MD Anderson Cancer Center
Lisa Garvin: Welcome to Cancer Newsline, [background music] a podcast series from the University of Texas, MD Anderson Cancer Center. Cancer Newsline helps you stay current with the news on cancer research, diagnosis, treatment and prevention, providing the latest information on reducing your family's cancer risk. I'm your host Lisa Garvin. And today we have a special podcast 'cause we have three people in the studio. Our subject today is brain cancer. My first guest is Dr. Amy Heimberger. She is an associate professor of neurosurgery here at MD Anderson. My second guest is Lanie Rose who is the founder for the Run for the Rose which is a run to raise funds for brain cancer research. Our third guest is Gail Goodwin who is the program manager for communications her at MD Anderson and also a 3-year survivor of brain cancer. So welcome ladies.
Gail Goodwin: Well, thank you.
Dr. Amy Heimberger: Thank you.
Lanie Rose: Yeah.
Lisa Garvin: I think we'll start with you Dr. Heimberger. Let's talk about--well, Gail's diagnosis as well as Lanie's daughter's diagnosis oligodendroglioma. What type of brain cancer is that?
Dr. Amy Heimberger: Cancers of the brain are classified in by the World Health Organization. And there's four different grades. Grade 1 is a very benign, usually can be treated with surgery alone. Grade 2s can consist of things like oligodendrogliomas or low-grade infiltrating astrocytoma. Again many times, surgery is the preferred choice, although in some cases, if it's not surgically treatable, sometimes these patients get chemo or radiation. Grade 3, usually people know it by the name anaplastic astrocytoma. These are more aggressive types of tumors. You can't fix them necessarily with surgery. A lot of these folks need surgery, radiation and chemotherapy and then the most malignant type of primary glioma type of tumor goes by the name of glioblastoma multiforme or glioblastoma. That grade 4 tumor is a highly invasive, highly malignant type of malignancy. Although the most common type of brain tumor in adults is a benign tumor called meningioma which is a tumor of the covering of the brain. The most common type of glioma in adult patient is a malignant glioma, i.e. glioblastoma multiforme.
Lisa Garvin: And typically, with brain tumors, there is really no familial connection and really no identifiable risk factors. Aren't they pretty sporadic?
Dr. Amy Heimberger: 95 percent of the time, yeah, they're absolutely completely sporadic. It's not anything that any patient has done. It's not because they've been, you know, they've taken a fall. It's not because of something they've done. There are some rare types of gliomas that are familial but usually folks come in with a history mom had a brain tumor, dad a brain tumor, 3 sisters had a brain tumor. And that's an area we typically get a geneticist and an epidemiologist involved to evaluate that family cluster. But the vast majority of the cases, we don't know what causes this, we don't think there's anything anybody has done that have caused this or triggered this. Now, there's a lot of studies that are under way and people have heard of controversial stories about the cellphone, does that trigger malignant tumors? The verdict is not--it is not back in yet. We don't know the answer. The World Health Organization has listed cellphones as a possible cause. But there's no data that says, yes, absolutely we know for a fact that that's the reason. And for every study that you could produce in front of me that says, yes, it causes brain cancer, I could produce an equally valid study that says, no, they do not. Before this, there was question of, you know, electrical power lines. There was a series of studies way back 20 or 30 years ago about them being a cause for brain cancers. Petroleum or exposures to certain chemicals, certain radiations, all of these have been at various points in time in the literature has possible causes but really the answer comes down to we don't know causes this in the vast majority of the cases. We understand some of the genes that are behind it but we don't understand why these genes go array.
Lisa Garvin: And then are there any commonalities on the people who were diagnosed in terms of age, gender or race?
Dr. Amy Heimberger: For the high-grade malignant gliomas, the glioblastoma multiforme, the one that everyone fears. They are more common in Caucasian population, no one really understands why but the vast majority are and there's a little bit of a male preponderants of high-grade malignant gliomas. It's very close though, very, very--it's almost 50-50, so we're talking very slight differences in sex as far as the predisposition to this. Now, in the case of meningiomas, remember I mentioned that those were tumors of the covering over the brain. Women are a little more likely to have those compared to men but more likely Caucasians.
Lisa Garvin: And typically, I know in Gail's case as she was stage 3 at diagnosis. It's pretty typical to catch them in advance stages.
Dr. Amy Heimberger: You know, it's various. It varies. You know, some folks, you know, they get on a motor vehicle accident.
Lisa Garvin: Just lucky.
