My name's Kevin Campbell. I'm 68, closing in on 69, good years in there. I was in the service for 22 years, and I've been working for the government service back with the Army for 21 years now in there, so about 43 years combined federal service in there. I'm married for 35 years, two daughters, one's 34, the other's 29. I was diagnosed in January 2014. It was an unusual story there. In 2010, I was on a business trip down to San Antonio through the Army Medical Center and School, and on Friday I started feeling chest pains and shortness of breath in there.

So, being 50+ years old at the time, ran through the heart attack symptoms and the stroke symptoms from there, I go, "Nope, not that. Nope, not that. Well, it must've been a pull of the muscle or something. It'll go away." And I flew back and on the trip out of Dallas-Fort Worth into Kansas City International there. About a local city, I was like, "Man, I really can't breathe there," but at that point you're on your final descent, so I was like, "Okay, what are we going to do here?" And I landed, called my wife and said, "Well, I'm feeling better. I think I'll just meet you at the house." She said, "Oh, heck no, I don't think so. I'll meet you at the emergency room." Sure enough, DBT and PE, both lungs had shut down, had pneumonia.

So, I saw my primary care doctor after they kicked me out of the hospital and she had just completed some continuing educational medical units about the relationship between DBT, PEs, and cancer. She said, "Let's start with a colonoscopy." I said, "Great," and those came back with polyps. That was in December there. Fortunately not cancerous, but because they were polyps, and that meant instead of 10 years, you will see in three years. I said, "Okay," and I took that away, never to remember it there, but sure enough, they called me in December saying, "Kevin, it's time to come in." And when I came up to the recovery room, my gastroenterologist said, "Kevin, you probably should see a urologist." I said, "Okay." He didn't offer any further explanations on there, so I saw my primary care doctor, she referred me to a urologist.

He did the DRE, and he said, "Well, we should probably do a biopsy." So on 23 January, we did a biopsy. On the 24th, I got the fateful call in there saying, "Kevin, you have prostate cancer." I'm going, "Huh? What?" And that floored me like it does I'm pretty sure every cancer patient [inaudible 00:02:45]. It just, I mean, absolutely knocked me on the floor on there. And I remember going in and seeing my urologist to go over the biopsy results and we set up a consultation for surgery with the urologist. And as he's walking me out, two things, he said, "Kevin, that's a pretty aggressive cancer." I'm going, "Oh, great." And then he handed me over to the scheduler and he says, "Kevin is an NDC." And I said, "What the heck's an NDC?" He says, "Newly diagnosed cancer," so that was my introduction to the world of all the new language that I was about to learn type of thing.

So, I had surgery, it was a very successful surgery, pathology report, urologist notes on there, the surgeon. And he said, "Well, you're not going to have to worry about this, Kevin. I think we got it all." I'm looking at the pathology report, the MX and going, "Yeah, what do you mean MX on there?" He said, "Well, there's always a possibility, just something too small to be seen." So, I plugged it into the more affluent Kettering cancerous site nomogram about probability of recurrence there, you put your clinical date in, and they said I had a 30% chance. I said, "Well, those are good odds on there." And 18 months later, yeah, okay, I was at 30%, so good thing I didn't go to Las Vegas. The surgery was in the hands of a very skilled urologist there. He'd done 3,000+. It was robotic in there.

And you had to remember, it wasn't exactly the medieval times in terms of leeches and stuff, but it's 2014, and the choices then were we do surgery or we do brachytherapy. Those are your two choices. I go, "Okay, all right." And I knew that if I did brachytherapy and that did not work, that it kind of eliminated the possibility of surgery in there. So I said, "No, I don't want that there, so let's do the surgery." I knew the risks, side effects, possibilities on there, erectile dysfunction, incontinence in there. Of course, any surgery carries a risk when you're going under there, something goes wrong on there. But for me, it offered of the two choices, the best possibility of a cure, which was the gold ring that I was looking for there. And came out of that surgery, and within a week I was back playing basketball, doing things on there, and life was good, that type of thing. I got the golden ring there.

