Erectile Dysfunction After Treatment

Prostatepedia_September 2016 Volume 2 No. 1 September 2016 Volume 2 No. 1 P1 In this issue....

This month, we’re talking about Hormonal therapy can cause severe While there are a range of other erectile dysfunction (ED) in men ED. As a result, the Viagra drug family treatment options for men who have with prostate cancer. The three major often does not pose sufficient activity been on hormonal therapy and for prostate cancer treatment tools— to facilitate vaginal penetration. whom Viagra is not sufficient, I have surgery, radiation, and hormonal Fortunately, two drugs have been shown seen the most success with penile therapy—all result in serious sexual in randomized trials to significantly injections and penile implants. dysfunction in a majority of men. improve the effectiveness of Viagra. Both approaches have a high success And ED treatment options each The first drug is losartan, a blood rate in our patients, but many men pose serious issues with side pressure drug that blocks angiotensin, are reluctant to inject their penises effects, effectiveness, and cost. a hormone that causes blood vessels and even fewer have elected to get to contract. By blocking the action a penile implant. However, those Viagra and related drugs can be helpful of angiotensin, losartan causes blood patients who have elected to get penile for many men. There is extensive vessels to relax. As erections require implants have been very satisfied with medical literature that supports using relaxation of the arteries to the penis, the result. As one patient said, “I push these drugs after surgery or radiation. the benefit of losartan is obvious. a bulb in my scrotum and I get an Most medical oncologists do not erection. It stays up until I push focus on sexual function. I think this Cabergoline is the second drug that has a second time. I wasn’t that good may, in part, explain why we do not been shown to improve the effectiveness at 17!” have well-established programs of Viagra. Cabergoline is a long-acting, to counter sexual dysfunction in men very potent dopamine agonist that has The bottom line? Talk to your on hormonal therapy. With that in mind, been shown to act as an aphrodisiac in doctor about erectile dysfunction I thought it might be worthwhile both men and women. A randomized trial after treatment. to mention what has worked in comparing Viagra alone to Viagra in my clinic. addition to cabergoline showed improved Charles E. Myers, Jr., MD sexual performance in the cabergoline arm.

P2 September 2016 Volume 2 No. 1 Contents: Contributors:

P4 Mohit Khera, MD: Editor-in-Chief: Erectile Dysfunction Charles E. Myers, Jr., MD

P8 John P. Mulhall, MD: Publisher Erectile Dysfunction Jessica Myers-Schecter After Hormonal Therapy Copyeditor P14 Jean-Francois Eid, MD: Grier McCain The Penile Implant After Prostate Cancer Proofreader Robert M. Protz, MS P18 Clinical Trial: Arthur Burnett, MD Erythropoietin + Erectile Function Transcriptionist After Surgery Sarah Mason

P20 Paul Nelson: Online Erectile Designer Dysfunction Support Verity Burgess

P22 Kathie Houchens: Wives Talk Community Outreach About Erectile Dysfunction Corinne Halada

Mission: Sales Consultant We aim to provide useful current Rod Schecter information about prostate cancer and its treatment. This information Business Consultant and the products and media advertised Rose Sgarlat Myers, PT, PhD in this publication are advisory only. Individuals pictured are models and Editorial + Billing Offices are used for illustrative purposes only. 274 Redwood Shores, #739 Please consult your physician for Redwood City, CA 94065 specific medical or therapeutic advice. 434-220-3774

Subscriptions: Administrative Offices $55.00/12 Electronic Subscription PO Box 655, Earlysville, VA 22936 $110.00/12 Print Subscription Copyright September 2016. Rivanna Health Prostatepedia is published in Charlottesville, Publications, Inc. All rights reserved. Virginia by Rivanna Health Publications, Inc. ISSN: 2381-4020

September 2016 Volume 2 No. 1 P3 Mohit Khera, MD Erectile Dysfunction

Dr. Khera, a urologist specializing of specialization has been sexual matter or whether the man has in male infertility, male and female dysfunction for men and women and a willing partner. Our research was sexual dysfunction, and declining hormone replacement therapy. one of the first to show that patients testosterone levels in aging men, with a partner who wants to engage is the Director of the Laboratory I also have a passion for research: in sexual activity tend to recover their for Andrology Research and the I conduct a lot of clinical trials. I also erectile function faster. That makes Medical Director of the Executive started a lab called the Laboratory sense: they have someone to have Health Program at Baylor College for Andrology Research. We do basic sex with. Men without a willing of Medicine in Houston, Texas. science research and run studies partner may not recover as quickly looking at ways to improve sexual because there is less motivation Prostatepedia spoke with him function and testosterone delivery. to recover. recently about erectile dysfunction after prostate cancer. Think of the penis as a muscle, like your biceps muscle muscle in your How did you come to focus on prostate arm. If I put your arm in a cast today cancer? “If you don’t use the and then took the cast off after six months, there would be significant Dr. Mohit Khera: I am a urologist penis, it will atrophy.” atrophy of that muscle. It would be by trade, but I did not initially go into withered. The penis is the same. If you medicine. First, I got my MBA and don’t use the penis, it will atrophy. Masters in Public Health. I worked as an analyst for two years in Boston How common is erectile dysfunction Erectile dysfunction rates start to before going to medical school. after prostate cancer? increase significantly in men in their When I got to medical school, I fell 50s. What else happens in the lives in love with urology because I like Dr. Khera: If you look at the literature, of men in their 50s? Their partners to operate and I like to see patients. the data can vary significantly: usually go through menopause. As more men are getting older, anywhere from 10% to as high as 90%. These men are not having sex; that’s there is going to be a real need You see such a wide fluctuation, when you start seeing a significant for urologists. because there are so many variables. amount of erectile dysfunction. A critical factor is surgeon skill. In academic urology, you’re asked Surgeons who have more skill in Men who have a willing partner to super-specialize, which means you preserving the cavernosal nerves are more motivated to use the pick one area of specialty. For example, have better outcomes. medications to engage in sexual activity in my practice, we have one person and to exercise those muscles. who specializes in prostate cancer, But there are other factors, such as That tends to result in better bladder cancer, and kidney stones. patient comorbidities; some people erectile function down the road. For the last nine years, my area believe the testosterone levels

