The ABCs of Primary Brain Tumors Webcast April 14, 2009 Jeffrey Raizer, M.D. Darren Latimer. Darren s Story

Transcription

1 The ABCs of Primary Brain Tumors Webcast April 14, 2009 Jeffrey Raizer, M.D. Darren Latimer Please remember the opinions expressed on Patient Power are not necessarily the views of Northwestern Memorial Hospital, its medical staff or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That s how you ll get care that s most appropriate for you. Darren s Story If you or a loved one is diagnosed with a brain tumor seeking specialized care at an academic Medical Center isn't just preferred. It's really critical. You'll hear why from an expert from Northwestern's brain tumor institute and his inspiring patient coming up next on Patient Power sponsored by Northwestern Memorial Hospital Hello once again. Thank you for joining us. I'm Andrew Schorr. This is Patient Power sponsored by Northwestern Memorial Hospital. We do this every two weeks, and we have a vast library of past programs to connect you with leading experts from Northwestern and inspiring patients. I'm joining you from Seattle where it's sunny today. It was raining this morning. Hopefully it's nice where you are. We're going to have a leading expert from Northwestern when it comes to brain cancer and brain tumors in just a minute, but first we're going to go to Los Angeles, and I want to tell you the story of our first guest, and that is Darren Latimer. Now, Darren is normally from Chicago. He is in the investment banking business. He works for one of the big banks. He's going to join us from taking a break before he flies home from Los Angeles International Airport, LAX. So he's 34 now. He's married. He has three little girls. When he had just one girl and he was 30 he was jogging on the boardwalk in Long Island near his in-laws just Christmas Eve day, and he got the worst headache of his life. Darren, did I describe it right? You had to sit down it was so bad. It was the most debilitating thing I'd ever felt. Clearly I'd never had an issue like this so I sat down, I think I even laid down, and finished my run, and that was it for me. So you've got it right on. Now, in someone that age you say, okay, you have a really bad headache. Could be a migraine or some other kind of thing like that. And so you're a busy guy, you're flying around the country, it happened again on some flights, right? It happened again on a couple flights in February and March and even in April, and frankly I really didn't say anything to anybody because it was just a headache, I was working real hard, and I tried to ignore it for as long as I could.

2 Right. And I know the official world is stressful now, but it's always been stressful, and so eventually though you put it off. You were having some eye problems too. You go to the eye doctor because you had had Lasik surgery a couple, two, three years earlier, see your eye doctor. Was he concerned? I saw my eye doctor, in fact I put the appointment off and then I saw my eye doctor, I had an appointment and I had a golf round, and I missed another eye doctor appointment. Finally I went on May 9th in 2005, and the minute he looked in my eye he saw a tremendous amount of stress in my retina, and he was very concerned. Made me very nervous. He was really alarmed. He was hoping it was an infection in my eye, he told me that, but that was not what he was really thinking. He says, you got to go to the emergency room? Right away. In fact I remember him saying my son or my brother or somebody is leaving the office right now, will drive you. And I said don't worry about it. It's no problem. I've got to go back to the office, which I did. And then I went over to the ER, and my wife met me with my 15-month-old in the ER, and she was real nervous also. No kidding. So you have an MRI. You have a CAT scan, and they tell you what? About eleven o'clock at night on May 9th, I think it was a Monday night, they show me the pictures, and I was shocked. I had never heard of this. I had never thought about something like this. If you were walking down the street and someone says to you, boy, what's the worst thing that can happen to you, you'd say, well, you can get a brain tumor. And then I started to think about the old movie Kindergarten Cop with Arnold Schwarzenegger, which a lot of people probably have seen, and made some jokes about it because it was such a random event, and it was so shocking. They showed me the pictures. They told me what this was or what they thought it was, and they can only tell you so much on your initial pictures. And they admitted me at night. And you're admitted, and there's your wife and your kid, and this is just devastating for all of you. Devastating, and by that time at midnight, believe it or not, I think I had my brother there and a friend of mine there and my wife was there and my dad was 2

