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Conversations With Prostate Cancer Experts


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Dr. Mohit Khera: Treating ED

Dr. Khera, a urologist specializing in male infertility, male and female sexual dysfunction, and declining testosterone levels in aging men, is the Director of the Laboratory for Andrology Research and the Medical Director of the Executive Health Program at Baylor College of Medicine in Houston, Texas.

Prostatepedia spoke with him recently about current and emerging approaches to erectile dysfunction (ED) after prostate cancer.

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Khera

Why did you become a doctor?

Dr. Mohit Khera: Originally, I was a healthcare analyst. I did my MBA and then worked as an analyst in Boston for two years. I realized that it wasn’t very satisfying for me. I really wanted to be able to help other people and to help patients. I went to medical school and became a doctor. I have never looked back. It’s the best decision I ever made.

There’s something very gratifying about being able to help other people, particularly those who are in need and are in pain or hurting.

Have there been any particular patients who’ve changed how you see your role as a doctor or how you view the art of medicine?

Dr. Khera: There are numerous patients who stand out in my mind, particularly those who have suffered from prostate cancer and are trying to recover their lives, whether it be in terms of sexual function, incontinence, or even just keeping the cancer from coming back. It’s very challenging. These patients just

who is not very skilled or who does not do robotic prostatectomy quite frequently, their ED rates tend to be higher than someone who does the procedure on a regular basis. Surgeon skill is critical.

Typically, radiation does have a lower rate of ED initially, but several years down the road, the rate of ED can catch up and accelerates past the rate of ED from surgery.

We know that in androgen deprivation therapy (ADT) when you drop testosterone values, the risk for ED is significantly increased. Many studies show that you start losing nocturnal erections when the testosterone levels fall below 200. That’s exactly what happens when you give men ADT: ED rates should go up significantly.

Does erectile function come back after a man goes off ADT?

Mr. Khera: Yes, many times it does come back. The only problem is that not all men have their testosterone levels bounce back into the normal range after they stop ADT. Some men will actually have testosterone levels that remain in the low range. Of those men in whom levels do go up, whether they build up naturally or through testosterone supplementation, many will experience improvements in their erectile function once again.

Is there anything a man can do before treatment to prevent problems or reduce problems after treatment?

Dr. Khera: The concept of penile rehabilitation has been up for debate in my field. There are those who are proponents and those who don’t believe that it will help. I personally believe that penile rehabilitation is effective and will help patients recover their erectile function faster and more effectively.

In my program at Baylor College of Medicine, I start patients two weeks prior to the surgery on daily Cialis (tadalafil). I teach them how to use the vacuum erection device as well because I want them to use it after surgery. I check their testosterone levels before surgery, as some studies have shown that the testosterone levels do go up after a prostatectomy.

I also teach them the concept of penile injections just in case they need to use them after surgery if they’re not able to recover their erectile function.

There is a lot of counseling that goes on before the surgery. I put them on certain medications. I’m trying to prepare them for the surgery and to keep their tissue healthy and in the best condition possible.

There are a lot of doctors, though, who don’t do that kind of thing and who don’t talk about penile rehabilitation. Some aren’t even comfortable talking about ED with their patients except in the most cursory way. What would you say to a patient who’s encountered that? Should he go see someone who is a specialist in ED?

Dr. Khera: I think that patients should voice their opinions. If you look at this field 20 years ago, you realize there are three things that occur. A man wants to make sure that he gets his cancer out; he wants to make sure he can still get good erections; he wants to make sure that he’s not leaking urine after the procedure. Those are the three big categories of patient concerns.

In the past, many surgeons just focused on getting the cancer out and felt patients should be grateful for that. Yes, you may have some ED or incontinence, but we saved your life.

But now patients are very savvy and are demanding more. They’re demanding that they should have their cancer out and also have great erections and no incontinence after the procedure.

I think it’s very important when a patient has a diagnosis of prostate cancer that he discuss all three of these categories with his surgeon. They should discuss outcomes and the surgeon’s skill. They should discuss how many cases that surgeon has performed in this field.

Some patients in smaller communities don’t have access to doctors with your experience. Are there online resources for men in that position?