P4 September 2016 Volume 2 No. 1 Are some prostate cancer treatments Is erectile dysfunction after prostate associated with a higher rate of erectile cancer a result of the treatments a man dysfunction than others? gets, or is there something about the cancer itself that causes erectile dysfunction? “This is finally Dr. Khera: Cryotherapy tends a potential cure for to have the highest rate of erectile Dr. Khera: The diagnosis itself dysfunction. Cryotherapy basically can cause psychogenic erectile erectile dysfunction.” means freezing the prostate. dysfunction. In other words, When you freeze the prostate, many men can have an increase you also generally freeze the nerves in erectile dysfunction rates after they The theory is based on arterial and if you freeze the nerves, you get receive a diagnosis, but before surgery. diameter theory, first described by erectile dysfunction. The rate for erectile Dr. Francesco Montorsi. Dr. Montorsi dysfunction following cryotherapy Many women are also concerned. explained that the penile arteries are is quite high, but then most patients (I had the wife of a prostate cancer 1 to 2 mm. The coronary arteries are don’t do cryotherapy. patient call me to ask if she could 3 to 4 mm. The carotid arteries are get cancer if she had sex with 5 to 6 mm and the peripheral arteries The majority of men in this country her husband.) could be slightly larger. The penile choose either surgery or radiation. artery usually becomes occluded Surgery has a higher rate of erectile The fact that you have a cancer in or blocked first because it’s dysfunction in the immediate post- the genital region has a psychological the smallest. operation period. Over the course of impact and can effect sexual function. 12 months, men tend to regain their You’re worried about what is going The Prostate Cancer Prevention Trial erectile function. Radiation tends to happen. However, more severe demonstrated that 15% of men who to affect the patient later, say five erectile dysfunction usually happens develop erectile dysfunction today to 10 years down the road, and can after surgery. will have a heart attack or stroke increase the erectile dysfunction within seven years. Other studies rates in this population. Today, most patients have nerve- have shown the same. sparing prostatectomies, which What about hormonal therapy? means that we spare the nerves Another study by Dr. Montorsi during surgery. After surgery, many demonstrated that men who have Dr. Khera: Hormonal therapy is not patients experience a process called a heart attack or stroke, on average, considered a primary therapy; it is an neuropraxia, which means temporary develop erectile dysfunction three adjuvant or neoadjuvant therapy. paralysis of the nerves because years prior to having a heart attack Hormonal therapy can have a devastating they’ve been manipulated. It can or stroke. Depending on which study impact on erectile function. It significantly take some time for those nerves you look at, most show that erectile reduces testosterone levels. That is to recover. We know that full recovery dysfunction is the first sign of how it works. When you reduce of erectile function typically occurs heart disease. testosterone levels, you reduce about 12 months after surgery. a man’s ability to get an erection. If a man walks into my clinic with Are there other reasons, aside from the erectile dysfunction and has two cardiac We use hormonal therapy in men with sexual life of a couple, to be concerned risk factors—say hypertension and high-grade disease when we give about erectile dysfunction after obesity—then I send him for a cardiac them radiation. We also use hormonal prostate cancer? Are men with erectile evaluation, because I fear he may therapy in men with metastatic dysfunction more prone to depression have occult cardiovascular disease. prostate cancer. Sometimes we use or heart disease, for example? hormonal therapy in men with high- Isn’t it true that most men with prostate grade cancer with a rising PSA after Dr. Khera: Men with erectile cancer have cardiovascular disease radical prostatectomy. dysfunction are much more likely as well? to have a heart attack or stroke. Again, hormonal therapy is not Erectile dysfunction can be the first Dr. Khera: Not necessarily. Keep those considered primary therapy. These are sign of a heart attack or stroke. separate. Men, as they get older, are adjuvant therapies. likely to have cardiovascular disease.

September 2016 Volume 2 No. 1 P5 And it is true that prostate cancer is Other first-line therapies include the a disease of older men, but prostate vacuum erection device, which is cancer in itself has nothing to do with literally a vacuum. It brings the blood cardiovascular disease. The diseases into the penis. You place a band are completely separate. If someone at the base of the penis to keep has prostate cancer, cardiovascular it erect. The urethral suppository is disease is not a risk factor for another option. A urethral suppository prostate cancer. is made of a vasodilator called prostaglandin; the suppository Now, men with erectile dysfunction is placed into the urethra. It causes are much more likely to be depressed. the penis to dilate and thereby induces an erection.

In these Level 1 therapies, I usually use sex therapy for patients. Sometimes I also use amino acids “Erectile dysfunction such as arginine, carnitine, and can be the first sign of citrulline. These amino acids have a heart attack or stroke.” been shown to be helpful because they are precursors to nitric oxide.

Level 2 therapies include an What concerns most men with injection to the penis. These Level 2 erectile dysfunction is that there medications dilate the blood vessels. isn’t a cure for it. Almost everything A man injects his penis a maximum that we currently do to treat erectile of every other day, alternating sides dysfunction doesn’t solve the so he doesn’t develop a scar. problem. The disease gets worse every These injections are effective. year; we’re just putting a Band-Aid on the problem, masking it. Viagra But if the Level 2 options don’t work, doesn’t fix it. Viagra just covers your we turn to Level 3. I perform a surgery problem while the disease process called an insertion of a penile prosthesis gets worse every year. where I implant a device into the man’s body with a pump in the scrotum Eventually, Viagra stops working. and two cylinders in the penis. All of these medications stop working. The surgery is very effective and allows a man to engage in sexual What are some of the treatments available? activity without being dependent on medications. Dr. Khera: We can divide them into three levels. How do you determine which of these treatments is appropriate for which patient? Level 1 is typically associated with Viagra-like drugs: Viagra, Levitra, Cialis, Dr. Khera: Cost, compliance, and Stendra. These medications convenience, and efficacy. are effective. Seventy-five percent of patients with erectile dysfunction We also look at the adverse safety take these medications. They are profile, or adverse effects. Some effective, but they’re not effective people will take Viagra, but get very forever. And they do have some side bad headaches. Others take Cialis effects, such as headaches, flushing, and get back pain. nasal congestion, and back pain.