3 there, and it was devastating because I felt fine. I could have jogged home from the hospital. I was fine. But they told me I had to go in and it had to be immediate, and frankly, I'll tell you something. With somebody with pretty severe claustrophobia an MRI is the last place you want to go. Certainly an MRI that's going to show some really bad stuff, it's the last place you want to be. No kidding, Darren. So you're introduced to Dr. Levy, one of the neurosurgeons from Northwestern, and you had surgery three days later. On Thursday, May 12th. I remember all the dates when this first happened. I had surgery. I remember lying on the table and going under, and they tell me nine hours later I woke up. And it was one of the worst feelings I could have ever felt, waking up from the surgery with all things tied to you, all parts of your body, and your throat and your head is pounding, and you weren't sure where you were, but I had an inkling. And you're 30 years old, and you're a dad, and you have a career ahead of you. And what this turned out to be I understand was a lemon-sized tumor behind your right ear. That's right. It was a lemon-sized tumor, and frankly on May 9 th, or May 10th, my initial discussion with Dr. Levy, he wasn't quite sure what it was. He was hoping it was going to be a lower level tumor, but he could only do so much and he couldn't promise me anything. And after surgery I think on Friday when I was able to listen and sit up he told me what he thought it was. He said then there had to be more tests and more pathology, and these are all new words for me at the time. I didn't know what pathology meant or neuro-oncology at that time. So add the immense amount of drugs that I was already on from the surgery it was pretty trying and confusing and people coming in and students checking you out, and it's a lot going on at one time. But it's all for the right reasons and it's all the right process. That's just how it has to go down. Let's explain something to our listeners. Now, there are brain tumors that develop of cancer that started somewhere else, and that can happen in advanced breast cancer. It can happen very often, unfortunately too often, in lung cancer, for example. But what we're talking about with Darren is a cancer that is primary and starts right there in the brain and then as it gets bigger and bigger starts affecting function, so he had the headache. Did you have any other symptoms at all when you think back? Did it affect your speech or your thinking? 3

4 You know what, it never affected my speech. What it affected besides the random headaches caused by severe pressure which was really in the airplane or the eye spasms, I think my eye doctor called it, years later I did think about noticing certain voices that I heard, whomever they could be, work colleagues, friends, whomever, made me kind of zone out. This was pre-tumor. And those voices even when I hear them today I still think about it. Now, I don't zone out as much or at all, but I was zoning out, and I think a neurologist at Northwestern that Dr. Raizer introduced me to had really labeled those as mini seizures. So I think for probably the six months prior to May I was having a lot of these mini seizures caused by these random voices I would hear occasionally. And that's the extent of it, but it didn't bother me then. Now, if somebody is listening astutely and we said this gentleman, busy, investment banker running around the country, what has he done for years, and he had a tumor on the right side behind his right ear. Are you right-handed, Darren? I'm right-handed, and I use my right ear. In fact right now I'm using my left ear on the land line because I don't use cell phones anymore. Right. But do we know whether cell phones lead to brain cancer? No, we don't. Darren, in your case you wonder about it, right? In my case I wonder a lot about it. I was using a cell phone for my primary phone for a long time before most people had cell phones, and I was using the big, clunky ones. And I always remember, I always remember my ear being very hot after being done. In fact I have one specific memory which is walking down Third Avenue in New York City on 9/11 about three o'clock in the afternoon trying to get ahold of everybody I could to tell them I was okay. And I remembering being on that cell phone all day, and I remember sitting down at night remembering how hot my ear was and how hot the whole side of my head was. And I never thought two and two was going to be a brain tumor, but I knew it just didn't feel right. Prevalence of Brain Tumors Well, science will answer that question sooner or later, but in the meantime you needed care. So you had the surgery and after that starts radiation and also drug therapy. And so that's a wonderful place to bring in your doctor, sort of the quarterback for your care and a gentleman who just specializes in the treatment of brain tumors, and that's Dr. Jeffrey Raizer. Dr. Raizer is the medical director of the 4

5 neuro-oncology program in the department of neurology at Northwestern Memorial, and he's co-director of Northwestern's brain tumor institute. We're going to hear more about Darren's relationship with the institute too. Dr. Raizer, welcome to the program. So surgery often comes first when something is operable, and we're talking about I think about 17,000 people who have primary brain tumors a year in the US? Yes. If we look at the sum total, I don't know if you want to call them intracranial primary tumors, it's about 40,000, but the most common of those is really gliomas. And there's a spectrum of certain tumors that we see in children and some are fairly aggressive and some are much more benign, and there's a spectrum of those that we see in adults, and they don't really overlap too much. By and large what the pediatric neuro-oncologists treat is really different than what I treat on a day-to-day basis. But for my population the most common would be a glioma, and the malignant ones take up the vast majority of that. Right. Now, here comes Darren, and I want to see if I can pronounce it right because it sounds like, these are difficult words, oligodendroglioma. So that's a type of glioma, I take it. Yes. Glioma is sort of a generic catch phrase. Glial cells are sort of the supporting structure of the brain that support the neurons and help nourish them, and they make the coating for the nerves so they transmit faster. So oligodendroglial cells are what makes the white matter in the brain because they coat the nerves, but if those cells go awry they become oligodendrogliomas, versus astrocytes which help nourish the neurons. If they go awry then you get an astrocytoma. And then there's the ependymal cells which can become ependymomas. But by far the vast majority of what we see is really astrocytic tumors. Darren s Treatment All right. And you of course specialize in this. So you have your neurosurgeons who are trained in the brain surgery, and then there's radiation oncology specialized to the brain, and there's medical oncology, your neuro-oncologists and quarterbacking or coordinating all this. So in Darren's case after the surgery he started some drug therapy, and he went through was it six weeks of radiation? Is that right, Darren? That's right. With Dr. Marymont at Northwestern, which was quite an experience. Not a good experience, but the best that they could have made it be for me. 5

