I'm a 57 year old marketing executive. I'm a husband, the father of three. I enjoy surfing, and I am also a patient advocate. I saw my general practitioner, he saw that my prostate was enlarged. I went to a urologist. We went through a number of different office visits, and then I decided that I was going to have a biopsy.
The results of the biopsy came in when I was at work. I'll never forget it, it was about three o'clock on a beautiful Sunday, or beautiful weekday in San Diego. I just wrapped up a meeting, and I had about 10 minutes before my next meeting, and I listened to my voicemail, called the doctor, and he told me that I had prostate cancer. So that is a life altering diagnosis, but I didn't really have time to process it at the time. I had to go into another meeting.
What do I do now, in terms of processing that information from the doctor? You really don't know where to go, or what to do, because no one really walks around in life thinking that they're going to get cancer. And for me, I've prided myself on being very active and living a healthy lifestyle, and so, it's just a complete shock for me. So because I sort of classified it as, okay, this is a problem, it's maybe a whole lot of other problems. It's more complex, it's a completely different field. But I recognized that I needed to do everything I could to solve for that problem. But it was a real shock. I not going to lie, you just don't expect to get that diagnosis.
So anyway, that really was the prompt for me to begin to research. And so, that research led me to believe that there were opportunities that the treatment for cancer was evolving, and it centered around precision medicine. That was a concept that I could understand, because I spent the better part of 25 years building personalized experiences for consumers. And I knew what it took to build those personalized experiences; and first and foremost, it's about understanding who your consumer is. You can't personalize a e-commerce transaction, or a support call, unless you really know that consumer.
I started where probably everybody starts, which is Google. So just researching through Google, going to, I knew that I needed to go to trusted sources. And so, I went to NCI. I can't remember if I went to URO Today. But a number of other publications that could help me gain an understanding of what this disease is, how to think about it, and how to find the right care. I had a decision that I had to make very quickly, which was, do I, based upon my Gleason score, which came out from the biopsy, I knew that I needed to take some action.
Active surveillance was possibly an option, but really wasn't recommended. And so, it really came down to, at the time, local therapy. Do I do surgery, or do I do radiation? And as you can imagine, as you're skipping through life, you're not thinking about, "I have to have surgery or radiation within the next two, three months." It just isn't something that's part of your plan. So it took me a fair bit of work to determine which of those two primary options, there were a few others, but those two primary options I wanted to pursue. And I made the decision to have surgery, and I had that three months after my diagnosis, or actually maybe even a little bit less than that. So I made a decision fairly quickly. And my prostate cancer was contained within my prostate. I had negative margins. But apparently, it had already metastasized, even though it wasn't really visible on imaging.
And so, after I had a prostatectomy, my PSA did come down, but then it began to rise again fairly quickly. And so, that's when I learned that I had very aggressive prostate cancer, a Gleason nine, and that maybe there's one other line of therapy I could do that could have been curative, which was radiation. So I did 40 rounds of radiation after that. Unfortunately, that was not curative. And so, that required additional therapies, and included first-line hormone therapy, second-line hormone therapy. I've had another surgery. I've had chemotherapy, immunotherapy, another second-line hormone therapy. And right now, I'm looking down the barrel at potentially another surgery or radiation, because I'm becoming refractory to several drugs. And so, I need to find some new answers. And the good news is, that I do have a menu of new options to choose.
Based upon what I know today, would I have changed my decision? No, I don't think so. I think I made the right decision. So making that decision between radiation and surgery, I went about it by talking to doctors, doing my research, talking to other patients. And really, what it came down to was that if I did surgery, I would do less damage to the surrounding tissue that would occur from radiation. And so, I decided to do robotic assisted, a robotic assisted prostatectomy. And so, that was really the kind of driver, which was to say, well, if something does go wrong and it's out there, a plan B would be radiation. And so, that was sort of like my thinking.
You have to get involved, you have to be engaged in what you're doing to solve this. I am lucky that I have incredible care, but I also know that, as great as my care is, unfortunately, there aren't unlimited resources to apply to my cancer. And because my cancer is now stage four, I've been stage four for many years, it gets more complex as you kind of go farther out on the branches. And with greater complexity, there's often less data, there's less consensus about what to do. And so, it's really up to the patient to, the way that I think about it, to flank their doctors, to help them help the patient. And that's the way that I've approached it. For me, that's really necessitated getting in much more into the science, particularly genomics, to run certain analyses that wouldn't necessarily be off the shelf.