P6 September 2016 Volume 2 No. 1 Also, remember that Viagra is very expensive. Now many patients get their medications online at compounding pharmacies, but typically, Viagra is expensive.

Are these medications usually covered by insurance?

Dr. Khera: Usually they’re not covered by insurance. That is why they’re so expensive. Unfortunately, even after prostate cancer they’re not covered by insurance.

Why do you think that is?

Dr. Khera: Erectile dysfunction is not recognized as a true medical condition, which is unfortunate. It’s considered recreational, so the medications are not covered. This is really unfortunate.

Especially since so many men with erectile dysfunction also experience depression…

Dr. Khera: Absolutely.

Are there any newer treatments for erectile dysfunction on the horizon?

Dr. Khera: I think the way of the future will be stem cells for the treatment of erectile dysfunction. We are currently conducting these studies at Baylor. In this new therapy, we take abdominal fat and process the stem cells. We then inject these processed stem cells back into the penis. Thus far, there have been two stem cell studies on post-radical prostatectomy patients that had very promising results.

This is a cure. This is finally a potential cure for erectile dysfunction.

I am currently conducting an FDA- approved trial assessing stem cells to treat ED.

September 2016 Volume 2 No. 1 P7 John P. Mulhall, MD Erectile Dysfunction After Hormonal Therapy

Dr. John Mulhall is the Director of (They have a very big cancer center the Male Sexual and Reproductive and a big prostate cancer population Medicine Program at Memorial at Loyola.) I worked with Dr. Robert Sloan Kettering Cancer Center in Flanigan, a famous urologic oncologist, “Hormonal therapy is New York City and the author of while I was there. lethal to sexual function.” Saving Your Sex Life: A Guide for Men with Prostate Cancer. After Loyola, I came to New York to work at Memorial Sloan Kettering Prostatepedia spoke with him Cancer Center, where I have been for From a therapeutic standpoint, it is recently about erectile dysfunction the last 14 years. Here at Memorial very difficult to answer how common after prostate cancer. Sloan Kettering Cancer Center, we see erectile dysfunction is after prostate about six hundred new prostatectomy cancer. But essentially 100% of men How did you come to focus on erectile patients a year. We see about a hundred on hormone therapy have erectile dysfunction after prostate cancer? triple therapy patients a year—serving dysfunction. Nearly all will fail to have radiation and hormone therapy. an orgasm. Most are going to end up Dr. Mulhall: I’m from Ireland. I came with penile shortening. Nearly everyone to the United States to do my urology I’m a big believer in survivorship. will have no significant libido. residency. It isn’t good enough to just say, “Mr. Jones, we took your prostate out. There is about a 50% chance of Part of the way through my residency, You should be happy.” I’m interested a man being functional with or without I read an article in the New England in treating quality-of-life issues a pill two years after prostatectomy. Journal of Medicine about impotence, associated with a prostate cancer (Understand that there are many as it was called then, by a chap named diagnosis, as well as treating the factors that go into that, including Dr. Irwin Goldstein. He was in Boston. cancer. That is my motto. the patient’s age, baseline erectile I had some research time left during function, and marital status.) residency, so I went to Boston to do How common is erectile dysfunction research with Dr. Goldstein. after prostate cancer? Erectile function preservation rates are about the same three years after Before I left, and before I finished Dr. Mulhall: It is fairly common that some radiation treatment as after prostatectomy. my residency, I knew I wanted to men have a dip in erectile function do sexual medicine. At the end of with a diagnosis of prostate cancer. When patients come to see us my residency, I returned to Boston The diagnosis of any cancer is very before surgery or radiation, I tell them, to do a fellowship in sexual and stressful. Men get high levels of “I could do radiation or surgery. reproductive medicine. adrenaline. Adrenaline is an anti-erection Which would you like?” I add, chemical. Men start doing more poorly “Never base your decision on After that, I went to Loyola University in the bedroom. Erectile dysfunction erectile function, because unfortunately, in Chicago, Illinois, for six years. becomes a self-fulfilling prophecy. the erectile dysfunction rates are

P8 September 2016 Volume 2 No. 1 about the same three years after both, provided you had a good treatment at a center of excellence.”

These are broad figures, but again, other factors weigh in: a patient’s age, baseline erectile function, comorbidities, what kind of radiation or prostatectomy the patient had, and whether or not he also had hormone therapy. All of these factors weigh in. We have no programs to predict whether or not a man will have erectile dysfunction after treatment. So it is very difficult to give a blanket number.

Let’s talk about erectile dysfunction after hormonal therapy. Why is there such a high percentage of erectile dysfunction after hormonal therapy? Because the treatment removes testosterone?

Dr. Mulhall: Yes. You need testosterone for erectile tissue health. You don’t need a huge amount of testosterone for erectile tissue health, but you do need some. You may have heard of hypogonadism, which is the medical term for low testosterone. When you are agonadal, when you have no testosterone or you’ve castrated all the testosterone, your erectile tissue undergoes degeneration over time. It turns to collagen—a scar.

It is estimated that somewhere between four and six months of androgen deprivation therapy (ADT) leads to permanent structural damage to erectile tissue. You develop a condition called venous leak. (Venous leak was first studied in castrated rats. You castrate a rat and the erectile tissue turns to collagen. You can then analyze that collagen and study it as a model.)

When you don’t have testosterone, erectile muscle degenerates. When erectile muscle degenerates, you are nonfunctional.

September 2016 Volume 2 No. 1 P9 But you also need testosterone for drugs like Viagra to work. When you have no testosterone, drugs like Viagra or Cialis don’t work very well at all.

Is erectile dysfunction after hormonal therapy permanent?

Dr. Mulhall: That depends on how long you’ve been on hormonal therapy. If you’re on ADT for two to four months and you’ve had minimal erectile tissue damage, then the expectation is that you’ll get back to being at least as functional as you were before you went on hormone therapy. If you were on ADT for a year, it’s extremely likely that any erectile tissue damage is permanent.

