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Transcript of Thriving and Surviving Patient Panel

Stephanie Chisolm, BCAN Director of Education and Advocacy:

This program has really been on Thriving and Surviving. And we have a wonderful patient panel of people that I think are really exemplary in doing just that after their bladder cancer diagnosis. And we’re going to talk to each of them individually.

But I’m going to go ahead and go down the line. I showed you during the break there were slides of people thriving and surviving, pictures of our panel. I’m going to start with Carlos.

Carlos Glender:

Okay.

Stephanie Chisolm:

Why don’t you tell us a little bit about your experience, Carlos? And then tell us how you are thriving and surviving. What are you doing?

Carlos Glender:

Great. I had symptoms of blood in the urine in the fall of 2016. I wasn’t, I thought nothing of it. You know I was doing a lot of working out at the time and I thought it was something really minor. I thought it may be a kidney stone at the worst.

My wife, Angie, who’s a nurse, she convinced me to get it checked out. So I went to my urologist and I did an initial visit and he scheduled me for a cystoscopy and a CT scan and to check it out. And I thought, still thought it was a kidney stone.

But he did the cytoscopy, which is the first one I ever had. It was really a unpleasant experience. And then he said that I had two tumors the size of a quarter in my bladder, so it was biopsied. He did the surgery two days later and it ended up being cancer, T1Hg.

Stephanie Chisolm:

That means high-grade.

Carlos Glender:

It’s high-grade. Then I went for a second opinion, went to Ohio State. They gave me a second opinion. They did a second TURBT to stage it. And I went through a regimen of BCG treatments. I did the initial induction phase of six and then I went to a maintenance phase on a schedule. And I had 18 BCGs total of the 27 that they recommend for the protocol. My BCG treatment was cut short at… Cut off at 18 because of the BCG shortage.

As far as thriving and surviving. I really thank my wife Angie. She really my angel. She saved my life by getting me to get checked out. It could have been a lot worse of an outcome. And we are thriving right now. We moved to Charlotte, North Carolina from Ohio to be near the grandkids. And then we’re thriving, we have a lot of friends. I was working at Charlotte. I got another job that I really enjoyed.

And then my dear wife ended up with a diag… She had blood in the urine, so we said, “Ah, we know what that could be.” So she went to her initial care, her primary care doctor, and they gave her the usual, “It could be a UTI, could be this.” Then we said, “We want to see your urologist, we want to see my urologist.” And saw my urologist in Charlotte and sure enough, it ended up she had cancer. She has UTUC. I’m not going to say too much or more about that because she’s got her story to tell.

Stephanie Chisolm:

Tell us, what do you do for fun these days?

Carlos Glender:

Okay, what I do for fun-

Stephanie Chisolm:

I like the thriving part.

Carlos Glender:

The thriving part, yeah that’s us surviving. Okay, we’ll go to the thriving part. Well, first of all, I’m like Scott. I compete in my age group. He competes in his age group. I compete in the 65 to 69 age group as a master swimmer. I’m on a team in Charlotte called SwimMAC, and we compete at in state level meets and also at national level meets.

My specialty in swimming, well, what I do the best in is a 200 butterfly. And really the reason, probably the reason why is because it’s a really hard event and not very many people my age group, even at the national level compete in it. And you know, have some really, you have some ex-Olympians actually that compete in some of these national meats. But I managed to, over the year, while I’ve had, since I’ve had my cancer diagnosis, I’ve won two, I think one silver medal and two bronze medals at the National level in the 200 butterfly.

Stephanie Chisolm:

Didn’t I ask you to bring a medal with you? Did you bring a medal?

Carlos Glender:

I didn’t. I forgot. I got a picture of the medal, but-

Stephanie Chisolm:

It’s hard to get it through TSA.

Carlos Glender:

I didn’t bring it, but I do that. But I also, in the Charlotte area, I’m a curriculum manager for a group called Senior Scholars. And that’s a group of, it’s about, I think membership is about 500. And it’s older adults 55 and over who meet on Fridays and we could try to get speakers lined up. So I work on lining up speakers, science related speakers, because we have people that, other curriculum managers that get history and art and stuff like that. But my focus is on getting science speakers.

So I’ve got speakers on space exploration. I got Dr. Zubrin for space exploration. I got Dr. Andrew Knoll for paleontology. He gave that via Zoom because he’s out of Harvard University. He wrote a book, A Brief History of Earth, 4 billion Years in Eight Chapters. I also got Dr. Matt Milowski.

Stephanie Chisolm:

Way to raise awareness with people that might not have heard about bladder cancer.

Carlos Glender:

That’s a lot of fun. I enjoy swimming, but I also enjoy getting really good scientifically oriented speakers. We got a speaker on the James Webb Space Telescope for our group. And I’m really happy to do that and contribute to science and also compete in swimming.

