My name is Dan Peddie. I live in San Diego, 69 years old at this point. My cancer journey began really about 2 years before I was diagnosed because I was beginning to have quite a bit of back problems, bone pain that I now know was due to metastasis. I traveled a lot for my work, I was a consultant, so I couldn't lay flat when I'd sleep at night. And so it was bothersome. I find during the day, usually, sitting in chairs or in meetings didn't bother me, but just always at night.
That led me to go to my primary care doctor and she thought, "Well, it's probably structural." I've had scoliosis my whole life and I was a runner, actually, since about 52 to 60 years old. And so she said, "Well, let's take you to the Spine Institute." So I did go there, started a therapy when they included X-rays of my upper and lower back and did the second set of sessions with them. And then all of a sudden, about 2 weeks later, I get a phone call and said, "We're sending you back to your primary, we're ending therapy." And I said, "Why?" And they said, "Can't say. Talk to your doctor about it."
She and I connected and she said, "Well, they've seen something, so let's do an MRI and then also a CT scan." That was August of 2019. September 3rd I sat down with my wife and her in her office where she said, "Dan, I'm so sorry, but you have advanced prostate cancer. It's metastasized to your bones." And she said, "It's incurable. All we can do is palliative care, and we'd like to start that right away."
After she told me the news, we moved into validating it. She said, "Look, other than legally I can't tell you have this, but we're going to do a biopsy, we're going to do blood test, and then we'll do a bone scan." So my biopsy came back, Gleason score 4+3, which gave me concern, of course. My PSA was over 1,000. They quit counting at the facility I was at after 1,000, so we don't know how high it could have been. And then we did the bone scan. This was the result of the bone scan. It was done 9 days later. On the left, you can see that's pre-injection. You can actually see where they show the dye went in my left arm. On the left of the front and the right of that slide is the back. And then 20 minutes after the dye, this picture's on the right. Because it was so extensive from, you can see, just below my knees to the top of my head. Later, they revised my diagnosis as aggressive stage 4 prostate cancer metastasized to the bones as it viewed.
So it was serious. Later, one of my oncologists told me, he let me know that I could have died had I not gone in and seen my primary and started course of treatment. So that gets your attention. That was kind of a scary time, although I will tell you that because of 2 years living with the pain, my first reaction that came was, "Oh, good, now we know what's wrong and why I am having these problems." And I think because I felt like the age, I was 65, just had turned 65, that there was no real need to complain about. If I died soon, I'd had a great life, had a wonderful family, great career. So it didn't bother me that it was incurable. I learned, of course, that it's a slow cancer and that we can prolong life through palliative care treatments. So we set out on that course.
The first thing we did was ADT. I got Lupron shots, and within probably another 8 weeks, we started me on abiraterone plus prednisone. And that, fortunately, worked very well. As we continued to do bone scans, particularly in the skull, they were concerned. You saw the picture that possibly the cancer was going to penetrate the bone-brain barrier, so we did, I think, at least three CT scans of my skull and each time that got less and less. In fact, by February that picture was, it wasn't gone, of course, but much reduced.
The only other thing that happened in terms of that part of the journey was I had a stroke in January. So 4.5 months into it. And I just attributed that to, I had to wrestle with LDL levels. My doctor wanted to put me on statins. I didn't want to because my dad had a hard time with it. Having a stroke convinced me to do that, of course, so I've been on them since. It was a moderate stroke. It did not leave me with any major impairment, but I did have to go through therapy. It took about 15 weeks. Because of not passing a swallow test, they put a feeding tube in me, very inconvenient. But for the most part, I recovered. And that's the kind of thing where every day you got to do exercises and you got to go to therapy and all that.
So in some ways it kind of helped distract me from the cancer because I had to recover from that first. In fact, I couldn't even take abiraterone because you can't crush the pills and couldn't put it in the feeding tube. So I went 15 weeks without it and that kind of made me nervous. But it actually was a good distraction and I worked hard to come back. I was a runner. Of course after diagnosis, I decided not to run for risk of falling.