15 months after the surgery, my urologist, who normally looked at his computer and then quickly turned to me and go, "Kevin, everything's good. See you again in three months," he hesitated, and you're like, "Yeah, okay, other things are there." He said, "No reason to panic," but instead of being undetectable, i.e. less than 0.1, because we're using a standard PSA test at the time. He said, "It's 0.2." I said, "Okay." He said, "We'll check this again in 90 days." And I'm going, "Yeah, okay." 90 days passed, he turned slowly and he says, "Well, Kevin, it's 0.3," which met the definition by various associations for a BCR. He said, "We're going to do salvage radiation therapy. I'll set you up with a radiologist there. I said, "Okay."

At that time, the standard of care was SRT to the prostate bed only. You get 39 IMR treatments, roughly 70 DUIA at that PSA 0.3, you had a statistically good chance of "cure" from there. But I began reading things from Mayo and MD Anderson, Memorial Sloan Kettering Cancer Society, and the data that they were collecting indicated that in high-risk patients like myself, Gleason score eight, that the reoccurrence often had already extended into the pelvic lymph node system on there. Now, keep in mind, again, state of the art for imaging at the time at 0.3, they weren't going to find anything on there, but this was just data they collected from their patients on there. So, what the various clinical trials, which were finishing up phase two and phase three said, "Well, you extend the radiation treatment to include the whole pelvic lymph node system and you add short-term ADT, six months in there." So, I pitched this to my team, the radiologists, neurologists there, and they said, "Oh, Kevin, we don't have any long-term data on that type of thing on there."

So, I acquiesced. I said, "All right," and then in July of 2016, my radiologist turns to me 90 days after we completed it, and said, "Kevin, your PSA is 0.7 and it's more than double." She says, "The SRT failed." And I thought to myself, "Son of a gun." So, my lesson learned was never again was I going to allow my medical team if my intuition based upon my literature search said, "You need to take an aggressive approach," was I going to let them minimize the treatment to there.

And I understood it was the standard of care, those are the guidelines type of things on there. Guidelines are often historical and they're population based on there. They don't necessarily fit your specific clinical data, that type of things in there. So, that lesson came in handy because I went to see a second opinion and he was a director of an NCCN center. He's the head of American Urology Association there. I laid out my clinical data, I talked about the charter of STAMPEDE trials, talked about triple therapy in there, and he looked at me and he said, "No, I would just put you on monotherapy, ADT, continuous, and then at some point we might have to adjust if you became resistant." I looked at him and said, "You're kidding me, right? You didn't listen to me."

I said, "I laid out the data, I associated it with clinical trials." I said, "Maybe I don't fit the exact criteria there, but if you give me another six months, and my doubling time velocity, I'll be there." I thanked them, walked away. I went to Mayo Clinic there, Dr. Kwan, who I had seen some of his articles and a couple of his videos there. His approach was different, which he said, "Rather than linear and sequential with each destined to fail there," he said, "Why don't we combine these treatments and bring them forward early in the disease to try and overwhelm it when it's in a state of... We can get it," type of thing. So I said, "Sounds good to me." And Mayo had the C-11 choline scan at the time. That was January of 2017 there.

So, we went up there and sure enough, there were four pelvic lymph nodes that were hot in there. Of course, if there's four that are hot, that means there's a number of spots that can't be seen there, the micrometastatic disease there. So, we did triplet therapy, we did six cycles of Taxotere, originally scheduled... I did 24 months of Lupron, six 90-day shots and 25 more radiation treatments, the pelvic lymph node, another 45 GYA on there. I had that all done in Kansas City, because this time I found the medical team that supported me, that type of thing on there. So, I finished that up in May of '18 was my last shot there. And Dr. Kwan originally was 24 months, but again, I talked with him about various studies that said, 12, 18, 24, 36 on there. And he said, "Kevin, if you want to stop at 18, I'm comfortable with that, given how you've responded to the treatment," type of thing.

