Transcript of The Metastatic Prostate Cancer Project Podcast


Host:  Joel T Nowak

Guest:  Dr. Eli Van Allen from the Broad Institute


Joel Nowak: Welcome to this Cancer ABCs podcast. I am Joel T. Nowak. Today, Dr. Eli Van Allen of The Broad Institute, located in Cambridge, Massachusetts is joining us. Broad conducts many different cutting edge research projects including the one we are going to talk about in this podcast; the Metastatic Prostate Cancer Project. Welcome, Dr. Van Allen and thank you so much for joining and for taking the time to produce this podcast. 

Before we jump into the specifics of the Metastatic Prostate Cancer Project, I would like you to take time some time and tell us a little bit about the Broad Institute. 


Eli Van Allen: First, Joel, thanks again for having me on the podcast, it's really exciting to be here with you to talk about this project. I wear multiple hats in my day job, I'm a medical oncologist at Dana-Farber Cancer Institute and I see mostly prostate cancer patients in my clinic. I run a research laboratory that's focused on the genetics of prostate cancer, both in the local prostate cancer and metastatic prostate cancer. And through that, I actually spend a lot of my time working at Dana-Farber, but also at this place called the Broad Institute, it's where much of the human-genome project happen. It's where much of the Cancer Genome Atlas happen, in terms of laying the genetic maps of pretty much all cancers that we know of. Really, a lot about science happen at the Broad, and obviously, with many other partners in other institutions leading the way for many things, created these unique environments of scientists from many different expertise, all coming together under one roof.


Joel: Actually, it's interesting because we did another podcast with Dr. Painter about another project, a very similar project that's being sponsored by the Broad, the Angiosarcoma Project. However, the specific project that we're going to concentrate on today is the Broad's Metastatic Prostate Cancer Project. Could you take a few moments and could you tell us about the project? 


Eli: Absolutely. Probably the best way to frame the project is to provide sort of what we know about metastatic prostate cancer at the genetic level and why we're doing this Metastatic prostate Cancer Project. Through multiple collaborations with many institutions, many academic centers, I've actually been privileged to spend much of this past decade helping to define the genetic map of metastatic prostate cancer. And we've studied now hundreds of men with metastatic prostate cancer and done large-scaled genomic profiling of their tumors, of the DNA that they were born with and developed all sorts of ways to think about that data and find what kinds of genetic events may inform new drug targets. Certain metastatic prostate cancer patients have exceptional responses or none responses to the drugs that we have. We don't really know which targets or which drugs we should be developing for which patients down the road once they become resistant to the drugs that we have. We have huge gaps in terms of understanding what genetics are of different sub-types of metastatic prostate cancer. This could be, for instance, sort of a known VARion called [inaudible] under prostate cancer. There's the prostate cancer that's unique to African-American men who have very different kinds of disease that we don't understand at all. 

And so, basically there's millions of questions that we don't have answer to. The traditional model that I described earlier has been very effective at starting to ask these questions. But the goal of the Metastatic Prostate Cancer Project is to do research in an entirely different way. Rather than count on having patients walk into one of maybe five or six academic medical centers across the country and happen to have them be approached by somebody who know something about a science project, we thought we put the whole thing on its head. We'd actually make a project that was created by patient, or patients can say, "Count me in. I want to actually participate but I also don't want to have to travel 1,000 miles to an Academic Medical Center to do it. I want the project to come me. But I still want to be able to contribute my tumor, my inherited DNA and my medical information towards helping all of us create a new genetic map of metastatic prostate cancer that we can actually use to tackle all those open questions that I listed before." For anyone who says, "Count me in," who goes to, which is the URL, and participates in the project, one of the [inaudible] to that opportunity to really make that kind of difference.


Joel: You've given a lot of really interesting and good reasons and things that we hope to accomplish in the project. What would you think could be the most important thing that we could learn or two important things that could come out of the project?


Eli: So, I think that perhaps the two most important things are one, new drug targets for this patient populations. We don't know, fundamentally, which things need to be drugged and how and in what way. By developing this kind of a genomic resource of metastatic prostate cancer patients with their genomics and their clinical data, we can actually tackle that question immediately. 

The second thing is that we don't know a lot about metastatic prostate cancer outside of Caucasian men who happened to go to one of, let's say, five or six Academic Medical Centers. 