I will go back after the diagnosis. We also did radiation. So I had SBRT on my back and both my hips, particularly my left hip, showed the most concern to the radiologist, and that proved to actually work and help be a part of reducing the cancer. After I was recovering from the stroke, I got really after it. I knew I didn't want to run, so I started walking. I got up to 10 miles a day. I was motivated and obviously that helped with treating the cancer too. As I learned later and saw the evidence of exercise as therapy. And, of course, my diet, I had the opportunity to change my diet, which I did. I went to a plant-based diet, and for 15 weeks I was putting liquid in my feeding tube.
But all that was good in the sense that by summer I was feeling positive. I was feeling like, "Hey, this thing's working." I did not have side effects from abiraterone other than possibly the stroke, because in post-clinical trials, they've seen that about 40% plus of people have some sort of hospitalization due to what they think is abiraterone hormone therapy. It could have been Lupron too. But I was feeling good. I think by the time of the first anniversary, I understood I might have a number of years.
There's a lot of treatments available. Abiraterone was working, didn't have any major thing. My bone pain was still there. And so I had been prescribed oxycodone early on, so I was on that through those periods. I didn't like taking four pills a day, so I would just use it more surgically, I called it, where when I had pain, I'd use it no more than probably two a day. Part of that, I'm a big believer that pain's okay, it's a good signal to you. That's something you need to pay attention to. So I wasn't worried about eliminating pain, I just wanted to manage it. But I still was concerned about opioids.
Well, into the second year, decided to switch healthcare companies, so I moved over to a place called Scripps here in San Diego and got much more of a team put around me, orthopedic oncologists, neurologists because of the stroke, cardiologists because I was starting to have some effects on my heart with the hormone therapy, and, of course, no testosterone. Both those things can add to that. Again, I felt very good that we're not missing things. We're looking at opportunities. Abiraterone continued to work in, actually, a whole year.
So I was on abiraterone about 32 months, and I know that's kind of on the outlying. Usually it's about 18 months or even less, but it worked, so we did. Kept getting Lupron shots and my oncologist was very positive. Multiple labs, of course, to check my blood. And as you would expect, and I think is very common knowledge, my red blood count plummeted and it's never gone back to normal because of the cancer affecting the bones. So I had some anemia, but you'd fight through it and, of course, exercise is one of the ways you can manage anemia, so that fit into what I wanted to do anyway in terms of keeping my health good and walking and all that.
In the spring, my PSA started to rise, and using the formula of doubling every 2 months, it climbed from about 2.1 to 7.6. So that raised the red flag. We agreed together that we should try moving to another hormone drug, which was Xtandi or enzalutamide. And so we made that move in May. The month after. That did not work, though. My PSA continued to climb, and I actually had more side effects from that than abiraterone. I had a lot of fatigue, a lot of shortness of breath. It was not pleasant. We went all the way into August, which, at that point, then, in 2021, we did a blood biopsy to just see if there's mutations going on. I had already had a genomic test early on and showed there was nothing in our family history. So this was an acquired cancer. And in that blood test, we saw that I did have a mutation, CDK12 gene, which is pretty rare, 5-7% of cancer patients have it. It is pretty marginal in terms of how extensive it was showing up. But that, again, told us hormone therapy is probably not going to work.
So in October, we moved me to a PARP inhibitor, Olaparib, and that one proved to be effective for the first 30 days. My PSA went down quite a bit, so we were very helpful. Again, I had some symptoms or side effects that were a lot like Xtandi, a lot of shortness of breath and fatigue, just 24-hour fatigue kind of thing. I was willing to stay on it, but by the second month, PSA started to climb, by the third month, it was the highest it had been. I had always been interested in clinical trials. My doctor agreed, "Yeah, since a PARP inhibitor isn't working, maybe we should look at some trials."