6 Sure. Five days a week, right? Yep. Five days a week from about 7:45 in the morning until about 7:56 in the morning. And I couldn't wait for 7:57. I'm sure. Okay. So, Dr. Raizer, you cut out everything you can, the radiation team does there part-you try to be very specific in radiation. Tell us about drug therapy, and the drug therapy that he had I know is a commonly used drug, Temodar, and later I know was added another drug that is just news to me, what we think of as an acne medicine, Accutane. So tell us about the drug therapy and where that comes in. So I'm actually going to back up two steps a little bit. Sure. I think Darren's case kind of illustrates that a little bit of how the process works. So the first thing the surgeon does, and we always have to have surgery because we need tissue to make a diagnosis. They always take out everything they possibly can that they can do safely, but for one thing when we talk about a gross total resection that doesn't mean every single tumor cell is taken out. So we always know that there's some tumor cells left behind, which kind of makes it a bit different than something like colon cancer where they can sort of remove the tumor with a good margin on both sides. We've got limitations in the brain of how much we can take out before we handicap people, and we don't want to do that. So the surgeon takes out as much as he can safely but even when he takes out everything he sees we know that there's residual tumor left behind, which is really the need for the other therapies to follow. Now, in Darren's case somebody would have to look at the picture of the MRI scan and the pathology, and we actually had some questions as to what the pathology actually was, and we got multiple readings on it. And Darren can correct me, but I think we might have had four opinions on it Yes. At the time because it wasn't really clear. I think two of them actually sort of agreed, and that's sort of what we went with as what probably a diagnosis was. But it also reinforces the fact that if something doesn't make sense on a scan it's 6

7 always good to get a second opinion on pathology especially from people who come from major, major academic centers, like from Memorial Sloan Kettering Cancer Center, M. D. Anderson, where they're just such big programs that they see hundreds to thousands of tumors a year. And so I trust my pathologists fully, but on occasion we really need to sort it out because that can influence how we treat the patients. And then typically when they have an anaplastic tumor we in most cases, especially if they're astrocytomas and oligodendrogliomas, which has a little bit of a split on how to treat if there's some chromosomal changes in the tumor, but typically follow surgery with radiation therapy. Now, there's been kind of a shift in the treatment of these tumors where some people will use radiation followed by chemotherapy for oligodendrogliomas, and others will treat them with radiation and chemotherapy together. And we don't yet know what's the best approach, but there's studies under way to try to address those issues to see if we can sort that out. And then typically once radiation is over patients go on to maintenance therapy, and really depending on the grade of tumor I typically treat anywhere from 12 to 24 months if things are looking good. And then in some patients when we try to be more aggressive we can add other agents onto the mix like Accutane, which you mentioned, which, as you said, is an acne medicine but we use it in far higher dosages. And it's actually been shown to be effective as a single agent, and it seems to have some additive benefit when you add it to other agents. And then in some cases when we reach a certain point of chemotherapy we often think about stopping it because if tumors appear to be cured or in remission some of the drugs like Temodar that we use, Temodar, have a low instance of getting secondary hematologic side effects later on down the line like leukemia or something called myelodysplastic syndrome. So I'm always a little bit reticent to treat somebody forever because if they're doing well I don't want to give them another problem to have to deal with. And then someone like Darren we sort of left on maintenance Accutane in the hopes that it will continue to give him some benefit over the years. It seems to be doing so. Right. We have so much more to talk about. Darren is going to tell us about how well he is doing now. We're going to take a quick break, and when we come back we're going to hear how, and I hope you've noted, he was diagnosed in May of 2005 after having the problem for months, and we are now doing this in 2009, so things have worked out well for Darren. Much more to come on our live broadcast. We'll be right back with much more. Welcome back to our live webcast. Andrew Schorr here. We're talking about brain tumors and we have some excellent guests associated with Northwestern. Now, earlier we introduced you to Darren Latimer, who is a businessman and investment banker, and he's actually calling in from one of the frequent flyer rooms at the Los Angeles International Airport before he boards a flight to come home to Chicago. But he was treated at Northwestern and received excellent care. He was diagnosed 7

