 All right, so now we have some great resources for all of you and I know what we're going to learn a lot from each of these individuals here who have volunteered to share their story. And this will be very informal, but I think we'll start at this end and we'll allow each of you to just take a few minutes to share a bit about your history with kidney cancer and from the beginning to where you are now and then we'll allow them and use some time to ask each one some questions. I'm Dave Muanta. I'm from Omaha, Nebraska, actually just outside of there, but Omaha is the big scene. I have really, really taken, you know, I'm going to take a lot away from this. I've never been in an event like this where particularly where doctors could tell you something and you understood it. So I really appreciated that. My story is I was retired from the Air Force after being a pilot for 23 years. Pretty much thought I was bulletproof. Looking back, I actually failed my last two flight physicals and my retirement physical for blood and urine or protein as I like to say. And each time they called me back, did the urine test again. It passed. Good to go. You know, nobody ever thought to look at it and see if that was an indicator or anything. So about a year and a half after I retired, I had my right kidney removed. I slid a scar along the ribs and that lasted for about 16 years, 16 years, 15, 16 years. I don't see that young lady out there asked about the mother. But then I foolishly in between there, I was a pretty good smoker. In between there having the kidney removed and about like say about five years after that I had a metastasized, I just had gallbladder attacks and I went in and did the ultrasound and they said I had a bunch of stones in my gallbladder and did the blood test and Doc said there's something wrong with your pancreas. And so I have the top of the pancreas, I've got about .6 centimeter size tumor, that was about 1.4 centimeters. I did IL2, I swear by it, thank you Doc for being one of the guys that does it. I had, I did the first week, I don't know if you're, those of you who aren't familiar with it, you do a week's worth of treatment every eight hours, you're up for a week, you go back in, you do that again, then you take a month off and you can go back and recycle. I just did one month's worth. I did 13 treatments the first week and I did 12 the second. It reduced it down to about .4. And a month later went in, which is what I liked about IL2 and why I opted for the treatment was because I'd find out if it worked relatively, or rather quickly and got the size, it didn't go away, I was a partial responder, you know, and I was content because no growth was good growth. So then foolishly went on smoking and last fall went in again because it had grown in the last two years about .7 centimeters. So I went in last fall, did IL2 again, I had those wonderful side effects and it's down to about .3 centimeters and I'm crying desperately to quit smoking, I'm making headway, I'm going to see a hypnotist hear this next week, but anyhow, ask my sir, I've got two rounds of IL2, it beats you up, but in my opinion it's worth it and my philosophy is I'm going to die with this, I'm not going to die from it. I think everybody who's had cancer has fear of getting cancer again, you get an ache, you think oh, is that it? You can let it dominate you or you can wake up every morning and say thank you lord for another day, I'm going to go out and love my kids, go out and have some fun. Otherwise it'll just drive you nuts, I'm going to pass them out. I wanted to make sure I heard you right, you said you had a lesion on the top of your pancreas? Yes, but how was your kidney doing at that same time? Kidney's fine. My one and only kidney is, of course when you do IL2, that's the concern, most people are fortunate to have two kidneys and when you have one, IL2 is a little bit rough and it can shut down the kidney temporarily. So what were your stage dap for your kidney? Kidney was stage two. Okay, stage two. I want IL2, you're talking about young people. I was 60 when I did it the first time and I'm not young, I'm not young. I'm not fit. I did past the stress test, past the pulmonary test. When the oncologist told me he was going to do a brain scan, I told him you're not going to find anything, there's nothing there. Okay, thank you. I had my kidney removed about the same age as stage three. I was amazed at how many people have one kidney after I had that taken out and how many people are born with one kidney. I ran into somebody that had three. I'll take it. The oncologist, you're an anomaly. If you've seen the IL2 slides, partial responders, you're down there at about 20% and you're running forever. I was doing fine. Like I said, I don't think I was an anomaly. I think I was stupid. But like I say, a partial response for me is no growth is good growth. I'm content. It was confirmed. Biopsy. And they had the, actually, the pathologist at the military hospital registered my tumor. I guess, is that the right word? Anyhow, or other, when they did the biopsy of the growth on my pancreas, within a day and a half, they found the chemistry on my original kidney tumor. And it was the same. No, I don't mean to be flippant. Okay, so basically the people with hearing aids aren't hearing what you're asking. Okay. My name is Kathleen Shelley and I was diagnosed in the year 2004 with stage IV, grade IV renal clear cell carcinoma. As it happened, I was right in between when the surge came for the targeted therapies. I was very fortunate. I had