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1 Sarcoma: Patients and Doctors Working Together to Fight a Rare Cancer Health Radio Network February 4, 2007 Chappie Conrad III, M.D., F.A.C.S. Douglas Hawkins, M.D. Jared Holmes Please remember the opinions expressed on Patient Power are not necessarily the views of Health Radio Network, our sponsors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. Please have this discussion you re your own doctor, that s how you ll get care that s most appropriate for you. Introduction Good morning wherever you may be all around the country and around the world. I'm Andrew Schorr. Welcome to Patient Power here week after week talking about serious health issues, serious diagnoses, and how can you or a loved one get the best. So typically we connect with leading experts who can help us in a conversation over an hour or so. Today we're talking about a cancer that is not common, but certainly it's a serious diagnosis. What do we know about it, what is it, and that cancer is called sarcoma, and it can affect adults certainly and sometimes children. We're going to learn about that as we talk to people who have been affected by it; a patient, an adult patient, Jared Holmes who we'll have with us; and then also we'll talk with a mom who unfortunately their child died of sarcoma but then that woman, Melissa Hill, became very active in trying to help other families where they may be facing this, and we're going to meet two physicians, both from the University of Washington; Chappie Conrad, and he is really the "king of sarcoma" if you will. Many people know him around the world. He is a professor and Co-Vice-Chair of the Orthopedic Service at the University of Washington Medical Center. He's also part of the Seattle Cancer Care Alliance, and of course he's very active at the Children's Hospital here in Seattle. He will tell us more about where we are with sarcoma. He's a sarcoma specialist. Also we have another sarcoma specialist in the pediatric setting, and that's Dr. Douglas Hawkins, and he's also associated with Children's Hospital and Regional Medical Center here in Seattle. First I want to talk to Dr. Conrad. Dr. Conrad, so sarcoma, you know, people know breast cancer and they know prostate cancer and they know that leukemia and often those heart-wrenching cases where it affects children, and fortunately we've made a lot of progress there. What is sarcoma? 1

2 Sarcoma is a malignancy of the connective tissue. I like to tell patients it's the tissues that hold you together. It gets treated by how fast it grows, and most of them occur in adults, a percentage of them occur in kids, and they occur either in bone or soft tissue. Okay, so how does this show up? Let's say in an adult, what would be the symptoms they would see? One of the challenges for sarcomas is that they just show up as a soft tissue mass and frequently without pain. So if you just have an enlarging mass in your muscle or something in the soft tissues or an enlarging mass around the bone, that's the only symptom you might have. Jared's Story Okay. We're going to meet someone like that. Jared Holmes is calling in from the San Francisco area. Jared is on the board of The Sarcoma Alliance, which has been great about getting the word out today about it. So Jared, you're about 30 years old now? Yes, 30 years old, 31 in a couple of months. Okay. So Dr. Conrad talked about feeling a mass somewhere in your body. You had that, right? Yes, my sarcoma basically presented itself as I started have pain when I was 16 years old, and then I had surgery on it when I was 23, and they took out some piece of a mass that was considered benign at the time. The pain still was there, and about two years later it started arising. I was playing basketball and got my arm hit, and I couldn't lift up my shoulder for about two weeks and then from there, the same area that had been affecting me since I was 16, started to swell up dramatically over the next four to five months. Okay, and this ended up being a diagnosis of something called synovial sarcoma is my understanding. Yes, exactly. I had been trying to get in to see specific doctors who would be able to diagnosis it a little bit better because they thought it was just a recurrence of a benign 2