8 in May, really, of 2005 but having problems for months before that. The worst headache of his life and that was being repeated. Some vision problems, pressure on his eye, turned out to be a lemon-sized tumor behind his right ear. And then also joining us is the co-director of the brain tumor institute at Northwestern. That's neuro-oncologist Dr. Jeffrey Raizer. So I want to point out something to you because so often when you think of, and Darren mentioned it, someone is diagnosed with a brain tumor you think, well, necessarily put your affairs in order. That's it. You will not be around for a long time. Well, that does happen of course, but it doesn't always happen, and that's what we strive to with the experts who explain how they're really working to cure it or give you a long life. And I think it's important to say Darren is on a business trip and he's a banker and he need all his faculties and he's doing well. And after having that one child who was with him and his wife, Allison, at the time of diagnosis, that scary night, late night in the emergency room, they now have two other young girls. So obviously Darren is invested in a long, long life. Darren, so you continue to take the Accutane, and you completed the other earlier chemotherapy and the weeks and weeks of radiation and the pretty aggressive surgery. How do you feel? Well, I'll be honest. Besides the baby getting up at four o'clock in the morning I feel great. I run. I bike. I exercise. I swim. I work hard. I play pretty hard. After this trip I'm on my way to Las Vegas as in a couple days for a college reunion. So I live my life because every morning I wake up I want to live my life. And I could sit there, I could pout for a while. I could just sit and look at the stars, but I'll tell you something, two weeks after my surgery I was walking back to work because I couldn't sit home and watch Oprah. I had to get back on with things. And I refused to believe the stats on the internet, whatever they say. Some are good. Some are bad. So I feel great. Now, there's one other thing you did that we should point out, and that is you decided that you wanted to do all you could to help healthcare be the best it could be and research for people affected by brain tumors, and so you've been very active as a fundraiser for Northwestern's brain tumor institute. And I guess you're a believer that bringing the specialists together who just do this, the whole team, pathology, surgery, neuro-oncology like Dr. Raizer, radiation oncology but specializing in brain tumor, and research, that that can hopefully help people do better. You know, you're right. Collaboration is so important, and I talk to a lot of people around the country who are at other hospitals who have had brain tumors and similar cases to mine, and I'm on boards here in L.A., I'm on a board in New York, but what I've found and am finding at Northwestern is the collaboration of 8

9 neuro-oncology and radiation and surgery and the nurses and the social workers, everyone is on the same page, and they believe in the person and not just a number, and that's extremely important. So you're right. In December 2005 while I was still kind of I'll say geeked up on medicine and Temodar on a blizzard night in December we held my first fundraiser, and it was a real success. And it really parlayed towards other fundraisers and the official NBTI because it's the right place to be at the right place in my life with the hand I've been dealt. Advantages of Seeking Specialized Care Well, I want to thank you on behalf of a lot of people for what you do. Now, Dr. Raizer, let's talk about this specialization. It's not common but people are diagnosed with brain tumors all around the country, and they may be out in the suburbs or out in the country, but what is going on at an academic medical center like yours where you've brought a lot of resources together for a brain tumor institute that people should consider at least going to a place such as yours, at least for a consultation? What advantage could that give? How much of a difference could that make? I think it provides a lot of advantages. I mean I'm obviously biased, but the when you have to get something treated you want to get treated by somebody who does a lot of them. So whereas in most of the community we have medical oncologists who primarily see all cancers, breast cancer, colon cancer, and then every once in a while a brain tumor will come through their door, I only see patients with various kinds of brain tumors, but brain tumors only. I do see some patients with systemic cancers like lung cancer or breast cancer that has spread to the brain, but that's sort of a minority of what I'm doing. So I'm really focused on one area. Because of that area I go to meetings that are focused on that area, and so you stay much more in the loop than going to, say, one of the big general oncology meetings where you're running to a lung lecture or a breast lecture, because those are the patients you're going to see day in and day out. Now, the other flip side of that is most of us at academic centers, and part of the reason I came to develop things at Northwestern was, is we do a lot of clinical trials. We're trying to advance the field, and physicians in private practice or small hospitals occasionally can be part of a cooperative group and maybe have one clinical trial open for a brain tumor. They're not going to have that many because they're just not going to have that many patients to justify having a study open, whereas we may have three, five, six, eight studies open at the same time for various stages of patients' disease. So I think you get the best of both worlds. You get people who specialize in one thing. We have more of a multidisciplinary program, again because the surgeons I work with, the radiation oncologists I work with, the nurses I work with, we're all focused on one area, whereas again in the community they're not likely going to 9

10 have a brain tumor conference. So I think it always behooves people to seek an opinion or at least make a consultation with somebody. And even if they want to get their care in the community because it's easier, they may want to touch base because I see a lot of people who get a treatment started and then come to see me for an opinion, and at that point I can't offer much beyond what they're already doing, whereas if I saw them early on I might have said, you know, you'd be good for this clinical trial. Or somebody will do a treatment with this modality and then they come see me, and I'm like, well, because you did that you're not eligible for any clinical trials until something changes. And it's not an intentional fault of the community physicians; they just offer what they can offer at where they practice. And I offer what I can offer which is, as I always like, the analogy is, when you go to a restaurant you want to have more than one thing on the menu. So I don't want one clinical trial. I want multiple clinical trials for people when they're first diagnosed for people if their tumor comes back the first time or the second time or the third time, you know, clinical trials for various tumor types. And we're actually now starting to develop, myself and other places, clinical trials where we try to use therapies that target specific aspects of tumor biology that will hopefully then give us information that hopefully may allow us to select the appropriate therapy based on what the patient's genetic tumor profile is. And a lot of the studies we're now doing in that area, sort of incorporating those type of analysis into them. Personalized medicine. Before we take another break I just want to make a couple of comments because I'm a leukemia survivor, happily, and I was in a clinical trial. And the treatment that I received years ago is what most people get now for my type of leukemia. So a couple of points for people that I want to underscore, and I'm sure Darren and Dr. Raizer would agree. And that is it's important when you're diagnosed with a life-threatening condition that you get smart. And obviously you have to find providers that you trust. And in the case of brain cancer, where it's rare, truthfully and there's variations of it, and Dr. Raizer was just talking about personalizing it to your tumor type and your biology, your exact situation, then you really have to at least consult with people who do that and a whole team ideally. And one other thing, Dr. Raizer, you're a medical oncologist, and I think people if they're diagnosed with cancer understand that and they understand the surgery, but I think it's important for people to understand that it starts with knowing what exactly you're dealing with, and there are sort of the unsung heroes in that area, and those are the pathologists. And so you have, would they be neuropathologists, Dr. Raizer, who help you know exactly what's going on with that tumor type, right? And you have that at Northwestern. Correct. So again at a community hospital you probably have a general pathologists, and because they don't get a lot of brain tumors they end up sending 10