Dr. Khera: I think one of the best online resources is at http://www.sexhealthmatters.org. They have a phenomenal website with lots of literature and education on sexual medicine and rehabilitation. It’s an excellent resource that I share with my patients.

What about men who have already been through treatment and are suffering from ED? Which approaches seem to be most effective after which prostate cancer treatments?

Dr. Khera: There are many treatment options available to men with ED following a radical prostatectomy. The most common treatment options are PDE5 inhibitors. Those are called phosphodiesterase inhibitors—Viagra (sildenafil), Levitra (vardenafil), Cialis (tadalafil), and Stendra (avanafil).

These medications are very useful. Many of us give these medications on a daily basis to help men recover the nerves and penile tissue. I think it’s important.

Men can also use a vacuum erection device, which is exactly what it sounds like. It’s a vacuum that induces an erection. A band is placed at the base of the penis to maintain the erection.

Men can also use an injection therapy. We spend an hour in the office teaching them how to inject themselves with a very small diabetic needle. They inject into the base of the penis a solution that causes a very rigid erection. Then very early on they can start engaging in sexual activity.

I believe psychologically it’s very important that men start engaging in sexual activity early after surgery; it has a large psychological impact not only on the patient but also on the partner.

Other therapies include urethral suppositories called MUSE (alprostadil). These are placed into the urethra and dilate the penile tissue to give an erection.

Finally, I would say one of the best treatment options for many men is a penile prosthesis. We do perform this procedure. We place a penile implant into the penile tissue and a pump into the scrotum. Men can then pump saline into their penile tissue to induce an erection.

Isn’t it dangerous for a man to begin sexual activity soon after surgery? Is there any risk to him?

Dr. Khera: Typically in our practice, we like men to wait at least one month so that all the sutures heal and there is no risk of injury with the urethral anastomosis. We encourage men to start engaging in sexual activity one month after surgery.

Do you have any advice for men who are either worried about ED before going into treatment or who are struggling now?

Dr. Khera: There are two important things men should realize. First, prior to going into any type of treatment for prostate cancer, you should discuss ED outcomes with your doctor. Ask them what success have they had with ED. What is their plan for managing the ED if it does develop after the procedure?

Second, men who are already suffering from ED should know that there are excellent treatment options available. Men do not have to live with ED following a radical prostatectomy.

There are new treatment options emerging. We have started two studies, one with stem cell therapy. We take stem cells from men and inject them back into the penile tissue, with some benefit. We have another therapy called low-intensity shock wave therapy, in which we deliver shocks to the penile tissue. It does help recover erectile function.

There are many new treatment options on the horizon.

We’ve spoken about stem cell therapy before. I think you were just starting a trial.

Dr. Khera: I finished that trial and am now starting a Phase II trial. This first trial went extremely well. We’ll begin recruiting patients at the end of this year.

What we did not discuss last time was shock wave therapy. That has been out for multiple years and has gained a lot of success and media in the United States. Some of your readers may have seen commercials for it. We believe at this point that shock wave therapy should be used only in a research protocol until more data is available.

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Dr. Charles Drake On A Memorable Patient

DRAKE charlesDr. Charles G. Drake is the Director of Genitourinary Oncology, Co-Director of the Cancer Immunotherapy Program, and Associate Director for Clinical Research at the Herbert Irving Comprehensive Cancer Center, New York-Presbyterian/Columbia University Medical Center.

Dr. Drake discusses a patient whose case intrigued him.

Have you had a particular patient who changed how you approach your work?

Dr. Charles Drake: Absolutely. I had a gentleman who had metastatic, castrate-resistant prostate cancer. He had been treated with hormonal therapy. He was about to go on chemotherapy. He had progression in his bone lesions, but he developed hematuria.

On CT scan, there was a fairly clear lesion in his bladder. We couldn’t tell what it was just by the scans, and his PSA was doubling quickly, it had reached 30 or so in less than a couple of months. We sent him to Dr. Ronald Rodriguez, who was at Johns Hopkins at the time, and he thought it looked like this was probably metastatic prostate cancer invading the gentleman’s bladder. Dr. Rodriguez did a transurethral fulguration, meaning he burned all of the tumor he could find in the bladder. After the procedure, he told me that there was a fair amount of prostate cancer left behind. While the procedure went well, and he got most of the tumor, he didn’t get all of it.