So for example, another fellow, a prostate cancer patient and I worked with a genomics company to do custom RNA-seq analysis, and we did that. And through that effort, it identified a implication of a gene that was targetable, and there were clinical trials that actually could treat that. Had we not done that work, we wouldn't have known that there were other treatment options. And so, the good news is, is that treatment option, even though I haven't pursued it yet, it's on the table for me to pursue, which is that's a great option to have.
In prostate cancer, we have a biomarker, it's PSA, and so you can really track the progression or regression of your disease, based upon the treatments that you're taking. So each treatment is very different with surgery, you have issues related to recovery, and that's the main thing. With hormone therapy, hormone therapy is a androgen deprivation. It can be very effective early on with managing the disease, but it comes with side effects. Fatigue is a big one. Mental acuity can be another component of it. There's just a host of issues related to hormone therapy.
I did have chemotherapy. I did chemotherapy in combination with immunotherapy. I did three months of chemo, was on Keytruda. And after the three months of chemotherapy, I stayed on Keytruda for another nine months or so. With chemotherapy, it was effective in systemically treating my disease. I was very diligent about trying to exercise as much as I could, going through chemotherapy. Again, fatigue. I didn't have neuropathy, and I don't think I had neuropathy because I was active. I was walking. If I couldn't run, I would run. If I could, I would surf, I would do whatever exercises I could. And I think that that minimized some of the side effects of it. But for about six, seven days of having a chemotherapy infusion, you're going to feel it. And then eventually you crawl out of that. You've got two weeks where you're feeling okay, and then you get hit again, and that cycle repeats like six times. So chemotherapy was a bit of a challenge.
With immunotherapy, no significant side effects. I did notice, when I got off of Keytruda, that I had pretty bad headaches for maybe about three weeks or so, but that was the major side effect from that.
And then, I've been on hormone therapy since. And yeah, I think the big thing here is just fatigue. Fatigue is a major challenge with second-line hormone therapy. And I think that there's probably accretive effects over time. So how I tolerated it, tolerated it four years ago versus how I tolerate it today is probably, it's probably worse. And I don't know if that is common amongst patients, but I just think that the aggregation of hormone therapies have accretive and deleterious impacts on your health.
In terms of managing the side effects, the one thing I can control is just trying to stay as physically fit as possible. Eating well, of course, and getting rest. So I do try to work out as much as I can. I run, I surf, I do these things. And I just believe that exercise has always been a key component of my life. It's the one thing I can control. And the way that I think about it is that, it not only helps me to get through my existing treatment, but it also helps to keep me strong. Because I know that the treatment coming, up after what I'm currently on, is going to be even less tolerable than what I'm currently experiencing.
So for example, I'm going to have probably surgery, here in another three weeks. Well, that's going to be my third surgery. A little apprehensive about that. It will not be robotic. But I want to make sure that I'm in good cardiovascular health, and that I'm strong and I'm fit, so that I can recover as quickly as possible. Because after I go through surgery again, I've got other drugs that are coming my way that also are going to be, are going to have probably higher risk profiles than what I'm currently on. And so, I just want to make sure that I am as physically fit as possible, to take on the side effects from these drugs. So it's basically physical fitness. I eat well. I think I've done a good job with diet, I think, throughout my 57 years. Those are the main things though that I've got to focus on.
The role that my family has played, over and above the things that I can control with physical fitness and diet, is that, they've been so supportive of me. I have a wife and three kids, ages from 17 to 25, and they all play different roles. The common denominator is moral support. They're there to pick me up when I'm not having a great day. They're there to take care of the daily activities. It could be basic things like household chores, cooking, and things like that. And then also, I have an athletic family. So everyone is very oriented towards exercise. I work out with my kids, or I surf with my kids. And so, those things are sort of the bedrock that give me the strength to exercise and to take care of myself. So having a support system like that is so important.
Also, we talk probably a little bit more about treatment options, what I should be thinking about. And then the other thing too, because I'm a patient advocate, and I am helping other patients through the Prostate Cancer Lab, get educated about their disease and to get treatments. And my family's also very aware that I need to take time for myself. And so, they're good about just helping to keep perspective on what's working, and what I should be focusing on.
