Jump To Jump To Listen Transcript Register The PROMISE Registry & Clinical Trials May 28, 2024 In this episode, we explore the groundbreaking PROMISE Registry, a research study aimed at understanding how genetic differences can impact prostate cancer patient outcomes. Our guests, Dr. Channing Paller and Rudy Burwell, share valuable insights on the importance of this collaborative effort between doctors, researchers, and patients in the fight against prostate cancer. The PROMISE Registry is open to all prostate cancer patients, regardless of their stage of treatment or survivorship, and by joining this study, patients can contribute to the development of precision medicine approaches tailored to individual genetic profiles.We discuss the crucial role of genetics in understanding prostate cancer and how the PROMISE Registry is building a comprehensive genetic database through a grassroots network of patients. By analyzing genetic information from partners nationwide, PROMISE aims to lay the foundation for future prostate cancer knowledge and treatment advancements. Join us as we explore the potential of the PROMISE Registry to revolutionize prostate cancer care and learn how you can be a part of this groundbreaking initiative.Listen Transcript Expand All Transcript Jeremy Patch:Hello and welcome to Prostate Cancer Uncensored, a podcast by ZERO Prostate Cancer. I'm Jeremy Patch, ZERO's Director of Patient Programs and Education. I'm excited to host this special podcast episode about PROMISE, a registry of prostate cancer patients participating in a research study to learn how genetic differences affect patient outcomes. I'm joined today by Dr. Channing Pauler. Dr.Pauler is an associate professor of oncology and urology at Johns Hopkins University and Director of Prostate Cancer Clinical Research at the Sidney Kimmel Comprehensive Cancer Center.She is also the Associate Director for Oncology of the Johns Hopkins Clinical Research Network and is focused on caring for patients with genitourinary cancer. Dr. Paller is the co-lead investigator of the PROMISE study screening 5,000 men for genetic mutations and following 500 of them to help match them to targeted therapies. We're also joined by Rudy Burwell, a patient and PROMISE study participant. Thank you both for joining us for this important discussion on genetic testing and options for patients. Dr. Pauler, we'll start with you.Can you tell us a little bit about your background in oncology?Dr. Pauler:Sure, thank you so much for having us today.This is really exciting that we have this opportunity to share about the PROMISE registry with friends and family. So I graduated from Harvard Medical School back in 2005, and even in medical school and all throughout my training, I knew the importance of genes.It has been becoming more and more important. And so I realized that prostate cancer needed to catch up. It needed to catch up with lung cancer and breast cancer and all the other cancers out there that were finding genetic mutations in their patients and had targets for them.So for example, in breast cancer, we always knew about BRCA. And so I was really excited that the PROMISE registry allowed prostate cancer patients to learn about their genes. So it's a registry that allows patients to participate in research and collaborate with researchers and physicians to learn about their genetic differences and see how that affects outcomes. We wanna learn how different drugs affect different genes and also learn about how those genes may affect families, right, because these are genetic mutations that may be passed down in your family to siblings and children. And so I think this is really a wonderful opportunity to both help the individual prostate cancer patients and their families.Jeremy Patch:That sounds great, thanks Dr. Pauler. So what are some key and most promising areas in prostate cancer research today?Dr. Pauler:One of my favorite areas is looking at precision oncology. And when I first was going into medicine, chemotherapy was the main treatment, which was a toxic chemical that killed all cells that were dividing in the body. And so precision oncology is the concept where we're tailoring medicine to patients individually depending on their genes or other targets on their cancer. It looks at genes, environment, lifestyle, and it's not the sort of one-size-fits-all approach that's been used previously to treat prostate cancer. And so now we're really looking at people as individuals and targeting them, their cancer, to better treat them and limit the toxicities, right? So I have patients that really like this concept that, wait, I don't have to do chemo yet. There's another option. That's really exciting every time I get to share that possibility.Jeremy Patch:That's great. So truly personalized medicine, what we're talking about, really, which is great. So you gave us a little intro into the PROMISE Registry already, which you and Dr. Heather Chang of the University of Washington launched in 2021. Can you tell us a little bit more about what it is and why it is so important?Dr. Pauler:Sure. So, PROMISE