a full left nephrectomy, which is all pretty much what was done then. But also I had a very large tumor, it was 13 centimeters by 7. And it was good to have it out of there. I was one of the people in Dr. Thompson's original SU-Tent trial that was here at SCCA. I was assigned to the control arm, which was interfering alpha. And I was on that for two years before it recurred. After that, SU-Tent had just been approved, so I went on SU-Tent. I was on SU-Tent for the next eight years. All of this without NAD, NAD. It was a wonderful thing. Because it was stage IV, grade IV, very aggressive cancer with sarcomatoid features, they wanted me to stay on it. And I did. I stayed way on it. But in the last couple of years, Dr. Thompson and my oncologists were encouraging me to maybe see what life would be like without it. And so a year ago, I went off all the drugs. It's been a fun year. I got some energy back and started doing wonderful things again. Life on SU-Tent was certainly, I went through all the side effects and I had them. We controlled them. They're all controllable. Life is good, but it's better when you're not on it. And I have enjoyed this year. But I wanted to talk to whoever was talking about frequent scannings and all of that. And that is that I get monitored very closely because it was such an aggressive cancer. And so every six months, I have a PET scan. And the PET is pretty good at picking up metastasis. And so, in fact, that's how they found my metastasis in the first place. There was a PET scan that came to Swedish in 2004. And that was where they first found out three months after the surgery that I had metastasized. I do it without contrast because I only have one kidney, but it is still pretty effective. And so I do that as my routine every six months scan. My philosophy in looking at this is that, yes, maybe there is a problem in future years with more cancers caused by the radiation. But I am 68 years old. And when you consider that these are all long-term problems, if I find that I have cancer that was related to the radiation when I'm 88, I'll just be real happy to be 88. And I want to make sure that if it recurs, then I can step on it and not let it go to where it's running away with me. My treatment at Seattle Cancer Care Alliance has been very important part of my life. It's nice to see John here. We've known him 10 years now. In September, it will be 11 years since my diagnosis. At the time, because there was so little available, it was pretty much a death sentence. They told my family 18 months, 10 years, that kind of thing that people aren't supposed to ever say to patients, right? But they did. And here I am. If you're recent and new to this kind of thing, take hope. God blessed me with a good response to sous-tent. Not everybody has a good response to each or any of the drugs, but there are a lot of things available out there. And don't give up if the first one doesn't work for you. I have one for Kathy. Did you tell them about your trip to Connecticut? Well, because I was on a sous-tent for so long, about four years ago, I think it was. Pfizer took me out to Connecticut where they have their headquarters and said, would you address our researchers? And the reason I went out there was to thank them for developing a sous-tent and to encourage them to keep on with research and development, because there are those of us out here who are pretty much alive because of the work that they have done. Were you advised when you started on a sous-tent that it was not necessarily designed to cure it, but to keep it under control? That's true, and I think that's still true. And that is, sous-tent isn't a cure. Dr. Thompson frequently refers to it as the dam. It holds it back. And he warned us that at any point, the sneaky stuff could sneak around the edges and burst the dam. For me, that didn't happen. But because I've been off of it for a long period of time, that is, of course, back of your mind. This could be recurring, which is why I stay in frequent contact and intend to be scanned as often as I can. You said that you have a PET scan as opposed to a CT scan. Correct. And do you know, does that have less radiation than a CT or why there's... I'm sure it has more than a CT scan, because most of them are overlaid by a CT scan. And I'm not sure of what the relative things, but I do know that it picks up cancer very, very early. And so, for me, that's a plus. Kathy, during your time on sous-tent, did you vary the dosage and the frequency? Yes. Good question, because at first, they always start you off, especially in the clinical trial at 50 milligrams. And that's a pretty big punch. The side effects were dramatic, but when you're starting it, that's not a bad thing to give it a good punch. After about eight months, we backed it off to 37.2, and that's pretty much why I stayed for the rest of those years. Four on, two off. Four on, two off. I think you once told us how week one, two, three, how the progression went for you. The first week isn't all that bad. Second week, you start to notice it. Third week, you're aware that you're on something. Fourth week, you're pretty much... I find it in the bathroom, I think you do it. The first week of your time off, you're still recovering, so you have a really good week six of your cycle and a really good week one. But the rest of the time, it's not like you're laying your bed. I did not go to bed. Every day, we were up and dressed and doing things. It's just that you take an app or you do whatever it takes for you to cope with the things that happen. I