Dr. Amy Heimberger: Yeah. They get a CT for some reason.
Gail Goodwin: I stop talking.
Lisa Garvin: Okay [laughs].
Gail Goodwin: So everyone who knows, we knows, that was an indication something was wrong.
Lisa Garvin: That something was drastically wrong, you were chatting.
Gail Goodwin: Right.
Dr. Amy Heimberger: Other folks can become symptomatic. It depends on the location. And it's all about the realistic location, location, location.
Lisa Garvin: Left frontal lobe.
Dr. Amy Heimberger: Yes. So left frontal area would be an area of the brain called Broca's and that's an area that produces speech. So if the tumor is nearby invading or pressing on that area, yes, someone can present with problems with their speech. It depends on the location. Sometimes tumors can be in the motor area at area of the brain that moves the arm or the legs or sometimes folks come in with, you know, a weak arm. Sometimes they come in within coordination if it's located in their coordination center. Sometimes they just present with headaches. First thing in the morning, sometimes those headaches wake them up in the middle of the night. These are kind of warning signs. It's very typical for most people to have headaches. I mean the most of the population has a headache at one point or another. And I think everybody worries, oh my gosh, do I have a brain a tumor? The signs that we really look for as a neurosurgeon is when someone comes in and says, you know, its waking me up in the middle of the night or I wake up with this headache first thing in the morning and then as I stand up and walk around it gets better. Those are sort of the warning signs that we become a little bit more cautious and our ears perk up when we hear that from someone. As you go through your day and the day gets, you know, stressful or whatever or, you know. The job you're pulling out your hair, a lot of times, those are more tension headaches related to work or stress. So when folks say, "Oh, you know, what happens, you know, about, you know, 2 or 3 o'clock in the afternoon after a hard day of computer work, I get a little less worried or concerned." Other times, folks can have things like seizures as their main presenting symptoms. But I got to tell you there's been a lot of folks that I've seen over the years that just come in because someone told them they got a head CT for whatever reason. Occasionally, I have had folks that have gotten one just for fun or for a research study like students. They've gone in as a control for, you know, research study and all of a sudden, they show up at MD Anderson saying--I have something in my head I had no idea.
Lisa Garvin: Now Gail, if I remember the story right, you were actually sitting at your desk at work and somebody came in and notice you were looking not right. Tell us about that.
Gail Goodwin: I'm not quite like that. I came in it was just a normal day and I drove in on the free way for heaven sake which kind of scares me. I got to the office and sat down in a few minutes later, one of colleagues came in and she offices across the hall from me and she two times called out to me and asked if a was ready to go to a meeting that we had. And I didn't respond and so she walked across the hall and she said "Really, we have a meeting, are you ready to go" and I just smiled at her. She said "Okay, you know, this is a really bad April Fools joke because it was April 1st or I need to call the ambulance." And I just smiled and she called the ambulance.
Lisa Garvin: Now, and so you were diagnosed right away?
Gail Goodwin: Yes, they took me to Memorial Hermann actually because I thought I had a stroke. And my husband came and he said he--I thought I went immediately to a room but he said, no, I didn't get into a room until that afternoon that they did a CAT scan and called them in and said, "Boy, this doesn't look good, you know, we're so sorry." And then I had an MRI later that day and then I came back to MD Anderson in 2 days immediately met with my surgeon and my oncologist then 2 weeks later, it was almost all gone.
Lisa Garvin: In retrospect, looking back in some of the symptoms that Dr. Heimberger mentioned, would you have notice that come up earlier, did you have these nagging symptoms or maybe blew them off?
Gail Goodwin: I've had headaches my entire life but my grandfather had them, my mother had them and I asked after I was diagnosed and I tell them that I had always had headaches and they said it had nothing to do with this. They said it was very slow growing. They didn't know when it started. It was a size of a lemon when they took it out. I know, can you imagine having a lemon in your head? Oh, anyway but their--Dr. Weinberg was my surgeon and he got all. He tell me, he assured me except for about 15 percent and so my friends asked him to leave my personality intact--[laughs] hopefully, it's still there.
Lisa Garvin: And Lanie, your daughter Marnie Rose was a doctor and TV viewers may remember her from a show called Houston Medical where her disease was actually front and center as part of the story. What was that like for you as a mother but also seeing having ever [inaudible] in on your daughter's journey?