What happened next was fascinating. The patient’s PSA dropped. His PSA went from 30 to 20 to 10. It eventually nadired, or reached its lowest point, at less than 1 ng/ ml and he remained in remission for nearly two years. Although clearly anecdotal, in my mind, there is almost no question that this was one of those anecdotal abscopal responses, which makes you believe that it can happen. Almost certainly that was what happened for this patient. I’ll never forget it, frankly.

Interesting. An unexpected systemic response from local treatment, right?

Dr. Drake: Yes. It was brilliant. Just by treating the local disease in the bladder, this gentleman did well for over two years before it apparently progressed again, and he wound up getting chemotherapy. He also did very well with the chemo, so in my hopeful view, that suggests that maybe this fulguration procedure sparked a systemic immune response.

Join us to read the rest of Dr. Drake’s comments on the elusive abscopal effect.


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Dr. Robert Bristow On Precision Radiation Therapy

Robert Bristow portraitDr. Robert G. Bristow is the Director of the Manchester Cancer Research Centre (MCRC) at the University of Manchester in the United Kingdom.

Prostatepedia spoke with him about precision radiation therapy.

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What is meant by precision radiotherapy?

Dr. Robert Bristow: There are at least two aspects to precision radiotherapy. The first is the “physical precision” of radiotherapy; the actual targeting of the radiation beams or radioactive compounds to the specific tumor tissues that you want to treat, with maximum protection to the normal tissues that surround that particular tumor. For example, external precision radiotherapy uses intensity modulated radiotherapy or proton therapy where you then deliver the radiation in very precise defined volumes.

The other type of physical precision in radiotherapy uses brachytherapy, actually placing seeds or catheters with radioactivity directly in the prostate and being able to conform the dose tightly to the prostate gland, with that dose falling off rapidly around the surrounding normal tissues that could acquire side effects (e.g. the bladder or rectum). The concept of physical precision has allowed us to increase the total dose to the prostate cancer and yet maximally spare the normal tissues from side effects.

Another aspect of precision radiotherapy is “biological precision” whereby we think about the entire treatment using radiotherapy based on the innate characteristics of a particular patient’s tumor.

This includes information about the genetics and microenvironment of the tumor cells within the cancer that make it uniquely suited to be cured by radiotherapy alone, or in combination with drugs that modify biology or the immune system.

This can have the effect of increasing the chance that the cancer is cured locally and also attack cancer throughout the entire body to kill what we call occult, or hidden, metastases.

Precision radiation therapy therefore now means both an understanding of the biology of the tumor in a specific patient as well as physics to optimally deliver that radiotherapy.

What role does functional imaging play?

Dr. Bristow: Imaging is a cornerstone for staging cancer and understanding its biology. It is absolutely required for staging patients to understand the anatomy of their cancer—not only where the local tumor is, but also the spread to the pelvic lymph nodes and beyond that to the bone, for example.

Anatomic imaging therefore gives us the geography of where those tumors are in the body. Functional imaging adds further components to start to understand the biology of those tumors. For example, by using functional imaging with MRI, we can look at differences in tumor blood flow, oxygen levels, or metabolically active versus metabolically inactive tumors.

For PET scanning, we can use specific radioactive tracers that will tell us about the glucose in the tumor, the amount of the tumor that has low oxygen status (called hypoxia), and the relative growth rate of tumors.

So imaging can now give us both anatomy and biology.

Totally different world, right?

Dr. Bristow: It is. If you understand the biology from the imaging and where things are, you can certainly target specifically those areas with precision radiotherapy using novel biological agents, which we call molecular targeted agents.

Join us to read the rest of Dr. Robert Bristow’s comments on radiation therapy for prostate cancer.