3 tumor or a benign vascular malformation that was going on a couple of years ago, and we ended up doing a biopsy after and it looked like I had about four different elbows on that one right elbow, and that's when they gave me the diagnosis of synovial sarcoma. Okay, and you ended up being seen and continue to be seen I guess by a sarcoma specialist? Yes, I was actually very fortunate living in San Francisco. I had moved out here from Nebraska a couple of years prior to that, and I'm very fortunate to be around a community that did have sarcoma specialists, Dr. Kramer and Dr. Richard O'Donnell, but that also didn't stop me from getting a second opinion down at M.D. Anderson just to make sure we were all on the right page. Okay, and those doctors that you mentioned are at UC San Francisco? Yes. O'Donnell is at UCSF and Dr. Kramer is kind of in between CPMC and UCSF still. Okay, so you got to the right people, you got a second opinion, and then you ended up having surgery and chemotherapy. Did you have radiation as well? Yes, basically right after I got diagnosed, it was a pretty freaky experience of course, and I went in to see Dr. Kramer who referred me to Dr. O'Donnell like I said, so I had a medical oncologist who did the chemotherapy and then a surgical oncologist, who was Dr. O'Donnell, and I ended up having four rounds of chemotherapy that lasted from October to December. It was Adriamycin and iphosphamide, and I basically did that for four days on, two weeks off, four days on, and two weeks off. I did that from October to December just to basically get some effect on the tumor itself, kind of shrink it a little bit, just because the whole idea when they first saw my arm they basically told me that it was probably going to have to be amputated, which was a very scary thought at being 26 years old. Sure. So, I was to bring the tumor down and then have surgery, which is what happened. I had a pretty dramatic surgery. They took out the tumor, and they took out part of the radius as well, and then they took a piece of my stomach and moved it over there to basically 3

4 cover up what was left there, and it sounds pretty scary and pretty frightening, which it was, but it's actually been a very functional arm at this point. People hardly really even notice. So I basically had chemotherapy, surgery, radiation, and then two more rounds of chemotherapy after that. How are you doing today? I'm doing great. I'm doing, knock on wood, you know, it is three-and-a-half years since my last day of treatment, which was August 1, 2003, so it's fantastic. I'm just going for quarterly checkups, do scans, my MRI and CT scans every six months, and I'm doing great. Sarcoma Diagnosis and Treatment Options I'm delighted Jared, and I wish you well. Now Dr. Conrad, put this in perspective. I'm sure for some people it's great if that's the result, and we can go on like that. I know it isn't always that way. Put it in perspective for us. In the adult world, patients who have high-grade soft tissue sarcomas have a 50 percent survival with good treatment and something less than that without a good response to treatment, and our philosophy in Seattle has been early chemotherapy, and Jared's a great example of when that works well how well that works. We've learned that in adults and in children the protocols are actually better in children than they are in adults because they're more formal in children in, which there are a small percentage of the adults, and I'm sure Dr. Hawkins can say a few words about that. Okay, Dr. Hawkins, a comment on the situation in kids. Well, Chappie's right. Cancer is much more common in adults both for sarcomas and other cancers in general. There are about 12,000 adults diagnosed with sarcoma every year in the United States, but only about 1200 children, defined as less than 20 years of age, are diagnosed in the U.S., so it's much less common. We do see somewhat different types of sarcomas in children. They're more likely tumors like an osseous sarcoma or rhabdomyosarcoma or Ewing sarcoma. Those are all very aggressive tumors that are uniformly treated with chemotherapy, and the treatment has been developed through 4