And I said, "Sounds good to me. Let's stop and see what happens," type of things on there. So, May of '17 was my last ninety-day Lupron shot. I completed the six cycles of Taxotere from January 17th, roughly May of '17. So, it would've been... Sorry, May, yeah. So January 17th, so six cycles, three weeks apart, it would be 18 weeks, it would've been four and a half months: January, February, March, April. So, it would've been May when I had my last Taxotere. The whole pelvic lymph node, they wanted some time to recover. So that was July, August, 25 treatments of 2017, and the last Lupron shot was May of 2018 in there. And that's when Dr. Kwan in my last visit said, "I'm comfortable with you coming off the treatment [inaudible 00:11:58] how you responded." He says, "But let's just monitor you every 90 days. We'll do labs, we'll do a consult type of thing in there."

And so he said, "But you could stay under the care of your team in Kansas City, just we'll monitor the results from up here," and things there. And he and I agreed upon decision criteria there. He says, "If your PSA comes back," he says, "If we have three or more consecutive increases spaced three months apart, and if it reaches between 0.5 to 1.0 in there, then we'll image in there. Then, we'll take that data and decide what to do, whether or not to go back on treatment, what to treat with there, for how long," type of thing said there. So, there's the chart I showed you, every three months we checked, it was good. Never met the decision criteria there, but then about April '22, it began a climb from 0.06 on up to eventually 0.77, I think when we started in April '23. So, I met the criteria three or more, spaced three months apart, PSA between 0.5 to 1.

Of course, with the acceptance by the FDA by the PSMA imaging on there, I had a clarified scan in March of 2023 that showed a single pelvic lymph node there, but again, this micrometastatic disease on there. So again, we had the decision criteria in place there. My urologist, when we hit the criteria there with the last one being in 0.7 range there, so three or more consecutive, 90 days apart, between 0.5 and 1. I'm on standard Medicare and I have TRICARE For Life as my secondary on there, so I didn't have to fight any pre-authorization type of thing. So, there he just put the order in with St. Luke's here in Kansas City who has the scan on there. They called me, set up the appointment on there, walked in, did the thing there, laid down, they injected the radioactive tracer things on there, and put me back inside the machine, and then kicked me out a little bit later and said, "You'll have the results in a few days on there."

And sure enough, about two days afterwards, my results are posted to the portal, that type of thing on there saying, "Hey, there's a single pelvic lymph node identified in the system there." But for me, I know others, battle their insurance companies on it on there, but Medicare and TRICARE For Life are pretty straightforward. A physician orders it, it's scheduled, it's paid for, and you're good to go. I think everybody should have that kind of insurance, I think on there. So, our medical team got the result. Now, we had again, kind of the shared decision-making there, a move beyond the urologist on there, because now I need a radiologist and oncologist, I think so on there. Radiologist was the same one who did my SRT and the one who did the whole pelvic lymph node on there. She's very good. I'm there, an active listener in there. So I saw her and she said, "Kevin, we can do SBRT to this on there. Do you want to also see an oncologist?"

I said, "Yeah." She says, "Well, what are you thinking, Kevin?" "Well, I'm thinking we do SBRT and six months of ADT." She says, "Lupron?" I go, "No, we're not doing Lupron again. We're going to do Orgovyx on there." And she smiles, because she knows what's coming there. And I said, "I'm doing that because the cardiovascular side effect profile is better in there. The side effects are not near as severe in terms of hot flashes, fatigue, muscle stiffness there. Testosterone recovery is better. It's faster to castration, they don't have the flare." And she's just looking at me like, "Yeah, okay, Kevin," I think so on there. And so I see the oncologist, he looks at me and says, "Well, what would you think about 24 months of Orgovyx and we add an ARI, Xtandi?" I know what he's talking about, he's talking about the EMBARK trials, that type of thing.