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Prostatepedia’s July Issue On RT

When you’re diagnosed with prostate cancer, you’re usually offered three options: monitor the cancer to see if it progresses, elect to have your prostate surgically removed, or elect to have the cancer treated with radiation therapy. Radiation is also used after surgery or in the event that the cancer comes back after that initial treatment.

Most of you are familiar with radiation therapy for prostate cancer—how it works, potential side effects, and special considerations. Even if you have not had radiation, chances are you’ve got a friend of relative who has.

This month, however, we’re delving into less often discussed aspects of radiation therapy: the role genomics will play in radiation therapy, why we might consider combining radiation with immunotherapy, the impact imaging has on radiation therapy, and the role radiopharmaceuticals play.

Dr. Robert Bristow of the University of Manchester gives us a sweeping overview of precision radiation therapy—from functional imaging to genomics—as well as a run-down of molecularly-targeted agents.

Dr. Charles Drake of the New York- Presbyterian/Columbia University Medical Center discusses radiation therapy and the elusive but intriguing abscopal effect.

Dr. William Hall of the Medical College of Wisconsin talks to us about the precision radiotherapy movement and how it will revolutionize patient care.

Dr. Daniel Spratt of the University of Michigan Health System talks about a clinical trial he’s working on with

Dr. Felix Feng from the University of California, San Francisco (UCSF) that uses genomics to determine which patients will receive a combination of radiation therapy and Erleada (apalutamide) and which will get a placebo.

From Dr. Ralph Weischelbaum of the University of Chicago we hear about the thinking behind combining radiation therapy with immunotherapeutic agents—with a cautionary note.

Dr. Johannes Czernin from the University of California, Los Angeles (UCLA) talks about a clinical trial he’s running on a radiopharmaceutical agent—a PSMA targeted lutetium-177. He is looking for patients to join, so if you think you might be a fit, please reach out to him at the email address included at the end of his conversation.

Ms. Merel Nissenberg offers the National Alliance of State Prostate Cancer Coalition’s stance on hypofractionated radiation therapy.

Finally, Ron B. tells us about his experiences with stereotactic body radiation therapy. He has some advice for those of you in a similar situation to the one in which he found himself.

We suggest you read through this month’s conversations and then send the issue to your health care team so that you can discuss the contents with them.

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Telemedicine + Clinical Trials

Dr.-Matthew-Galsky

 

Dr. Matthew Galsky is the Director of Genitourinary Medical Oncology at the Tisch Cancer Institute.

He is keenly interested in developing novel treatments for genitourinary cancers.

Prostatepedia spoke with him about his work exploring the feasibility and safety of using telemedicine to conduct clinical trials.

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How did you become interested in using the telemedicine platform?

Dr. Matthew Galsky: Only a small portion of patients throughout the world, and in particular, the United States, enroll in clinical trials. Yet, this is really the only way that we advance the field in terms of understanding the risks, benefits, and comparative effects of new treatments. We noted that the conduct of clinical trials in the United States had several inefficiencies that could be addressed with technological solutions.

One of our initial studies looked at a large group of clinical trials that had been done in the United States and that had been captured in a large, public database. We looked at thousands of clinical trials done in the United States over a period of about a decade. About 25% of those clinical trials closed early due to poor accrual: not enough patients enrolled in the studies. The studies ultimately closed and didn’t answer the questions they set out to answer, which is a huge waste of financial and patient resources. The patients who enroll are altruistic and want to advance the field. But their participation did not accomplish what they had signed up for. This is a big problem.

Our next study was related. We looked at the zip codes of all of the sites that had open trials, we matched those to different cancers in the United States, and then we asked a very simple question. What was the average distance that a patient would need to travel to reach the nearest clinical trial? We focused on trials for some major cancers: prostate, lung, colon, and breast cancer. We found that 40-50% of the population resides greater than one hour driving time, one way to the nearest clinical trial site.

Wow! That’s far.

Dr. Galsky: It’s far and prohibitive for a large number of patients. It’s not surprising, but it’s disappointing.

We have one problem, that we don’t have enough patients enrolling, and then we have this related problem, that the studies are not geographically accessible to patients. This really hit home.

A study published in the Institute of Medicine in 2010 reported that clinical trial sites are typically opened where the nvestigators are located rather than where the patients are located.