This is, frankly, in the genetics world and in the scientific world that I live in much of my week, probably one of the most, frankly, embarrassing things about our field is that we really have complete lack of understanding of how this disease works in non-Caucasian patient population. Our hope is that this project can help to break down that barrier and help us make these discoveries that are central to disease that isn't sort of a typically studied-kind of prostate cancer.


Joel: Would it be reasonable for me to assume that you are interested in more than just men who don't fit that normal, typical Caucasian-European descendant? You're still interested in getting those men to participate? 


Eli: Oh, absolutely, yes. Because the first question, they sort of  how does this disease work in general. Then, which patients respond or do not respond to various drugs is an open question that's relevant to everyone. There are segments of the population that we have almost zero information on. So, doing it the way we usually do research isn't working, so we need to try a different way. 


Joel: You're interested in men who are both of that typical Caucasian-European descent and also men of minority groups, particularly African-American, I imagine other minority groups also. Because you happened to be Caucasian doesn't mean that there's not important place for you in the project. 


Eli: Oh, correct. Yes, absolutely. Just to be clear on that. It isn't that we don't want that, we have wide gaps in all aspects of this disease in our understanding.


Joel: Thus, count me in. 


Eli: Exactly. 


Joel: Yeah. I know that from a patient perspective, there's sometimes a level of frustration that patients feel because they do participate in trials or in research projects because this is not a trial, it's a research project, if I understand correctly. 


Eli: Correct.


Joel: And there's really no feedback at all to patients. They sometimes go out of their way and to an extreme and sometimes just minorly but they're still going out of the way. They're giving time sometimes, in the case of this project, they're giving blood and spit and so forth, which we will talk about a little later in the podcast, but they don't getting anything back for it. I know that that's something that the project has dealt with, so could you share a little bit as to how that might be or it's going to be dealt with to maybe make this a little better for patients who participate?


Eli: What you're describing is a very common and, frankly, a very understandable frustration among patients who participate in really any clinical study; whether it's purely research project to clinical trial. And I think, by virtue of this project being a patient-driven one, from day one we've been sort of building this with patients hand in hand, and that's been among the most consistent feedback is, "What are we giving back to the patients?"

It's a challenge here because this is a research project. For numerous reasons, we don't have the ability to actually generate clinical genetic data to give back to a patient because we are not the patient's doctor. We want to be able to provide direct feedback but we can't necessarily provide patient's individual genetic result. But what we can do, I think this is just as critical, is that we're actually able to engage with patients with respect to providing aggregate data and new findings as they arrive. 

For example, let's say in the first 100 patients who participate in this project, we generated the genetic information and we're making an interesting discovery. We can actually summarize and provide that discovery and report that back to the participants in the study in real time, and they can actually then bring that directly to their doctor to ask, "Is this relevant for me? Should I get clinical testing for whatever we find?"

We are intentionally providing feedback to patients as we learn things; whether it's from the genetic information or, frankly, whether from other information, patient report information, or even just simply feedback on the way the project even looks in fields. We've been open now for a few months and have actually have multiple very fruitful and substantive conversations with individual patients who've reached out to us after engaging with the site who have thoughts and questions and feedback. And I think that's making it clear that we're working hand in hand with patients here. It's something that we could just say and not really mean, but we really mean it here because it really is central to this whole thing. 


Joel: For some patients there may be some information that encourage them to work with their doctors to perhaps make the information actionable. With that be a reasonable statement? 


Eli: Exactly. That's exactly it.


Joel: That's pretty exciting. I guess now the question is, someone says, "Count me in." What happens? How does the patient get counted in?


Eli: Somebody hears this podcast and goes to, clicks 'Count me in', they'll be brought to a couple of things. One, is a very simple questionnaire that ask them very basic questions about their disease, roughly when they were diagnosed, who their primary providers may have been, what kind of therapies they may have reported. Then the most important question we ask is the open which is, 'Is there anything you'd want us to know about your disease?' which is already provided some very thoughtful and provocative comments from individuals who have taken the time to provide some thoughtful feedback. And then from there, they'll go through very simple online consent process that describes the project in detail, they provide an electronic consent. After they provide consents, we will send off a saliva kit that will get mailed to your house, that in the kit, there's instructions. And then you put it back in the mail and send it right back to us. 