In terms of next therapy. So I am lucky in that my disease is soft tissue based. So at this juncture, I don't have any bone metastases. Everything is soft tissue and it's fairly local. So that means that surgery, or potentially radiation, I'm looking at proton therapy, but more than likely it's going to be surgery, is on the table. And so, I will more than likely pursue that. And then after that, I understand that there's going to be about a three week recovery. I don't know if that means I'm going to be housebound for three weeks, or I can't go surfing, or I can't go do whatever I need to do, but it will definitely be a longer recovery than robotic surgery that I know for sure.
But I also know that surgery is not going to be curative in this case. I have had polymetastatic disease, so that's several different lesions in different areas. And I have microscopic disease. So it would be nice if all of this disease would be located in the areas that will be resected, but I think that, that's wishful thinking. So I know that I'm going to need systemic therapy. And through the Prostate Cancer Lab, we work with sort of a marketplace of life sciences companies that take all of my electronic medical record information and my genomics information, and then use that in their own platforms to identify clinical trials, or to identify combinatorials or off-label drugs, which I've been on off-label drugs, or even standard of care, although I'm pretty much past the standard of care.
So using that process, I've identified 21 different treatment options. Many of them have been taken off the table, for various reasons in my case. So I'm looking at probably three or four different treatment options. They're anything from Provenge, to looking at an antibody drug conjugate, clinical trial with that, to Pluvicto, radio ligand therapy, or potentially another targeted therapy, or even maybe bipolar androgen therapy, which based upon some recent whole exome sequencing, the dynamics of my cancer have changed. I now have two mutations that may weigh in the favor of bipolar androgen therapy. And so, that's something also that I'll explore with my provider.
Getting access to a clinical trial that's local is important. And there are resources out there that we work with, that help to identify those clinical trials that are local to you, that are specific to your EMR and your genomic profile. You have to get signed up, you have to qualify for the clinical trials. So if there have been certain treatments that I've been on, they may disqualify me from certain trials. So the qualification can have a very narrow focus, because the drug companies are trying to ensure that they're finding the best candidates for their drugs, that they're really targeting for their drugs.
And so, qualification is a whole process in and of itself. Signing up for it, and then making sure that all the prerequisites are in place. It could be getting imaging beforehand, so they have pre and post measurements. Of course, taking blood lab work to understand a biomarker like PSA. And then periodically, going through the process of checking all of these measurements throughout the clinical trial process. I have done off-label drugs, but I was fortunate in that I could get access to these drugs, and not have to go through the protocols. Going forward, I think the likelihood of that is less likely. And so, I will more than likely be on a clinical trial.
What have I done with my genomic profile information? So it's interesting, I got sequenced fairly quickly, right after my first surgery, and it identified three different mutations. Those mutations really weren't clinically actionable. And so, that's why I decided that I wanted to go after RNA-seq. And through the RNA-seq work that we did, we identified really, four different targets to go after, that we thought were clinically actionable. And they are. So for example, I have a very high expression of PSMA, which opens up the door for Pluvicto, and hopefully, a very positive response. I now have AR copy number gain plus TP53. Those are two distinct cancer identifiers that could play into bipolar androgen therapy. I also have a very high expression of AR in and of itself. So there are AR degraders that I could potentially go after. And as I mentioned, there was another target, which is CD276, or B7H3, which has a clinical trial, it's an antibody drug conjugate that targets that particular gene expression. So there's four, three or four right there.
Again, working with these other providers, we have identified 21 different treatment options. Some of them are combinatorials, where they're looking at certain genes or gene expressions, gene mutations or gene expressions. And then looking at pathways, and the drugs that can target each of those different pathways. Those particular treatments are a bit more difficult to implement, because of questions around dosing. But even without those particular treatment options, which I'm still going to hold onto, because if we can figure out some of the dosing components, they can be very, very relevant. 21 was reduced down to about eight. And then from the eight, we've kind of solidified around four. And those four will go, they will be systemic treatment options that will follow the surgery that I'm going to have in the next few weeks.
In terms of involving my children, I don't have any germline mutations, so that's good. I do know other cancer patients who do, and that obviously puts their kids at risk. So for me, my kids are less at risk, but they're also learning, through sort of osmosis, a new language around genomics. And in my case, it's all somatic variations. But that's useful for them. My two boys are sensitized to testing when the time is appropriate. They're fine right now, but as they go through life, they'll have more options for screening. Galleri could be one, and there could be others as well. So they don't speak all the language around genomics, but they've learned enough to be sort of dangerous. And they also see the experience that I've had, and I think that they're just sensitized to how to detect and how to manage cancer.