That makes sense.

Dr. Galsky: Absolutely. But it creates barriers to enrollment.

We thought there might be a technology solution to this, and so we set out to test the feasibility of a prospective clinical trial with an intervention (studying a drug in prostate cancer), enrolling patients who lived at a distance by replacing the on-site study visits with telemedicine study visits.

It was a small study to establish proof-of-concept for this approach. The intervention was a drug called metformin, which is FDA approved for the treatment of diabetes. In various epidemiologic studies, it has been associated with potential anticancer activities and specifically anti-prostate cancer activities. For this pilot study, we had patients come to our site to enroll in the study because we figured that would require the least number of visits and at least one face-to-face interaction.

After that visit, the rest of the study was conducted by telemedicine, so patients took their pills at home. This medicine is oral. It’s a pill. We connected with them via telemedicine visits once a month to review their side effects and the numbers of pills that they had taken or missed. The patients had laboratory testing done locally with the results sent into us.

We were ultimately able to show that this is feasible in this specific context. Obviously, the deck was stacked in our favor to ensure we could do this safely, but it was possible.

Break down what you mean by telemedicine. Was this email contact?

Dr. Galsky: This involved video visits with patients. We had to use a platform that was HIPAA compliant and optimized for security, so we partnered with a company that had developed a technology they were using for purposes outside clinical trials, such as trying to prevent hospital readmissions by having nurses monitor patients remotely.

We gave patients a mobile device at that initial visit, a Samsung phone running the software for this platform. On our end, we connected with the software loaded on our desktop computers. With these tools, we were able to conduct video visits once a month.

Did you do any training for the participants?

Dr. Galsky: We did about ten minutes of training at that initial visit, and then we had prepared a pamphlet with troubleshooting questions and answers.

What can you conclude from your results?

Dr. Galsky: The primary endpoint of this study was to show that telemedicine was feasible. We defined feasibility as greater than two-thirds of the enrolled patients completing all of the eligible telemedicine visits. Each patient on the study had six planned telemedicine visits, but if they went off of the study because their cancer progressed, they had less than those six visits. Six visits per patient times 15 patients enrolled, means 90 total visits. We conducted 84 televisits with patients during the course of the study, so we met that primary endpoint of feasibility.

If patients had to go off the trial because their cancer progressed, that’s not really a failure as far as the telemedicine element, is it?

Dr. Galsky: Exactly. The primary endpoint was feasibility.

The secondary endpoint was safety and effects of the drug. We saw that seven of the patients had a minor decline in PSA while on the study.

So, metformin may have some activity warranting further evaluation of the treatment.

We did questionnaires at the end of the study regarding the patient’s rating of their experience with the telemedicine approach. We asked whether they would participate in a similar type of study in the future, and the majority agreed or strongly agreed that they would.

You made it easy for them to participate.

Dr. Galsky: That’s the key; absolutely.

What does this mean going forward? Should this kind of approach be integrated into more trials?

Dr. Galsky: There is certainly the ability to integrate telemedicine into existing studies using lower toxicity oral interventions to replace some of the study visits. That’s low-hanging fruit.

In terms of expanding to more complicated areas, there is potentially a pathway for investigational sites to partner with local groups to offer trials that are monitored and conducted on a remote basis with local physicians at the bedside. This is similar to what’s happened in the intensive care unit field.

There are a huge number of intensive care units within the rural United States that are staffed and monitored by intensivists that are sitting miles away in front of computer screens and interacting with the nurses and the physicians at that hospital just to manage the patients.

If it can be done for some of our sickest patients, then certainly there is a path forward to do this in other contexts. It’s just a matter of making sure that the regulatory environment is ready for this and that there is a buy-in from all of the stakeholders involved. We have proof that we can think differently about our entire clinical trials enterprise if we want to.

What do you think about extending that towards prostate cancer care or general cancer care?

Dr. Galsky: We’re really focused on clinical trials. That’s our main interest. But we’re already seeing telemedicine in standard of care applications.