And I also run. I’m also competing and running at the senior games. I probably won’t do as good in running as I did in swimming because I’m a weaker runner. We went to Ohio. When we were living in Ohio, I competed in the track events at the state level and I got quickly eliminated doing the 400, 800, and 1500 meter runs.

But we’re thriving. My wife and I are thriving. You know, she has her cancer and my cancer. We still do a lot of things. We’re still very active. Last fall we took a cruise to Norway and Denmark. Had a great time. We have a lot of friends in the Charlotte area and we can honestly say we are thriving. We are living life. We are both retired now, so we’re living life to the fullest.

Stephanie Chisolm:

So Angie, what he didn’t already say about your situation… You know, you’ve also, we’ll talk to you later about caring for your loved one, the person that you’re married to, and then turn around and you get to be a patient too. So you have a different experience.

Angie Glender:

Exactly. So yeah, both experiences I have. And then as I’ll start with Carlos’s cancer as a caregiver. Carlos always has been active, always ran and swam. His diet might not have been as good as it is now. Not that he was a junk food eater, but he’s like salad’s a vegetable. So after his diagnosis I’m like, “You’ve got to up these.” So I was the smoothie queen with all these things, the green smoothies. So I’d put everything in there for him. And I have to say now six years out, you eat quite a few vegetables and I don’t have to blend them up with like apple juice or something. You know, so that’s been plus.

So then he’s doing well and thriving. His cancers never came back. He goes in for his scans, et cetera, and it’s always looking good. Yay. And then we’re in Charlotte, life’s good, everyone’s happy. And then, oh yeah, blood in the urine. Like he said right away, I went to cancer in my head at this point because I had no symptoms of anything else. So then I did call my family doctor and said, “You know I blood in my urine.” And she was, “Oh, it could be a UTI.” And I’m like, “I don’t think so.” And I ended up contacting his urologist that was doing his scans, et cetera, and got in with him. I did take antibiotics though, just in case, you know.

Stephanie Chisolm:

It was a UTI, maybe.

Angie Glender:

Just in case it was a UTI. I figured I’d hedge my bets, right?

And then I was diagnosed with that upper track. And so that threw me for a loop because in the beginning I thought my results would be his. Bladder cancer is bladder cancer. You know, I didn’t know about the differences. And so then when they said, “No, yours is in the kidney, let’s take your kidney out.” And I was like, “Wait a minute, wait a minute. That’s not how it’s supposed to happen.”

And thank God for BCAN. Carlos was already involved with this group then, and Stephanie and Angie Smith, Dr. Angie Smith ended up getting us in touch with some great doctors in North Carolina. So instead of just removing my kidney like next month, we did that neoadjuvant chemotherapy, which would give me some better odds. And I’m like, “If it’s 5% or 8%, 10%. Whatever it is, let’s take it because that’ll add up, you know?” My age, I was young, I was healthy, you know, add all these pieces up and it’s going to help.

So I did the chemotherapy rough, not just on me, but now Carlos is the caregiver. So it was rough on him too, you know? But I had surgery. I had chemo, had surgery, everything went well. And it was a month later from my surgery, we’re at my high school reunion in Florida. So I was whooping it up and I’ve been trying to whoop it up ever since.

So like Carlos said, we went on the cruise. It was our first ever cruise. We had never been on one before. I know some people take three a year and we had never done one. We had a great time. We do like to do things. And if you saw some of those shots previously, one of those was in Colorado going down the white rap-

Carlos Glender:

[inaudible 00:31:46].

Angie Glender:

… the river. Yeah, so we try to have fun with him swimming and we travel with it. Like we went to Albuquerque. I’m like, “Well, I’m going on a balloon ride.” You know, I’m going to go with him, but I’m not just going to sit and watch him swim. I’m going to schedule some things for us to do too. So yeah, I do that.

But yeah, so we’ve been each other’s support. We don’t have the same experience with our cancer journey. It’s only been a year and a half out for me since my surgery. So I still freak out a little bit. I have my year and a half check up the end of April, and just like we talked about yesterday, about anxiety with that. Yeah, my head can sometimes go there, “Oh, you know. What are they going to find?”

But I’m doing well, I feel well and I’m back to what I call fun Angie. You know, normal and having a good time. So I’m thriving. I still get a little twinges, you know, but I’m thinking the longer you go out he is the easier that’s going to ease up. But I have a good time during the journey.

And now, even here in Phoenix. You know, this the first time in Phoenix. So we like coming to these seminars, meeting all you people and having a good time.

Stephanie Chisolm:

Have some of our groupies, you know. So they do follow us around, which is great. So let’s just try one more time. Scott, can you hear us?

Morgan:

His wifi cut out so he is not on.

Stephanie Chisolm:

Wait, come in over audio? Oh, darn. Okay, Camille and Doug, why don’t you guys go next and then we’ll save Gail for last.