Lanie Rose: It provided a wonderful distraction for Marnie and actually for us to otherwise you obsess over the brain tumor and worry about everything 24 hours a day. But it was horrible at the same time because we really felt like we had to had our emotions or--but we would have done that anyway rather than maybe showing Marnie how horrified we were. But it was a time we felt that it was very important for people to see that these brain tumors were not happening just to older men. They were happening to young adults with their lives ahead of them and with no risk factors.
Lisa Garvin:>> And it seems like the show really became kind of an awareness campaign.
Lanie Rose: Yes. Yes.
Lisa Garvin: And, now tell me about the progression of your daughter's disease. It was fairly fast, was it not?
Lanie Rose: Yes it was.
Lisa Garvin:And how was it for her as a doctor knowing what was going on up there?
Lanie Rose: I think we all had hope that Marnie would be the one person that would survive and we never gave up that hope but I think also we know that it might not end that way. And Marnie lived a year and a half which really was just about as long as anyone 10 years ago lived.
Lisa Garvin:And so how did the Run for the Rose, was there a Run for the Rose before she passed or did this happen afterwards.
Lanie Rose: No, it happened right afterwards.
Lisa Garvin: And how has that gone. I mean it seems like it's been quite a success and it builds every year.
Lanie Rose: It's been an amazing success because people in the community have supported us. People in the medical community, people that saw Marnie on TV, people just have--decided just that we're doing a good job at what we're doing and they're amazed to see the difference now in their survival rates of some brain tumor patients and anyway we started the first run, my sons we're worried that it would only be the four of us there. [Laughter] And--but we had 1800 people and now this year we're expecting over 5,000 and that we will net over a half a million dollars.
Lisa Garvin: Just from this year's race.
Lanie Rose: Just from this run and that--and then we will have given over 3 million dollars to our 2 hospitals.
Lisa Garvin: That's wonderful.
Lanie Rose: In 10 years.
Lisa Garvin: And now, are you--your money is going towards specific types of research or what are you hoping to fund with these moneys.
Lanie Rose: Yes, we specify that we want to fund research that offers the hope for a cure and we have funded Dr. Heimberger's research sends about 2005 or 2006 and we funded the Delta-24 before that and we fund some new drug development and now we try to give large sums of money to a few researchers.
Lisa Garvin: And let's talk about some of these things that we're doing. Generally, when I think of brain cancer treatment I think of surgery that it looks like, you know, you're talking about Delta-24 and other cancer vaccines, talk about this role of nonsurgical treatments for brain cancer.
Dr. Amy Heimberger: As I mentioned that with the anaplastic astrocytoma, grade 3s, grade 4s, surgeries aren't enough. These tumors come back, they regrow. We also have to remember that sometimes, we're every lucky that we have a tumor, it's in a location, we can get out. But there's many times that I see somebody that we can't offer them a resection. It is very common in pediatric patients, young children where they can have a glioma in their brainstem and you simply can't do anything with what. So we know that surgery is not enough. And in fact for a while, there was even a big discussion in the neurosurgical community of whether surgery was even of a benefit in high-grade gliomas as far as survival. So that was a long ongoing debate for quite a while. The idea behind a lot of this therapeutics is that we need to understand that in the United States, there is far as Pharma is concerned, you know, big pharmaceutical companies. They want to see return on there investment and since you have patients that have malignant gliomas, it's not as big a business as let say lung cancer patients. So you're looking at, you know, maybe 20,000 patients per year with malignant tumors in the United States and that's in comparison to a very large number of patients where lung cancer or breast cancer. So if you develop something specifically for glioma patients, it really has to be a gigantic blockbuster probably even crossing over into other types of treatment for other malignancies for them to see return on their best investment. So, there really hasn't been for quite a while an interest in big Pharma here in the United Stated to develop agents or drugs or approaches for this particular patient population. Now there are some, obviously some [inaudible] have taken an interest in developing companies--drugs especially recently and approaches. But it's not universal and many times what they select is based on effect that they can use it in other types of malignancy. So there's this real need of patients, you know, that the tumors going to come back, you know, surgeries not going to do the trick. You know that sometimes chemos do not do a great job in the brain as far as treating malignancies and you know that they have a decimal survival. So you've got to do something to help folks especially the pediatric patients, the young patients that are afflicted with these terrible malignancies 'cause it really takes, I mean it takes their lives, it takes away sometimes their personality, their function, their ability to interact with their family. I mean to take care of someone who has one of these that's impacting their lives. I mean it's absolutely devastating not only for that patient but their family. So we have to do better here.
Lisa Garvin: And, you know, and its a good partnership made in heaven with--
Dr. Amy Heimberger: Yes.