My colleagues here and at other institutions are already doing second opinions appointments via telemedicine. They’re doing postoperative visits via telemedicine. For prostate cancer and for other genital urinary malignancies like bladder cancer, where there’s been a centralization of surgeries and patients travel a distance for their surgery, then return to the care of their local teams, the ability to do postoperative checks at a distance offers the potential for significant value added. There is a range of applications for this type of technology.

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Stupid Cancer.

Dave Fuehrer is the CEO of Gryt Health, creator of the most used app in all of oncology–Stupid Cancer.

Prostatepedia spoke with him about his Stupid Cancer app and about how Gryt partners with pharmaceutical companies, hospitals, and healthcare organizations.

How is it that you came to create an app for cancer patients?

Mr. Dave Fuehrer: Out of personal agony. I was diagnosed with cancer twice in my twenties. I went through all of the surgeries and radiation, lost my ability to be a biological father. I really struggled with all the side effects. Ironically, at the time, I managed research projects for Pfizer. You would think that if there were anybody equipped to look for help or find resources, it would have been me. But I was so full of shame, which I wasn’t able to overcome.

Three years after my second diagnosis, my father was diagnosed with bladder cancer. He passed away, and

I couldn’t continue in life being a researcher and unable to help my own family. So, I left my career at that point and have been doing this ever since.

So it’s really personal then.

Mr. Fuehrer: Very personal.

Why did you name your company GRYT Health? What does grit mean to you in relation to your own two-time cancer diagnosis, your father’s journey, and what you’re trying to do?

Mr. Fuehrer: We started out with a different company name— SC Research Ventures—because we believed that we would use research to help improve the experience of cancer. Then, we realized that we’re not just researchers, and we don’t just do something—we live it.

Our chairwoman, Shelley Nolden, is a young adult APL leukemia survivor who spent 40 days in the hospital fighting for her life. While we were coming up with a new company name, she wrote a blog about having the grit to get through cancer. We all had to find our grit, so we wanted to name our company after that shared experience. One of us looked at the other as said, “We have to spell it with a Y because there is no I in grit. It’s a team sport.”

I love that. Your first project was the Stupid Cancer app?

Mr. Fuehrer: Yeah, absolutely. We started the Stupid Cancer app more than four years ago. It was a concept to see if we could create something to help people connect.

We built a pilot beta version that we ran from 2013 to 2014. We had a quarter of a million user interactions during that year. It really showed us how significant the demand was, but that we needed to find a business model, a way to make it sustainable.

We founded GRYT to do that. We worked with the National Cancer Institute (NCI). One of my cofounders has a mentor at the Office of Cancer Survivorship, and she told us about this program called the Small Business Innovation Research (SBIR), and how NCI has all these wonderful initiatives. We got some amazing coaching from some of the top researchers in the cancer space.

How does the app work?

Mr. Fuehrer: We spent two years working on building something around our community, not around a specific goal. When a company does research, they decide to research this type of patient with this type of disease who is experiencing this type of side effect, and they go design the survey to do it. Then, they learn things in a very specific area. We saw that’s not how people live.

We wanted to build something around the way people affected by cancer live. We spent two years working with our community. We published a couple of papers. We’ve been at the Society for Behavioral Medicine conference the last two years presenting our results.

The Stupid Cancer app has been engineered around the way our experience of cancer affects us. We have a proprietary algorithm that looks at what your primary diagnosis is and at the stage you were diagnosed, because somebody with a Stage 1 cancer has a very different experience from somebody with a Stage 4 cancer.

We look at the treatments you’ve been on. We created this platform to help you connect with somebody just like you who knows what you’re going through without you having to explain it to them.

So, it’s a way to connect with other patients like you?

Mr. Fuehrer: Exactly, right.

Are those interactions one-on-one or are they part of a larger group, like a support group?

Mr. Fuehrer: They are both. We launched The Stupid Cancer app October 1st, and we have had 400,000 interactions since then. A little more than 75% of those are private messages one-to-one.

The other quarter interactions are in chat rooms around specific topics. We have moderators come on who are experts in an area, so the other quarter activity is around dealing with issues like depression or side effects. We have a book club. It’s just the experience of being with others.