Whoop. Hello. Thank you Stephanie. So I’m Doug and this is my wife Camille. And my story is probably fairly typical in terms of the way the bladder cancer presented itself. I have no risk factors. I never smoked. I never had any exposure to chemicals or anything like that. And I had no symptoms. My bladder was perfectly fine. And in mid-April of 2020, just as COVID was really hitting and everything was closed down. Doctor’s offices, operating rooms, et cetera. ERs were full of COVID patients, et cetera, and it was a very scary time. I’m getting ready for bed on about 11:00 on a Sunday night. I go to empty my bladder and instead of what I’m normally used to seeing come out, it was pure blood and blood clots. I mean we’re not talking about a spoonful here, it was just pouring out blood. And I knew I was in big trouble.

I said, “Camille, I’m in big trouble.” But I didn’t want to go to the emergency room that night because of all that was going on. And I knew nothing would happen. I’d just wait there until the morning. So one advantage of COVID was that there was a great access to care for those who needed it. So the next morning I called my primary care physician, he scheduled me a CT urogram that morning. I went and saw the urologist at around noon that day who reviewed the CT urogram and said, “You need a TURBT, can you do it this afternoon?” To which I said, “I don’t even know what it is, but I guess I can do it.”

So I had the TURBT the same day. And the pathologists weren’t busy either, so I had the pathology report about a day or so later. So everything happened very quickly. The original pathology report showed, for those of you who know how this all works, a stage TA high-grade. It sounded pretty scary, but the physician told me that, “Oh, it’s TA is pretty good, don’t worry about it.”

Anyway, I ended up going to see a urologic oncologist who was really excellent. Entire practice is bladder cancer. And we repeated a TURBT a few weeks later for staging reasons. And it actually came back T1 invasive into the lamina propria high-grade with CIS. And actually when they reviewed the pathology from the first one, it also was the same. So I was T1 high-grade with CIS.

My surgeon said, “You’re a candidate for BCG and we can provide you with full strength BCG here.” And I had a six-weeks course for the induction, to which then we ended up doing another TURBT after that to see how it went. And the reason that we had it done a TURBT instead of a cysto was because my surgeon had gotten, the blue light was capable at that time, but only in the operating room.

So we did it in the operating room. She told my wife, “This is going to take 10 minutes, there won’t be anything there, don’t worry about it, but if something’s there, I’ll just take it off right then.” Ended up being a two-hour procedure and my bladder was absolutely full of tumors, almost like it was laughing at the BCG, didn’t really do anything at all.

So my surgeon basically came out and talked to us and said, “You could have have some other conservative measures, but your bladder’s declared itself. If I were in your shoes, if you were related to me, I would recommend getting a radical cystectomy.” And that’s what I did. And so in January of 2021, I had a, let’s see if I can put all this together, a nerve sparing robotic radical cystectomy with ileal conduit. And the surgery took about eight hours. The surgery went very well.

I mean to me, it seemed like it took five minutes, right? Because I was under general. I woke up in the recovery room, it was over, and my life changed that day in a different way. Not necessarily in a worse way, but in a different way. I was in the hospital six days. Everything seemed to go well. I had lost quite a bit of blood, so I did require a transfusion. But I went home day six.

Three days later I started to develop shaking chills and a fever over 102. And my wife said, “We got to take you in.” And I said, “No, I don’t want to go, et cetera.” Anyway, we contacted our surgeon and she said, “Well, I mean its COVID everywhere. I mean you could have COVID, but let’s get some blood work.” And Camille got me into the car, with our daughter too. And we went down, got some blood tests, and it showed that I had an infection in my blood, septicemia. So I was readmitted for another week on IV antibiotics. Had a drain put in, et cetera.

So it was a little bit of a rough first few weeks, but slowly but surely I was able to recover. And probably by around week six or so, I was feeling pretty well. I would say I was maybe 70% back. And by six months, maybe 90% back. And by a year, maybe a 100%, close to a 100% back to where I was.

And it’s, everything’s worked well, haven’t had any problems. It’s just what I predicted it would be, the outcome. And now all I do is I get annual CT urograms and blood work. And in fact, I’ve got one coming up in about little over a week, my one-year CT urogram. And people talk about anxiety associated with these CT scans for surveillance. And I just thought it was kind of cute. A friend of mine who also has cancer, he has a melanoma that’s metastatic, he calls that scanxiety, which I think is a cute term. I don’t know if he coined it, but it’s scanxiety.

So I’ve been thriving. You know, there’s good days and bad days for the first year or so. I’ve been thriving. I’m very grateful to my wife Camille, who’s beside me today and has been beside me throughout the whole course. Excuse me, my breaking up a little bit. That’s the microphone, not me.