Registry is going to examine first what a patient's susceptibility to different genes are. So, maybe they have a family history, maybe their mother died of breast cancer. We're now learning that pancreas cancer can be associated with certain genes with prostate cancer. Or colon cancer has certain genes associated with prostate cancer. So we're going to learn about the influence of the genes of your family onto passing that down and the development of prostate cancer in families. We're also gonna learn about the effectiveness of different treatments for prostate cancer, right? So when Olaparib, one of the drugs approved for BRCA patients, both in breast and prostate, was first approved, it was approved for 15 genes. But one of the things that came to light was that one of the genes, ATM, those patients didn't respond as well as we had hoped originally. And so we're really looking at specific genes and individually. Otherwise it’s too hard. If we don’t work together and get many patients with these genetic mutations and follow them over time we’re just not gonna get the numbers we need to really understand the impact of these different treatments have on different genes. We also wanna improve guidance.So one of my patients said, Dr. Pauler, we know you love research and giving us the next drug before we need it, but a lot of patients don't even know the standard of care. Many patients don't even know that there's a drug available for them or that they even have a mutation to get that drug. And so we also want to improve guidance for just routine standard of care for patients and make sure they're getting the treatment that they deserve. And we also want to explore areas, right? We want to have some hypothesis generating data to learn more about what‘s out there. So we're learning there are several patients with MUTYH mutations in prostate cancer.What does that predispose you to? So there's lots of different opportunities here for generating new research, for giving patients better care, and educating their families about risks that they may have with different mutations.Jeremy Patch:What do you hope to achieve by establishing the PROMISE registry?Dr. Pauler:I hope that every patient with prostate cancer in the country knows their genetic background. I hope that they can better inform their care by educating themselves and their physician. And I also hope that they can educate their families if they're at risk for genetic mutations so that they can advise their children that maybe they too should get tested and maybe they too could do different things to help prevent developing cancer in their lifetime.Jeremy Patch:That's great. What are the benefits of joining the Promise Registry? You've alluded to some, I think, but can you do a deeper dive into more of the benefits?Dr. Pauler:The benefits of joining the registry include, first, you get to have your genes run on a color platform. You get to go over your results with a genetic counselor. And then you get to know, am I at risk or am I not at risk for certain cancers? So it does a full profile of all cancer genes, which is terrific, not just prostate cancer. And if you do have a mutation, we can help you get your family tested if they're interested.And so the benefits are really you can do it from the comfort of your own home. You can inform your doctor of choice or not. This is private. Nobody needs to know about it but you. And then you get to follow along. So one of the best benefits and why we're encouraging people who already have known mutations to join is they get to be part of webinars and learn the new information, new drug approvals, new clinical trials. And they also continue to get involved in newsletters. And also they continue to get feedback. So it's a living culture where we work together. Every six months people provide feedback, how they're doing, their quality of life, any new drugs they've had. And so we're really working together as a community to help each other and get the best care.Jeremy Patch:That sounds great. Can you give us an example of a patient who has benefited from joining PROMISE? Dr. Pauler:Yes, I had one patient that came to us because he really, really did not want to start hormonal therapy. He had biochemically recurrent prostate cancer. His PSA was rising. And he said, I really don't want to do this. I don't care if I die earlier. I, really, he was depressed. He couldn't get out of the house very well. And he just, he thought his life was gonna end. He thought he was just gonna die of prostate cancer. I tested him and he found out that he was BRCA2. At the time, I had a trial that allowed him to go on Olaparib, a PARP inhibitor, for BRCA2 patients without hormone therapy. He started this drug and he tolerated it very well. Before he knew it, he was out on the golf course playing golf. He was back playing with his kids and he was just so happy that he had his life back.And things were going well and the first few months he was sort of still concerned It wouldn't work But then he saw his PSA go down to nothing, zero, and and he actually stayed on it for three years