment is up there, and then we went down to Florida. So it was amazing to be at home and so close to the Sylvester Center in Miami to where we would just go down every other week and get our treatment.
And I've seen the Sylvester Center in Miami grow so much over the last 10 years-- how much better it has gone, too. But all the resources there-- everything you need is right there. So it's like kind of a home away from home for a little while because you spent so much time there.
And here at the University of Chicago, we're also a comprehensive cancer center, which is important for our patients. And can you talk a little bit about your treatment here and your caregivers, what they were like?
Yeah, they were awesome. They always made sure I knew what was happening, what was going to be the next step. And that was part of why I always felt like I was ready for what was next. They would tell me what to expect. They wouldn't sugarcoat it.
Maybe it was my age, and maybe it was because I told them to. But they wouldn't sugarcoat anything, and I appreciated it. And it helped me be prepared for everything I was going to be going through.
So Anthony Rizzo, your foundation-- very active with these patients. And what do you hope to accomplish as you move forward in the future?
Well, we just want to help out as many families as we can. And our biggest thing right now is paying a lot of bills for families so a family doesn't have to decide whether they're going to save their child's life, or pay their mortgage, or their bills.
And it's important to us because it's a stressful time. I remember-- I keep going back to when I was sick-- but the Red Sox-- I was with the Boston Red Sox at the time. They paid for all my medical bills. And if not, I don't know where we would be in a financial state-- my parents and myself then-- so to be able to do that.
And then we have a lot of-- oh, my gosh-- a lot of workers that we are hiring now to go in and explain to patients, like Anthony, hey, this is what you're going to go through. This is what a lot of patients have gone through. Everyone's different, but they'll walk you through what's going on and your specific cancer and your specific treatment to help out. And that's amazing for us. And to have social workers working for us has done so much help and so much good from all the feedback we've been getting.
And in part, also, some of the things that are happening with this campaign and with your foundation is providing research funding for just the work that happens in the labs, and we do some of it here at UChicago. And that's also very important.
Very important. And we do donate a lot of money, especially down to the Miami Sylvester Center-- Dr. Lossos down there. And he actually has brought my parents in a few times to his lab, and has it all written out on actually where it's all going-- the money. And it's really cool to research that these doctors can do.
And they don't get a lot of funds to be honest. So everything that they get goes directly to the research.
So Anthony Bendy, let's talk about your plans for the future because I know you're busy guy right now. You're going to school, you're wrestling, you're growing your hair. Your mom loves that.
But you got big plans for the future, and you're just moving forward. And I just-- I'm impressed. I mean, I see you, and my hat's off to you. I'm just impressed.
Yeah. And I'm excited for the future. I know there's a lot to do. There's a lot that I can do. And I'm not letting the things that happen to me hold me back, or distract me, or make myself think that I can't do something just because of that.
If anything, you're the kind of guy that can probably do just anything now.
Mm-hmm. It's weird to say, in a very strange way, I'm happy that it happened to me because I learned a lot from it, and it made me who I am right now. And it's a huge motivator for me.
Fantastic. Well, guys, thanks very much for doing this. We really appreciate it.
Thanks for having us.
A lot of fun.
All right, we'll be back here in just a minute.
Comer Children's Hospital at the University of Chicago Medicine is at the forefront of kids health, shaping national standards of care from infants to young adults. Comer Children, welcome to the forefront.
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Thanks for watching. Have a great week.
Comer Children's Hospital at the University of Chicago Medicine is at the forefront of kids health, shaping national standards of care from infant To young adults. Comer children, welcome to the forefront.
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