had a lot of hand foot syndrome, limited my walking and those kind of things. I no longer walk an hour with the dog every morning. Those kind of things, life changes. But life was good. Hi, I'm Greg Michelson. I was diagnosed with... in 2007, I was in my 30s, so I'm one of the rare cases of the younger person that was diagnosed. I have the chromophobistology, which is rare. I guess if there's any upside to it being rare, it's been slow-growing. So definitely good news. After my radical nephrectomy, I enrolled in a trial here at the Seattle Cancer Alliance. It was the... to determine if adjuvant therapy would prevent recurrence. And it was, I believe it was, Sutent versus placebo. Ultimately, it was determined I was in the placebo arm. I was diagnosed with metastatic disease in 2009. It was really part of the trial. After the trial, it wrapped up. I was on kind of a three-month cycle being treated under the care of Dr. Tycote. And that's when we found that bone lesions had presented themselves in multiple areas. So I've lived with those lesions ever since. Fortunately, I had a pretty long period of stable disease, almost four years. Originally, Dr. Tycote had me on Temsarylimus, the infusion therapy, but I had some bad side effects, specifically Pneumonitis. So we transferred therapies, and I was on Sutent for a brief time, but then saw some disease progressions and some bone mets, which actually led to radiation therapy for a period of time. Just before my wife and I got married, I went through a cycle of radiation, so that was interesting. Following that, Dr. Tycote had me on Affinitor, and I've been on Affinitor ever since, despite some changes. I did have, they detected a small fracture in my left femoral head. I reported in, this is one of the great things about John Smith, and at the time Sharon Rockwell was they were adamant about reporting in any slight change, any condition. Just let them know, they'll decide what to do. So I reported that I was having some pain in my growing area. Dr. Tycote said, why don't we just take a quick MRI of that. We did that, they found a small fracture, and it was determined that that, given my disease, and I have bone metastasis, that was not going to heal cleanly. So that's when I had partial hip replacement surgery. I actually had that done back at the Mayo Clinic. I should note that my wife and I grew up in the Minneapolis area. Our extended family, brothers, sisters, cousins, aunts, uncles, they're all based in the Minneapolis area. So we tend to, when big things happen, we tend to head back to the Mayo Clinic to get treated. Most recently, again, I had long period of stable disease. Most recently was diagnosed with a brain metastasis in December, this past December, December 2014. So I had what was called a stealth-guided craniotomy in December, and actually came out of that really, really well. I have a little bit of a vision deficit, but no memory loss, everything went really well. Again, the neurosurgeon at the Mayo Clinic performed that. So that was a blessing that we survived that. Interestingly, three days after I had my craniotomy where they removed the tumor in my brain, I had Gamonife radiation. The thinking or the data that Mayo Clinic has is that that reduces the risk of the tumor coming back in that same area. If you have Gamonife immediately, rather than waiting until you're completely healed from your craniotomy. Again, been stable for the most part. I guess Dr. Techote called it out that I've had some slow growth ever since I've had my craniotomy, but it's been very, very incremental. So I've stayed on the affinity tour, haven't changed therapy. The thinking is is that alternative therapies might actually accelerate the disease, that I'm probably best off staying on affinity tour. But now we're kind of in, it's time to start planning for that next phase. So Dr. Techote flagged the Nevolumab Phase 4 study that I would be a great candidate for. So we've been actively trying to find out where that's going to be and the default would be if we can have it here at Seattle Cancer Care. We would definitely participate. And then we've also moved forward with the genetic testing, again, based on Dr. Techote's recommendation since my tumor type is so rare. Definitely we're going through the full panel. Mayo Clinic is running that because things are emerging and changing so quickly in the immunotherapy and with all the, in the world of technology, all this big data that's out there. I think things are going to keep moving faster. It's better to have my tumors profiled now to be prepared for those changes. So I'm thankful for, obviously, this part of my wife. I'm thankful for the tremendous care that Dr. Techote and John and his team have provided. You don't realize what a great place SCCA is until you start going to other clinics. I think I've spent more time in seeing Dr. Techote more than I've seen my own family for the last seven years. So it's been a relationship that has really grown and has meant a tremendous amount to Jennifer and I. So I've been blessed to be able to work full time. I've had a tremendous quality of life and, again, the interventions that John and Dr. Techote have mentioned have been so helpful. And then finally, the group that Art and Julie lead here has been invaluable that have had the same experience. And many people have served as such an inspiration for me to keep pushing through. Even those that have gone before us, Al Marsh, Steve Cronkite. Yeah, Steve Brown. You know, those definitely are inspirational people and I'm