And so for three years, I I took a gentleman who was in the depths of depression thinking his life would end, back to the golf course, back to playing with his kids and family, and really enjoying without the side effects of hormone therapy. And so he was just really thankful for PROMISE, the registry, for the clinical trial, and he just thinks that this type of research is really important. And so that's one of the many happy stories that we've been able to help with using PROMISE.Jeremy Patch:That's a great example. But we also have another patient with us here today. So we're looking forward to hearing from you, Rudy. So Rudy, can you tell us, just introduce yourself a little for us.Rudy Burwell: Sure, again, name's Rudy Burwell. I'm a business owner here in the Washington, D.C. area, and I was diagnosed in 2019 with advanced prostate cancer and been in the care of Dr. Pauler for the majority of that time. I actually came from another hospital system before I came over to Johns Hopkins as well, but the majority of my time has been with Dr. Pauler.Jeremy Patch:Okay well, it’s good to meet you. It's good to have you here with us. Why did you decide to join the PROMISE registry? Rudy Burwell:Well, first, Dr. Pauler asked me to, and I generally do what she asked. Most of the time. Jeremy Patch:Dr. [unintelligible] always help, right?Rudy Burwell:That's right. But, you know, I was familiar, I had actually had done the testing at the other hospital system that I was in, so I'd already, I knew I had BRCA2, but when Dr. Pauler asked me about this and told me the benefits, you know, the research and all the things that obviously she's already talked about, I thought it was very, it was very important for me to be a part of that registry. And another thing was for me, and I think as, you know, as African American, I know that the rates for prostate cancer is much higher and even Dr. Pauler said I really want to have more African-Americans as part of the study and so we were in sync for that so it was really really important for me I think to be a part of that.Jeremy Patch:Great. What was your experience submitting DNA samples and joining the registry? Can you tell us how difficult or easy it was for you?Rudy Burwell:No, it's super simple. It's a saliva-based test. It took all of like two minutes to do. So it was the ease of entry for that is pretty simple.Jeremy Patch:Okay, good. Did you just mail it in then? How did that work? Rudy Burwell:Yes, that's correct. Just a quick mail-in. So it was very simple.Jeremy Patch:Okay. What did you learn from your genetic test results? Could you share that with us?Rudy Burwell:Sure. And you know, as I said that, you know, I knew I had BRCA2 and then, you know, this was a confirmation obviously of that. So there was, you know, no mystery to that. And even as my radiologist had said to me before, you know, knowing how young I was, how advanced it was, you know, he said, yes, this obviously makes sense that you are BRCA2, you know, have that mutation and so, so again, that for me, knowing that, you know is it's a great way forward of knowing the types of drugs that can be a part of our trials in the future, future research, you know all those things to me seemed important to be a part of this, you know and knowing I had that mutation.Jeremy Patch:Right, and how has this changed your course of treatment? Rudy Burwell:Yeah, Dr. Parker, I tell you, she could probably tell you a little bit more. But I know, I believe the drug that I'm on now that is, was, you know, one of the reasons that, you know, are the result of, you know, knowing that I had that mutation. And it's a drug that I've, it's on Lynparza, and that I've, you know, I've tolerated, you know, fairly well, you know, over the last few years.Jeremy Patch:Okay, that's good to hear. What must you do now that you've provided your DNA sample and learned that you are in the study?Rudy Burwell:Um, yeah, don't know any obligations for me, you know, really going forward, but mostly I think of, you know, again, being a, you know, part of that registry, you know, obviously, I'm fortunate to have Dr. Pauler as my oncologist, and so I will, you know, I feel it gives me comfort to know that, you know, I will, you know, be, you know, firsthand knowing because she's part of this, of anything that's new, if for some reason I don't tolerate the Lynparza later, or if there's newer drugs that may come out, you know, based on that, you know, that I could be the beneficiary of that. So yeah, that's a good thing. Jeremy Patch:Okay, great. So, Dr. Pauler, we'll go back to you.Who is eligible to join the PROMISE Registry?Dr. Pauler:Anyone who is 18 years of age or older with prostate cancer, either by biopsy or their PSA is over 100. and they have, oftentimes they have imaging documentation that it has spread, but they don't have to. So really it's that core biopsy that shows that you have a Gleason scoring in prostate cancer. So anybody in the United States as of right now is eligible with prostate cancer.Jeremy Patch:Okay. And what is the status of the registry? So how many patients are