With the blood test in August, they give you a list of trials that are going on for that particular mutation. There was, like, seven of them, and I contacted all of them. A couple I didn't qualify for. Ended up talking to the trial lead in at Harvard, and he said, "Well, yeah, you'd qualify for this, but you probably don't want to travel across the country for all the tests and treatments." I said, "Yeah." He said, "Why don't you go to UCSD in San Diego? There's an oncologist there, Rana McKay, who they've worked with her before, high confidence, she does a lot of trials. In fact, she was doing one of the trials he was doing, but it was closed. So I contacted her, had a meeting in January, and we in '22, just last January, a year ago, and we agreed on that trial since it was closed, and it really wasn't proving any good results yet. Not negative, but there was no real definitive outcomes happening.
So she suggested another one that included a combination of chemotherapy, which would've been my next standard of care treatment anyway. And in fact, my oncologist at Scripps, we agreed, "Let's try a trial, because we can always bring in chemo later." So the trial, that was a monoclonal antibody called Cirmtuzumab. After the first month of getting all the tests in March, I got three treatments of a monoclonal antibody, and then we started the combination of chemo and that. We did six treatments of that, which took me to the end of July. My PSA did go down. Of course, with chemo, I had all the side effects. In fact, still have some of my nails growing and you can see my hair hasn't grown back yet 6 months later. But I felt good about that. I knew chemo was going to be rough, and we've known many people who've had chemo, although docetaxel, I know, is much more tolerable than some chemos, but were positive about it.
The trial, my last dose was July 31st, and in my August blood tests, the PSA started to climb. September, it really accelerated. And so by October, we decided to take me out of the trial because it was obvious that the monoclonal antibody by itself, which was the maintenance program, once a month, you'd get an infusion, and began to look at what could be next.
We took really mid-October to look at options and other trials and all that settled on lutetium because I just felt like I'd like to get the PSA tamped down, at least, before we look at another trial. And because chemo was hard, I thought, "Well, I'd like to postpone another one of those if we can." So we agreed and started. My first infusion of Pluvicto was November 28th. I just got my second one. There's no combination, no other drug being done. We looked at that, but it was actually Darolutamide, but it's not yet proven in any study, so it could cause a lot of side effects. I decided not to.
So we're in that treatment right now and much better side effects. We really won't know until the third. Everybody kind of says that by the third treatment in the blood tests that you'll begin. Like I say, my first blood test after the first treatment, my PSA went up again, but that's pretty normal. It should plateau and then go down, which it did with chemo, same thing. First test it went up and then plateaued and went down. So we'll see if it works. I'm pleased with the outcomes. I've tracked all that stuff in research, so I'm confident it's good now. It may not work for me, so we're ready to go and switch out of it, which may not be completing the six treatment plan. So we may just pull me out sooner. But so far I've got some indications or feel a little better. So maybe it's working, we'll find out.
My PSA in October was 134, pretty sure. And then in November, a week before you do labs for Pluvicto so they can make sure you can tolerate it, and that lab, it had gone up to 185. So in November it was 185, and then this last one, it was 340-something. So it still didn't double, but almost doubled. Again, even the doctor at the administration of the treatment said, "Yeah, that's very common. Your body's cancer is kind of reacting to it and trying to accelerate its spread." So as right, it stands at 385, I think, at least last test. I get another round of labs in a week I think.
I've always been a researcher. I've had to for my profession. And so when I had the diagnosis, my primary care doctor, who we loved, thought she was wonderful, but she had said that first thing you need to do is not go on the internet. Well, that train had already left the station. I was already trying to find out, "Why do I have these pains?" And so, after learning how treatment could look, all the other associated things, again, the stroke happening and no one had alerted me that that could be a possibility, I just felt like I wasn't getting the complete services that I needed. So I, again, changed in 2021. I spent a year and a half under treatment at the other healthcare provider and then switched in January 2021.
So by the time Abi quit working, I was in the new provider system. So they continued that treatment because it was working. And even though I was on the outer end in terms of the time people are on Abi, why change it if it's working? My PSA was hovering around 1.8 to 2.3, so it was all good. It wasn't until that April of '21 that it started to go up. And it doubled twice, I think. So I think my labs in March and then April both had doubled. So that's when we decided let's switch to Enza and see what it might do. My PSA, it probably doubled within that timeframe, if not every month. And I was feeling pretty bad, too, on it. And, really, it helped having the blood biopsy in August. I was still on enzalutamide when we did the test, and when they saw the mutation, they thought, "yeah, that's probably why another hormone treatment isn't going to work."
