 Very good. Thank you Dr. Musinski. That was fantastic. We didn't have a similar talk last year So I think that was very well received lots of questions Good. So our last time on the program I'd like to ask Julie and Archimora to come on up and they have a few comments for us today Patient and caregiver perspective for kidney cancer Okay, I'm not good at talking but I'll relate what I know or what I have the experiences I have had but I've talked to quite a few of you out there and you've been through this similar thing that I have like I had bilateral tumors and You know, it's just amazing how many other people have Curious. Anyway, okay. So hi everybody I Was diagnosed in 2000. So I'm a 16 year survivor. I've had three surgeries. I had a cryo surgery that was my first one and The second one was a partial nephrectomy and then I had a Open partial nephrectomy with a rib removal and trust me that was more painful than that opening I don't think I'll go into too much detail about, you know, how far I've come and what has happened because not a lot has happened I've just had the surgeries and I haven't had to have treatment And I feel really good the only problems I'm having are Bowel blockages due to all those scar tissue from all the surgeries that I had to have and That's about it The other part is we got interested in having Some group meetings in Seattle because when I first started there was nothing there was just the KCA kidney cancer association and They came out here once a year and there were four or five people at the meeting and we kept thinking there's something wrong with this So we got started with their help and we've been doing it for 12 years I think my husband wants to talk a little bit more about What I've left out or missed or something Or or I don't want to talk about You want to stay there? Come on Okay First of all show of hands how many of you are caregivers almost half Okay I'm a caregiver. I'm not a kidney cancer patient and that is a slightly different perspective on things and For me it started out like she said in 2000 December 7th. I'll always remember auspicious day She went to her Urologist after having had a CAT scan because her regular doctor had said you need to see a urologist And I wasn't with her. I worked at Boeing I had all kinds of meetings to attend and I figured she'd take care of herself and probably kidney stones She came home. She said she had kidney cancer and what did they tell you Julie? They told me to go see a urologist and that I might have about Two years to live if I didn't have my kidney removed So she came home and I came home from work and I said what? All of a sudden everything had changed. And so I started looking at this 18 to 24 months. That's not very long Probably the next day or a couple days later. I went into one of the senior managers at work And I said, you know, I think I'm gonna have to retire early So I'm gonna have to stay home take care of my wife here for the next two years And they were real accommodating and they managed to Let me take time off when I had to support her in her surgeries And literally there were times when I had to lift her out of the bed so that she could get out to the bathroom Things of that sort like so I was able to work from home I was able to actually help her through some of the hard physical stuff Then you get to the mental stuff anybody running into that yet? Yeah caregivers You have a real role to play and help and get through that mental stuff So for us part of it was attending those first couple of meetings here in seattle Down at a hotel near c-tag where there weren't very many people But we got connected with the kidney cancer association and a few local people that have been going through this for a while They convinced us to go back to one of the national meetings back in washington dc Where we met a whole lot of kidney cancer people patients and caregivers And that really gave you just a huge boost in your confidence. You were feeling a whole lot better after that So that one thing led to another we ended up going to I think we actually they sent us back there to help lobby congress and all kinds of stuff At that time we were trying to find something specific that would solve the kidney cancer problem They've subsequently changed and now they're saying there are drugs working for cancer Can they work on solid tumors like kidney? That's where a lot of what we have seen coming through in the last few years has come from In 2000 The only things that you saw the doctor tell you the only things that were out there were interferon alpha And il2 il2 was Approved in only 1992 And one of the people that we have been seeing at our cancer meetings that we hold here At Seattle cancer care alliance is a 25 year survivor of that initial il2 trial And she had stage 4 cancer so bad that it broke her her collar bone the huge tumor So that was one of the complete reversals and we've seen more of that We've seen a lot of people that have had a lot of remarkable recoveries from this kidney cancer scourge We've also seen some that haven't made it But by and large when they get together in a meeting like this one here Like the ones that we hold about four or five times a year and they start talking to each other We don't have pity parties. What we do is we do problem solving We're trying to find out what can work. What has worked. What can you do for somebody else? And every time I come home from one of those things Julie's pumped up So as a caregiver that makes me feel good Does anybody have any questions that we can address? Yeah, and what are the meetings? Well, they've been on a kind of irregular basis We were supposed to have one in june, but we went to a Uh youngest grandson's high school graduation in montana held in montana And after the graduation one o'clock in the morning july had a ball blockage So off to the hospital in the ambulance the three days in the hospital Which kind of submarines our meeting for june So we hold about four or five times a year and if you put your email address on that sign-up sheet out of the desk We're going to put you on our list and you'll see when we're having our next meeting I expect we'll have one towards the latter part of september won't have one in august because i'm a Dahlia grower and shower and every weekend in walk in august is taken up by the shows so We do that about he grows 700 plants Other questions july didn't tell you about the genetic aspect but When she was first diagnosed with the bilateral tumors and Things in her lungs and her pancreas. They were thinking about von hippel endowed disease very genetic and we actually went back to the National Institute of Health And the america and they tested her for an entire week to try and determine whether this was a vhl situation In her case, they were never able to prove that it was they also were never able to prove that it wasn't So that's part of the frustrating part of the genetics that maybe you did or didn't catch from the talk totally