5 cooperative groups that have tested various combinations, different medication doses, to develop the best standard treatment for children with those sarcomas. Okay. So where are we now for treatments for this illness, Dr. Conrad? I mean, you know, we hear about progress in breast cancer and so many of those. Where are we here? We have had good success with sophisticated imaging using PET scans to evaluate response. We can tell who needs chemotherapy in the adult world with a sophisticated PET scan. We can tell who's having a good response within two months of treatment, which is an enormous improvement, but we do not have good drugs for treating older patients. We're going to take a break, and we're going to get a lot more specific about that as we continue our discussion on a rare cancer but a troubling one and where we have a long way to go, sarcoma. It's all coming up as we continue on Patient Power on HealthRadio Network. Stay with us. Just so you know, the name of this show is Patient Power, and in our healthcare system today, being a powerful patient or family member is really critical because when you talk about some of these serious illnesses, if there is specialization in medicine, and there is, and if there is progress in medicine, and hopefully there is and in many areas certainly there has been, then you want to connect with it. So this cancer we're talking about today is a wonderful example, sarcoma, where I have two experts in front of me here from the University of Washington and Seattle Children's and then we heard about some at UC San Francisco, and there are others around the country. So if somebody gets this diagnosis of sarcoma, or for you it may be some other serious diagnosis in the family, you want to connect with them, and I think you heard Jared say he actually went to two centers to get a second opinion, and then they were all nodding their heads, and there was agreement, and then he went ahead with treatment, and he's leading a pretty good life. So let's go back to Dr. Chappie Conrad who is a world-renown sarcoma expert, and he's at the University of Washington and Seattle Children's. Dr. Conrad, you mentioned that you're getting pretty good at imaging and seeing these tumors and seeing the cells and even with PET scanning now looking to see whether the treatments you're trying are working biologically and how are they affecting the cells, but do you have the range of the treatments you wished you had for sarcoma? 5

6 We definitely do not. There are some improvements in the adult world and in the pediatric world, but we clearly need better drugs. The cure rate gratefully in children is quite a bit higher than it is in adults. It's about 75 percent in kids in five years. In adults it's barely 50 percent even if good treatment for a high-grade sarcoma, and that is a painful scenario for us. Melissa's Story and the Northwest Sarcoma Foundation Okay, well we're going to talk about how we work on that. Now sometimes people become advocates. Just people, normal people, not healthcare providers, they get baptized by a serious diagnosis. Hopefully for themselves or their loved one they do well, sometimes not. I want to introduce Melissa Hill. Melissa is on the phone with us joining us. I don't know if you're from Portland today or on your way to a meeting in Seattle or in the car somewhere Melissa, but welcome, and I know that your child died of sarcoma, but it also then as sort of a legacy for you and has made you very active involved with a Northwest Sarcoma Foundation, right? Ms. Hill: Yes. I am. Okay, so if you heard me, Melissa, your daughter, was it your daughter Your son died of sarcoma? Ms. Hill: That's correct. Osseous sarcoma. What was his name? Ms. Hill: His name was Jackson. And Jackson died at what age? Ms. Hill: He was 12 when he passed away. He was diagnosed when he was 10 years old. 6

7 So you had the rough go and the hope that maybe the treatments would work and that as we heard from Dr. Conrad, often sarcoma is treated and successfully in children but not always. So you decided to go on, and I mentioned about people connecting with experts. Would you agree with that that you really need to pair up with whether it's your advocacy group, The Sarcoma Alliance, or others to try to find out where there are specialists to help you get the best care? Ms. Hill: Absolutely. We were fortunate that we were referred to Chappie right away and felt like we had excellent care, and I do agree that you need to do your research, and research into foundations, who can help you. Okay, what is the website for your foundation? Ms. Hill: It's So there you can help people, and your organization is not just devoted to children with sarcoma. Ms. Hill: Correct, adults and children. And then there's The Sarcoma Alliance, and there's another one too, right? Ms. Hill: There are many, many; the Liddy Shriver Initiative, Okay, those are all, if you search on sarcoma and start with these organizations, they can help. So Melissa, Dr. Conrad was talking about the need for more treatments. So what can families or those of us in the public do to try to help make that happen? Is there something, can we speak out somehow, or can we put pressure on the drug companies? Can we be in clinical trials? What can we do? 7

