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Treatments and Testing for Metastatic Prostate Cancer

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Published on March 9, 2020

Key Takeaways

Joel Nowak, who is living with metastatic prostate cancer, shares his views on testing, clinical trials and finding the right treatment. Joel gives a patient perspective on the latest genetic research and some current projects and clinical trials working to collect data for a better understanding of prostate cancer. Watch as he offers hope and advice for others navigating their journey.

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Transcript | Treatments and Testing for Metastatic Prostate Cancer

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Andrew Schorr:

All right. Okay. Hello, Andrew Schorr with my friend Joel Nowak. We've been talking for years about prostate cancer and typically when it's more advanced and you know it, you've been living with it.

Joel Nowak:

Yes.

Andrew Schorr:

You talk to people about it. You have a support group in New York City, you connect with other men all the time. Where are we now, Joel, with the options for men with advanced disease and what testing and understanding of their specific situation is important, and what do you do about it?

Joel Nowak:

That's, that's like a 12-question, question.

Andrew Schorr:

It is, I know. I want you to explain.

Joel Nowak:

So let me try to break it up a little bit if I might, and hopefully I'll get to everything and if I miss anything, you know, Andrew, let me know. So first, where are we with the treatment of metastatic prostate cancer? We have made great progress. We do have new drugs. There are newer drugs that are in the pipeline, and that's truly exciting, but there are still limits to these drugs. All of these drugs will develop resistance or patients will develop resistance to them. And so, some patients, even though they may respond to them when they're given, there's going to come a time that they'll stop responding.

So how do we better use these new drugs? And that's really one of the major questions that's facing us. Do we give drugs together? How do we sequence drugs? Which drugs should we use before the next drug? Combinations? These are questions that our research is now trying to figure out. And, of course, we're going to continue and this is good. We're going to have new drugs that are going to come into the mix, and they're going to have to be figured out where do we put them, and do we combine them with any of the currently existing drugs?

So that's one area where we're going to have to wait and see what happens. But it's exciting, because it offers us the possibility of hope, keeping alive longer and most importantly, having a better quality of life. And one way that we're doing this research is through the use of genetics. We're finding that we know that cancer is a genetic disease, that there are a number of prostate cancer types that have already been identified and classified based on their genetic structure. What genes are mutated, what genes are not mutated.

And we're increasingly, and through great research projects, trying to understand more about these and identify new types of mutations that actually will contribute to prostate cancer, increase the risk for prostate cancer. And we'll also talk about how someone might respond to treatments.

So, genetics is really important and we're only beginning now to understand how important it is. And this research is truly at its infancy. There are mutations that we just do not understand. I will talk about myself to give you an explanation. I am metastatic for prostate cancer besides four other cancers. And I've actually been sequenced three times, and we cannot find any mutation. That does not mean that I don't have mutations. It just means we've not yet identified them. So that's really one of the main thrusts of the research in genetics. Try to understand, identify what mutations are significant for what disease.

So that's really important and that's something that we're going to be increasingly doing. There are fantastic research projects going on, and I'll push one that I'm particularly familiar with in and I advocate for, and that's the Count Me In project, or the Metastatic Prostate Cancer Project. Where this project we're asking men who are metastatic, who have metastatic prostate cancer to donate some saliva, some blood, tissue if they have it from biopsies or from when they may have had a tumor removed. And we're also asking to look at their medical records.

And we're trying to understand based on their genetics, can we predict and understand what drugs they may respond to and can we see signaling that—because it's going to be a longitudinal study—can we find signaling that will let us understand that this resistance is beginning to develop, and can we then find a way to perhaps change that, re-sensitize a man to a drug? And also, better understand, because all these drugs have side effects. I mean there's not a drug that doesn't. And if you have a drug that someone's going to have a negative side effect, but because of their genetics, their cancer is not going to respond. We don't want to give that drug to them. We don't want them to have the side effects, and we certainly don't want to have the expense. So genetics and understanding is becoming increasingly more important.

Andrew Schorr:

Okay, so, Joel, we're digesting all that. So our viewers are saying, "Okay, I have metastatic prostate cancer, what tests should I discuss with my doctor, so we can see is there an actionable mutation? And if there isn't, how can we kind of know what we're dealing with? If it can be identified so that if something comes along, a new drug, we can take action and I can help the community." So what can the men out there do now?

Joel Nowak:

I think that everybody who has metastatic prostate cancer definitely needs to arrange to be sequenced. That's really number one. The question comes—and there are a number of commercial companies out there that will sequence a man and they will then do the sequence—they'll take the information that their tests have found and they'll do what basically are screens to try to see what drugs from what we know now. And, of course, this is going to be ever expanding—what drugs they may be responsive to. And I think what's really interesting is that many of these companies will also look at drugs that are outside of the FDA approvals…

Andrew Schorr:

…in development.

Joel Nowak:

Yeah. Or that's approved for another cancer that may actually, based on the genetic structure of their cancer, they may be responsive.

Andrew Schorr:

Okay, so be sequenced, next-generation sequencing.

Joel Nowak:

Yes.

Andrew Schorr:

Okay. That's step one. Step two is if this is changing, and you're let's say treated in the community, let's say.

Joel Nowak:

Okay.

Andrew Schorr:

Where your doctor treats all cancers or urology, whatever it may be. If you have this more advanced disease, is it important to connect with a research center for some analysis of your situation? How do you feel about that?

Joel Nowak:

That's a loaded question, Andrew.