But in addition to Camille, I want to also say that there’s other people too. Our daughters were there to help. Mainly they helped Camille because she needed a break at times. Friends brought over delicious meals. My surgeon was always there to answer questions and to talk me off the ledge. There were wonderful nurses. In fact, one of them who was aptly named Blessing, and she really was a blessing. She got me through the BCG and a whole bunch of other things.

And I also want to thank BCAN because some of the people that really helped me get through it all were BCAN Survivor to Survivor Volunteers that I got linked up with. And it’s just there’s nothing more powerful. You can talk to doctors and nurses, but there’s nothing more powerful than peer to peer support because I can tell you that my surgeon knows a lot and she’s amazing. But she doesn’t know what I know about living after radical cystectomy or these kind of major surgeries, or even BCG, because none of them have had it. Only we as peers can provide that support to each other and answer those questions. And we’re not talking medical questions, but questions from the experience perspective.

So talk about thriving. I know that’s one of the questions you asked, Stephanie. If you asked me how do I thrive in life? Or how do I plan to thrive in life three to four years ago, before I got diagnosed with cancer and when I had just retired after decades of hard work, I would’ve said, “Oh, my plan to thrive is to travel the world and hit everything on my bucket list.”

And I would say now that my perspective is very different. Right now, to me it’s more simple things. And with gratitude, living every day you can, I mean not always successful, with gratitude and being present. And I know that theme came up yesterday and Stephanie brought that up too. I really think it’s important to be present because when I look back on my life, I spent all of my life either thinking about things I should have done differently in the past or worrying about the future. But I missed the moment, this exact moment. So on the days that I feel I’m thriving, that’s what I do. I try to be present and be grateful.

And on that note, I’d like to thank Stephanie and the BCAN team. As well as our wonderful corporate sponsors for hosting us today and getting all of us together. So nice to be in a room and looking at people instead of little boxes on my computer screen. So this is really wonderful. Thank you Stephanie and to the sponsors as well.

So what do I do to thrive? What are my activities? I love to walk. I’m not an athletic champion like some of the other panelists, and maybe I could win a thumb wrestling contest, but that’s about it. So I like to walk and I like to be present when I walk. So I listen to the birds. I feel the sun and the wind on my face. I smell the smells of nature, you know out in the forest and things like that. That’s how I thrive.

There’s nothing better than spending time with our grandkids, getting down on the floor, playing with them, entering their world. It’s very important because they’re always present. That’s the child’s brain, right? I like doing things with my hands. So I’m starting to learn to do oil paintings. I bake bread and I knead the bread.

And last but not least, Camille and I both feel strongly about paying it forward. People helped us and so we’ve been volunteering with a lot of organizations, one of which is BCAN, and we are Survivor to Survivor Volunteers. And I’ll leave some of that more to Camille, give her something to really expand on. Yeah, I know. I didn’t want to just cover it all.

So we do that. We’ve been doing that very actively for the last year and a half to two years, and it’s very rewarding. So I’ll turn it over to Camille, if that’s okay, Stephanie?

Stephanie Chisolm:

Yeah, absolutely. And you know, I think having a diagnosis that started at the same time as the pandemic really changed the whole dynamic. Were you able to go in Camille?

Camille Cappiello:

No.

Stephanie Chisolm:

So you weren’t even able to be there?

Camille Cappiello:

So I think that’s a good place for me to pick up from.

Stephanie Chisolm:

Yeah.

Camille Cappiello:

Because the diagnosis itself was shocking. And when Doug went into the hospital that next morning, it was a whole day of him just texting me and telling me, “Okay, I’m going over to radiology. I’m going back to urology. They’re going to be doing the surgery this afternoon. It’s a good thing I didn’t have anything to eat or drink this morning.” You know and in those types of details.

But the uncertainty for me in not knowing anything and essentially waiting in the parking lot for the next text message or you know, update was actually quite difficult. And to be honest with you, at the end of the day after he had the TURBT and the surgeon called around 8:00 that evening, I definitely did not expect him to say, “There were two tumors and I think I got it all and he’s going to be okay.”

So for me, it was shocking. It was like, what? Just this disbelief. And even more so is shortly after that, the nurse called me to say, “Okay, you can come and pick him up now.” It was like, “Okay, now you’re just going to send him to the sidewalk, and what do I expect with all of that?” So you know, the catheter and the drainage bag and the recent surgery and the diagnosis, and of course communicating with our daughters. So at that time, like Doug said, we were hopeful that everything was going to be okay.

And then of course you have the BCG conversation and then you know, you’re hanging on to that hope each step of the way which is really important because you’re bearing a tremendous amount of uncertainty. And one thing that really helped me through it, I think was just because of my own sort of contemplative groundedness, and I’m also a retired nurse. So all of those things were very helpful for me, in trying to maintain some kind of balance.