so glad to be in this with together with all of you guys. Questions for Greg. Questions for Greg. Thank you. Thank you, Greg. Can you hear me now? I'm Richard Catlett and I'm going to tell you my story briefly. If you're interested in all the details of how I found I had kidney cancer and what I've done to relieve myself of it, it's been published in the SCCA website. Just go there, go to the search box, type in my name Richard Catlett, and it's all there and you can show it to your grandchildren. Or put it in the bird cage, one or the other. I was 61 in April of 2007. I was a regular patron at the Squim Aquatic Recreation Center. I was at the Squim gym and I was working out every other day and it had been for a number of years. I had retired to Squim from Northern California after a 35 year career in real estate and I joined a country club, was playing golf, was walking my dogs every night a couple miles tending a two and a half acre garden, including an apple orchard and lots of fruit and berries. A flock of chickens, three cats and two dogs and a wife. And life was pretty good for me. All my dreams had come true. I'd luckily earned enough money to be able to live the way I wanted to live and it was pretty good. On the morning of the 16th I went to the gym. I did a complete set of exercises including bench pressing 200 pounds 30 times 45 minutes on the stair master at the highest setting. I was six foot seven and weighed 261 pounds and I was in pretty good shape for a 67 year old. The next morning I got up and got on my computer saw a beautiful picture of a steel head trout my friend Mark Brown had caught in a river we used to fish together. Got up from the computer went out to get my lawnmower to mow my two and a half acres and fell down in a heap in the front yard with a broken left femur. It had literally disintegrated just above the knee. I had no idea what was going on except I heard it an awful lot and I was frightened and confused. There was nobody home at the time and the dogs didn't care so I did the best thing I could. I got out as I could and my neighbor showed up a few minutes later I said what are you doing? You're supposed to be mowing your lawn. I said I can't mow my lawn I have a broken leg. Luckily he called 911 and that started the procedure. I had an emergency procedure the next morning putting a rod and pins in my left leg and there was some suspicion that maybe I had something more than a broken leg but nobody would it was like the rhinoceros in the living room no one would have acknowledged that there was something going on and in fact my GP came in the next morning on the 19th and said you don't have cancer they had tested the tissue that had come out of my leg and there were no cancer cells in it so I was happy about that but I knew there was something wrong and the leg wouldn't heal and it went on and it went on and it went on x-rays every 10 days or so finally the orthopedic surgeon said I'm going to go back in there and look again and see if I can find anything he did an open biopsy and after an hour and a half found clear cell carcinoma next up was MRI CT scans and there was a 10.4 centimeter tumor in my left kidney I've been there all the time so there I was lying in a hospital bed with a broken leg stage 4 grade 4 kidney cancer and the world and colleges within sight a little town of Fort Angeles didn't have an oncologist at that time we had an intern who thought he was an oncologist and that's who I ended up with so the first advice I can give any new cancer patient especially if you don't live in a major city where there are people of Dr. Ticote's quality around is find yourself a real oncologist and get a second opinion on what's going on so after I got my diagnosis the internist had the good sense to give me a sutent I took that for 18 months of course this Kathy will confirm that makes you very sick so I had a broken leg I was taking a sutent and I was sick and I knew that I needed my kidney out but I was too sick to go to Seattle so finally I found an orthopedic oncologist in Seattle who was willing to go in and rebuild the leg take out all the old and put in his own new medal had my knee replaced I have a synthetic knee now a rod up to my hip and a rod down into my lower leg and I can get around fairly well I have a little trouble getting up and down but pretty much live my life I'm still mowing my yard and I'm still tending my apple trees and I still have my dogs and my chickens but it's not the life I had before it's a new life but I'll take it a couple items that came to my mind when I was asked to come here today are some of the things I could give you folks that you might relate to and be able to use for yourself how many of you have been told by friends or family or people you didn't even know gee you gotta have a great attitude you gotta laugh a lot good humor will save your life how many people have had that you gotta have fun, you gotta laugh a lot good humor, that'll fix you right up well, there's a doctor named Carl Simington who has written several books one called The Healing Journey he addresses that area of unhealthy thinking, positive thinking and the difference between the two and he uses this example unhealthy thinking I will be dead within two years regardless of what I do and we all have those thoughts when we get our diagnosis positive thinking now this is the Polyana this is the happy person all the time I'll be alive and healthy in two years I won't have any more problems that's the person that won't take the medication or thinks it won't help