Andrew Schorr:

Yeah. It varies too.

Joel Nowak:

So, I do believe that—and here my urologist friends are not going to be happy with me—but I believe that a man who has metastatic prostate cancer, if they're able to access a specialist as a medical oncologist who treats metastatic prostate cancer as one of their specialties, they're going to be better off that way. Now, if you're unable to access that because of where you live, there's nothing wrong with finding a urologist who is treating you and saying, “Would you work with a medical oncologist and consult with them. And this way instead of having to go see that person on a regular basis, I could see them once every six months, they could review the tests.”

And I think that's the ideal situation, because there's a lot of research going on right now, Andrew, and things are changing quickly. And that's really good, and it's really hard for a generalist to really keep up and really know as much or everything. I want my doctor to be as cutting-edge to know as much as they possibly can about what's going on, to know the research, to know when something comes up that makes sense for me. And it's just too much information for a generalist. And this is not a reflection on the doctor. It's a reflection of what's reality.

Andrew Schorr:

Yeah. It's the flood of information, but isn't that good?

Joel Nowak:

Oh, no it's terrific.

Andrew Schorr:

So, are you hopeful for yourself, Joel, and for so many other men you talk to and me who are in this situation? Look, we're talking about serious disease, but given that for themselves and their families, are you hopeful? Because there are people living longer.

Joel Nowak:

Right.

Andrew Schorr:

You're an example, and we know many others. Certainly we've lost people, but there are many people living longer and living pretty well. And now it seems like there's hope to extend that.

Joel Nowak:

Oh, absolutely. There's no question. I think we're in a time now that there's more hope than there ever has been. And there are new treatments coming up. There's more understanding. We're understanding that combining—we're getting better sequencing. And again, as I said, there are new drugs, and there's some great research in the pipeline. And when I was metastatic, which I knew I was metastatic 13 years ago, and yes, I've lived with metastatic prostate cancer now for 13 years. So it's not a death sentence. I mean that's really important.

I have seen so many new drugs come on the market. I don't know whether it's okay to mention it in the video, but I take enzalutamide, Zytiga. We now have a better understanding of when it might make sense to use chemotherapy than we did when I was diagnosed. Chemotherapy was the very last thing you did before you died. That's not the case anymore. We're finding it works for certain men, it works much better earlier on, and they live longer and have a better overall quality of life.

We're learning so much, and this is all in 13 years. And I'm pretty familiar with a fair amount of the pipeline that's in research right now in Phase II and Phase III trials. It's exciting, and we're finding that the drugs that are approved in one stage, they're now being tested and looked at at different stages.

Andrew Schorr:

Ask about trials, guys. Ask about trials. I've been in two, and I believe as a leukemia patient I'm here talking to you, because I was in those trials. Doesn't always work out. Sometimes trials go south, right? But you need to get information to see is that an option for you? And with smart doctors have a considered opinion about it.

Joel Nowak:

Andrew, I've been in three trials, so.

Andrew Schorr:

Okay. And here you are.

Joel Nowak:

They are so important. They truly are. They're just so important. But I want to go back to one part of that question you asked me. Didn't answer where do you get sequenced? I think you asked that, right? So there are a number of options now of commercial places that you can get sequenced. And I don't really have the answer as to which is the best. I don't know. So I've asked a few doctors, how do you know which of these options? And can I mention the names of some of the labs?

Andrew Schorr:

Yeah, sure.

Joel Nowak:

So, the ones that I hear most about that men are using is a commercial place called Color. There's a Foundation Medicine, there's a company called ProThera. And those are the three that I hear most often.

What they do? The problem is that they each look at different sequence of genes. And so one may look at these genes, and the other one is looking at a different group of genes. There may be some crossover, there may not be. So, we don't really have a place that's doing all of these genes, at least that I'm aware of.

So, I've asked doctors, "Well, how do you decide? Do you send your patients to one or the other?" And kind of the answer I'm getting is a little unsatisfying, to be honest, because they're saying, "Well, I'm more familiar and I use this." That's not a particularly good answer. So that's something I would like to see a little more understanding or resolution about.

Andrew Schorr:

Okay. So here's the thing, me with leukemia, you with a number of cancers, it has been, thank goodness, a changing landscape. It's changing about testing, it's changing about treatments. It's what sequence when, what combination, et cetera. The important thing for you, the patient and the family member, is be educated and be part of the discussion, right? Ask pointed questions: “Do I need to be sequenced?” Yes. “Where do we get it? How will we know what it's saying for me? Does a clinical trial line up with that? Does drug A or drug A, B and C line up with that?” And talk to somebody who knows, okay?

Joel Nowak:

Absolutely.

Andrew Schorr:

How'd we do?

Joel Nowak:

I think you summed it up beautifully and thank you for the work that you do for all of us with prostate cancer. We appreciate it.

Andrew Schorr:

Thank you very much. Joel Nowak, living with metastatic prostate cancer and some other cancers, which unfortunately were possibly going to get when we are a cancer patient. But let's live a long time, and let's get what's right for us.

Joel Nowak:

And if I could add, if that's okay? Let's thrive with cancer, because there's no reason that we shouldn't thrive.

Andrew Schorr:

We're not survivors.

Joel Nowak:

We're thrivers.

Andrew Schorr:

We're thrivers.

Joel Nowak:

You got it.

Andrew Schorr:

Andrew Schorr with Joel Nowak. Remember, knowledge can be the best medicine of all.

Joel Nowak:

Absolutely.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

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