Once we go through some of the basic quality control information, get some information about specimens, maybe. Some patients will also get what's called a liquid biopsy kit, which will actually be an empty vial they can bring to their next blood draw, like for a PSA test or something like that. They can actually send us the sample that we can actually use to track down tumor DNA that might be in your blood. We use all these information, all of the specimens for genetic profiling as part of this project. 


Joel: If I'm one of those people selected to do a liquid blood biopsy, as you referred to, to clarify, when you say biopsy, it's again if I understand it correctly, it's just a simple blood draw or I mean you're not doing anything else?


Eli: Yes. So we're ... it's almost like maybe a sort of [inaudible] towards on our part. We imagine it like a traditional way to study a tumor is that one does a real biopsy with a needle. Here, we are trying to detect tumor within the blood, so we sort of refer to as a biopsy, but it's exactly just a simple blood draw.


Joel: If a man has this liquid biopsy, they have this vial full of blood. How do they hand it to you?


Eli: It's actually there's instructions in the kit that are provided to the patient. And then simply the person drawing the blood just puts it a little envelope and they put it back in the box, hand it to the patients, they put it in the mail and it comes right back to us.


Joel: And it's all pre-paid I know, correct?


Eli: Correct. Yes.


[cross talk]


Joel: A man doesn't have to go to the post office and pay $15 or $20 to have it mailed. 


Eli: No. 


Joel: I do know that one of the important parts of this project is that there's patient engagement and patient involvement. What are those words actually mean and how has this engagement translated to the development of the project? 


Eli: It means that every single aspect of this project has been designed hand in hand with patients from day one and onward throughout the entirety of the effort, so the way this manifest is in the details. Every aspect of the website was actually designed hand in hand with the patients and with critical feedback. So for example, if you go to and you see on the homepage there's an image, a silhouettes of a bunch of individuals standing together, sort of almost like a band of brothers, that general imagery really resonated with patients and they really like that. The first version of that image was all six-foot-two very built men with the exact same haircut. We've [inaudible] this on our group by 10, 20 times, we didn't think about it. We sort of show it's [inaudible] and the unanimous feedback was that, "None of this looks like me," and "This is not very inclusive," and "Where are the short people?" "Where are the wives?" "Where are the daughters?" "Where are the sons?" Because it's actually something you're doing, not just perhaps for yourself, but also for your loved ones and the future. We really actually meant that. 

So that's actually kind of a small point but really speaks to, I think, how we really mean that every detail here is really built by a patient. Again, as we get information, we're going to have regular updates with our patient participants, sort of sharing what we've learned and aggregate. We're making all of the data de-identified, of course, available to any researcher who wants to use it, which is something that was driven in large part because patients demanded it understandably. So, when we are ... think about this as a patient-driven project, it really means that the patients are driving the project. And then so much as the way the project grows is by having patients participate and tell other patients about their experiences. This isn't going to be me with a megaphone, standing on a mountain somewhere screaming at everyone to [inaudible] to do this. That's just not the way it's going to work. 


Joel: So you've kind of touched on it but kind of helped to sum it up. Why is is important for men with metastatic prostate cancer to participate in this project?


Eli: The only we're going to learn how to come up with new therapies for this disease and turn this from one that is uniformly lethal to one that can be controlled is by creating, instead of genomic data and clinical data from thousands and thousands of men with metastatic prostate cancer and learning from that experience, without that it's unclear how we're going to solve this puzzle.

The ultimate goal here is to come up with new ways of taking care of this disease, and new ways of changing the conversation about metastatic prostate cancer. The only way that happens is strength with lots of men saying, "Count me in," and actually participating together to do it. It's really important for men to participate in this project because the only way the community of patients and researchers and doctors is going to turn this from uniformly lethal disease to one that can be controlled through the right kinds of treatment, is by completely understanding the way the tumor genetics interact with all the treatments that we have in every clinical setting you can imagine across all the patients that are affected by this disease, and using that information to drive new discovery.

The only way that happens is this enough men who say, "Count me in. I want to participate in research." So in some sense, it's a numbers game but it's enough men being willing to participate in this research, that's actually the critical piece here. 


Joel: We said earlier the way someone participates or to be counted in is by going to the web page of, correct?


