 Thank you. Well, thank you to George Shade and Kim Businski for the afternoon faculty program. So now we're opening it up to patients and caregivers. So Art and Julie are going to lead the next session. Or Art, OK, excellent. All right. OK, what we're going to do is we're going to have several people who are patients who have been attending our kidney cancer meetings. We have regular meetings about five times a year over at Seattle Cancer Care Alliance. Our next one's going to be September 9th, Saturday. It'll be from 1 o'clock in the afternoon until 3 o'clock in the afternoon. And sometimes it'll go a little bit long because what we find from these meetings is where you get a lot of your benefit is from talking to each other. And sometimes that happens even after the meeting. So we've got three people who have been through a variety of experiences. I wanted to kind of put it in context by showing you where we were when Julie and I kind of got started on this whole thing back in the 2003-2004 time frame. We got started with the Kidney Cancer Association. And we would go fly to their meetings that were held in Chicago or Washington, DC or Dallas, Texas and try and bring that information back to our meetings. So this is some slides that I took from that. And see if you see some of how things have changed in the last few years. Back when we started, the meeting went for two solid days in Chicago. Patients, caregivers, patient advocates. What did we learn? At that time, there were about 30,000 cases a year. Remember that number's gone up a little now. 60,000 a year. And 12,000 deaths. Now that's about 14,000. There were half a million survivors then. I'm sure there's a whole lot more now. But notice, up to 57% are stage three or four at first presentation. And what we're hearing now is that that figure is much, much lower because the kidney cancers are being found when they are much smaller, stage one, stage two, and much more treatable. Chemotherapy was ineffective. Immunotherapy worked. That was IL-2 and interferon alpha. Worked meant there was some impact for 15% or 20%. But very few had complete reversal. Primary KC treatment was normally surgery. Partial nephrectomy was still kind of new. Only about a third of the people who probably should have had it were getting it at that point. Laparoscopic was thought to be better tolerated. And then, let's see. Kidney cancer was actually many cancers. And we started learning about some of these other cancers. And they were looking for markers. What they're looking for is something with the kidney cancer that they can decide how best to treat. They're still looking for those markers. They listed 75% of the cancers as clear cell, 15% as papillary, 5% chromophobe, and 5% oncocytoma. Not too much different today. Then they talked a little bit about why it is the kidney was kind of a neglected cancer in the whole time of things. I mean, take a look at how many cases per year, how many deaths per year there were versus prostate, which is much better funded, has a much better organization behind it. We basically were kind of orphans. Current research was focused on the genes. And they figured that the major source of the kidney cancers, we had lost one to two copies of the VHL gene. And restoration of the VHL gene could cause tumor regression. And they started using DNA microarray chips. It's come down a lot in price sense. And one of the things we are starting to ask our doctors a little bit more is, should we be thinking in terms of having a microarray to determine which of the treatments might work best for our particular tumor? Many new therapies were in work at the time. Dr. Stadler in Chicago was the co-chair. Clinical trials were the only way to get into the new treatment until the FDA approved the new treatments. Phases of the treatments, of the clinical trials, phase one. They're just trying to see whether you can handle the treatment or whether it's healthy or whether it's going to cause you severe problems. Phase two, they're trying to find out if it does something to the cancer. Phase three, is it effective? Does it do something versus a placebo? And there are phase four, where they're trying to find out whether they can do better. But Dr. Bukowski, kind of a dean of the kidney cancer community at the time, mentioned that clear cell would respond to the cytokines. Papillary was insensitive, things of that sort. Actually had a real interesting conversation in a forum like this, where Dr. Janice Dutcher was kind of extolling the benefits of IL-2. And Dr. Bukowski said that's a terrible treatment, because so many people take it and don't benefit from it. You should all go to clinical trials. So trials and agents, they had immunotherapy trials. They had chemotherapy, gemsytabine and kipsytabine, novel compounds, angiogenesis inhibitors, whole bunch of things that were just getting started. Notice down there, VEGF trap therapy, SU-11248. Anybody know what that is? You know what it is, Kathy. You want to tell them about it? Let's get you a microphone. Hi, I was diagnosed in 2004. Sort of right at the cusp of the beginning of the VEGF trials, which is the real turning point for survival for a long time, I think. I was diagnosed with stage IV, grade IV, which is very aggressive renal cancer. And so pretty much my doctors told my family 18 months was good, and they should not expect me to live more than 24 months max. A local oncologist told me that there were no clinical trials out there, and it looked very grim. I had my full left nephrectomy very long because it involved surgery. And so they basically sent me home and said, we'll do watchful waiting. Well, watchful waiting, in my situation, was