When I speak at patient conferences, I tell the audience that when somebody says you need ADT, your first question should be: “What is the survival benefit?” A good oncologist should be able to tell you, “The survival benefit in someone like you is six months or six years.” You then have to decide if you want to pursue hormone therapy.

Medical oncologists get wrapped up in the whole concept of undetectable PSA. PSA is undetectable because you have no testosterone; you need testosterone to make PSA. To me, undetectable PSA is an artificial security. Of course, there is a percentage of men who become ADT-resistant. They’re on ADT, but their PSA starts to go up.

Hormonal therapy is lethal to sexual function. Over 90% of men on hormone therapy have no sex drive. The 10% of men with sex drive have what is called intellectual libido, but they really have no visual libido. (Visual libido is when you see something erotic and become aroused. Intellectual libido is: “I’ve been with my wife for thirty

P10 September 2016 Volume 2 No. 1 years. I love her. We used to have has a testosterone level of 300. a great sex life and we really should His testosterone level may be be making more love.) considered normal, but he has had a 400-point drop. He is going to be Most men need testosterone for their profoundly symptomatic. visual sex drive. Men on hormone therapy are in a state called sexual But there are no head-to-head studies neutrality. Sexual neutrality refers looking at one hormonal therapy to the concept: “I don’t think about treatment versus another. There sex, but I have it and it’s a positive would probably be no significant experience.” Very much like a post- difference between the various forms menopausal woman. of hormonal therapy, because all hormonal therapy is about lowering testosterone levels.

If Drug A and Drug B both reduce “Keep going back until a man’s testosterone to castrate all your questions are levels, then he is going to have problems with both. It doesn’t really answered.” matter whether he is on an agonist, antagonist, Zytiga (abiraterone), or Xtandi (enzalutamide). Are different kinds of hormonal therapy associated with higher or lower rates The question that is not very well of erectile dysfunction? answered is the impact of being on an antiandrogen like Casodex Dr. Mulhall: There is no head-to-head (bicalutamide). You would imagine data on that. We do have a current that if you were going to block the project looking at it, though, and are testosterone receptor that would about to get some data. be as bad for erectile function as being on Lupon (leuprorelin). But if you look at the literature, If the testosterone can’t function, it’s really bizarre. There are three then it doesn’t matter what your endpoints that are looked at. The first testosterone level is. But there is return to noncastrate level. That is is very little data on it. simply defined as when the man gets back to a testosterone level of over Why do you think that is? 50. This is clinically meaningless: if his testosterone level dips to four Dr. Mulhall: The focus is on what then returns to 50, he still has all can we do to prolong your life so you the symptoms of almost no testosterone.) can be around for your grandchildren. Most oncologists don’t have any The second endpoint is a return training in sexual health. In general, to normal. Normal testosterone oncologists give poor expectations is variably defined as high as 200, to patients. They don’t talk about the to 300. sexual and nonsexual side effects of hormone therapy. The final endpoint, which we practically never see in the literature, I’m the one who often has to talk to is return to baseline. The man who, patients about their glycemic control, before ADT, has a testosterone bone density, or cardiovascular risk. level of 700, but after treatment If an oncologist is going to talk about

September 2016 Volume 2 No. 1 P11 sexual function, invariably that discussion If a patient is going to talk to his is about sex drive. It’s not about erectile doctor before treatment, what kinds function. It’s not about ejaculation. of questions should he ask? It’s not about achieving orgasm. Dr. Mulhall: The first thing a patient Most oncologists look at the five-year should say is, “I want to declare to or disease-free survival rates. They’re you that my sexual health is critically not talking to you about quality of life. important to me. I have a loving wife. We’re sexual beings. Sex is a critically Why do you think most men aren’t important component of our relationship.” talking to their doctors about erectile Get that out on the table. Then ask, dysfunction after prostate cancer? “I want you to tell me how your Or is it that the doctors aren’t talking treatment is going to affect my to men about it? sexual function: my erection, my sex life, my orgasm, and my ejaculation.” Dr. Mulhall: I think it’s both. There is a famous cartoon in our Be proactive. If the doctor is being field: the patient is sitting on the table honest and reasonable, he or she will and the doctor is standing nearby. discuss it with you. If he or she won’t A thought bubble above the patient’s discuss it with you, find someone head reads: “I hope he brings it up.” who will. A thought bubble above the doctor’s head reads: “I hope he brings it up.” Fight for your sexual health, How can you make a doctor comfortable particularly after prostatectomy and talking about sexual function and radiation. In three years’ time, when sexual health when they get an your prostate cancer has been cured average of two hours of training and you’re left with no erections and in medical school on sexual health? a short or crooked penis, you’ll think you should have done some work What should patients do about this? beforehand to optimize your recovery. Proactivity is critically important. Dr. Mulhall: Patients need to be proactive. Patients think doctors will tell them If sexual health is important in your life everything they need to hear, and you’re discussing treatment with but doctors tell patients everything your surgeon, your radiation oncologist, doctors think patients need to hear. or your medical oncologist, you need to bring it up. If your doctor is smart, Go in with a series of questions. he or she will say, “This isn’t what If the doctor says, we’re running I do, but I send patients to a specialist out of time, then ask when you can named Dr. Jones. Why don’t you go talk make your next appointment to to him about that before you make talk. Keep going back until all your your decision about your treatment.” questions are answered.

That is what really needs to happen. Many patients spend more time We need direct-to-consumer choosing a plumber than a doctor. advertising. Why does Pfizer do so The cancer is diagnosed. The lights much direct-to-consumer advertising are flashing. Men think, “I’m going for PD-5 inhibitors? Because to die of cancer!” But the reality physicians aren’t asking questions. is that most people with Gleason 6 We need to empower patients or Gleason 7 cancers are not going to start the conversation. to die of prostate cancer.