As a patient advocate, I think my engagement over the years has kind of changed as I've gotten deeper and deeper into my journey. And frankly, the stakes have just gotten a lot higher for me as I've continued on my journey. But again, my focus just given my business background, has really been around understanding my cancer. And what I found going through this process is that, we focus too often on treatments as opposed to the diagnostics. And again, it's hard to personalize a treatment, unless you truly understand what the dynamics of the cancer are. And so, I'm working with another very talented bioinformatician who has stage four prostate cancer. And then also, another cancer survivor, whose background is in management consulting. And we realized that we needed to provide, not only myself, with cutting edge research tools and diagnostic tools, but we needed to be able to pair that with treatments.
And so, we started this Prostate Cancer Lab to really, using me, and my other stage four prostate cancer survivor, as sort of the tip of the spear to figure out, okay, hey, how can we integrate spatial phenotyping, or whole exome sequencing, or whole genome sequencing plus RNA sequencing, into our cancer care in a meaningful way? Where it will actually help us understand, for example, what's happening with the tumor microenvironment, provide clues on why we have cold cancers, why I have zero tumor infiltrating lymphocytes? So focusing on diagnostics.
And then, we began to identify companies that could translate some of those diagnostics into treatment decisions. And as I was going through that process myself, I realized that there were other patients that could benefit. And then some people found out about us, and we realized that what was benefiting me, and how I was pursuing my cancer journey, would benefit other patients. And so right now, we have about seven different patients that are going through this same process of using this marketplace of treatment providers. We also are offering educational services. So every week we have a key opinion leader who comes and speaks to us about everything from pharmacogenomics, to neoantigen vaccines, to functional testing and organoids, you name it, spatial phenotyping. We have adaptive therapy. We have some incredible resources from Stanford, to Dana Farber, Johns Hopkins.
Many different organizations are helping us to educate not only me, but also other patients. And it's inspiring, because this is a different language. I didn't major in any kind of biology, or chemistry, and certainly not genomics. And so, this is a new language for me. It's a new language for other patients that we know. But we're seeing that through osmosis, our patients are picking up this language, and it's really, really important, because they come away with more education, more knowledge about their disease. They come away with treatment options provided by amazing labs that do incredible work. And when they go and they have their conversation with their doctor, they can have a much more educated, much more elevated conversation, in how to treat their disease.
So as a patient advocate, I was not so much focused on the moral support. This is really about solving problems. And I think that this is a carry on from my career, being a marketing executive for many years and working on complex problems. This is just another complex problem. And maybe my emotional support comes through, not only my family and friends, but also, being a part of solving this problem. It's rewarding. It's inspiring. And I'm hopeful that I can give back in some small way. And along the way, hopefully, come through with some breakthroughs in my particular cancer case.
There are so many different new technologies out there. They're evolving every day. I'm learning about them through our weekly seminars. But often, the pace of discovery, we'll just keep it with diagnostics, is just not, it's not being integrated into treatment. There's a company that we know of who does spatial phenotyping, and they've supposedly instantiated these machines in one of my healthcare centers. Yet, trying to understand, or get access to that amazing technology, seems like I have to go through a maze of different people to try to connect the dots and make something, use this information, or use this technology.
So I think that, that's part of the frustration as a cancer patient, the pace of translational medicine is just not fast enough, and that means that we have to change elements of our healthcare system. I'm sort of effectively a cancer Sherpa, where I'm trying to connect dots everywhere, from between these labs that are doing these amazing diagnostics, to getting them integrated into clinical care.
Oh. And one other thing too, pathology and tissue are critical, because you can't do most of these diagnostics without tissue. Yes, there's liquid biopsies with blood, et cetera, but tissue is critical. And so, tracing that path all the way from, I guess, from pathology to the labs, and then all the way through to clinical use, requires, it's like a full-time job. And I think that, that's what healthcare could really benefit from, is having these kinds of patient navigators, care coordinators, that are really steeped in all this technology, and can help the patient navigate through this. We need to change that, because right now, it's really left up to the patient to connect a lot of these dots. So yeah, anyway, we need help. We need help on that front.