And also as a caregiver, understanding you know, it’s okay to have some self-compassion. It’s okay to try to take care of yourself. And that came weeks after the surgery, and months of tests and all kinds of different things. And grateful for our walking, that was very balancing. Trusted confidants and colleagues that we could talk to and co-regulate with, very important. And one of the greatest gifts for me would’ve been just being able to step outside or step into another room, take a deep breath, and give myself permission to have a pause and just literally put my hand on my chest. And I literally would say, “This is the only moment you have, you know?” And check in with yourself. “How are you doing? What’s being asked of you? What do you need?” Really hard to ask yourself what you might need, sorry.

But you definitely come through it and you know we’re heading into 40 years of being together. It’s not our first rodeo, but this one definitely was a hard ride. I’m not going to deny it. And once again, just to remember that it’s good to have people that you can talk to. And when you are with someone who has a listening heart, you know who can validate emotions, mixed emotions and uncertainty, it can really help build your resilience.

And that is one of the reasons why I love the Survivor to Survivor opportunity in supporting other caregivers because they need to know that they are doing the best, the best they can, the very best they can. And that it’s coming from the right place, and it’s okay to take a break if you need it.

And as many people have shared and said throughout the summit this week, and a lot of things have been shared and totally agree with, you know. And again, just understanding that it’s a huge adjustment and to be able to look at it with a new perspective. And it’s a new normal, I guess, if that’s what they want to call it. But I loved the adjustment words because it is a huge adjustment and you absolutely can still have fun. You know, we love to go to movies, we love to walk, we love to travel. We just took a cruise ourselves in January for the first time in four years and we had a…

And you know, it’s not just the one story, it was COVID, post-COVID, new grandchildren, elder care. I mean, life was moving on all around us. So to navigate one day at a time, do the best you can and just try to stay steady. And really to know, I just thank God every day for all the angels in my midst and for the strength and the courage to move through it. So thank you.

Stephanie Chisolm:

Now we’re going to go to Gail, whose story is a little bit different. You were pre-COVID, but you have a very different story, Gail.

Gail:

Let’s see if this sounds familiar to anyone in the room. I had a very active professional career in which I invested all of my energy, all of my emotion, and a great deal of my satisfaction. I took my body for granted. I mean, it was always going to be there. I spent no time doing much of anything that wasn’t work related. And then all of a sudden I found that when I urinated, I felt that I had to go again immediately. I went to see my primary care. There was microscopic blood in my urine, and I was sent to a urologist. They looked around and they couldn’t find anything for a while. Did CT scans, did a lot of manual exams and finally my Christmas present on the 23rd of December in 2017 was to find out that I had muscle invasive bladder cancer.

Okay, I’m working full time. I don’t know what this means, and I feel fine. I really feel fine. I don’t know anything about bladder cancer. I don’t know anyone who has ever had bladder cancer. I don’t know what to expect. And the one thing that I was able to find was the pamphlet that I think many of you might have been given from BCAN that had information about basics.

So I did what anyone in the information professions do. I immersed myself in finding out everything that could possibly go wrong and all of the possible diagnoses. And I had a friend who was going to come with me to any of the procedures or any of the meetings with the doctors. Because I live alone and my son lives in Montreal, so that the family that I would normally be able to rely on was very far away.

I had the staging surgery in January, and I still felt fine until they did a PET scan immediately afterwards. And I started to develop massive blood clots, gallons and gallons and gallons of blood clots. Upon being admitted to the hospital prior to even meeting the bladder cancer team, I was lying there and I mean, I’m hooked up, every possible orifice is hooked up to something and the doctors come in to visit me and to give me their considered opinion. And they said, “Can you stand up?” And I said, “Sure, I can stand up.” So I hoisted myself out of bed, stood up and immediately had a heart problem called an NSTEM, which is a bruising of the heart muscle, at which point everything ceased and there were floods of equipment and people in the room.

So I’m not in a great state. I’m confused. I still haven’t had a real diagnosis. I really don’t know what the treatments are going to be. And I’ve now had this complication. And I’m a person who has just taken for granted that I will be able to continue working, that I will be able to continue to rely upon my body to heal itself and do whatever it needs to do. Until the team came in, the urologist, radiologist, oncologist, and the various fellows, and they basically stripped away every option that I thought that I was available. No surgery, no chemo, no radiation. The only thing left was immunotherapy. And the odds were a fraction of a fraction of a fraction. So not great.

And the impression that I got from the assembled medical professionals was that I should just probably get my affairs in order. And that when I said, “Should I retire? Should I quit? What should I do?” And they were not particularly optimistic. Until they then left and my oncologist pulled up a chair and sat next to me and said, “I’m here to help. I’m here to be with you on the journey and we’re going to deal with this together.”