P12 September 2016 Volume 2 No. 1 But there are very few people in this I just published a paper for which world who hear they’ve been diagnosed we asked men within two months with cancer and are not immediately of their prostatectomy about their afraid they’re going to die. recollection of what they were told before the procedure. Forty percent Dr. Mulhall: Absolutely. That is why said, “I never recall being told I’d we need to empower patients. never ejaculate again.” This is the most basic sexual consequence Almost every week, I have a man of a prostatectomy and yet 40% sitting in my office with tears in his of patients don’t remember being eyes saying, “If I had known it was told about it. going to be like this, I would never have done it. I would have not treated Now, maybe they were told and they my prostate cancer.” just were focusing on their cancer. Or maybe they weren’t told. But you First thing is to take a big deep need to be proactive. breath, then gather information. You have to have your eyes wide Are erectile dysfunction treatments open. Know what you’re getting into. covered by insurance?

If you go to a prostatectomist first, Dr. Mulhall: A third of men have you’ve got a 95% chance of getting decent coverage; a third have no a prostate surgery for your prostate. coverage; and a third have some If you go to a radiation oncologist coverage. The average number first, you’ve got an 85% chance of pills covered per month for insured of getting radiation. patients is about six. We also have a generic Viagra. We’ll have a generic That is why a sexual medicine Cialis next year. specialist should see every patient. There are plenty of us. We don’t have Didn’t you say that Cialis and a dog in the fight. We don’t care if you Viagra don’t really work for men do surgery. We don’t care if you do on hormonal therapy? radiation. We’re going to tell you how to get the best out of your surgery or Dr. Mulhall: Yes. If you’re on hormone radiation and remind you to ask your therapy and your testosterone level radiation oncologist why you need is zero, you’re not going to respond hormone therapy. well to Cialis or Viagra. You may end up having to do penile injections, If sexual health is an important part or something like that. of your life, particularly if intercourse is an important part of your life, then Any final advice for patients? talk about how you can maximize preservation of sexual function. Dr. Mulhall: If sex is important to you, declare that. Have a good discussion I suppose if you have a plan in with your doctor. If you think your place before treatment even starts, doctor can’t talk to you about it, you’re better able to deal with any find a sexual medicine doctor side effects. who will.

Dr. Mulhall: The most important thing is realistic expectations.

September 2016 Volume 2 No. 1 P13 Jean-Francois Eid, MD The Penile Implant After Prostate Cancer

Dr. Jean-Francois Eid, of New York procedures that needed fine, When a man has erectile dysfunction, City’s Advanced Urological Care, precise work, rather than extirpative he thinks about it all the time. It’s not is a urologist who specializes in procedures to remove a big tumor. something that affects him only in the treating advanced erectile dysfunction. I found extirpative procedures bedroom. After a while, it fatigues, to be less technically challenging. occupies, and depresses the brain. Prostatepedia spoke with him Every time he sees a love scene recently about penile prostheses My work continues to fascinate me. in a movie theater or he goes out to after prostate cancer. The patient evaluation requires thorough have drinks with friends or somebody history-taking and some psychological makes a joke or he sees an attractive How did you come to focus on erectile insight, which is something I enjoy person, he is reminded that he has dysfunction? doing. At the same time, you want erectile dysfunction. It depresses men tremendously. Dr. Eid: I became interested in erectile dysfunction as a medical student. The first thing a patient will say Back in the early 1980s, I heard after he gets a penile implant is, a urologist lecture about penile implants. “When a man has “I’m a new man. I feel so free. During my residency at NewYork- erectile dysfunction, You gave me a new life.” It’s sort Presbyterian Hospital, we had an of bizarre, because you would think ultrasound machine in the department he thinks about it all that somebody would say that if you of urology. Nobody was using it, the time.” saved them from cancer or from so another Urology Fellow and I started a heart attack and not from erectile using the machine to do blood flow dysfunction. studies on patients with erectile dysfunction. to make the patient feel comfortable; How does a penile prosthesis work? erectile dysfunction is a somewhat I became interested in using penile personal and delicate issue. There Dr. Eid: There are two types of penile injections to provide patients with is a little art and empathy involved implants. One type of penile implant, erections. I went from being interested in communicating with someone is always firm and is called a semi- in the diagnosis of erectile dysfunction suffering from erectile dysfunction. malleable implant. The other is to being interested in treating patients a saline-filled inflatable implant. with penile injections. Back in the I find it extremely gratifying to make 1980s, we didn’t have pills like Viagra somebody potent again without The inflatable implant was invented and Cialis. We didn’t really have any leaving any traces of the surgery. in 1973 and FDA-approved in 1975. options that worked. My goal is to conceal and hide It consists of two cylindrical plastic the implant so the patient feels tubes that are placed inside the shaft Throughout my training, I always completely normal. of the penis and are connected to preferred delicate reconstructive a pump that is concealed inside the