When you create a profile, the app instantly matches you with others just like you. For me, I’m connected with other two-time testicular cancer survivors who know what that shame is like.

They ask me questions like “I don’t know if women are ever going to find me attractive anymore. Am I still a man?” These are things that are too hard to talk through in person or to even admit.

The anonymity of the app allows people to say more than they might in an in-person support group? Can you talk a little bit more about that dynamic?

Mr. Fuehrer: Absolutely. The hardest things to say are the things that need to be said the most. I’ll use myself as an example. I didn’t know if I was still a man anymore. I went from being a 20-year-old athlete to my wife leaving me because I couldn’t have kids, to not being able to perform sexually. My body parts stopped working. In those trauma moments, the things that we’re too embarrassed to say are the most important things to deal with, and they’re often not dealt with.

The whole purpose of this anonymous platform is to give you a place to say what you need without worry about being judged or someone knowing you and thinking differently of you. I’m in awe every day of the types of things people are able to explore, like women in their 30s going through menopause being able to talk to somebody in that situation without being judged. It’s life changing.

There’s no risk of running into that person later.

Mr. Fuehrer: That’s exactly right.

This dynamic comes up a lot in prostate cancer. The attitude can be: “You’re 70. Who cares if you have erectile dysfunction? Does it really matter?” To those men, it does, and it’s difficult for a lot of them to talk about it, even with their own doctors.

Mr. Fuehrer: I was excited to talk to you because prostate cancer is rare in that there are many treatment options, and the only difference is how each affects your life. You can have the same medical outcome from a couple of different approaches. Are you comfortable with cancer in your body, or do you need to have it removed? That’s personal choice, but each makes tremendous differences in your life.

Those are the kinds of things that people need help exploring because if you’re not thinking about one versus the other, you may make a decision that, six months from now, has turned your life upside down, when you didn’t expect that to happen.

Right. For most men, prostate cancer isn’t an emergency situation, so the time for them to be talking to other men with prostate cancer is before they even make that treatment decision.

Mr. Fuehrer: Yes.

Do you have many users with prostate cancer on the app?

Mr. Fuehrer: It’s not one of our larger populations. Our most active populations are people with rarer or sensitive conditions, including genetic mutations, people with advanced cancers, and rare cancers because it’s hardest for them to find anybody who relates. We find that they are the most active groups on the platform. I really care about people who aren’t in immediate crisis situations because we still have needs. My needs, for example, aren’t usually crisis. They’re more about how I want to live my life.

For people with prostate cancer, this app won’t help you make a treatment decision for tomorrow. This is a very different thing, a resource for you to anonymously figure out how this will affect you.

Right, or even the other way around. Thirty percent of our readers are support group leaders, so if each of those support group leaders went on and offered support and advice to other men, they could reach a lot of people they wouldn’t normally reach, right?

Mr. Fuehrer: I would love to invite any of those individuals to lead a chat on our app because we have users who don’t know they’re there. If any readers want to come on and be moderators, I would love to put their expertise in front of our community.

Great, how would they contact you? Directly, or should they just go on the app and mention it in one of the chats?

Mr. Fuehrer: They can contact me. Our program director, Aerial Donavan, works with individuals to set those up, and we help lead it with them.

What other programs do you offer at GRYT?

Mr. Fuehrer: Everything we’re doing at the moment is through The Stupid Cancer app, but the organizations that we work with are pharmaceutical companies, health systems, large hospitals, and healthcare organizations. My entire role is to identify resources that address the needs of people on our platform.

For example, someone in Wichita doesn’t know about all the treatment options at MD Anderson and Memorial Sloan Kettering. My mission in life is to make sure that wherever you are, you know what’s available so that you can make the right decision for you.

Have you thought at all about using it in clinical trial research?

Mr. Fuehrer: Yes. We have a partnership with a pharmaceutical company that’s running a Phase III clinical trial on a genetic mutation. We let people on our platform who have those tumor types know about this information.

One of the women with that tumor type wrote back and said she’d been asking her medical team for three years if there was a genetic sequence for her tumor, and they’d been saying there wasn’t. She wondered how the trial could be available and her medical team at her hospital say there is nothing for her. We connected her with that company, and they provided no-cost genetic sequence. It changed the whole course of her treatment.