11 it out for a second opinion, whereas 95 percent of the tumors I get I don't typically send out unless something maybe doesn't seem right and I just want to make sure because it influences treatment. And I'm actually a neuro-oncologist, so I'm neurology trained as opposed to a medical oncologist, which adds another slant of why I think neuro-oncologists are better at dealing with these patients because we're adept of the side effects of the steroids and the seizure medicines we have to use, whereas a lot of medical oncologists are not. They don't use them on a day-to-day basis. You're learning all the time. Right. So the neurologic aspects of things we're much more attuned to I. And all of us look at all of our own imaging as I know others in academic centers also do. We look at all our own imaging, and if it's questionable we talk about the neuroradiologists, who are also an integral part of our team in reading scans. And so it really requires I think a large effort to provide expertise and excellent care which at the end of the day is really to benefit the patients. Right. And the reason I'm explaining this, whether you go to the brain tumor institute at Northwestern or you live far away, but you seek out a place like that, I urge you if you're diagnosed with a brain cancer that's the kind of team you need. We're going to be back with much more. Now, you can ask a question of Dr. Raizer or Darren as well. We'll be right back with much or our discussion about brain tumors in our live webcast. You're listening to Patient Power. Treatment Thank you for joining us tonight. Now, if you're listening to our program on brain tumors, there's somebody in your family or yourself where this scary diagnosis has come down and you're worried, and so as we stressed in our last segment it's very important to get a specialized team on your side. Also we've done many, many programs on a whole variety of health issues sponsored by Northwestern. It's all in the ihealth area of nmh.org. So be sure to take a look at that. Also in two weeks we'll have a program with a cancer brain surgeon on the team at the brain tumor institute, and that's Dr. James Chandler, and he's going to help us understand specifically about surgery. But I wanted to ask Dr. Raizer about it too. If I've got it right, typically when there is an operable brain tumor surgery happens first. Is that right? And you try to be as aggressive as you can in the surgery because that makes a big difference in recovery in trying to beat or knock back the cancer? 11

12 Correct. On occasion there is one type of tumor of the brain called lymphoma that you make a diagnosis based on the spinal fluid, but barring that we always have to have tissue because even if it looks like something on a scan and we think we know what it is there's many cases I can think of where the pathologist gives me a report and it's different than what I was thinking of. I have a patient in the hospital now that we'd actually thought had a tumor that spread from somewhere else, and we did a biopsy and it looks like brain lymphoma, so without that somebody might have just said, well, it looks like tumor from somewhere else. We'll radiate his head. He's an older guy. The radiation would have actually hurt him a lot given his age, and we have the potential chance of maybe curing him with chemotherapy because of the type of tumor he has. So it's extremely important to get tissue. We always have to make the right diagnosis so that we can treat the patient appropriately. And then the surgeons try to cut out without harming function, try to cut out as much as they can, right? Right. And they have some tools where they can do that. We have something called diffusion tensor imaging which allows us to look at the motor fibers and the optic nerve fibers, and it tracks so that they know where to stay away from. We can do functional imaging which also tells us where the motor center activates or the sensory center activates or the language center is so when they go into the operating room ahead of time they kind of know where they want to stay away from. And particularly in some areas like speech they may do the surgery with the patient awake so they can converse with them. It's not wide awake, but it's sort of a sleepy type of state. So they have tools that can optimize the amount of tumor that they can take out surgically. Right. And Dr. Chandler in our next program will explain that in detail. Just a question about sort of intraoperative therapy, I know one of the approaches that's used sometime is actually putting in sort of a wafer that is sort of delivering drug, if I've got it right, right to the site. Is that correct? Correct. One of the older drugs we used to use and we still actually use for some of our primary brain tumors from gliomas is a drug called BCNU. And the thought was if you could put it into something and put it directly into the tumor you would actually avoid all the systemic side effects, particularly on the bone marrow. It's something that's been FDA approved because it's had some overall survival advantage, but if you look specifically at the glioblastoma population it didn't really seem to have as much impact as it was thought. So I haven't polled anybody, but most of my colleagues at the major academic centers actually don't use Gliadel wafers. I don't use them very often but certainly they're FDA approved. They can 12