8 Ms. Hill: Well partially that's the reason why I became involved with Northwest Sarcoma because Jackson did not have a good response to chemotherapy, and so his fate was decided right then, and as Chappie alluded we need better drugs to fight this disease, so I'm hoping personally and through our foundation that we will begin to have a steady drumbeat for better drugs. I want to go to Dr. Hawkins here. So I didn't officially introduce you as well as I could have. Dr. Doug Hawkins is a sarcoma specialist. He is Associate Professor of Pediatrics at Children's Hospital and Regional Medical Center in Seattle. I don't know if you were also involved in Jackson's case. I know you treat many children. So while it's rare, I would think there are not many specialists like you, and then if you have a child, 1 of 1200 a year in the country, you want to get to somebody like you. The care of children with sarcoma is very complicated starting with the diagnosis, which is often difficult as our first person who called in illustrated, and then the therapy is complicated. It's not something done by a single physician. Not a surgeon or oncologist or radiation oncologist treat exclusively patients with sarcoma. It really requires multidisciplinary care, and that multidisciplinary care is difficult to provide outside of centers of excellence, centers that see a number of cases of sarcoma every year. When we are only talking 1200 pediatric cases every year there are very few places that can offer that. We're fortunate in Seattle to have a combination of surgeons and radiation oncologists and oncologists who can provide that level of care. Advocating for New Medicines and Treatments I do want to talk a little bit about that issue of new medications. We've had tremendous advances in understanding the biology of cancer in general, and sarcomas in particular. The real challenge for us now is to translate that understanding of the biology into new treatments. It's great to know what the molecular changes are, but what we really want are medicines that we can give to real people that change how their cancer behaves. How do we get there then? What can we do? That's a big issue. I think when you talk about rare tumors there's not a lot of lobbying power for sarcomas. It's an orphan disease by government definition, and so we need advocacy groups like Northwest Sarcoma Foundation to put pressure on the government to pay attention and provide funding for research that involves sarcomas. We need grass roots efforts to raise money to support that kind of research. 8

9 You know, when somebody is diagnosed with a serious illness, and maybe it's one like this that you've never heard of or didn't know anybody with, you want to deal with the critical issues of treatment but then going from there the next step is then how do you work with a healthcare team on that immediate situation, but maybe you're in a community forever, and Melissa, I know that's what happened with you. You said, 'Okay, this has changed my life. Jackson wasn't with us as long as we would have liked for sure. How can I go on and make a difference?' And so Melissa I know you've been very devoted to that, and that's been terrific. And Jared, maybe we can get you punched back on there and talk to Jared Holmes. Jared, you too decided to be on the board of The Sarcoma Alliance. Jared, if you're with us, how come? If we can get Jared back, but I know he's going to tell the story of how he was diagnosed with this and wanted to make a difference. Dr. Conrad, a comment from you? One of the things that's happened that I think is really exciting are these patient advocacy groups, and there's in my opinion a big group on the west coast, which is The Sarcoma Alliance, a big group on the east coast, which is The Sarcoma Foundation, and a bunch of regional groups and some electronic groups like the Libby Shriver Group, and those have been of huge assistance to patients to know where to go. Sounds like we're going to take a break, Dr. Conrad. We're going to talk more. Be with us as we continue on Patient Power right after this. Thanks for being with us on Superbowl Sunday and listening in on HealthRadio Network. Andrew Schorr here and always grateful that you're here. We have about 180 hours of talk shows and replays on our website, Not dot-com, not dot-org, but dot-info, and the replay of this program will be up later this week. Listener Questions Here's a question we got from Beth, and I want to address this to Dr. Hawkins who's a hematologist oncologist. So Beth writes, 'My sarcoma oncologist does not believe that the mets, the metastatic cancer, removed in three surgeries,' and she said two surgeries were on untreated nodules, 'need to be tested for hormone receptors or P53 damage,' and you better help us understand what that is. 'What could be his reasoning, and he's never forthcoming when I ask questions.' Dr. Hawkins? 9