enrolled today? How many more do you need?Dr. Pauler:We have about 3,500 enrolled, and of those, about 350 have mutations. And so we're looking for about 104, sorry, 150 more people with mutations. Jeremy Patch:Okay. Dr. Pauler:We are looking for probably about 1,500 more people to sign up to get the 150 more mutations.Jeremy Patch:Okay, so that's why we're doing this podcast, right? To get the word out, let people know the options. So that's great.Dr. Pauler:One more thing that people don't know is the NCCN guidelines recommend if you sort of have higher Gleason score, intraductal pathology, you're more likely to harbor a mutation. And people don’t, people forget that. People think, oh, it's only family history, but it's not. There's actually other key features, such as your pathology, that make you more likely to carry a mutation, and you should be checked, even if you haven't been checked.Jeremy Patch:Yeah, thank you for that. That's an important note. Rudy, last question to you, and then I will come back to Dr. Pauler again. But Rudy, what would you say to other men considering joining the PROMISE Registry?Rudy Burwell:No, they should absolutely do it. I mean, obviously, it's again, you know, the barrier to entry is easy, I think. And the important thing is, and Dr. Pauler mentioned it very well is the importance of your family members, you know, knowing. So, you know, again, when I first got tested, I had never heard the word BRCA1, 2 or whatever. So it was all new to me and so once I knew that and then knowing that I had, you know, my children have a 50-50 chance of inheriting that mutation, so that was eye-opening to me because again, it's something that I was not familiar with. So, you know, I've had the chance to have those conversations with my children, you know, as well, you know, and so that's something that they'll, you know, have with them going forward in their medical history and you know that they can follow up on so, so to me, it's you know, if it's not for yourself. Obviously, you should do it for for your family.Jeremy Patch:To get more information, right? Why not? Yeah, good. And Dr. Pauler where can patients and caregivers get more information about the PROMISE registry?Dr. Pauler:The best place to go to is the website. So that's prostatecancerpromise.org. They have a list of frequently asked questions, they have videos you can watch, and it just has a nice summary of what this trial's about, the resources, what you benefit from,what your obligations are if you become in the long-term registry,for follow-up, in terms of submitting quality of life reports every six months. The other nice thing is we try not to bother the patients, we try to only give resources back, and we try to just get medical records directly from their physicians. And so it should be really easy for patients, and really just an information source.Jeremy Patch:Well, that's great. Thank you again to both of you, Dr. Pauler and Rudy, for joining us today. Rudy, it was great to hear your experience as a patient. We always love to hear from patients, so thank you. It's so important that we have these conversations so patients can be informed and know what's available to them and get information that can, as you said, Rudy, help your family potentially in this case, learn more about your prostate cancer and if, Dr. Pauler, as you were saying, if you find out you have a genetic mutation, find out if there are new drug options available for you. So it could really truly impact your treatment. So great to get this information. For more information on the PROMISE registry, be sure to visit the website in the description. To listen to more episodes of Prostate Cancer Uncensored or to find additional information and resources from ZERO Prostate Cancer, please visit our website at zerocancer.org.Thank you and have a great day.VOICE OVER:Thank you for listening to Prostate Cancer Uncensored, a podcast produced by ZERO. To download more podcasts, head over to zerocancer.org. Join The PROMISE Registry Interested in participating in this FREE research study to advance prostate cancer outcomes? Patients in any stage of treatment or survivorship are invited to join PROMISE. Register More Multimedia About Prostate Cancer From our video library to our entire lineup of podcast episodes, learn more about prostate cancer by watching and listening. Podcasts Podcasts Prostate Cancer Uncensored is our podcast featuring unfiltered discussions with researchers, caregivers, patients, survivors, medical professionals, and more. Subscribe to ZERO on YouTube Subscribe to ZERO on YouTube Subscribe to ZERO's channel to receive alerts whenever new videos are posted, watch videos on-demand, and view playlists on topics like sexual health, health equity, and more. Videos & Webinars Videos & Webinars Register for upcoming webinars, view past presentations, and search through our full library of webinars on-demand. About Prostate Cancer Genetic Testing Living with Prostate Cancer Podcasts Research Contributors Jeremy Patch, Senior Director, Patient Programs & Education Midwesterner and lifelong