13 be used, they do have some activity, but again I also do a lot of clinical trials and so using them would sort of eliminate people from going on to studies, and I know those studies are probably more important in the future. Right. This brings up a good point I want to stress for people too, and that is the art of medicine. So, Dr. Raizer, with your experience in neuro-oncology, things are FDA approved or not, things are tried elsewhere or not, but I think when someone goes to a specialist such as you they're really looking for your experience and your opinion as you kind of survey what's right for them. I want to bring something up and maybe you can comment on it. You know, you can drive down the road and you hear a lot of ads for technology, and sometimes it relates to brain cancer. So for instance these sometimes multi-million dollar devices to fire various kinds of radiation at your head to try to do surgery that way, do you have any comment on that? Because it seems like the treatment of an individual's brain cancer is more complicated than any one device. I would agree, and again most of these things, they all do same thing, a lot of them, called radiosurgery. They have different names like Gamma Knife, CyberKnife, tomotherapy, but they all essentially do the same thing. The one issue with that again is if it's used before you see somebody who may have clinical trial options is, you know, bumped out of a study. The other thing is in the absence of any other therapy they really don't probably add very much in most cases because we're talking about a focal treatment for a nonfocal disease. And so the analogy I give to patients a lot is if you have an iceberg sticking out above the water and you take the top off and you're in your boat and you kind of go, oh, it's gone, but if you keep going you're eventually going to crash into the part that's underwater. So trying to treat, using something that infiltrates brain much more diffusely and using a focal therapy at the end of the day probably doesn't do all that much. And at least when it was looked at in one study in newly diagnosed patients it actually didn't add anything beyond standard radiation and chemotherapy. So that's not to say I never use these technologies, I certainly use them, but I think as you pointed out it's the art of knowing when to use it and sort of the timing of it. My role is always maximize patients options. Somebody could always get radiosurgery, somebody could always get commercially available drugs, and so you want to be able to give them the most you can but not limiting their therapies. So yes, I think they're there. I think some people buy them for marketing issues and try to attract patients, but again I think when you have a team approach with people who see and do this all the time we actually think about the problems and not just do things on a broad level. 13

14 Advice for Others Well said. Now, Darren Latimer has been listening patiently as he waits for his plane in Los Angeles. Darren, so you didn't want to be an expert in brain cancer, but you've been living it and you've also got involved in fundraising. What advice would you give? There are people listening now where this has crashed into their lives or that of a loved one. What would be some advice to you? What's helped you? What's helped your family so that you could get the proper care and then hopefully move on? Sure. Well, looking back at it we took a pretty good route but I think what you have to do is you have to get involved early and often and get on this right away. Whether that's getting opinions, multiple opinions, single opinion, but get to a brain tumor center of real excellence and not a local hospital, or as Dr. Raizer said find people who do this for a living every day. And get educated. And if that means getting on the internet or talking to people, figure out how to get educated. And probably most importantly you've got to be your own advocate. You're your best advocate and this is a full-time job, and you have to manage it. If you ignore it won't go away. So it's got to be attacked and it's got to be isolated and it's got to be understood early, often and ongoing. And you don't have to get up and raise money every day for the cause, you don't have to go on walks for the cause, you don't have to read a poem about your story and your saga, but you've got to focus on yourself and you're your best friend in this and you and your loved ones have to be a team here. Now, Darren, Allison must have said to you at some point when you admitted that you were having headaches you weren't telling anyone about, why didn't you go to the doctor earlier? Why didn't you tell us? So there's somebody out there maybe now who is listening on the internet who has not told anyone and not going to the doctor. You said you even delayed going to the eye doctor for five months. What would you say about listening to your body and whether you tell your whole family or not at least getting checked? Well, listen. Listen to your body. There is no downside to doing it. Go early, get it done, get it checked out. Have either regular checkups with your regular doctor or fight this, and you have to listen to your body because it doesn't lie. And listen, this whole process is really an art based on science and you need the best artists. At Northwestern that's what we've got, so I'm really glad that's where I landed because early and often, we've been able to do this for four years and a lot longer than this. So that's where we are. But if you're thinking about it every day and you don't want to do it, you just have to get off the horse and call a doctor and do this because these are the guys who know what they're talking about. 14