10 I couldn't agree more with the disclaimer you ran about giving out medical advice over the radio. I think this question illustrates the point I was making earlier, which is we've learned a lot about biology but that doesn t always translate into a change in treatment for people. So, for instance, we know certain cancers are controlled by having receptors to hormones, and that may alter the treatment in diseases like breast cancer. We don't know clearly whether that's the case in sarcomas, so we certainly could do a test, but it may not change the treatment for an individual patient. Then the same thing with a gene like the P53 gene, which is frequently altered or mutated in a variety of cancers, and that can certainly be tested for, but we don't know how to use that information to change the treatment of an individual person, so that may be what the That's a good point, and I'm an almost, thank goodness, an 11-year leukemia survivor, and actually this P53 in my leukemia, CLL, comes up. So what I see happening, and Dr. Conrad, tell me if this is right, I see that there's a lot more furniture in the room in a disease; more diagnostics, understanding genes, stuff like that; that they're there, but what do you do with that information? Maybe it's going to be over the next five or ten years we begin to understand do we treat some people with this versus that? Do we treat them earlier? If they have this genetic mutation, that puts them in a different group? So where are we with that because otherwise it crazy making and patients talk to patients. If you have something like sarcoma, 'Oh P53, dah, dah, dah, and the doctor should do this.' And she was saying her doctor wasn't forthcoming. Well maybe he could have said just like you did or she, is well that's interesting information but I don't know what we'd do differently. But Dr. Conrad, maybe a comment on that? I guess I have two comments. You need to champion your care, number one, clearly, and you need to be happy with the information you're getting. Where to get that for a sarcoma patient is a gigantic challenge because there aren't a lot of treatment centers in many of the communities, especially for the adult patients, and so if you're not happy with your care, you need to seek the resources of some of these advocacy groups to see where the different group centers are. We have two huge challenges with sarcomas. One is that it's a small incidence disease. It is dwarfed by breast cancer, prostate cancer, and lung cancer, and the other is that there are sarcoma subtypes, and the subtypes do behave a little differently to different drugs and are sensitive to different drugs, and so careful evaluation of every patient we treat is critical, and we're in the middle of trying to discover more effective therapies that are related to both the imaging and the biology advances we've made over the last ten years, and that's where we are today. 10

11 Okay, so we're kind of in the middle of it, kind of like I talked about the analogy of the furniture. There's more furniture in the room but you trying to figure out, Dr. Hawkins, where the furniture goes, right? Oh absolutely. Information itself isn't useful unless you know how to interpret it, and that's the real challenge, but I think your best hope of getting the information interpreted accurately is to go to a center with expertise, and as Dr. Conrad mentioned, to be your own advocate and to keep asking questions until they're answered to your satisfaction. Okay, now patients talk to patients, but we're learning now that there are subtypes of diseases, sarcoma is no different, so if somebody said, 'Well, I had this treatment.' And then somebody says, 'Well, I'm not getting that.' That doesn't mean that they're not getting the right treatment for them, right? Absolutely not. There are many different types of treatment for every subtype. One of the good things about patient advocacy is that the subtypes are getting into little rooms and talking to each other, and that is nothing but good for patients because it increases the communications and they become more aware of what the choices are. So, you all are sarcoma specialists. So people get to you, and because they have a more rare cancer they want to connect. So people can be a little daunted, Dr. Conrad. You're like one of the specialists of the world and you're one of the heads of orthopedics here at the University of Washington. You still encourage questions though. Absolutely, and you don't have to be treated in Seattle or San Francisco to have a good result. Your local oncologist just needs to be connecting to somebody in a center and be interested in the protocols for treatment to be getting good results. Any comment from you? Again, you're a subspecialist, Dr. Hawkins. You invite questions in parents whether it's Melissa or I've had friends with a child who has sarcoma. They're just destroyed emotionally that this has happened to their kid, and often they went to the pediatrician, and the pediatrician says, 'Oh it's probably nothing, and 99 times out of 100 is nothing, but this is the one time when it's really something serious. Yes, absolutely. It's probably 99.99% of the time it's nothing. I think you really hit on the issue that we have to engage our patients and our families in a partnership in their care, 11