learner with a sweet tooth. Always on the hunt for my new favorite TV show. Dedicated to improving the lives of cancer patients. Learn more about Jeremy Dr. Channing Paller Dr. Paller is associate professor of Oncology and Urology at Johns Hopkins University, Sidney Kimmel Comprehensive Cancer Center and associate director for Oncology of the Johns Hopkins Clinical Research Network. She is a clinician scientist focused on translating basic scientific findings into treatments that will improve clinical outcomes and reduce toxicities for men with prostate cancer. Dr. Paller is a lead investigator of the PROMISE study and, as an expert in clinical trial design, she leads multiple clinical trials of innovative new treatments and treatment combinations employing germline and somatic biomarkers. She earned her M.D. at Harvard Medical School and completed her medical residency and fellowship in Medical Oncology at Johns Hopkins. More for you
In this episode, we explore the groundbreaking PROMISE Registry, a research study aimed at understanding how genetic differences can impact prostate cancer patient outcomes. Our guests, Dr. Channing Paller and Rudy Burwell, share valuable insights on the importance of this collaborative effort between doctors, researchers, and patients in the fight against prostate cancer. The PROMISE Registry is open to all prostate cancer patients, regardless of their stage of treatment or survivorship, and by joining this study, patients can contribute to the development of precision medicine approaches tailored to individual genetic profiles.We discuss the crucial role of genetics in understanding prostate cancer and how the PROMISE Registry is building a comprehensive genetic database through a grassroots network of patients. By analyzing genetic information from partners nationwide, PROMISE aims to lay the foundation for future prostate cancer knowledge and treatment advancements. Join us as we explore the potential of the PROMISE Registry to revolutionize prostate cancer care and learn how you can be a part of this groundbreaking initiative.Listen
Transcript Expand All Transcript Jeremy Patch:Hello and welcome to Prostate Cancer Uncensored, a podcast by ZERO Prostate Cancer. I'm Jeremy Patch, ZERO's Director of Patient Programs and Education. I'm excited to host this special podcast episode about PROMISE, a registry of prostate cancer patients participating in a research study to learn how genetic differences affect patient outcomes. I'm joined today by Dr. Channing Pauler. Dr.Pauler is an associate professor of oncology and urology at Johns Hopkins University and Director of Prostate Cancer Clinical Research at the Sidney Kimmel Comprehensive Cancer Center.She is also the Associate Director for Oncology of the Johns Hopkins Clinical Research Network and is focused on caring for patients with genitourinary cancer. Dr. Paller is the co-lead investigator of the PROMISE study screening 5,000 men for genetic mutations and following 500 of them to help match them to targeted therapies. We're also joined by Rudy Burwell, a patient and PROMISE study participant. Thank you both for joining us for this important discussion on genetic testing and options for patients. Dr. Pauler, we'll start with you.Can you tell us a little bit about your background in oncology?Dr. Pauler:Sure, thank you so much for having us today.This is really exciting that we have this opportunity to share about the PROMISE registry with friends and family. So I graduated from Harvard Medical School back in 2005, and even in medical school and all throughout my training, I knew the importance of genes.It has been becoming more and more important. And so I realized that prostate cancer needed to catch up. It needed to catch up with lung cancer and breast cancer and all the other cancers out there that were finding genetic mutations in their patients and had targets for them.So for example, in breast cancer, we always knew about BRCA. And so I was really excited that the PROMISE registry allowed prostate cancer patients to learn about their genes. So it's a registry that allows patients to participate in research and collaborate with researchers and physicians to learn about their genetic differences and see how that affects outcomes. We wanna learn how different drugs affect different genes and also learn about how those genes may affect families, right, because these are genetic mutations that may be passed down in your family to siblings and children. And so I think this is really a wonderful opportunity to both help the individual prostate cancer patients and their families.Jeremy Patch:That sounds great, thanks Dr. Pauler. So what are some key and most promising areas in prostate cancer research today?Dr. Pauler:One of my favorite areas is looking at precision oncology. And when I first was going into medicine, chemotherapy was the main treatment, which was a toxic chemical that killed all cells that were dividing in the body. And so precision oncology is the concept where we're tailoring medicine to patients individually depending on their genes or other targets