Is there anything else we should know about GRYT and Stupid Cancer?

Mr. Fuehrer: The most important thing is connection. This is a resource for people to start. Connection is what opens you up to everything else. Whether somebody is looking for someone else who understands them, other treatment options, the people at Dana-Faber, or a way to get that information to patients, connection is what enables all of that to happen.

Also, we believe that caregivers are just as impacted as patients. This platform is not just for those diagnosed. It’s for anyone affected by cancer.

We’ve paid a lot of attention to onboarding, so when you sign up, we don’t ask if you are a patient or a caregiver.

My brother looked at our process and said: “I’m neither patient or caregiver. I wasn’t diagnosed, and I wasn’t yours or dad’s caregiver.” I realized my brother has gone through cancer alongside two immediate family members, and he doesn’t feel welcome. So, we’ve designed everything to welcome those who’ve been affected by cancer. We don’t use labels to define people.

That’s a dynamic at play in the prostate cancer world. We talk about significant others a lot, but often it’s adult children doing the research and then providing it to a parent, who then goes and gets treatment. It’s a family disease.

Mr. Fuehrer: Totally. In pediatrics, for example, it’s the parents. And it’s also the 20 and 30 year olds on the platform. And for older generations, it’s their kids—me—looking for help.

Not a member? Join us to read more about tech/health collaborations for prostate cancer.


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Collaborating For Prostate Cancer

This month, Prostatepedia explores collaborations between tech and health care in the world of prostate cancer. Long gone are the days in which individual doctors and scientists operate in silos to both treat patients and conduct research.

Join us to read about collaborations between health care and tech for prostate cancer.

Large multi-institution and multidisciplinary collaborations that leverage emerging technologies to both collect data and to make sense of that data are the name of the game.

In our first two conversations, we feature two leaders in prostate cancer today—Dr. Felix Feng of the University of California, SF and Dr. Paul Nguyen of the Dana-Farber Cancer Center. Both discuss current projects that exploit emerging technologies and speculate about what the future might—they hope will—hold.

Dr. John Wilbanks of Sage Bionetworks discusses his company’s role in the National Institute of Health’s newly launched precision medicine initiative All of Us. (Some of you may remember a conversation with another Sage Bionetwork member, Dr. James Costello, in Prostatepedia’s May 2017 issue.) Dr. Wilbanks offers a unique perspective; his former role as the executive director of the Science Commons project at Creative Commons placed him at the intersection of tech, health care and patient advocacy arenas. All of Us would love men with prostate cancer to participate in the project.

Ms. Jina Ko and Dr. David Issadore of the University of Pennsylvania discuss using liquid biopsy and machine learning—or artificial intelligence—to diagnose pancreatic cancer. They argue that the technology they’ve developed should work for any cancer type, including prostate.

Dr. Matthew Galsky of the Tisch Cancer Institute discusses his efforts to incorporate telemedicine into clinical trials. As we learned in our conversations about prostate cancer clinical trials last month, the distance that you have to travel in order to participate in a clinical trial can often be a deal-breaker.

Mr. Dave Furher of Gryt Health introduces us to Stupid Cancer, an app that connects patients. Mr. Fuehrer is keen on getting more prostate cancer patients to lead in-app chat rooms. Those of you who lead support groups may be interested in participating: this is a way for you to reach men outside of your local communities, men perhaps isolated and in need of support.

In his quarterly column, Mr. Jamie Bearse of Zero discusses an astounding increase in federal funding for prostate cancer research. Zero’s tireless work on Capital Hill benefits all men. If you haven’t yet, take a look at their website to review some of the work they do and the tools they provide for men like yourself.

Finally, Gary tells us about his own prostate cancer experience and offers advice for those of you in a similar situation.

Our conversations this month underscore the tremendous changes happening in the world of prostate cancer The next five years will totally revolutionize the way we diagnose and treat prostate cancer as well as the way in which we conduct research about the disease.

These are exciting times, friends!

Join us to read our June conversations.