12 and that involves not just providing excellent medical care but also providing answers to questions and support and all those other parts that are important for someone's recovery. Okay, so there we are with these emerging situations in sarcoma. So we talked about people being part of a community, you encourage people connecting with others, asking questions, and then this idea of second opinion, Dr. Conrad? So they may be in, well I always use this phrase "Yuppetsville" but they may be far away from a sarcoma center. So, to get a second opinion do they need to come, and if they do that doesn't mean that that's where the care has to be delivered; it can be back at home? Precisely. If you live in "Yuppetsville" and you have a sarcoma, you should have a onetime consultation with a group that's experienced with sarcomas and let them assist with the declaration of what kind of a sarcoma you have and what the best treatment should be, and then you can go back home and get that treatment. Okay. So typically if somebody's going to have cycles of chemotherapy, then that can be delivered at home? Right. We frequently, and it's a huge challenge for us in the northwest because of our territory. There are not a lot of options for some patients in terms of getting here. Some of these groups can give them funds for a consultation. Okay. We're going to take a break. We'll be back with more of Patient Power right after this. Initial Treatment Considerations We re talking about a rare cancer, sarcoma, but there are some lessons here for any illness really of how to proceed. So Dr. Conrad from the University of Washington who's a world-renown sarcoma expert was talking about the idea of, you know, you want to get the cancer cut out right away, and Jared, if you can rejoin us, you're listening on the phone, I'm sure for you, a man in his 20s, wanted to play basketball and wanted to just deal with it. The idea is you wanted to get the cancer out right away. Jared, are you there with us? Yes, I'm here. 12

13 Was the temptation to just let's have the surgery, let's get on with it, let's cut the thing out? Absolutely. I mean, it was like you had said. I played basketball in high school and a little bit in college. I'm a very active person, and so being limited and having that pain in my arm and then also finding out that it was cancer, absolutely the first thing I'd want to do is get it out. So there was a lot of immediate planning right away, and luckily I got in front of those doctors and we came up with a plan, but that was the important thing was to come up with a plan beforehand and getting as much knowledge as possible. Dr. Conrad wanted to comment on that. In women with breast cancer, anything, let's cut it out, but Dr. Conrad, you're saying, 'Do not pass go and go to surgery;' that's not the best plan. It's not if you have a high-grade tumor, and deciding who has a high-grade tumor and who doesn't is a major challenge for even the experts sometimes, and that is where a lot of events happen that will cost patients a lot of disease success, and that's why the initial consultation, you know, in trauma we call it the golden hour; I like to call it the golden month. You get an initial consultation and the first month or two I think that's critical for determining the proper pathway for care and whether you need chemotherapy. Okay. And Dr. Hawkins, sometimes, and I think it was mentioned. Jared I think maybe you mentioned it. Increasingly in cancer people will have chemotherapy first to shrink the tumor and then come back with surgery rather than the old way where surgery was always first, right? Yes, that's definitely the trend for many sarcomas. It's been the pattern for most pediatric cancers because they are much more chemotherapy sensitive than most sarcomas seen in adults, and the benefit of that is to allow surgeries which may have less long-term side effects. You may be able to plan a surgery more carefully. You may be able to take out less normal tissue and end up with a limb that functions better than if you did a very big surgery at the beginning. Okay folks, I'm going to repeat something that some of the leading cancer centers promote in advertising and their messaging, and that is, and the doctors here were nodding their heads when I spoke about it earlier, and that is your first shot is your best 13