So I’ve had nothing but immunotherapy. That was the only option available to me. That was five and a half years ago. I was very, very fortunate, and I benefited from all of the people that volunteered for clinical trials of Pembrolizumab KEYTRUDA. Which is advertised on television as a therapy, not a first line, maybe not even a second or a third line for bladder cancer. And I was one of the few that responded immediately. And after five and a half years, I am, I’m knocking on wood or formica or keeping my fingers crossed, but there’s no evidence of disease.

But all of us know, all of us know that there’s always something in the back of your head saying, “Okay, you’re fine now, but what about tomorrow? What about the next CT scan? What about the next cystoscopy? What’s that going to?”

But I made a decision that I was going to tell everybody that I had bladder cancer. Bladder cancer is a cancer nobody talks about. Women don’t talk about it. Women learned to talk about breast cancer. We learned to talk about ovarian cancer. We need to learn to talk about bladder cancer as well. And so I made a point of not only telling people that I had bladder cancer and what the treatment was, but what the signs were so that they could recognize it and so that they could pay attention and possibly identify the problem prior to the stage that I had. I had muscle invasive high-grade CIS metastatic bladder cancer.

So if you remember Stephanie’s iceberg, I’m sort of up there toward the top. I mean, cancer is not a competitive endeavor, so we don’t compete with each other. But it was complicated because I wasn’t able to get lots of the types of treatment that other people were able to benefit from. And while I wasn’t an N of one, as researchers talk about, there were not a lot of people in early 2018 that were only on immunotherapy. And so there wasn’t a lot of history. There wasn’t a lot of data. Now because of the advances in research, there is a great deal more data and that if you are looking at immunotherapy as either an additive to other treatment or as, if you are in my position, the only treatment that you can have, you have a greater range of information on which to base your decisions.

I spent a great deal of my professional career working with researchers, and so I care deeply about the advance of bladder cancer in its funding, in being seen as not just a hopeful condition to study, but an amazing one to study where there are lots of breakthrough moments yet to happen. And so I’m really excited about that.

And some of my thriving has been volunteering as a Patient Advocate for BCAN. And working with pharmaceutical companies. I was privileged to work on the guidelines for hematuria and bladder cancer for SITC, the Society for Immunotherapy of Cancer. And being able to, in some way give back to the community and help all of us to be able to have the kind of future that not only we want, but that we want to be able to pass down to our children and our grandchildren.

And BCAN has been my ally, and it has been my savior, and it has been my passion. So I do, I don’t have, I don’t do a lot of swimming. I do a lot of walking and I haven’t gone on a cruise.

Camille Cappiello:

Maybe we should all take a cruise.

Angie Glender:

BCAN cruise.

Gail:

I have been able-

Camille Cappiello:

We should have a BCAN cruise.

Doug Cappiello:

Previous saw that on a cruise.

Stephanie Chisolm:

Yes. Yeah, right. This is an idea.

Gail:

Well, I think that a lot of, I attribute a great deal of my thriving to participating as an active Patient Advocate in BCAN.

Stephanie Chisolm:

Thank you.

It was very natural to find BCAN advocates that are engaged with us to say, “Okay, you guys are like examples for everybody.” That this is a club you didn’t want to join, but you got a lifetime membership. This is now your life. You might as well hang out with the friends, right? We’re here, we’re all friends, we’re all in the same boat. We’ve done so much in the early years of just raising research awareness for bladder cancer as a potential thing that could be researched, not just cut out, but find a better way.

And for everybody to give back in their capacity, I love to say that Gail is also on the steering committee for our scientific meeting that we offer every summer where we bring together this year 300 clinicians and researchers to really collaborate. To find the next best thing for the bladder cancer community.

I think it’s really invigorating to see that we’re able to make change. And you benefited from a treatment that wasn’t even available eight years ago, and it just came on the market right as you were diagnosed. So this is exciting opportunities.

Now, what questions do you have about thriving and surviving?

We had one question that came in over the Zoom. Thank you, Mark, for sharing. This is a question for Carlos. You mentioned that you had to stop the BCG protocol after 18 sessions due to the shortage. Do you or your urologist have any concerns that you could not get the full treatment and the long-term outcome of the reduced sessions?

Carlos Glender:

That’s a very good question. I was very concerned when I was told that I had to cut off my BCG treatments. I know the protocol goes to 27. My urologist, who’s a very good urologist, said that most of the benefit comes in the beginning of the treatment and that I’ll be just fine without getting the complete 27. I can be cut off at 18. I was still concerned, but I went to the BCAN conference, that the BCAN Summit in 2019, and we had a panel of doctors, one of them from Johns Hopkins. And I, after the panel was over, I asked one of the doctors on the panel to corroborate what my urologist said, “Basically that I’m in a good place and I have a very low chance of recurrence if I don’t get the complete BCG treatment.” And it was corroborated that right now I have about an 80% chance of not getting a recurrence, only 20% of getting a recurrence. And right now, now I’ve been six years cancer free. I’m very happy for that.