Eli: Yeah, or Google Metastatic Prostate Cancer Project, it should get you there. We designed the site hand in hand with patients and our hope is that's easy to navigate, but again, this is a patient-driven project. We really mean it when we say, "Don't be shy", is our email address. We are actively soliciting feedback from patients, we've got some amazing feedback so far. And that's actually going to help us iterate, the way the website works.


Joel: If someone is not sure that they want to be counted in but they had some questions or wanted clarifications, how would they go about doing that without having to feel that they've committed themselves before they're ready?


Eli: There's no pressure at all. There's an email address, If you go to the website and you're not sure you want to participate, you're not sure you're eligible, please don't be shy, reach out us, is our email address. Our phone number is 651-293-5029. We are at a 100% response rate, so far on the emails and phone calls. We are more than happy to talk with anyone and everyone. We've had some amazing conversations that have happened as a result of some phone calls we've had already. We recognize that even in trying to figure out, "Do I have metastatic prostate cancer? What does actually mean, it's a little bit complicated." So don't feel like you need to have all the answers, feel free to email us or contact us in any way and we'll do our best to answer it.


Joel: I'm actually going to ask you another question pertaining to your comment that, "Do I actually have metastatic prostate cancer?" I know that you're aware that there was a new drug approved apalutamide called 'Erleada' is the trade name. If you read the FDA label for this drug, it's for men who are castrate-resistant but they have no sign of metastatic disease based on their scan. Are those individuals ... will they qualify? So if you have what's called the PSA or bio-chemical re-occurrence, would you be interested in them? Do they qualify to participate?


Eli: The sure answer is yes. The way we think about metastatic prostate cancer is simply as prostate cancer that has left a gland. So, in that context, somebody... even if we can't find the disease, if the PSA is detectable and there's clearly prostate cancer somewhere, from our perspective that counts as somebody who is eligible for the project.


Joel: That would be someone who has had some sort of primary treatment and then their PSA returns, correct?


Eli: Exactly. 


Joel: So a man who's not had primary treatment, not had radiation or surgery, is not going to qualify to participate in the project at this time? 


Eli: In that specific setting, I think that might be a little bit... that might be an edge case for we would actually suggest like either maybe other circumstances that we can consider having them enroll. But you specifically means somebody who has their prostate's intact, there's no prostate cancer in the gland with the detectable PSA?


Joel: Right. And they say they'd had a biopsy that's confirmed that they have prostate cancer, negative scans, and not yet active surveillance or still trying to decide whether or not to do any treatment. But they have not done any treatments.


Eli: Correct. In that case, yes. Those patients are not currently eligible for the project. Obviously, we have plenty of critical questions to ask in those patient populations too and we'd love to. We just think, at the moment, taking on metastatic prostate cancer is going to be challenging enough as it is. You hope to actually tackle those kinds of questions in that patient-population down the road as well.


Joel: I also am aware that you are restricted from what countries I live in because of IRB approval. So what are the restrictions on that?


Eli: Right now, we have approval for getting samples from the United States and Canada. The challenge of extending beyond that is more often the case of the Regulatory Environment of the country of origin. So, each country has its own rules and regulations about bio-specimens and where they can go. We're actively sorting through those complexities right now in terms of thinking about how to add other countries because we're obviously very keen to do that as well for whenever we're able to but we're not quite there yet. 


Joel: As a researcher and clinician treating people with metastatic prostate cancer at Dana-Farber, you have any thoughts or recommendations that you could share with someone who has faced with this diagnosis? 


Eli: The first thing I'd say is that this is a journey and no two journeys are the same. No two prostate cancers are the same. It can feel like a roller coaster in times, but finding the right care team of doctors, nurses, if it comes to an infusion nurse, support staff, family and friends is really the most important thing. Sometimes, all those pieces don't come together immediately. And I think you know we're all aware of that reality, and I think not being shy about making sure you seek out people you're comfortable with, especially in your medical team. Beyond that, recognizing that the field is moving so quickly, it's just important to know that the discoveries are happening quickly. And I think the opportunity to participate in research oftentimes can feel like an abstract thing. You and I were discussing earlier, there are several benefit and be aware [inaudible] even hear about it again. I think everything we've done and learned about metastatic prostate cancer in the last five years as suggested, the answer is yes. There is huge value and actually going beyond the clinical experience and participating in research. So, it's our project which should be fantastic or whatever other project that come your way that you're interested in, or clinical trials that may come your way, because the opportunity for benefit to one's self is awfully avast. The opportunity to benefit those that come after you is also equally profound and important. And I think that's really a gift that you can give while you're facing this journey with your network of support. 