14 shot, so you want a considered opinion with experts that you consult, maybe more than one on what's the way to attack it. Also there are some rare exceptions, inflammatory breast cancer maybe, but for most cases you have time, right Dr. Conrad? This cancer's been developing for awhile. We have a crude saying that, you know, infections change every week or two, but the vast majority of tumors don't change every couple of weeks, they change every couple of months. Okay, here's a question we got from Elizabeth. I'm not sure where Elizabeth is, but she said, 'I have a question I'd like to be addressed. It has been my understanding that chondrosarcoma does not respond to chemotherapy but recently learned that in certain cases it is used. What is the criteria and which chemotherapy is used in chondrosarcoma, and is it always when it's been metastatic?' Who wants to take this one? Dr. Conrad. Chondrosarcomas occur, the vast majority of them, in adults. Unfortunately they are absolutely not chemotherapy sensitive. We usually use chemotherapy after surgery in that scenario because we have had very poor success for getting a response to chemotherapy before surgery. And she says, 'What is the average extension of life compared to surgical removal of tumors or lobectomy or CyberKnife?' and I'm not even sure what CyberKnife is. CyberKnife is highly focused radiation therapy, the gun in the brain tumor world and now used for tumor patients. We use radiation therapy for local control at the primary site where the tumor started. It's always a good adjuvant treatment, and our own personal philosophy most of the time is we use it after surgery and the initial chemotherapy dose. In chondrosarcoma it becomes more important because we just have such a hard time getting a response to chemo with chondrosarcoma. Okay, so there you are. That makes chondrosarcoma basically a surgical disease basically. 14

15 Okay. All right, so here you are. You have a subtype of sarcoma, so that's where they need to sit down with someone like you and say, 'For my subtype, what's a good plan here,' which may be very different from somebody with a different type of sarcoma. Exactly. So, Dr. Hawkins. You're kind of the chemical guy being an oncologist, hematologist/oncologist. Are there drugs for other cancers that may help here, just briefly before we go to the break? I think that most of the drugs that are tested are tested in common cancers; breast cancer, lung cancer, colon cancer; and then they trickle down to children or to sarcomas, and the question is will it work? I think chondrosarcoma is a good example of a disease for which none of the standard chemotherapies work, but maybe some new medicines that are being developed in the future might work. I've got my fingers crossed on that. We're going to take a break and come back with some final comments from our two University of Washington sarcoma experts, Dr. Hawkins and Dr. Conrad, and then the replay will be on later this week, and we always invite your questions. Stay with us. We're coming to the end of our hour on sarcoma on Patient Power, but thank you for listening. The replay will be up later this week, and also write in with questions, and we'll see if we can get back with Dr. Conrad and Dr. Hawkins and get other questions addressed for you. I want to thank the Northwest Sarcoma Foundation, Melissa your group, for letting people know, and also The Sarcoma Alliance, and there are some other fine organizations as well. Jared, I want to wish you all the best. I know you're on the board of The Sarcoma Alliance. Go for it, okay Jared? I will. Thank you for your time and if I could just say something; at The Sarcoma Alliance we have what's called an assistance fund which will help with up to one thousand dollars, and we'll help you get to a sarcoma center for a second opinion if you happen to need one. There you go. 15

16 That's right. You can get some help. And Melissa, all the best to you my dear. You're a wonderful advocate so thank you for all you're doing. Dr. Conrad, you were saying that what's happening now is the advocates and the experts like yourself, the physicians and other health professionals, it's all coming together. You're in it together. We are very much in it together, and it's very exciting for our "experts" with an orphan disease to have patient advocacy groups coming to the international and the federal meetings and promoting and pressuring our funding organizations for more pilot studies for drugs and effective therapies for sarcoma patients. Dr. Hawkins, you endorse it too, right? Absolutely. The progress rate has been too slow, and we need everything, all the forces we can muster to improve the rate of progress in treating this disease. So folks, if you think about where the physicians and other experts wearing the white coat and you just said, 'Yes doctor, yes doctor,' now you hear people like that are saying, 'We're in it together. Let's all roll up our sleeves and work together.' And I think it's exciting, and hopefully it can make a difference in this serious cancer. Jared, I wish you well. I know our producer, Jamie, her brother is living with sarcoma and doing well, and I hope that's true, and Melissa for so many of the kids who are affected by it and their parents, I hope it works out well. We will have the replay as I said coming up later this week, and we'll try to get these doctors back and post more on the website. Remember, knowledge can be the best medicine of all. Andrew Schorr signing off. Please remember the opinions expressed on Patient Power are not necessarily the views of Health Radio Network, our sponsors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. Please have this discussion you re your own doctor, that s how you ll get care that s most appropriate for you. 16