P14 September 2016 Volume 2 No. 1 scrotal sac. The pump is connected half inch either on the right or the How long does a penile implant last? to a small reservoir the size of a ping- left side of the lower abdomen. pong ball that stores the saline when The reservoir is then placed from Dr. Eid: Penile implants will last an erection is not needed. The saline above, underneath the abdominal anywhere from 15 to 20 years. fluid is transferred into the cylinders muscles, and the tubing is tunneled But when they break, they are by activating the pump when the into the scrotal sac to connect easily replaced. patient is interested in being sexually with the pump tubing. A separate active. It’s a hydraulic device that incision is unnecessary for patients Infection of the device is the most is manually activated. It mimics following radiation therapy and is only dreaded complication and occurs a physiological erection, while also needed for patients following robotic because of bacterial contamination allowing the penis to become flaccid prostatectomy. of the implant during the surgical when an erection isn’t needed. procedure. The rate of infection Are there any other considerations varies according to surgeon’s talent, There are two manufacturers, for prostate cancer patients? experience, and surgical volume. both in the state of Minnesota. This can be as high as 15% or as low Boston Scientific is in Minnetonka. Dr. Eid: The data on potency after as 2%. Our infection rate is 0.47% Coloplast is in Minneapolis. prostate cancer surgery varies based on 3,028 consecutive implants tremendously. If you look at the since January 2006. We update our In which patients is the inflatable European data published by independent data on a regular basis. pump used? third parties, post-surgery erections returned to normal in fewer than Specialists will have a much Dr. Eid: This is a great treatment for 10% of men. Another 20% responded lower infection rate. It’s important advanced ED that does not respond to pills like Viagra or Cialis. Seventy for patients to seek out the most to medications such as Viagra or Cialis. percent of men after robotic experienced doctor. Think of a penile In order to optimize the outcome, prostatectomy do not respond implant as one would a root canal we have every possible device size to oral medication. procedure. You want to see a root available in the operating room; canal specialist, rather than a general the penis is measured during the Patients need to know that if they dentist for it. procedure, and the correct cylinder wait for more than two years after size placed in order to maximize surgery and recovery of erections Seeing a specialist is very important, the size and quality of the erection. hasn’t occurred, then it’s appropriate because it minimizes the risk of It’s difficult to tell which implant is to consider a penile implant. infection, maximizes the size of the appropriate for which patient until penis, and optimizes the placement then. The choice of device brand Some patients do use penile self- of the pump and concealment of tubing depends on the patient’s anatomy, injections. There are two types of and incision. Specialists also make his age, his partner’s age, his manual penile injection medication. Caverject smaller incisions, which reduce areas dexterity, whether he has scar tissue, and Edex are FDA-approved and of skin numbness, preserving sensation his body habitus, etc. can be purchased in drug stores. and ability to achieve orgasm. These injections are safe for long- There are some special considerations term use. Do you advise patients to specifically for prostate cancer patients regarding ask about infection rates when reservoir placement (the little ping- There are other types of medications, evaluating doctors? pong-ball-like structure that stores such as Trimix (mixture of papaverine, the saline fluid). After robotic phentolamine, and prostaglandin Dr. Eid: Yes, but very few places prostatectomy, surgeons do not E1), which are not FDA approved actually track their infection rates and close the peritoneum, which is for penile self-injection but are most it’s often difficult to obtain this data. a layer of tissue that separates the often used by post-prostatectomy abdominal cavity from the pelvis. patients. Penile scarring, deformity, How should patients evaluate a specialist? and shortening will occur over the Therefore, in order to safely place long run. Trimix should only be used Dr. Eid: There are clues to look for. the reservoir, I perform a second for a couple of years while waiting to If you walk into a doctor’s office and separate incision about one to one- see if recovery of potency will occur. you don’t see any information on

September 2016 Volume 2 No. 1 P15 penile implants, then you can guess and he says yes, then, you know that that not a lot of implants are being he is not going to have a choice of performed by that practice. which implant to use. (If a representative from one company is there, the doctor If the doctor sees female patients is less likely to use an implant from as well as male and performs mostly another company, even if the other general urological procedures, then company’s implant fits you better.) this automatically indicates that the physician hasn’t done a lot of penile If you ask directly about infection implants. (There just isn’t enough rates, he may say, “My infection rate time in the day to do all these things.) is very low.” But looking for clues is a much cleverer way of finding If the doctor has assistants do some information about how many implants of the ED evaluation and some of a doctor actually does. the medical treatment of erectile dysfunction—a physician assistant does the penile injections—then you know that the doctor is not really involved and interested in treating erectile dysfunction. He will not have “Seek the most the opportunity to discuss penile experienced physician implants with many patients. you can find in order If you ask about penile implants to maximize chances and the doctor doesn’t volunteer of success.” a list of patients who already have had a penile implant placed by his practice that you can talk to, this also would indicate that not a lot of How much does an implant cost? implants are being performed there. Is it usually covered by insurance?

If the doctor doesn’t have models Dr. Eid: These devices have been of all the different types of implants around since 1973 and the procedure that you can look at and manipulate, is reimbursed by most commercial and if you ask for information on insurances including Medicare. penile implants and all you get is a pamphlet from the company More recently insurance plans have itself and nothing written by that increased their deductibles and some physician, then this also indicates will play games. They claim to cover that the procedure is not frequently the procedure, but won’t pay for performed in that practice. the implant device. This is a newer occurrence and is absurd. If you schedule the procedure and find that the staff doesn’t really If a patient is paying cash, the device know about insurance reimbursement, itself costs from $8,000 to $10,000. that’s also a clue that they’re not When you add the cost of the operating frequently scheduling the implant room, anesthesia, and the surgeon’s procedure. fee, it can add up to about $25,000, depending on the facility used. If you ask the doctor, “Do you like to have a representative from the It is recommended to have this company there during the procedure?” procedure performed in a clean

P16 September 2016 Volume 2 No. 1 outpatient ambulatory surgery center and to avoid a hospital stay. Ambulatory facilities charge less than hospitals. (The operating room and anesthesia fees are much cheaper.)

“Patient and partner satisfaction with penile implants is greater than 90%.”

I suppose if the device lasts 20 years, $25,000 isn’t a bad deal.

Dr. Eid: No, it’s not. There are a lot of other medical procedures that are much more expensive.

Is there anything else men should know about the penile implant or other options available to treat erectile dysfunction after prostate cancer?

Dr. Eid: One feels completely normal with a penile implant. Everything is preserved; nothing is removed from the patient to put in the penile implant. Also for many, the implant restores a fuller penile anatomy. The penis doesn’t retract when the implant is not in use, so the flaccid penis appears larger.

After prostatectomy, some patients will have difficulty with urination if the patient is overweight and the penis retracts. A penile implant will also help in this situation.

Patient and partner satisfaction with penile implants is greater than 90%, but as with any medical procedure, seek the most experienced physician you can find in order to maximize chances of success.