Joel: Not only is it a gift that you can give to others but again, it's also something that may get back to you as you find some of these discoveries and share them in a de-identified manner. 


Eli: This sort of historical pace of research was such that it would take years and, frankly, decades for oftentimes for these discoveries to translate into clinical impact. Just to give an example, we led the discovery of the first genetic maps of metastatic prostate cancer that were reported in 2015. And in that study of just 150 men, so we have just barely scratching the surface, but in that study we found about 20% of these men had mutations in a  certain set of genes that we knew could be targeted with the specific drug. Six months later, we have reports of the early phase clinical trial of that drug in that genetically defined population. We now have flurry of clinical trials and opportunities that directly linked that genetic event to specific therapeutics in this disease and would typically have taken like decades of time to actually turn from a discovery into a sort of clinic reaction of event, it could happen very quickly. It's really worth emphasizing how fast it's happening ... how that cycle of discovery and translation continuing to shrink. The opportunities to [inaudible] benefit to one self and to one's peers is vast. 


Joel: That's actually kind of interesting because there's an example where those 150 men who participated, those who had that mutation, if they then what do having themselves sequenced, may well have found that they had a treatment option available that was going to be effective, where otherwise it may have been kind of a shotgun attempt to figure out what the next best treatment might be. 

You also mentioned what's important for a man with metastatic prostate cancer is to putting together the proper medical team. I'm going to ask you another question. You are an extraordinary oncologist, I know of your work, I know a number of men who see you at Dana-Farber, are you still taking new patients? And if you are, how do someone connect up with you in order to have a consult? 


Eli: I do appreciate the kind words. I have a very small clinic at this point just because of I spent most of my time in the lab doing research. There are sort of a spectrum of fantastic and amazing clinicians at Dana-Farber and obviously, at the partner institutions and really many other equally fantastic academic medical centers. At Dana-Farber, there is a new patient ordinary system that one could find online and then they can help setup appointments.


Joel: As we're coming to the close, I mean I just would like to ask that you please remind everybody how someone [inaudible] learning more about the project, then more important how do someone participate and say, "Count me in."


Eli: Absolutely. So once again, it's the metastatic prostate cancer project, This is a patient-driven project, aim to accelerate prostate cancer discovery and research, with the hopes of helping men fight the metastatic prostate cancer. It's as simple as clicking 'count me in', answering a few simple questions, spitting into a tube, when that comes in the mail and then bringing your blood vial to your next doctor's appointment so they can send off one of those samples, and we kind of take it from there. With the men and their families who are participating, we are sort of actively sharing data with the entire community to sort of breakdown traditional silos of research to accelerate what we're trying to do here. We really mean when we say this is a patient-driven project. This is a project that lives and dies with patients participating and then talking to other patients about their experiences with the hope that we actually can create a community of men who are able and willing to talk about a disease that guys are usually not super comfortable talking about. That's actually maybe the last part of this that I didn't get a chance to touch on earlier, which is the science itself would be amazing but what we're starting to see in a disease that really has very little outward-facing, social media chatter, or other kinds of way that people openly talk about this disease in forms the way you see other kinds of cancers being talked about, we're starting to see some people talk about it. And I think that may seem like a relatively small point for a project that's around doing genetics and all this kinds of stuff, but as a Doc I'd say, that's among the most amazing things we can accomplish, which is simply making men feel like they're in a comfortable place to actually talk about their experiences, fighting this disease, open up to their friends and family into the community and really just change the phase of this disease entirely. That's really what we're all trying to do. So our hope is that we can do it together, partnering patients and researchers towards that common goal.


Joel: Thank you so much, Dr. Van Allen, for all that you have done to better the lives of so many of us who have prostate cancer and also, thank you so much for sharing some of your very valuable time with us to do this podcast. 


I'm Joel Nowak from Cancer ABCs. Dr. Eli Van Allen from the Broad Institute and Dana-Farber has joined me today to do this podcast. Remember, if you have been touched by cancer, your goal should be not to just survive but it should be to thrive. Join us at and realize that dream.