on their cancer. It looks at genes, environment, lifestyle, and it's not the sort of one-size-fits-all approach that's been used previously to treat prostate cancer. And so now we're really looking at people as individuals and targeting them, their cancer, to better treat them and limit the toxicities, right? So I have patients that really like this concept that, wait, I don't have to do chemo yet. There's another option. That's really exciting every time I get to share that possibility.Jeremy Patch:That's great. So truly personalized medicine, what we're talking about, really, which is great. So you gave us a little intro into the PROMISE Registry already, which you and Dr. Heather Chang of the University of Washington launched in 2021. Can you tell us a little bit more about what it is and why it is so important?Dr. Pauler:Sure. So, PROMISE Registry is going to examine first what a patient's susceptibility to different genes are. So, maybe they have a family history, maybe their mother died of breast cancer. We're now learning that pancreas cancer can be associated with certain genes with prostate cancer. Or colon cancer has certain genes associated with prostate cancer. So we're going to learn about the influence of the genes of your family onto passing that down and the development of prostate cancer in families. We're also gonna learn about the effectiveness of different treatments for prostate cancer, right? So when Olaparib, one of the drugs approved for BRCA patients, both in breast and prostate, was first approved, it was approved for 15 genes. But one of the things that came to light was that one of the genes, ATM, those patients didn't respond as well as we had hoped originally. And so we're really looking at specific genes and individually. Otherwise it’s too hard. If we don’t work together and get many patients with these genetic mutations and follow them over time we’re just not gonna get the numbers we need to really understand the impact of these different treatments have on different genes. We also wanna improve guidance.So one of my patients said, Dr. Pauler, we know you love research and giving us the next drug before we need it, but a lot of patients don't even know the standard of care. Many patients don't even know that there's a drug available for them or that they even have a mutation to get that drug. And so we also want to improve guidance for just routine standard of care for patients and make sure they're getting the treatment that they deserve. And we also want to explore areas, right? We want to have some hypothesis generating data to learn more about what‘s out there. So we're learning there are several patients with MUTYH mutations in prostate cancer.What does that predispose you to? So there's lots of different opportunities here for generating new research, for giving patients better care, and educating their families about risks that they may have with different mutations.Jeremy Patch:What do you hope to achieve by establishing the PROMISE registry?Dr. Pauler:I hope that every patient with prostate cancer in the country knows their genetic background. I hope that they can better inform their care by educating themselves and their physician. And I also hope that they can educate their families if they're at risk for genetic mutations so that they can advise their children that maybe they too should get tested and maybe they too could do different things to help prevent developing cancer in their lifetime.Jeremy Patch:That's great. What are the benefits of joining the Promise Registry? You've alluded to some, I think, but can you do a deeper dive into more of the benefits?Dr. Pauler:The benefits of joining the registry include, first, you get to have your genes run on a color platform. You get to go over your results with a genetic counselor. And then you get to know, am I at risk or am I not at risk for certain cancers? So it does a full profile of all cancer genes, which is terrific, not just prostate cancer. And if you do have a mutation, we can help you get your family tested if they're interested.And so the benefits are really you can do it from the comfort of your own home. You can inform your doctor of choice or not. This is private. Nobody needs to know about it but you. And then you get to follow along. So one of the best benefits and why we're encouraging people who already have known mutations to join is they get to be part of webinars and learn the new information, new drug approvals, new clinical trials. And they also continue to get involved in newsletters. And also they continue to get feedback. So it's a living culture where we work together. Every six months people provide feedback, how they're doing, their quality of life, any new drugs they've had. And so we're really working together as a community to help each other and get the best care.Jeremy Patch:That sounds great. Can you give us an example of a patient who has benefited from joining PROMISE? Dr. Pauler:Yes, I had one patient that came to us because he really, really did not want to start hormonal therapy. He had biochemically recurrent