We, again, agreed that we would just do the straight up Pluvicto treatment, nothing else added to it, even though I'm a big proponent of, I mean, I wish I had chemo and abiraterone at the beginning. Now I know it's being done. But we thought, let's just do the standard Pluvicto, see where that takes us. And then we already had research and looked, she had another trial going on there at UCSD, there's a few other ones. So, it might be time to do a treatment, but there's also, we can do another chemo, Cabazitaxel. So there could be some other treatments.
Very much as this wasn't working in October, my wife and I both said to her, "Look, are we at the end? Is it the end of the treatment opportunities?" And she said, "Oh, no." I said, "Do I have months?" And she said, "No." I have a low burden of disease. That's something she has always said. Now, you look at that first scan and you would say, no, I've had a very high. But my scans now are much more limited and it hasn't gone to any other organ that's stayed in the bones. So she's very positive about, if Pluvicto works, then we're going to have probably a couple of years.
If it doesn't, then there's other options for us. And we've talked about all the options. And of course, I've been on Prostate Cancer Foundation and a number of other webinars, so I kind of know the pipeline of what's best to try and do, and again, new combinations that people are trying. And I'm all for that. I don't mind at all being a lab rat. I think it kind of helps me deal with what's this going to benefit? I'm still going to die from it, but maybe I can help and be a part of finding something that's better than what they have today.
I do believe, because my primary care doctor did not do tests. I had had a digital rectal exam back in 2012 because I had a case of prostatitis, but I didn't have any labs for PSA. So I was aware of it, in general, but way off my radar screen. She belonged to the American Association of Family Practice that at that time was not doing, they felt like it was an abused surgery for the most part. And she since us changed her practice. Interesting enough, when I went to do the biopsy, the urologist there said, "Oh, yeah, we start testing guys at 50."
I think, to your question, I wish I would've been getting tested because I think I would've discovered much earlier and have a possibility of being 100% cured. I have a number of friends who had that, and they went through having a prostatectomy and all that and they're clean as a bell. So testing was something I probably should have asked for. We tested for skin cancer all the time because I grew up in Arizona, and luckily I haven't had any skin cancer, but I just didn't take advantage of that knowledge. So I think awareness, education. I mean, I'm big on that and one of the reasons I wanted to do this, so that people would understand that, like most cancers, early detection can save your life.
And then the other thing I would say, maybe if I'd been tested and discovered that I did have it at stage 1 or stage 2, I know I would've done research. So I would've seen what's going on now about dual or triple therapies, so that when I did have to start at that level of advanced treatment, that instead of just one and done, I would probably have pursued stacking it a little bit more, having a couple of treatments going on at the same time. Because it makes a ton of sense as they say. We do that with breast cancer. Almost every cancer. I have a friend that has a rare leukemia, and boy, they gave them two or three different things at the same time. So I think we're ready in the prostate cancer area for that. I know I would've pushed for that kind of an approach, which would've added to, I don't think I would've gone off ADT or Abi at all, I think we would've just added to it, which is being done nowadays.
Abi was very manageable, had none of the hot flashes, none of the other things. I actually lost weight instead of some guys gained weight. Of course, the stroke helped with that because I couldn't eat for 15 weeks and I haven't gained that weight back. So it's been nice. I've always been big, and so it's been nice to have a normal weight now. I would say that between Enzalutamide and Olaparib, it's kind of a cross between which one was worse. There were times I'd get up from a chair, I'd have to lean on a counter and catch my breath. I had no energy. It was really hard, even harder than chemo in that regard.