15 Right. I agree so often and I know you're a busy guy, so many of us are, and you don't want anything to get in the way, but you were getting the message and you needed to finally answer it, and I know you're glad you did with a good team. Dr. Raizer, Darren mentioned about the statistics and before we take another break I just want to ask you about that. So people sit in front of you every day and they say, Doc, what are the statistics because everything I've read looks bad, but here's Darren who is doing well. Should somebody say, I'm just a statistic, or can they say, I am an individual and hopefully I can do well with the right team? What do you tell them? I'm actually one who doesn't really give statistics unless patients just say, I really want to know, because I actually don't find on many levels a whole lot of value to it. A, bursting someone's bubble doesn't really help. You want them to have hope to be able to fight. Secondly, as I always tell my patients, statistics are statistics, but they tell me how a group does. They don't tell me how an individual patient does. So I don't know how any one certain patient I take care of is going to do. I may have numbers in my head but I've got many patients that do and are doing a lot better than statistics would say that they're supposed to be doing. So they don't seem to have a whole lot of weight to me. Certainly, as you said earlier, many people do do what the statistics say, but many don't. We're not quite good enough yet to figure out who those people are and optimize their treatments, but I think the best thing to do is to say this is something that can be treated and there are people who are cured of it and that's the avenue we've got to take and not necessarily just say, okay, well, you know, this is your clock and, I've had many patients who sort of, you know the TV show Beat the Clock, will come back and say, okay, so I wasn't really supposed to be here, now I'm here, what am I supposed to do. I don't necessarily feel bad for them in the sense that they're still with us and I'm happy for that because that's what I'm trying to do, but it just holds to the point that statistics don't really point out what any one person does. Right. So well said. And so why are you here? Well, to enjoy your life and like Darren enjoy his family and he enjoys what he does and so keep on keeping on. We're going to take another break. When we come back we're going to hear some other comments before he has to run for the plane from Darren and some other advice for families dealing with this as he's been giving along the way. And also we'll pose some questions to Dr. Jeffrey Raizer, and you are welcome to send more in or call or an to nmh@patientpower.info. We will be right back. 15

16 Listener Questions Welcome back. We've been getting some questions from our listeners, and I want to pose some to Dr. Raizer. And then I'll also get some comments from Darren before he has to fly home. And I'm sure his family is listening and waiting, come on home, Daddy. Anyway here's a question I've often wondered about, Dr. Raizer. Angela from Denver writes in, well, what's the difference between a benign brain tumor and a malignant one? So there are certain tumors like meningiomas which people have and they sort of grow off the covering of the brain, which the vast majority of them, probably 85 percent or so, are truly benign in that if you cut them out they often never come back. Now, occasionally they are in spots where you can't get them all out, and they certainly can cause neurologic problems in patients. But then we also have low grade tumors, which sometimes surgeons say they're benign, but they're not truly benign because most low grades over time eventually start to change, become more aggressive. So again it depends on what the cell type you're looking at is. There are some benign tumors in the brain that grow in the brain and most of those are in the pediatric patients, but really only the benign ones in adults are meningiomas that we typically see. Most of the other ones might be sort of low grade tumors, but even those we have to follow because they do change over time. Now, some people have cancers, they're told it's inoperable. Does that mean they should give up hope? Again, first of all, inoperable to one person is not necessarily inoperable to another person. So again this goes back to getting second opinions from people that do this all day long. So if a surgeon says, well, I can't operate on that, that doesn't mean there isn't another surgeon who is well versed in operating on tumors in that certain location. So I would also get a second opinion, and I've seen many patients where a surgeon says, well, that's not really operable and we actually operate on them. And there's also patients where it truly is inoperable but sometimes after radiation therapy the tumor changes a little bit, and it actually then becomes operable because it sort of changes in its shape, allows the surgeon to now get into it and sort of clean it out. So it is kind of a moving target. But again I would always get a second opinion especially from people who do a lot of these surgeries because they're often much more comfortable in doing these procedures. And also we tend to be I think more aggressive because I think again somebody in the communities because certain of the tumors like the glioblastomas are very aggressive that some people often figure, well, they're bad tumors, and they're not as aggressive as they probably should be, and we know that the more you get out the better patients do. 16

17 Hope for the Future All right. I want to get a comment from Darren Latimer who wants to go home to his family. Darren, first of all, thank you for joining us, and I'm so thrilled that you are doing well. And I know you're running and you're biking and just doing stuff with the kids and your wife. That's just a blessing and that you can continue to do work that you really care about. But there are people listening who say, gee, I don't know if I can ever get to that point. I hope I can. What would you say to encourage them because, let's face it, you mentioned about the radiation you went through, you've taken a lot of medicine, you take medicine every day now, and you went through big-time surgery and a lot of scare when it started even before the emergency room. What would you say to them to maybe help them keep on keeping on? It may sound corny but if it gets you through, every night you lie down and you're okay, smile and go to sleep. Every morning you wake up and you're okay, smile and get up and start your day. This is the reality. This is where you are. This is who you are. And good things happen. Good things happen all the time. And I'm not this all optimist. I'm not the person whose glass is half full and not half empty. You can have bad days, but you know what, if you're here, smile at the things that you love and make you smile, and you'll figure it out. You are quite the well spoken businessman, Darren. We want to let you go, but I want to thank you so much for joining us. We want to wish you, Allison, and the girls all the best. And I want to thank you just on behalf of cancer survivors and our listeners for what you're doing in trying to help the various cancer institutes, specifically Northwestern's brain tumor institute grow and do the research they can so that hopefully these cancers can be routinely cured. Wouldn't that be great? That would be great. With the help of Dr. Raizer and his team, you know, they get closer every day. So I want to thank you for making me part of this, and I appreciate the opportunity to participate, and we'll be here tomorrow and the next day and the next day. Very good. We'll go running along the lake, okay, Darren? I'm going to look you up. I'll be there. Thanks everybody. 17