Lisa Garvin: The Run for the Rose and Lanie Rose's efforts and that's a part of the problem with rare cancers as well as getting that funding like you said.
Dr. Amy Heimberger: Yes.
Lisa Garvin: Big Pharma is not interested and, you know, rare cancers, so this must have--how has her fund raising helped your effort, has it like move it up a few years?
Dr. Amy Heimberger: Oh absolutely. It showed--I think the best analogy would be that a lot of times you have a cool idea, a neat idea or a neat sort of approach to how you might treat this but you have to understand that the National Cancer Institute and the National Institute of Health, they want some data to say, "Okay, this has some possibility of working" and where do you get that data because they're not going to fund you until you actually generate that data. So it's really this chicken and an egg thing. Your like, okay, I got this great idea but how I do get this idea off the ground, I mean how do I get this started. So really, you have to sort of almost find individuals unique and are willing to invest in your idea or who you are as a person to give you that little bit of seed money. And then once that idea really starts blossoming then all of a sudden, people, you know, their ears perk up and, you know, all of a sudden, now you do have the National Institute of Health, "Oh yeah, you got some data? Oh, it's looking interesting. Oh yeah, okay we will have support that." So it's a real synergy. So you need someone to come at the very ground level but finding those folks that are willing to take the big risk at the very beginning, that's tough. And there's very few foundations that really want to sort of support this kind. They want to know that it's going to work for sure. Everybody kind of wants to know but you have to have someone that takes that chance and that's what's really unique about the Dr. Marnie Rose Foundation is they kind of take a risk, they look at somebody and say, "Look, you know what, this is an interesting idea, it might just work." And that's how this whole peptide vaccine got started. This was an idea that came actually from mice being treated with the peptide vaccine. Little mice with tumors in their heads, we treated them with the peptide vaccine. My partner at Duke John Sampson we sort of got this idea, well, why don't we do this in patients. And at the time, everybody was like, "Ah, immunotherapy against GBM's not going to work, we've done this before, we did it in the 50s, it didn't work, didn't work in the 60s, didn't work in the 70s, no hope and heck that is going to work." And we sort of pitch the idea to--you know, to Lanie Rose and said, "You know, this is our idea" we had an extremely support of chair in neurosurgery Dr. Raymond Sawaya who really said, "You know what, she might be on to something, look at this animal data." Al Yung, also a chair of the Department of Neurooncology also was very supportive of this endeavor. And so with that, they decided we're going to give you some money to help with the clinical trial at the very beginning before we had any data in any human being whatsoever and I remember going around like clinics are kind of begging patients at that time, "Oh please, you know, we think--you know, we've got great mice data." But think about how hard it is to talk to someone for the very first time when all you've got is little pictures of mice and how well this worked in a mouse. But then they asked you the hard question "Well, what about in humans?" Well, you're going to be the first or you might be the first, that's a hard decision, I mean it takes real guts for someone who stand to--
Gail Goodwin: I think some of your people come into the office [inaudible]-- [Laughter] Would you like to sign on?
Dr. Amy Heimberger: But it takes--it's really courageous folks, really courageous patients that are willing to stand up and say "Okay, I will try this." And also courageous, you know, fund raisers say "Okay, we're going to support this." But then after you get, you know, half a dozen patients on and all of a sudden, hey look, this data is showing the same thing is happening in the human patients as we saw in the mice, then all of a sudden everybody is like, okay, now were willing to help out. But again, you've going to have people but have got that the vision to say, "Look, you know, we believe in this idea, we think this is cool."
Lisa Garvin: And Lanie, was it hard for you? Was it an uphill battle when you started the foundation to attract funding and support?
Lanie Rose: Oh no, I have to say no. People just--just supported as, they've just gave us money that I was down in the lobby waiting today and a woman can't recognized me and came up and wrote me a check. People are so happy that our money goes directly to the patients not for administrative cost I've worked for free every year, all year. People are happy to support us. We've had trouble with big corporations. Getting big corporations, we would love to do that but the public is just amazing and generous.
Gail Goodwin: You all have been very visible though and, you know, everyone kind of knew Marnie and knew her story and wanted to help. I mean I remember when all of that happened.
Lanie Rose: Yes.
Lisa Garvin: And there something to be said for having a public face for the disease.
Gail Goodwin: Right.
Lanie Rose: Yes.
Lisa Garvin: Yes.
Gail Goodwin: And so, you know, I think Houston Medical, you know, told her story in such a compelling way that she became kind of an icon.