pretty much just go home and wait. But there were a really interesting series of circumstances. I ended up in a clinical trial that was just happening with Dr. Thompson at the Seattle Cancer Care Alliance for SU-Tent. So I was in the original stage III SU-Tent trial. I was assigned to the control arm, which was the interferon alpha. And so for two years, interferon alpha was effective for me. When it failed, that man I mounted the study. But by that time, it was now 2006, and SU-Tent had been approved. So I went on SU-Tent, and it almost immediately knocked down my metastasis. And we followed it very carefully. One of the, as I understand this, may have changed thinking in time. But one of the reasons one did PET scans at the time was in very aggressive cancers. It was effective in finding it. In fact, that's how they found mine in PET scan in 2004, or early 2005. And so I was on PET scans on a very regular basis. And they did not find any more cancers. But I stayed on SU-Tent for eight years. And the eight years on SU-Tent was hard, part of it. I was on the high dose, and then we reduced it. By the last couple of years, I was at half dose. But it was important because of the aggressive nature of my cancer. Oncologists, Dr. Thompson and other oncologists down south where we spend the winters suggested we might want to go off of it. And we kept saying, well, it's working. And there is a certain comfort to being on therapy of any kind because you know you're doing whatever you can about it. And going off of something that was working was a very scary thing. But I did go off of it. And so I've been off of all the drugs for three years. It has, I am very grateful to Pfizer for SU-Tent. And I am grateful that God made my body responsive to SU-Tent because I know not everybody is. But here I am 13 years out from my beginning of my experience with SU-Tent. Were there any side effects? A lot of side effects. And I had all of them. There was this book, except for the really, really bad ones. But in each time, each cycle, I was on four weeks on, two weeks off, each cycle, I seemed to have a little bit different side effect numbers. And so I'd just get used to one and we'd deal with it. And the next time, it would be worse with another one. And the next time, I'd go back over here. I mean, you never quite knew what you were going to get that time. But life was good. And life was full. We did a lot of things during those years. Going on cruises, did that. Got to see our kids married and have grandkids. It was a wonderful thing to still be here. And I'm very grateful for that. So other than the clinical trial where you didn't pay for the drugs, would you have to pay for SU-Tent? Well, keeping in mind that I started paying for it in 2006, at that time, it was like $6,000 or $7,000 a cycle. And it went up from there. And being on Medicare was not such a bad thing. But I was very grateful because this year, 13 years out, I was able to celebrate my 70th birthday. It's a wonderful thing to be 70. And I'll be happy to be 71 and 72. Birthdays are not a terrible thing. How about a round of applause for that? Let's go to Steve Bliss. Now, Steve, you've had quite a round of several different clinical trials. You want to tell us a little bit about those? The first one I had was when I first went on SU-Tent. I did Trovex at the same time, which was a vaccine, I think, from the European Union was developing, I think, at the time. And it was a double blind study. I did that for a little year or two, I guess, along with the SU-Tent. How long have you been since they found your cancer? Almost 11 years, exactly. 11 years. And as I recall it, about 2 and 1 half years ago when we had our November meeting, you looked like you had just about had the course. Yeah, I was pretty much done there for a while. And then something changed. You went on a new treatment. Went on the funnel lab for a while. Did that for nine months. And that actually, as far as side effects, was fine. But the treatment was kind of awash in the end. Tumors didn't grow, but they didn't shrink either. So we went off that for about six months. And then I started on the Cabo. I was at a Cabo, what do you call it? Cabo Metro or what is it called there? Well, the next time we saw you in the middle of the next year, all of a sudden you were hail and hearty and healthy and surprised the heck out of all of us. So you're on Cabo right now. But these are expensive treatments. What's happened along those lines in terms of your social security disability? So if ours been paid 100%, Cabo cost $14,400. Just got a bottle yesterday, $14,400 for a 30-day supply. Of course, for the final, it was $18,000 for a 30-day supply. Yeah, so you had the kind of a difficult situation where his employer-sponsored health insurance went away. And you had to go on social security disability. And after you went on social security disability, you automatically qualified for Medicare, although you weren't age qualified for Medicare, right? I wasn't age qualified, but the disability qualified before it. How long did it take you on disability before they actually put you on Medicare? Six months. That's good. So a lot of our people that we have seen at the reviews, the meetings that we hold, have never heard about the fact that they could go for Medicare through their social security disability. And as I understood it at the time, I think for my wife, it was after she had been two years on social security disability, she qualified automatically for Medicare. And so she's been on Medicare ever since. And you also got some additional help through, because of income limitations? Yeah, Medicaid through the state kicked in for a