them healthy thinking takes both those principles I may or may not be alive two years from now and what I do between now and then will make a significant difference what I do will make a significant difference well what can you do educate yourself the internet has a wonderful resource for specific information about your disease learn as much as you can about what it is what to expect seminars like this are available to us on occasion you'll learn more today and you'll learn more in a month sitting watching the evening news we used to have a website called acoord.net there was a listnet and there were about 2,000 people that contributed to that on a regular basis and I went there every day for about two years and then we closed it down and started a new website called smart patients any of you can join smart patients it's a group of kidney cancer survivors who talk to each other you can ask any question you feel you want an answer to and you'll generally get more than one answer it's a great resource smartpatients.org and you can log in and enroll and ask questions and it's a great resource another thing that I did for myself that's been a great use to me is building a support system family, friends, church support groups, community services counseling, caregivers building mailing lists and phone numbers what I heard a lot finally sank in you have cancer your whole family has cancer and the people around you that you know and love and who know and love you are affected by it as much as you are I know there are a number of caregivers here today I recognize you from over the years at the meetings we've been to it's important to pay attention to that and treat people around you in a proper way and gender their support my friend Jean A. Nest so I was having a little trouble getting up over there to see the parents that lifted me up that's the kind of support you need I'm getting to that exercise I'm an ex-athlete I was a scholarship athlete at Arizona State University and two sports track and field in basketball I ran over 20,000 miles in my jogging career I was still walking two miles every day with my dogs when my leg broke as well as going to the gym regularly and I really think that my physical condition saved my life I was fit enough to take advantage of the medications and protocols that the doctors recommended for me and strong enough to endure through the suit and side effects and on into some of the other TKIs that I took long story short I met Dr. Taikoti early on and he was of great help to me and we got rid of that internist over there in Port Angeles I understand he's still over there I don't see him anymore but set yourself up on an exercise program buy a membership in a gym get an exercise do something to keep yourself active every day even with the walker I get out walk my dog every night we don't go far but we have a good time and that's important weight lifting cardiovascular work and that leads me to diet a low-fat low-salt diet with emphasis on fruits and vegetables and there are a number of good diets out there that you can buy copies of I'm particularly fond of one that is sponsored by a Dr. William Lee who was involved in the original development of SUTET and other anti-angiogenic drugs he got the idea that if you can make an anti-angiogenic drug which is how SUTET affects tumors why not look for anti-angiogenic foods and so he now has the thing on the internet called the anti-angiogenic society and it's a non-profit you can join for free there's great ideas about food that you can eat that will help your body resist cancer maybe a little bit of wishful thinking but can't hurt so and the third thing is a long word that I don't say very often and I used to be kind of ashamed of saying it because it maybe seemed like kind of a kook but it's psychoneuroimmunotherapy it's a big word look it up on the internet psychoneuroimmunotherapy what does that mean it's commonly known as mind-body medicine and it's applying your mind to your physical being and there's a fellow down in Texas named Gerald White he's 82 years old he's been kidney cancer for over 20 years he's written a book and made a CD about how to apply your mind to your body to fight cancer kidney cancer expressly and I talked to Gerald on the phone pretty regularly he just had a progression after 19 years in his lung and it's gone again so he's carrying all his bases but he still does his meditation you can learn to meditate a book called the relaxation response by a Harvard doctor named Kurt Benson the relaxation response and it's about how to let your mind get control of your body so far that's what I did it for 3 years every night as I went to sleep and it may not have done anything for me but I sure slept better Dick were you going to say a word about your immunotherapy trial that you're on yeah I got real bad about a year and a half ago I was being checked on a regular basis and my local oncologist out in Squim Washington found 8 small tumors in my lungs I had already met Dr. Ty Cote and had seen him and I thought well maybe it's time to see him again and I looked up the website website for the SCCA and I saw that he was heading a a trial and it just so happened I knew what that drug was because it used to be MDX 1106 and poking around on the computer I had come across the National Institute of Health publication on MDX 1106 and read that they had some long traumatic responses from the few people that they gave it to and in fact it had some I don't want to call them cures I'll call them complete responses in fact Dr. Ty Cote