But I also want to really stress the importance of BCAN and what BCAN provides. It provides a way where we can get answers to our questions that not necessarily our doctors can answer. BCAN has been very helpful, especially in the case with my wife Angie, with UTUC. I didn’t know anything. Even though I had bladder cancer I didn’t know anything about UTUC. I reached out to Stephanie. Stephanie, like we said before, gotten me in touch with Angie Smith and we got answers and we got a great treatment from my wife.

Another example is a friend over, a friend sitting at the table, Brian Okamoto. I reached out to him on Inspire. We connected. We had the same, we were diagnosed with the same disease at just about the same time. I’m a swimmer, he’s a swimmer, but we have a lot in common. I was in aerospace, he was in aerospace. We helped each other.

We helped each other. My wife helped me. You know, it’s about helping. We’re a community. We all have so much, you have the disease in common, so let’s work together to try to fight this.

Stephanie Chisolm:

This is good. You know I think it’s really impactful. One of the things you mentioned was a second opinion. You know sometimes patients don’t want to go. People with a diagnosis. I should stop saying patients. The individual with a diagnosis doesn’t want to get a second opinion because “I don’t want to make my doctor mad, or maybe they’ll think I don’t have confidence in them.” A second opinion can validate what your physician is telling you. Wouldn’t that make you feel better if somebody else is saying, “Yeah, you’re on the right track, this is what I would also do for you”?

Or it can open up opportunities though. You go back and then you ask more questions now because you’ve been educated to say, “Let’s talk about this other option. You didn’t mention it.” And then your doctor might say, “Well, yeah, we could pursue that.” And so a second opinion is never a bad thing.

I think Dr. Linehan will agree with me that she’s not feeling insulted. If somebody says, “I’m going to get a second opinion.” It’s not because they don’t trust her. Because you see, she’s very trustworthy and smart. She knows what she’s doing. So it’s just a chance to be your own shepherd on this. You know, this is your journey. You are the one who is deciding which path you’re going to take, and you should be involved in those decisions. More education you have, the better you’re going to be at making decisions that you can live with. Live with in the sense that you’re comfortable with, and live with in the sense that, “Yeah, you’re going to keep going. You know, you’re going to stay on this side of the daisies.” That’s the point.

So I think it’s very important to consider a second opinion. And a lot of people don’t do that because they don’t want to make their doctor mad. So I don’t think… If your doctor gets mad, they’re not the doctor you need to be [inaudible 01:08:40] at. Okay, good. That’s just my personal opinion. Okay. Not a BCAN opinion. That’s Stephanie Chisholm’s opinion.

Any other questions? We’ve got Bernadette here with the microphone. Raise your hand if you have a question for anybody?

Any other thoughts that you guys want to share? Because this is really great examples of people doing great things and yeah, of course, they’re helping BCAN too, which is really helpful.

Angie Glender:

I’ll piggyback on that second opinion. Now we’re in Charlotte, North Carolina. My husband’s seeing a urologist there at a cancer center. Might not have been a National Cancer Institute, but it’s a very good cancer center. But that doctor just wanted to take out my kidney, and we are like, “Wait a minute.” You know, I’m, “Oh sure, go ahead.” No. So it was more like, “Let’s look into this.” And so we researched and we got that information.

And I went up to Chapel Hill. So I ended up having that neoadjuvant chemotherapy before they took my kidney. But where do I go? I still have a port. I want this thing gone. I have to tell you. But I guess I’m resigned for a while to keep it. I really do want it gone. Reminds me of my cancer and it’s just not nice. But anyway, so I have to get it flushed, right? I’m not having chemotherapy anymore. And so where do I go? I go to the cancer center, yeah the same one. His doctor’s the one who writes my order. So I go in there and get my port flushed. So it’s fine.

Carlos Glender:

And there’s no hard feelings with the doctor.

Angie Glender:

And he still goes and sees him and gets his cystos there.

Carlos Glender:

The doctor I have did not get offended in the slightest that Angie, my wife went-

Angie Glender:

I just, yeah. Yeah. No. So it’s all good in other words, you know. So I drive up three hour drive to Chapel Hill for all my treatments, and then we just go downtown for Carlos. Everybody’s happy.

Stephanie Chisolm:

Got it.

Doug Cappiello:

Just one other quick comment. Stephanie asked us to think a little bit about what makes us optimistic. And I am very optimistic about the future and we’ve heard a lot about immunotherapy over the last couple of days. And I don’t think most of us really understand immunotherapy all that well and how it differs from chemotherapy. But the advances in immunotherapy and genomics that’s coming out in with research today is just astounding. KEYTRUDA, which was the first of these drugs, has only been available for a few years, and I think it was only-

Gail:

It’s mid 2017.

Doug Cappiello:

Yeah.