And I'm going, "Yeah, I don't know." I said, "Let's talk about that." A little bit of back and forth, and finally he said, "How about this, Kevin?" He says, "Let's do 12 months of Orgovyx." And I had seen some data about six versus 12, so I was like, "Okay." He says, "Let's hold the Xtandi. If you don't respond to the Orgovyx, PSA doesn't drop undetectable in the first three months, then we'll add the Xtandi and then we'll do quarterly labs and consults from there. And at 12 months, let's decide whether we want to continue or come off on there."

I said, "I can live with that," so a little give and take type of things there, but I appreciated him listening to me type of thing. So, we had the SBRT, that was radiation treatment 64 through 69. She has some new members of the team, each time they wanted to explain to me the process and I said, "Look, this is number 65 here. I got this down." I don't think so, but they're very professional in there. And the Orgovyx, again, very simple, TRICARE For Life is my part D, not an issue with the Orgovyx. My co-payment was $68 for three months. So, there was no financial toxicity involved in that.

So sure enough, PSA drops to undetectable in the first three months. Per our agreement and discussion, he withholds the Xtandi things there. And then we get to the 12-month point and through the portal I sent both my radiologist and my oncologist a note saying, "My belief is I should come off a treatment in there and here's why." And I pointed to studies that talked about if your PSA drops to undetectable within the first six to seven months, that is a good clinical indicator of a durable remission, progression-free survival period type of things on there. And I said, "And I'm not going to walk away. I'm going to see you every three months, so that if it comes back with the same decision criteria there, okay, let's revisit the 24 months of Orgovyx and ARI," that type of thing there. So my radiologist, he said, "Kevin..." When I saw her on that day, she said, "I support you because when I sit in these tumor boards there," she says, "The oncologists are all over the map about how long ADT should be and why."

I met with my oncologist. You could just see him just gritting his teeth. They're like, "I really want to convince Kevin to go 24." He said, "Would you consider another six months ago?" "No," I said, "I just need you to support me and say, 'All right, Kevin,'" everything's in there. He said, "Okay, Kevin." He says, "You're not wrong." I said, "You're not wrong either. We don't know if either of us is right, because you can't run two parallel universes and say, 'Kevin will continue on. It's for 24 months. We'll see what the differences in there.' You make your decisions and live with them." So I had the SBRT, which was five treatments, eight GYA a piece of there. That was my third time, so you had 39 IMRT, that was 70. Then you had 25 IMRT, that was 45.

And then you had five, which was 40, so 70, 45, a 115, 155 rads on there, like I said, 69 treatments are there, not a single side effect. I attribute that to the skill of my radiation team there, the advances in the technology of those systems on there. I mean, my radiologist sat me down with her laptop, showed me the 3D software they plan this thing with, and I'm going like, "Okay, it's beyond my comprehension, but it sure looks impressive," type of things there. And then she let my wife into the control room, the Star Wars room type of things there. They're monitoring you real time, they're adjusting the plan based upon your breathing, and imaging, and everything. Of course, it could be that I'm just an ornery son of a gun, just too tough, I don't know on there, but zero side effects from the radiation treatment center.

Now, there are a lot of men in the various forums who don't have that experience. I think of statistics, bell curve, standard deviations, that type of things. Most men will be somewhere inside that bell curve. I think I'm probably a couple deviations to the left there in terms of side effect profile from all those radiation treatments type of things on there. The Orgovyx was true to advertisement there. They tested my T before we started there. It was 632, I think there. And then within six weeks it had dropped to undetectable, less than nine type things on there. Side effects, let's not sugarcoat this there. There still are side effects in there: fatigue, muscle and joint stiffness, the hot flashes on there, the genital shrinkage things in there, but they were milder than with the Lupron. Now, do I have a quantitative basis for that milder? No on there, but qualitatively, I didn't have any soakers.