18 Thank you. Thank you, Darren Latimer for joining us. So, Dr. Raizer, that kind of testimonial must help propel you and your team that here's a guy, serious issues from brain cancer, and I know you say you can't predict who will do well and who won't, but when you hear this man return to his work life and his family life that must be an inspiration for you. Certainly it's what we strive for. I mean, you know, certainly like the patients some days are harder than others. If we've got a lot of patients whose tumors are coming back, but if I've got a patient who was supposed to live 12 months who lives five years or six years and they may ultimately lose the battle or lose the war I feel like I've accomplished a lot for them and their family. And I often portray this whole thing to patients that this is really a war that we're in, and we just try to keep winning as many battles as we can along the way. And I think every time we win a battle and jump another hurdle we extend the life of those patients. I know what happens if I'm not going to be aggressive. I certainly can't predict what's going to happen when I am aggressive, but there's a better chance that I'm going to extend somebody's life and their quality of life for much longer than if I take a much less aggressive approach. Now, I wanted to pose a couple more questions to you before we're done. Patricia wrote in and she said she's new to all this and she isn't know where to turn. She says she was diagnosed with something called a skull-based tumor a year ago, and her doctors have told her that it's too risky to remove or try to shrink and to just live with the side effects. And she has extreme daily headaches, and she actually doesn't have speech anymore, and she does know what to deal with. Skull-based tumors, I've heard of it, but I've also heard that there's some innovative ways to try to get at them now, too. Sure. There's certain kinds of tumors, something called like a chordoma or a chondrosarcoma, and there's even metastatic tumors from breast or lung that can go from a skull-based, or prostate is a common one. Again this goes back to our discussion before. Just because one person says you can't operate on it doesn't mean other people cannot operate on it. And importantly you can always biopsy something to make a diagnosis even if you can't completely remove something, but at least you can figure out what it is by taking a small nibble of it, and that can be done in almost any patient and any tumor type. And once you have that you can then come up with a treatment plan that maybe this is the kind of tumor that will respond well to radiation. I've never heard of anybody who couldn't get radiation so I don't understand the story, but if someone wanted to send me the records I would certainly be glad to look at them and see of we can help out in that sense. But I think this is a case where you've got to go to a major center that has skull-based neurosurgeons that 18

19 do a lot of surgeries to really assess this. Again it may be correct that it's not resectable, but I would bet it certainly could be biopsied and treated with radiation. I have not seen anybody who can never have radiation, so that aspect doesn't make a lot of sense to me. Well, these are very good points and I just want to underscore as sort of a patient advocate because I get to interview experts such as you from around the country, many, many from Northwestern, and there's some themes. So here's the consumer side of me, and it worked for me too. And that is, if you're diagnosed with a cancer, any cancer but certainly brain cancer, so your life is on the line. And so you have to go the extra mile and you can't just take one person's word for it. And if you understand as we described with Dr. Raizer earlier that there's an art to this, then you definitely want to have a consultation with a team that specializes in what you have. And then part of the discussion now as we're trying to do better in the treatment of brain cancer is are there trials that should be considered that might make a difference for me. So we talked about Darren and medicines that came into play for him are Temodar which has been around for a while, but also then using Accutane, an acne medicine, to help that treatment do better. And it has been doing better for him. Well, that was in a trial. So is there a trial like that or whatever future medicines may be, is that available to you? Might it be available let's say even only at Northwestern? And a lot of research is going on at your institution too, right, Dr. Raizer? It's not just what's happening in the exam room or in the surgical suite, but there are labs and there's a lot of work going on there too, right? Correct. I've been there five and a half years, and in that time we've grown, there's two of us now, we'll probably need a third neuro-oncologist pretty soon. We've brought on two researchers. One of them is working in one of the labs that are already here who is one of the neurosurgical residents who will probably stay on, but we now have three active labs looking at brain tumor stem cells, looking at the signal transduction pathways within the tumor cells, looking at mechanisms of resistance. One of these researchers who I've collaborated with and Dr. Chandler and others to design a study, will actually treat patients, take out their tumor and see if a drug can offset these resistance pathways to understand if this is a way of trying to get better tumor control and get better outcomes for our patients. So it's really trying to tie in the science to the patient at the end of the day, sort of bench to bedside kind of dictum that we often use in medicine, to try to sort of do that, and I think ultimately that's going to be the way of the future. 19