will let me say cure it makes me say complete response luckily because I had gone back to SUTAB and it had failed for me the second time and it had also taken a Voltrant and I hadn't failed for me I was eligible to get in this trial and I did and I started taking the Hormad October 16th to two October's ago and the first set of scans I had were at six weeks and I went into his office and he handed me a piece of paper and I looked down at the summary and the first two words were traumatic reduction that's when I started to cry you don't see those words in those reports traumatic reduction we celebrated it was a happy time for both of us especially for me but I've continued on the Hormab since I've had a couple of hiccups with some atrial fibrillation which may or may not come from the drug the bottom line I've had no real side effects to speak of and my last report showed that I had from over 30 tumors in my lungs a 4.4 cm tumor on my liver and a 4.2 cm lesion on my third lumbar vertebra in my bone again that everything is gone except 2.3 cm of the liver tumor everything else is gone I'm 87% tumor clear right now so that's pretty it's pretty spectacular so it's really worked for me and I see in Hormab something of the future it may be what we'll all eventually get for our primary care when it's approved and available to everybody so if you get the vote on it, oh yes question for any of the panelists I see a hand back there I see I just have a quick question for Dick did you feel any pain or discomfort in your left leg before it broke when you were mowing the grass was there any warning sign, any battle fatigue or anything part of my workout at the gym was about a half an hour shooting a basket, I'm an old basketball player I still am, thank goodness I don't do it anymore but I still think about it I've been shooting some baskets and jumping and running around and I felt a little twinge in my left leg and I thought well it's just an old knee injury and I'll run it off and forget about it well it wasn't an old knee injury it was a bone beginning to disintegrate and it progressed for about three weeks before it wasn't dramatic it wasn't excruciating it was just my leg hurt a little bit and as I say I walk my dogs every night and I'd walk vigorously for two miles and never any problems there and working in the yard riding my mower, putting my fruit trees all in all no symptoms just bone was in a pile on the ground I literally felt it break I thought that I had dislocated my knee I don't know why that came to my mind but that's the thought I had but no it was pointed off the other direction you mentioned the acor list and I used to be a member of the acor papillary list the new thing that you mentioned smart patients, does that have a separate one for papillary also? yes it does various types of kidney cancer any type of cancer has a category many categories so you can specialize or go on a general list and I wanted to just say a couple things from my own thing I've got papillary I'm nine years out now and I have spots that they're following on my lungs and liver and stuff but I really wanted to emphasize what you said about getting that second opinion and getting to a major center and I had two major centers just agreed so I got a third opinion and the third one said if I had followed the recommendation of the first doctor I'd gone to I would have been dead within a year it you know getting that second opinion is so so so important and that first place I went to they said that they offered a cancer survivor network and you could sign up so I did and then they said oh we don't have any kidney cancer survivors so yeah get the second opinion take your MRI and shop it everywhere mine went to Seattle, Mayo, Duke MD Anderson, Stanford it went everywhere because mine was complicated and all my friends and relatives said send it here so thank you and thank you so much to Art and Julie pardon I'm from Washington I live in Linden and I'm a member of Art and Julie's group and I just cannot say enough about it because I was all by myself had no clue I posted something on the kidney cancer website and said I'm so alone I don't know what to do and Mr. Daly a man contacted me and it's just been such a godsend questions for the panel how much does he bench press today 150 30 times I'm slowing down a little bit another if you've got a pen and pencil this is a great resource for kidney cancer patients it's Steve Dunn DUNN Cancer Guide and Steve Dunn was a kidney cancer patient 20 years ago and he's one of the first to really start a blog in a kidney cancer site and he collected a lot of really good information that's a good jumping off point for the day and one of the things in there that I picked out that has been with me continuously from the first time I looked at this site do you remember that television program the billions and billions of stars what was his name Carl Sagan he had a partner named Jay Gould Steven Jay Gould who was a scientist who had his own television program and he contracted cancer and he wrote an article for Steve Dunn called the message is not the massage this is back in Marshall McLuhan's time but his thought was that we see those graphs and we see the median and 9 out of 10 of us will look at the median and say that's how long I got to live because the median is usually in like 50 days or 90 days or whatever well my doctor told me I had 90 days to live and he told you that the median for people with your symptoms was approximately 90 days according to the data that's been collected look at the