I can remember on the Lupron, I mean I would be sitting out there with my wife someplace and my shirt would just start soaking things on there. But with this you'd have the hot flashes, you'd get red and get a little sweaty on the brow type of things on there, but nothing that you... Okay [inaudible 00:22:28]. You have some changes to your lifestyle. At the gym, they have the heated pool and they have the unheated pool. I didn't swim in the heated pool, I think so. In the winter my daughter borrowed my car and she was home for Christmas and she said, "Dad, why are you running the air conditioner?" I said, "Yeah, well, that's a long story. About 30 years from now you may understand," type of thing. We were traveling down to watch a basketball game, the University of Kansas, my alma mater.

It was November, so it was cold there. A friend was in the car and he reached to turn on the heat, and I go, "Don't do that," because it would set off hot flashes on me if I ran the heater in the car, that type of thing. All first world problems type of thing on there. What's interesting is nowhere along the journey has any of the medical team ever really discussed how to mitigate those side effects, that type of thing on there. That's all been discovery learning in the online forums where other members who are also on this journey there say, "Okay, well, I've tried this, it worked for me." Or in some cases they're lucky, their oncologists, urologists said, "Here, try this type of thing," but that is an interesting thing I find, which is the medical team doesn't want to discuss side effects.

They want to discuss treatment on there, but they don't want to discuss side effects and mitigating strategies that they can do and things that you can do type of thing. It's probably the weakest point in the chain. What I learned from the forums was... And again it was a literature search, like University of California San Francisco had some excellent penile recovery therapy guides on there. So, that was useful for me to read that and understand, "Okay, well, here are the various tools associated with recovery erectile function," things in there. There are also some literature about the role of exercise in strengthening the immune system on there. So, when your cancer is in a knocked down state on there, perhaps the immune system is maybe why I had a five-year hiatus from it. I go to the gym every day. The gym is 45 minutes to an hour on the indoor bike and I lift weights and I swim 1,000 meters.

I do that five to seven days a week, I think on there. During the good weather, spring and fall, not necessarily the summer in Kansas, because it's 100 degrees and humidity is 200% there, but I ride my bike 25, 35, 45 miles type of thing on there. And again, you do literature search, other members of the forum talk about if you can keep a moderate diet, if you can have an exercise program on there, if you can manage your stress on there, those can help your body both manage the side effects, perhaps mitigate them in terms of being less on there. Again, you can't run parallel universes there. So I can't say, "Okay, Kevin, you don't exercise, you lay on the sofa," type of things there, complaining about the side effects. I won't compare you to Kevin who gets up and goes to the gym type of things on there and see which is the better there.

Intuitively, I think it's obvious type of things there. But so the members of the forum did point me to various literature I could read about erectile dysfunction recovery therapy or rehab therapy there, as well as the role of diet, exercise, and stress in managing your side effects, as well as mitigating on them. And the hot flashes forum did point me to various medications that their doctors had prescribed or they had found. But I always look at those and going, "Gee, more side effects, thank you." And since they weren't life-altering for me on there, I was like, "Nah, I don't need another medication with more side effects. So, we'll just work our way through these." What you find is family and friends don't want the details of your cancer treatment type of things on there. "How are you doing?" "I'm doing great." They don't want to get into, what are the side effects of Lupron?

Incontinence type of things on there, prostatitis things on there, hot flashes, they really don't want the details type of thing, and I don't blame them. I understand type of thing. It's one thing to ask, how are you doing? It's another thing to sit there and listen when you describe penile recovery therapy, they're like, "Yeah, okay." That's a popular discussion point among men type of things on there. Side effects, they're like hot flashes, things are there. So, I found that even though family, friends, and acquaintances supports you, they don't want the details. You're not going to have a conversation with them about treatment options, side effect profile, and that kind of stuff on there. That comes from the members of the forums of the various communities type of things there. Mayo Clinic, Mayo Connect on there, Inspire, there's a Male Care that I'm a part of things. I'm on a couple of Facebook sites type of things on there.