Lanie Rose: Yeah.
Gail Goodwin: Absolutely.
Lisa Garvin: So let's talk about, you mentioned Delta-24, one of the things that the foundation is funding. Let's talk about that.
Gail Goodwin: Sounds like an airplane or something. [Laughter]
Dr. Amy Heimberger: Yes.
Gail Goodwin: Or a fraternity.
Lanie Rose: Yeah [laughs].
Lanie Rose: That was our first project. That was the first time we've funded.
Dr. Amy Heimberger: That's not my specific area of research. Mine was the peptide vaccine in a small molecule inhibitor but that was developed by Juan Fueyo, Charles Conrad and Frederick Lang.
Gail Goodwin: That's my doctor.
Dr. Amy Heimberger: Yes, yes, yes, yes and what it is and they probably would be the best to--and, you know, to discuss it in depth since it's their area of expertise. But it is a virus that's specific for gliomas. It is now after a lot of hard work on everybody that was involved with that. It is now in phase 1 slash 2 clinical trials where they're actually treating patients now with the Delta-24. It is a virus that specifically attacks the malignant cells. We've actually now started developing a collaboration with them as well looking at how the virus might modulate immunity as well but that's very, very early, very, very preliminary data that we've just now started to began--to begin. So there maybe a role for us working together in the future in the synergy of immunotherapy with the viruses. But again, that's going to require a lot of new investigation, a lot of new data, but is in area that we've begun.
Lisa Garvin: So with these vaccines and immunotherapies and targeted therapies coming on line, do you foresee more research projects or more research pathways?
Dr. Amy Heimberger: Actually, there are several clinical trials that are getting ready to come online that our immunotherapeutic strategies specifically for GBM patients. But in the future, I envision that what we will do is we will do a much greater molecular characterization of the tumor and this will help us direct the therapeutics specifically for the properties of any given tumor. So in the past, it's been very general. Surgery or radiation, we kind of give you sort of standard chemo. In the future, what I think will probably happen is when we take out that tumor, that sort of the starting point where we'll look to see is there a certain molecular pathways that are activated. And if so, you would be more predisposed to receiving a certain drug that targets and down modulates those pathways. Do you have a certain immune sort of signature that's in that tumor? Does that mean you're better suited for certain types of immunotherapy strategies as opposed to others? So I think as we moved forward, it's going to be much more of patient specific and my hope is that we'll reduce a lot of the detoxicity and side effects from sort of this various sort of global nonspecific approaches that we've used in the past.
Lisa Garvin: And Gail is a 3-year survivor now. That's good news. Which is wonderful, yes. And what are your thoughts moving forward? You say there are still a little bit left in there, how do you live life?
Gail Goodwin: I try not to think about it actually, I have to, every two months, when I go to see my oncologist, when I go to heaven MRI, I mean it's--its front of mind of course and you'll always wonder what's he going to say the next day. I had MRI then I go see my doctor. You know, what's--what's the result going to be? I wrote a blog post not long ago about you should never say things are boring because that's kind of the stage where I am. [Laughter] And that's kind of like knock on wood because you just don't know. But, you know, I'm real comfortable here at MD Anderson. I work here and I spend a lot of time here. I know that I have the best oncologist the world helping me out and so I feel pretty good about where I am.
Lisa Garvin: And Lanie, how do you feel--do you feel like you've left a good legacy behind for your daughter?
Lanie Rose: Yes, we certainly have and I'd like to say that we have about 65 survivors signed up for the run this year and some are 4, 5, 6, 7 years out with no end in sight, thank goodness. Wow, at our first runs, we would have a survivor to but they wouldn't leave until the next run. And these are people, this year, the 65, a lot them have had teams for years at our run. And so we're just thrilled and we see the progress that research has made. And it is just amazing.
Lisa Garvin: Can you mention your website for people that wanted know more?
Lanie Rose: Oh thank you, its runfortherose.com.
Lisa Garvin: Great, ladies this is a fun conversation.
Lanie Rose: Thank you.
Lisa Garvin: Sounds like there is promise ahead for brain tumor treatment and--
Gail Goodwin: Hope so.
Lisa Garvin: Promise for our survivors as well.
Lisa Garvin: Thank you ladies. If you have questions about anything you've heard today on Cancer Newsline, contact askMDAnderson at 1-877-MDA-6789 [background music] or online at www.mdanderson.org/ask. Thank you for listening to this episode of Cancer Newsline. Tune in for the next podcast in our series.
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