September 2016 Volume 2 No. 1 P17 Clinical Trial: Arthur Burnett, MD Erythropoietin + Erectile Function After Surgery

Dr. Arthur Burnett is the Director what they think they know without nerves and blood vessels surrounding of both the Basic Science Laboratory really being quite as dedicated and the nerve tissue undergo even with in Neuro-Urology and the Sexual knowledgeable as others. I cross both very delicate surgeries. Many patients Medicine Fellowship Program sides, which is not as common as people are really unhappy with that fact. at Johns Hopkins University in might think. They think, “I’ve had a supposedly Baltimore, Maryland. nerve-sparing operation. I’m back How long does it take a man to recover his to normal activities, but I’m hearing Prostatepedia spoke with him recently ability to have an erection after prostatectomy? it may take months for my erections about a trial he’s running that offers to come back?” men erythropoietin before surgery Dr. Burnett: Patients who undergo to improve the speed at which they prostate cancer surgeries, or any While we’ve improved on all other recover sexual function after surgery. intervention for localized prostate cancer, aspects of this surgery, I consider will endure some aspect of erectile erection recovery to be the last frontier What area of prostate cancer treatment dysfunction or urinary control problems, of recovery from prostate cancer surgery. do you specialize in? because the prostate is in a very While we strategize with medications precarious part of the body. Even though like Viagra, erection rehabilitation or Dr. Burnett: I specialize in cancers we do prostate cancer surgery better penile rehab, and things of that sort, in the pelvic area, as well as pelvic than we did 25 years ago with regard nothing has really come forward to help reconstructive surgeries as they relate to preserving nerves and blood vessel men recover erections better and faster. to the urogenital system. I have a unique tissue crucial for the functioning Sometimes it takes a year or two for perspective and have made some major of penile erection, men still don’t a man to recover his erections. There scientific contributions in the area of have the best immediate outcomes, really has been a major move afoot to sexual medicine. meaning it takes a long time to recover scientifically understand why erection the ability to have an erection despite recovery takes so long, and to think I combine a solid understanding improved surgical techniques. scientifically about what can be done of surgery for prostate cancer with about it. an understanding of the functional In general, though, patients do (sexual, urinary, etc.) aspects after recover from surgery better now. There is a lot of misinformation and prostate cancer. Some urologic surgeons We’re more proficient at the surgery misconception out there that taking just do prostate cancer surgeries and and so men get their continence back Viagra or Cialis every day is going then move on to the next patient. faster. Their fatigue lasts not a year, to rejuvenate the erection response There are also urologists involved in but a few weeks. Soon they’re back after prostate cancer surgeries, or even sexual medicine who offer treatments, to their normal daily activities. after radiation. The truth of the matter but don’t really understand what is that trial results on these medications nerve-sparing is all about or what They’re left wondering where their over the past 15 years have not is really going on with pelvic surgery. erections are. But lack of erections been impressive. They make suggestions based on has more to do with the shock the

P18 September 2016 Volume 2 No. 1 It’s nice that we have some interest and both patients and investigators trial is about. After the surgery and in newer surgical approaches like robotic know they’re on it, there is potential dosing, you go home like anybody else. prostatectomy, but there is nothing for bias. That is why the ultimate form We see how you recover within the inherent about robotic surgery that of a study is a randomized controlled next year or two with serial surveys guarantees you’ll get function back any trial done in a blinded fashion.) that we send to you. faster. There is still potential trauma to the surrounding nerves and blood We had a bit of a setback about two So patients don’t necessarily need vessels under any form of surgery. or three years ago when we started to live within a commutable distance Most likely you’ll have the best response the trial. There were some reports to Baltimore, do they? They could have with a master surgeon, whether the of thromboembolic events in people the surgery and then return home. surgeon is doing open or robotic chronically taking these medications procedures. But the reality is that at high doses. There were reports Dr. Burnett: Yes. Patients at a great these nerves will be traumatized of some complications because the distance away might be possible even in the best hands. We need dosing was possibly too high with participants. to continue to think about new ways long-term dosing. to help the nerve tissue recover. What kind of patients are you looking for? Treatment includes a few perioperative What is the thinking behind giving doses the day before, the day of, and Dr. Burnett: We want patients who erythropoietin to men before surgery? the day after surgery. We think we’re are preoperatively potent and have not using excessive dosing, but you opportunities for sexual activity after Dr. Burnett: Almost 10 years ago, can imagine regulatory agencies were surgery. Someone who is in poor health, we discovered that erythropoietin, concerned, based on other studies and but still eligible for prostate cancer a hormone made in the kidney that helps clinical observations, that our patients surgery; who does not have a partner make red blood cells, is a very potent might be predisposed to getting blood or who is not sexually active; or who hormone and growth factor. We’ve also clots. We were on hiatus for a good has poor erections before surgery discovered that erythropoietin has some year or two to get FDA approval after would not be someone we can enroll. amazing effects on tissue health, recovery, we revamped the trial with lower dosing. Rather, we’re looking for men between and regeneration. We’ve made some We have now restarted enrollment. 50 and 60 or younger, with no competing original contributions to that understanding medical illnesses, who are preoperatively in my laboratory: 10 years ago, I studied What can patients expect during the trial? potent, and have partners. erythropoietin in animal model studies that mimic nerve regeneration in men Dr. Burnett: This trial is only offered What about men who have had previous undergoing prostate cancer surgeries. at Johns Hopkins University in Baltimore, treatments like radiation therapy or Maryland. Patients need to consider focal therapy? We’re now bringing erythropoietin to having the surgeries done by myself, patients in this setting. Erythropoietin or one of my colleagues involved in Dr. Burnett: Then they’re excluded, is an FDA-approved drug that can be the trial. We do the erythropoietin because these other treatments prescribed. While it’s been used to help dosing preoperatively, around the time confound any assessment of what drive red blood cell count in those with of surgery. A patient can’t have the we’re doing. We’d like to try to protect anemia, we have asked if it could surgery elsewhere and then come from acute trauma to the nerve and be used in men undergoing prostate to me six months later and ask for blood vessel tissue. cancer surgeries to rejuvenate the tissue, erythropoietin. That is not what the nerves, and blood vessels in the What about existing cardiovascular disease? pelvic area inadvertently traumatized by this operation. How To Get Involved… Dr. Burnett: We’ll have to judge. In general, if somebody is healthy We have given erythropoietin to some If you’re interested in enough to go through the surgery, patients and just followed them. participating or would like more is otherwise preoperatively potent, Many seem to do better and that has information, contact Dr. Arthur has a partner, and has an early enough prompted us to go back and do a Burnett at [email protected] stage disease that we’re not removing formalized controlled blinded study. or 410-614-3986. any nerve tissue, they could possibly (Any time you give someone a medication, be a candidate.