That's where you can have this heart-to-heart conversation on there about side effects, treatment type things on there, but family, friends? Meh. I play once a week pickleball with my dad on there. Trust me, they'll ask, "How are you doing?" But they don't want a conversation about the load of details, because it's just like, "Nah." I mean, number one, that's your partner for life things on there. So, knowing that she's there is worth its weight in gold type of thing on there. Whatever she could do is come to my appointments and say, "That's not what he said, Kevin," things on there, or, "You forgot, you said you wanted to ask this question," type of things on there. So, she does not have the level of literature search that I've done type of things there, but she's been there taking me to my appointments, being a second ear for me type of thing on there.

And when I was doing chemotherapy, she would do her best to prepare something that I could eat type of thing there. So I mean, she's been my support. I have lessons learned for me and for my doctors. So, the first thing is you can have your pity party, that's okay there, but then pick yourself up off the floor and start to understand what it is you're dealing with. First off, you can't have an intelligent conversation with the medical team unless you're familiar with their language on there. You can't talk about ARIs unless you kind of know what they are, kind of in a layman's term, what they do. If I say, well, there are differences between the ADT say order of action or Lupron there, you got to understand okay on there. If I say NCCN guidelines on there, it's got to click with you what they are, where I find them on there, and how I use them in my discussions with my medical team.

So you've got to inform yourself, learn the language on there, and then have discussions with your medical team type of thing on there. My rule is I never attempt to try and tell my medical team there what to do. I simply say, "Okay, these are some of the literature that I've found on there." And I use reputable sites. I mean it's Mayo, it's MD Anderson, it's MSKCC, things there, it's the Fred Hutchinson type of things there, you have the PCF, PCI, all that stuff on there. But if you know the language, if you know the terms, you kind of know the definitions there, if you're familiar with guidelines, things on there, then you could have a conversation with your medical team, what I call a graduate level things there. And it can be a shared decision making, relying upon the training, education, expertise of your medical team with you as a participant in a dialogue and discussion there, not as a monologue on there with your medical team sitting there talking to you and your eyes are glazing over, because of these terms type of things on there.

So pity party, yes, but after that, get up, educate yourself, and have informed discussions with your medical team about decisions type things there. So, that's I guess would be my advice. Again, as I said, back in 2014, it was a Stone Age on there. Maybe we were at the medieval period I think on there, but in the last 10 years it's been revolutionary change brought about by medical researchers on there to the point where we have a plethora of choices in there. Of course, along with that comes paralysis by analysis type of thing. So from there it's like, "Okay, all these choices about what treatment I'm going to do," and things there and people, they're panicked. "I don't know how to decide." Well, your medical team will help you decide that type of things on there.

And so, I think we're entering into a period of what I call instead of population-based medicine, we're going to make it patient-specific medicine things on there. And we have genomic testing now on there. So, when I come see my medical team, instead of saying, "Okay, Kevin, will the NCCN guidelines say this?" They're going to say, "Well, Kevin, your clinical data says this, and therefore here's a treatment option, which is specific to you," type things there. And if you think back to AIDS, AIDS was a death sentence, I think there. Today, people live with it type of thing on there. And so my goal, my cardiologist, she and I joke a lot. She's the only one who's ever given me her personal cell phone number there. She says, "Kevin, if you die of a heart attack, then I've been successful," I think so on there.

So, my goal is just to live a normal life there and see my doctor on there, stay proactively ahead of it, things there, make the tough decisions about treatment on there, just live on there. That's my goal. So like I said, my latest PSA readings while I was on Orgovyx was less than 0.04. That's what the lab could measure to on there. And then after that came off, the first one said 0.01. So you go, "Okay." And the next two came back in at 0.03 and 0.03 there. So, I liken this to being out in Western Kansas, Eastern Colorado in there where you can see for miles in there, and you see the headlight of a train off in the distance on there. So, you know the train's coming, the question is, how long will it take to get there? That type of thing, but you know when it gets there, you'll have a way to deal with it type things there, and you will type things on there. So, I don't worry about it in the meantime type of things there. I just stay on top of it.