rest of the curve and look at the tail that runs way out there and some instances it has run all the way out because not everybody's died yet but in any cohort of patients there'll be a median and then there'll be a long tail going way out to the end and Jay Gould talked about that from a scientific point of view and he lived for 19 years with mesothelioma mesothelioma thank you which has usually failed quite soon well I'm 8 years now with kidney cancer and yes we do have a support group now and there are survivors and let's keep it that way okay when Jillian and I started on this road when she was diagnosed there was really not much hope and really not much going for us and somehow the kidney cancer association happened to be coming out to Seattle periodically and they would host these meetings at a room at a hotel down near the airport which is where we got together with some other kidney cancer patients and started to find some of the first signs of hope and since then we went back to Washington DC and we've subsequently been to Houston and San Francisco and Chicago multiple times with the kidney cancer association here today in the person of Carrie Carrie would you like to say some words as to what the group is all about and why we owe so much to you we owe a lot to you too so thank you as Arc said I'm with the kidney cancer association we are celebrating our 25th anniversary year and as many of you who are these long term survivors it's amazing for me to hear your stories I know when I got started you know a lot of these therapies were not approved yet patients were coming here just trying to find what they should be doing next and it's amazing for me to see how far this disease has come we were founded by a kidney cancer patient Dr. Eugene Schoenfeld who was from the Chicago area he was a PhD at the Dill School of Journalism in Northwestern and when he received his diagnosis there were no treatments there were no support groups nothing that he could do and as an academic he thought you know this isn't satisfactory to me I need to do something about this and the physician challenged him and he was a couple of doctors and some patients sat around his kitchen table and formed the kidney cancer association Gene was very active in the fast track approval for kidney cancer drugs helping to get IL2 one of the first therapies that we had for kidney cancer patients by continuing to grow the organization doing small meetings to larger meetings like this I think we've been able to really build a network of patients that has things that we hear from patients it's just getting an opportunity to have someone on one time with different doctors to talk to other patients and to really keep yourself educated we've talked to people who have been long term survivors but want to know that unfortunately if a therapy stops working what the next option might be and so I think it's important to keep educating yourselves to attend meetings like this when you can we're grateful for all of you to be here in the support that you give to our association in addition to these types of support group meetings we do have a couple of online communities our Facebook group kidney cancer association on Facebook we have over 85,000 members from across the world so people are on there all the time talking about what kind of therapies they're on asking questions about clinical trials and really just going there for support to know that they're not the only one fighting this disease we also have a community on Inspire so it's a separate network we also have a very active group where there's different segments that you can look for different subtypes if you're interested in nutrition, if you're interested in surgery and clinical trials and we have a moderator on that site as well we have a YouTube channel so if you go to YouTube and search kidney cancer association we'll have videos from meetings such as this one we do one at MD Anderson, at Cedar Sinai each year we will kind of change that up a little bit so you'll have an opportunity to kind of see similar talks but from different doctors perspective sometimes we'll have different patient panels and then we also do two medical symposia each year we do one in the US every fall and then in Europe every spring and while those meetings are targeted just for physicians and limited to the patients that attend we do put those videos and all the slides online and encourage you to you know to watch those talks as well that sometimes they go into a little more depth about some of the treatments and trials that are going on and we encourage you to visit our website and see some of the print resources that we might have available we have a video program that our nurse advisory board members did and thank you to John who's a member of that group who talk about some of the different side effects with these therapies and how to better manage those and learn how to live with some of these therapies that are helping patients to live longer and at any time if there's anything that we can do if there's a resource that we don't have or questions that you might have for us don't hesitate to contact us at www.kidneycancer.org or to email office at www.kidneycancer.org so again I want to thank Art and Julie for helping to organize this for Prometheus and Pfizer for supporting it and for Dr. Taikoti for getting things organized as well so thank you all I'm pretty shy about this but I want to thank everybody for coming today I'm just overwhelmed by your attendance and grateful to all the speakers all the survivors