Chemo had the other effect of, I had a lot of bone pain as the cancer was getting killed off. And my bone pain has continued to escalate. We know now where the cancer is, and all those spots have some pain that I manage. And I think, too, that in terms of pain management, again, I was on oxycodone for 2 years. Went in when I switched over to this other provider to look at, orthopedically, what could we be doing to help me? And so I went to a pain management doctor. He was testing to see if an epidural would work for me and to do two different treatments a week apart. In that, I asked him, I said, "Doc, am I going to be on Oxycodone the rest of my life?" And he said, "Well, you've been out 2 years. You actually need to get off it." I said, "Well, wonderful, because I'm not comfortable taking it with all the addiction going on." I didn't trust myself to not have that problem.
So I said, "What do I do?" He said, "Marijuana." I said, "What? Tell me more." He said, "Well, I'm not a marijuana doctor, but a lot of people with metastasis have a great response to using CBD and THC." So I literally left that appointment and went to a dispensary and shelved my oxycodone, and I've been using balms for rubbing on the bones and gummies when I have intense pain. I even have THC combo stuff that I use, again, usually at night because it's still more painful at night than any other part of the day. I'll save that to be used, again, more surgically. So pain management is something, an area that I wished I'd kind of known about instead of just immediately going into Oxy, which, at that time, really was kind of a standard approach. It seems like everybody's kind of changed their model on that one since. They still use it, and, of course, I may need it later, but I'm glad I didn't need to use it.
Well, again, repeating, you've got to test and test as early as you can. If you're my age and you just found out, you've got to get testing. And of course now it's part of my treatment plan. I get tested for PSA every month. Secondly, educate yourself on what prostate cancer is. Again, Prostate Cancer Foundation, Prostate Research Institute, ZERO. I mean, there's so many organizations that can give you all the tools you need to understand it, understand treatment plans, and not fall into that hole of despair or fear or anything. I think education, for me, at least, it helps manage fear. And while I never really had that through the 4 years I've been in this, there's times when you wonder, "I'm not going to get cured, so why am I continuing to do treatment?" There are moments like that. But education, and again, as Dr. McKay says, there's so much in the pipeline. We're standing on the edge of probably some really good progress.
The third thing, I would say, is listen to the recommendations about lifestyle. Again, switching to a plant-based diet, continuing to exercise, even though I have to limit it, I think it has given me more life and certainly a better quality of life. At some points, you feel like, "What? I don't even want to exercise. I hurt so much or I'm fatigued." But that actually, if you get out there, and I walk a lot now, try to get two to three miles in and I use light weights and do core routines and I use a jacuzzi to do water exercises, part of that just helps you mentally and it makes you feel like you're not, again, going in a hole.
That also, I think, really helps me, and I've been a believer of this, but now I live it is, I have to own this. I can't look to a doctor to fix me. No matter what the treatments are, I'm the one that has to make these decisions. I'd say, don't be afraid. As I've done, I've changed twice healthcare providers in order to take advantage of better care and treatment. So again, testing, education, nutrition, and don't hesitate to ask your doctor some hard questions.
Obviously at the beginning I had no idea the scope of what's going on in treatment developments and all that. So I would say be encouraged that there is a lot going on and there are groups that are coming together and other institutions. I look a lot at Mayo's stuff and website seminars and stuff. There's plenty out there for you to be hopeful that a treatment is available that can extend your life and give you a higher quality of life. I'm one of those where I don't care how long I live, I just want to live a good life. I don't want to be institutionalized or laying at a bed. I'd much rather die quickly. So there is plenty of options out there. There's not a cure yet for this stage, but at least there's things you can discover.
I just found out, and this is the point I want to make, is a person in Arizona who I was introduced to a year ago, had a lot of conversation, emails, exchanges, and he gave up. He did not like the hormone therapy, what it did to his body. He was an outdoorsman. He couldn't do a lot of that stuff anymore. So he went off treatment and he passed away in December. He was literally only under treatment for a year and just got so disheartened. I tried reaching out again in September to him, he never responded. It's unfortunate. I don't think you need to go there and certainly get past the kinds of treatments that are just meant to hold cancer down instead of cytotoxic treatments that kill the cancer. At least get to that point. And while there is more pain, there's still no cure, I think you'll feel like you can live a life that is certainly different, but it's worth living and the things you care about, your family, your grandkids, all that kind of stuff. There's a pathway for you to have a meaningful life.