while. I no longer qualify for that. But yeah, it helped out. Great. Still with the Medicare, I'm on extended. I have Humana for the prescription coverage. And I'm on what they call extended coverage through Medicare, which pays for all the prescriptions that they don't pay for. And you come over to our meetings from Yakima. Yeah. It's quite a drive in the winter time. Let's turn to Mike. Mike, how long ago since you were diagnosed? Basically, it's been just over five years. A little closer. It's been about five years. Five years. And you had something that we hear about frequently. You had bone metastases. You want to describe that? Yes. About two and a half years ago, Sue and I were down at the beach. And I dropped something, and I went like this to catch it. And I broke my heart humerus. Nothing had ever hurt so bad in my whole life. So basically, I went in and found out what happened. And went to Sweden in the Swedish system. And basically, Dr. Cannon put it back together again. And actually, there's no rod in there. And we put the more rod together. And then about five or four Christmas, it had some. Hold the mic closer. Sorry. I'm not the first one to hold the mic by hand. Anyway, so basically, it got an infection in it. And it separated. And it took a while to figure out what it was. And then I was able to come back. We were quiet at the time. And I was able to come back, re-glued it, we're going good. And you're taking something for the bone metastases. Your bones are more brittle than the usual. Well, basically, right now, I think I'm basically doing the kebab addicts right now. And trying to work against the next G-Vet if my kidney function is OK. Basically, that's where I'm at right now. I'm on the kebab addicts also. That's been very good, actually. I think you told us at our last meeting in June that you were paying your insurance company with being billed $18,000 per cycle. Yeah, I just went up the $18,000. And you have what kind of insurance? It's Medicare and it's a regents' advantage. So basically, it doesn't hurt you too badly. You still have to pay. It's $800 a month. Yeah. Have to get through the donor toll. None of this is cheap. So this is a good time for me to ask the audience members, do you have questions of our current survivors? Yes, why are they paying for all of this? I would say probably the first answer for that is because there is R&D. Well, you know, it's one of the things we have discussed in our group before. Some of these drugs are extremely expensive and probably far more than you could justify from just the R&D expenses. But at the same time that we kind of say bad things about the big farm of people for what they charge, we wouldn't have those drugs without them. So basically, I kind of have come to terms with the fact that on the whole, it's a good thing. More questions, yes? I wonder if this coverage could be expanded a little bit. I'm on Medicare. Rich, do the donor tolls and then more or less cover you? Well, you go through the donor toll real fast at $18,000 a month. So what they do do is they do give you the drug company that I have. It's to give you a questionnaire about your income. So I think that they take into account what your income is on that in charge of your family. That's a drug company that doesn't. The drug company does not, not make it. Well, for example, Pfizer on suit and we had one of our people that ended up with a medical bankruptcy. But basically, the income was way too low to ever afford it. And he got his suit and for free from Pfizer because he qualified for one of their programs. Most of the drug companies have programs of that sort. Now, if nobody's ever told you to ask for them, you should probably start asking about that. The hospital that you are being treated at, ask the nurses. Typically, there's somebody in their department that'll help you. Kathy, did you have any, you didn't have any of those kinds of problems. Your bigger issues were the side effect issues, right? We, our insurance was, we had one of the catastrophic programs because we were both healthy and we never, so we had a 50% on our pharmacy thing. So in the beginning, we had very high. And of course, they don't change that once. You can't say, well, now I want to buy the other policy. So for the whole time that we were on it before I was on Medicare, we were paying half of the full bore on that. And I would like to encourage you to do what Art just said and that is look into the helps with it. Pfizer, I know, has a really generous approach to it and we'll try to help and I'm pretty sure, I don't know who makes the other drugs, but they all have programs to help out with that kind of thing. The prescription D supplement is kind of meaningless. Well, the prescription D, I mean, that is very helpful once you're at Medicare. But I'm saying if you're still at the just insurance before you get to that part, make sure that you tell all of your relatives don't just buy the catastrophic policy if they're at all likely to get kidney cancer. Okay, there was a hand from way back there. Navigators? There's also something called the Patient Advocacy Foundation that Kidney Cancer Association has referred people to for years. I've never really tried it myself. I don't know if any of you have, but it's another possible avenue. Do we have any more questions of the survivors? Could I see the caregivers for these survivors? So way in the back there and right over here. Caregivers, thank you very much. Sometimes I think you have the harder job and do we hear that? Okay, here are some caregivers. Dr. Taikoti, can we turn it back to you? And maybe you guys could stay here and let anybody ask you if they want to afterwards.