Gail:

So if I had been diagnosed nine months earlier, it would not have been available.

Doug Cappiello:

Would not even have been available. And I wonder if it was used as an off-label for you because-

Gail:

No.

Doug Cappiello:

It was on label for bladder-

Gail:

It had been approved bladder in the middle of 2017 for bladder cancer, but not as a first line.

Doug Cappiello:

Not as a first line. And OPDIVO, which is another chemo drug, immunotherapy drug, was even came out even later than that. But one thing that I really thought was amazing was that some companies, and maybe some of our corporate sponsors are even working on this, are looking at creating cancer vaccines. And I know I think Moderna was the one that used its mRNA technology to create a vaccine for high risk malignant melanoma patients that’s being tested very successfully, I think along with KEYTRUDA, and they enhance each other’s effect. And I’m just thinking, you know is a bladder cancer vaccine somewhere in the future?

Stephanie Chisolm:

Interesting that you say that. That is a topic that will be discussed at our think tank this summer.

Doug Cappiello:

Ah. Well-

Stephanie Chisolm:

So our steering committee is already on top of it. So look for exciting new things as we bring more and more people and they bring in people that are successful in other diseases to share what’s working and how they can apply it to bladder cancer. That’s what the think tank does. It really inspires.

Doug Cappiello:

It sounds so exciting. And unlike KEYTRUDA and OPDIVO, et cetera, which are great drugs, they’re generalized. These are customized for the individual where they actually take some of the tumor cells and they create the vaccine specifically for you. And I’m just thinking, in addition to bladder cancer, imagine a future which is probably not that far away, where women that have the BRCA gene and who are currently today getting prophylactic mastectomies could instead-

Stephanie Chisolm:

Another topic.

Doug Cappiello:

Yeah. Right. Is it coming too?

Stephanie Chisolm:

Oh yeah.

Doug Cappiello:

I mean, this is all coming. It’s extremely exciting and gives us a tremendous amount of hope and optimism. Imagine getting a vaccine for your high risk for breast cancer or bladder cancer, any of these things, and forgetting all the things that we’ve been talking about the last forever number of years, BCG, and the like. So a lot of great stuff coming.

Gail:

Stephanie?

Stephanie Chisolm:

Yeah. One last thing.

Gail:

Doug talked about the reaction that he had to the surgery. One of the hallmarks of being able to move forward with all of the additional drugs and the drug therapies that are going to be available is if people participate in clinical trials and if they report the kind of adverse reactions that they’ve had.

Unfortunately, I had a unique, so far, adverse reaction to immunotherapy five and a half years of… After five and a half years of treatment, I developed immune mediated colitis, which means that I may or may not be able to rely on immunotherapy if the cancer recurs, but if I didn’t make a point of making sure that my doctors knew about it.

If you don’t make a point of making sure your doctors know about adverse reactions, then the kind of data that gives all of us as patients the opportunity to assess the risks and make choices. We don’t have the kind of data that we need for immunotherapy. There isn’t a lot of data at the point where the original clinical trial was two years.

At the point where I had two years of immunotherapy and was doing very well. The option was to stop and just trust that it was going to continue. But there wasn’t a lot of data because it had only been approved in 2017. And now I had to make a decision. So the decision I made was to be able to continue thinking that more information would be coming in and more data that I could contribute to and others could contribute to, would help people make decisions.

So I can’t stress enough the kind of feedback that your doctors are asking for. If you have constipation, tell them. If you have diarrhea, tell them. If you have skin rashes or other reactions, let them know because you’re not just helping yourself, you’re helping all of the people in this room and all of the thousands and thousands of people that have bladder cancer and who are relying upon data and information for the research to progress.

Stephanie Chisolm:

Quick question, last question because we’re going to do one more program before lunch. So go ahead.

Audience:

I’m still a jock.

Stephanie Chisolm:

Yeah.

Audience:

I like the look in yours. I’m not as gay in the summertime. I have my background, like I put part away. What do you recommend, suggest for condition to get back in shape so I don’t lose the whole summer? And if you had experience with that, how would you like to call them?

Stephanie Chisolm:

So John’s looking for anybody with the experience of getting back in good condition so he can continue to water ski and do fun things after he has his bladder removed.

I know we talked a lot, so find John at lunch and give him your insights. But we did talk about sort of this pre-conditioning, the pre-habilitation and then the rehabilitation and everything in between there are lots of options. Talk with your doctor.

And obviously Dr. Sarah Psutka, who just got our almost $1.5 million, three year translational research award. Her research is all about prescription exercise to get you ready and then help you heal after the surgery. So it’s a very important topic and there are some people making really significant advances there.

So I’m going to leave it at that. And thank you so much everybody for sharing. That was great. And we’re going to end this webinar and start the Patient Research Advocate webinar because when I send out the follow-up with the link to the evaluation, which you will be getting-