prostate cancer. His PSA was rising. And he said, I really don't want to do this. I don't care if I die earlier. I, really, he was depressed. He couldn't get out of the house very well. And he just, he thought his life was gonna end. He thought he was just gonna die of prostate cancer. I tested him and he found out that he was BRCA2. At the time, I had a trial that allowed him to go on Olaparib, a PARP inhibitor, for BRCA2 patients without hormone therapy. He started this drug and he tolerated it very well. Before he knew it, he was out on the golf course playing golf. He was back playing with his kids and he was just so happy that he had his life back.And things were going well and the first few months he was sort of still concerned It wouldn't work But then he saw his PSA go down to nothing, zero, and and he actually stayed on it for three years And so for three years, I I took a gentleman who was in the depths of depression thinking his life would end, back to the golf course, back to playing with his kids and family, and really enjoying without the side effects of hormone therapy. And so he was just really thankful for PROMISE, the registry, for the clinical trial, and he just thinks that this type of research is really important. And so that's one of the many happy stories that we've been able to help with using PROMISE.Jeremy Patch:That's a great example. But we also have another patient with us here today. So we're looking forward to hearing from you, Rudy. So Rudy, can you tell us, just introduce yourself a little for us.Rudy Burwell: Sure, again, name's Rudy Burwell. I'm a business owner here in the Washington, D.C. area, and I was diagnosed in 2019 with advanced prostate cancer and been in the care of Dr. Pauler for the majority of that time. I actually came from another hospital system before I came over to Johns Hopkins as well, but the majority of my time has been with Dr. Pauler.Jeremy Patch:Okay well, it’s good to meet you. It's good to have you here with us. Why did you decide to join the PROMISE registry? Rudy Burwell:Well, first, Dr. Pauler asked me to, and I generally do what she asked. Most of the time. Jeremy Patch:Dr. [unintelligible] always help, right?Rudy Burwell:That's right. But, you know, I was familiar, I had actually had done the testing at the other hospital system that I was in, so I'd already, I knew I had BRCA2, but when Dr. Pauler asked me about this and told me the benefits, you know, the research and all the things that obviously she's already talked about, I thought it was very, it was very important for me to be a part of that registry. And another thing was for me, and I think as, you know, as African American, I know that the rates for prostate cancer is much higher and even Dr. Pauler said I really want to have more African-Americans as part of the study and so we were in sync for that so it was really really important for me I think to be a part of that.Jeremy Patch:Great. What was your experience submitting DNA samples and joining the registry? Can you tell us how difficult or easy it was for you?Rudy Burwell:No, it's super simple. It's a saliva-based test. It took all of like two minutes to do. So it was the ease of entry for that is pretty simple.Jeremy Patch:Okay, good. Did you just mail it in then? How did that work? Rudy Burwell:Yes, that's correct. Just a quick mail-in. So it was very simple.Jeremy Patch:Okay. What did you learn from your genetic test results? Could you share that with us?Rudy Burwell:Sure. And you know, as I said that, you know, I knew I had BRCA2 and then, you know, this was a confirmation obviously of that. So there was, you know, no mystery to that. And even as my radiologist had said to me before, you know, knowing how young I was, how advanced it was, you know, he said, yes, this obviously makes sense that you are BRCA2, you know, have that mutation and so, so again, that for me, knowing that, you know is it's a great way forward of knowing the types of drugs that can be a part of our trials in the future, future research, you know all those things to me seemed important to be a part of this, you know and knowing I had that mutation.Jeremy Patch:Right, and how has this changed your course of treatment? Rudy Burwell:Yeah, Dr. Parker, I tell you, she could probably tell you a little bit more. But I know, I believe the drug that I'm on now that is, was, you know, one of the reasons that, you know, are the result of, you know, knowing that I had that mutation. And it's a drug that I've, it's on Lynparza, and that I've, you know, I've tolerated, you know, fairly well, you know, over the last few years.Jeremy Patch:Okay, that's good to hear. What must you do now that you've provided your DNA sample and learned that you are in the study?Rudy Burwell:Um, yeah, don't know any obligations for me, you know, really going forward, but mostly I think of, you know, again, being a, you know, part of that registry, you know, obviously, I'm fortunate to have Dr. Pauler as my oncologist, and so I will, you know, I feel it gives me comfort to know that, you know, I will, you know, be, you know, firsthand knowing because she's part of this, of anything that's new, if for some reason I don't tolerate the Lynparza later, or if there's newer drugs that may come out, you know, based on that, you know, that I could be the beneficiary of that. So yeah, that's a good thing. Jeremy Patch:Okay, great. So, Dr. Pauler, we'll go back to you.Who is eligible to join the PROMISE Registry?Dr. Pauler:Anyone who is 18 years of age or older with prostate cancer, either by biopsy or their PSA is over 100. and they have, oftentimes they have imaging documentation that it has spread, but they don't have to. So really it's that core biopsy that shows that you have a Gleason scoring in prostate cancer. So anybody in the United States as of right now is eligible with prostate cancer.Jeremy Patch:Okay. And what is the status of the registry? So how many patients are enrolled today? How many more do you need?Dr. Pauler:We have about 3,500 enrolled, and of those, about 350 have mutations. And so we're looking for about 104, sorry, 150 more people with mutations. Jeremy Patch:Okay. Dr. Pauler:We are looking for probably about 1,500 more people to sign up to get the 150 more mutations.Jeremy Patch:Okay, so that's why we're doing this podcast, right? To get the word out, let people know the options. So that's great.Dr. Pauler:One more thing that people don't know is the NCCN guidelines recommend if you sort of have higher Gleason score, intraductal pathology, you're more likely to harbor a mutation. And people don’t, people forget that. People think, oh, it's only family history, but it's not. There's actually other key features, such as your pathology, that make you more likely to carry a mutation, and you should be checked, even if you haven't been checked.Jeremy Patch:Yeah, thank you for that. That's an important note. Rudy, last question to you, and then I will come back to Dr. Pauler again. But Rudy, what would you say to other men considering joining the PROMISE Registry?Rudy Burwell:No, they should absolutely do it. I mean, obviously, it's again, you know, the barrier to entry is easy, I think. And the important thing is, and Dr. Pauler mentioned it very well is the importance of your family members, you know, knowing. So, you know, again, when I first got tested, I had never heard the word BRCA1, 2 or whatever. So it was all new to me and so once I knew that and then knowing that I had, you know, my children have a 50-50 chance of inheriting that mutation, so that was eye-opening to me because again, it's something that I was not familiar with. So, you know, I've had the chance to have those conversations with my children, you know, as well, you know, and so that's something that they'll, you know, have with them going forward in their medical history and you know that they can follow up on so, so to me, it's you know, if it's not for yourself. Obviously, you should do it for for your family.Jeremy Patch:To get more information, right? Why not? Yeah, good. And Dr. Pauler where can patients and caregivers get more information about the PROMISE registry?Dr. Pauler:The best place to go to is the website. So that's prostatecancerpromise.org. They have a list of frequently asked questions, they have videos you can watch, and it just has a nice summary of what this trial's about, the resources, what you benefit from,what your obligations are if you become in the long-term registry,for follow-up, in terms of submitting quality of life reports every six months. The other nice thing is we try not to bother the patients, we try to only give resources back, and we try to just get medical records directly from their physicians. And so it should be really easy for patients, and really just an information source.Jeremy Patch:Well, that's great. Thank you again to both of you, Dr. Pauler and Rudy, for joining us today. Rudy, it was great to hear your experience as a patient. We always love to hear from patients, so thank you. It's so important that we have these conversations so patients can be informed and know what's available to them and get information that can, as you said, Rudy, help your family potentially in this case, learn more about your prostate cancer and if, Dr. Pauler, as you were saying, if you find out you have a genetic mutation, find out if there are new drug options available for you. So it could really truly impact your treatment. So great to get this information. For more information on the PROMISE registry, be sure to visit the website in the description. To listen to more episodes of Prostate Cancer Uncensored or to find additional information and resources from ZERO Prostate Cancer, please visit our website at zerocancer.org.Thank you and have a great day.VOICE OVER:Thank you for listening to Prostate Cancer Uncensored, a podcast produced by ZERO. To download more podcasts, head over to zerocancer.org.
Join The PROMISE Registry Interested in participating in this FREE research study to advance prostate cancer outcomes? Patients in any stage of treatment or survivorship are invited to join PROMISE. Register
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