September 2016 Volume 2 No. 1 P19 Paul Nelson: Online Erectile Dysfunction Support

FrankTalk.org, an online discussion terms.” One day at work she texted from other patients—how to do group for men with erectile me: “My God! You’re right. There is a penile injection or how to use dysfunction, is the brainchild of nothing online.” a penis pump—but the heart and prostate cancer patient Paul Nelson. soul of the site is men discussing There were prostate cancer discussion the frustrations, triumphs, and Prostatepedia spoke with Paul about boards, but they weren’t focused disappointments of dealing with his journey and the thinking behind on erectile dysfunction. They are sexual dysfunction. FrankTalk. for men fighting prostate cancer! I thought that surely there must Do you include only men with erectile Why did you start FrankTalk? be a patient organization for dysfunction after prostate cancer? men with erectile dysfunction. Mr. Nelson: I was diagnosed with Wrong again. Mr. Nelson: We now have men with prostate cancer the day before my erectile dysfunction who do not father died of the same disease. have prostate cancer, as well, I was 46. I had surgery very quickly, but we started off with only prostate because that’s what everyone said cancer patients. I had to do given that I was so young. In retrospect, I’m glad it’s out and “America is uncomfortable When I started the site, I was a patient that it’s over. at Mount Sinai Hospital. Dr. Natan with sex. ” Bar-Chama was the urologist in That was eight years ago. I discovered charge of erectile dysfunction there is a lot of online support for cancer following surgery. When he found patients. After I had the surgery, out what we were doing, he said, I assumed there would be online After I complained about it for several “This is much bigger than prostate support for the sexual side effects months, my wife told me to shut cancer. There are millions of men out of cancer. I went online and searched up and start my own online group. there with erectile dysfunction who and searched. I just kept coming Here we are eight years later. have no resources.” And so we opened up with one commercial after up to those without prostate cancer. another, or one scam after another. FrankTalk is a patient support site. Even the medical information sites We are an online community of men We still have a huge number of all said the same thing. It was talking about our experiences with prostate cancer patients on the site, very vague. erectile dysfunction. We talk about but by no means is it a prostate what erectile dysfunction does to cancer/erectile dysfunction-only site I was frustrated and said to my wife, your view of yourself as a sexual anymore. That’s just where it started. “There’s nothing online about erectile person and how you cope sexually dysfunction!” She’s a librarian. She said, and emotionally. It is not a medical That was actually a big discussion “You’re just searching for the wrong site. You can get medical information on the site for a long time: it doesn’t

P20 September 2016 Volume 2 No. 1 What are some of the psychological problems associated with erectile dysfunction?

“We have doctors who Mr. Nelson: Depression is first and foremost. shouldn’t be expected to be sexual medicine When men can’t have intercourse, experts forced into or the trial and the pain of going through injections or pills is too playing that role.” much, they tend to withdraw. They avoid sex. Men stop having sex. Their wives mostly just want intimacy. But because men are hardwired matter what your erectile dysfunction in our culture to just want intercourse, comes from, you still need help. they just stop having sex. They stop No matter what the cause, the pain touching their wives completely, of having it is still the same. because it makes them feel like a failure or broken or dysfunctional. Do you think men with erectile It’s easier to just avoid it completely. dysfunction are reluctant to seek help?

Mr. Nelson: America is uncomfortable with sex. The world is uncomfortable with sex. Men in our culture believe their male identity is firmly rooted “It destroys marriages in the penis. It’s tragic. far more frequently than anyone talks about.” Unfortunately, most physicians are uncomfortable as well. They get zero training in sexual medicine in medical school. People don’t realize that urologists are surgeons first and Meanwhile, their partners are thinking, foremost. They’re trained to cut; they “What happened? He doesn’t he do not get classes in human sexuality love me anymore. I’m not attractive. in medical school. They don’t take I’m too old.” classes on erectile dysfunction. It really puts them in an awkward Women will often say, “It doesn’t spot to have men ask for help with matter that you can’t have an erection.” erectile dysfunction. We have doctors But yes, it does matter to men. The man who shouldn’t be expected to be feels stupid that it bothers him. sexual medicine experts forced into It’s really a complex problem. playing that role. Part of the problem is that couples don’t It’s a double whammy. We’ve got know how to talk about it. They don’t a culture of men for whom it’s have the tools to talk about it. They scary to talk about sex and about don’t have the vocabulary. It destroys sexual failure or sexual difficulties. marriages far more frequently than They’re then presenting themselves anyone talks about. It’s tragic. to doctors who really don’t have much training in sexual medicine. That’s why support groups like It’s a complicated problem. ours are important. It’s worth seeking help.

September 2016 Volume 2 No. 1 P21 Kathie Houchens: Wives Talk About Erectile Dysfunction

Kathie Houchens’s husband, Dave, We had been married almost four For many years, Viagra was fine. was diagnosed with prostate cancer decades then, so we knew that we Yes, it had side effects that could in 2001. She now leads a support could maintain our close relationship, be bothersome. I sometimes felt group for the wives, partners, even if it meant making adjustments. guilty if he viewed the world through and caregivers of prostate cancer Physical touch contributes to a feeling a blue haze or suffered a stuffy head patients in Columbus, Ohio. of unity and acceptance. It is more that made sleeping difficult. But he than just body awareness. It is also was willing to make that sacrifice Prostatepedia spoke with Kathie a spiritual and emotional bond. to have the physical relationship recently about how to cope when we wanted. your partner has erectile dysfunction. Dave is a scientist and cancer researcher. He has spent a career The Viagra pills kept getting more What was your husband’s struggle with looking for and finding answers. and more expensive, though. At one erectile dysfunction after treatment like? Prostate cancer became his new point, it was about $35 a pill—and focus as he looked into options it wasn’t covered by our insurance. Ms. Houchens: My husband’s initial for additional help with sexual function. It’s rare for most people to find it treatment was surgery. For that first In 2001 few, if any, cancer centers covered by insurance. We gave Cialis year of recovery, I was afraid I would offered programs in penile rehabilitation. a try, too. For a while it seemed to be hurt him if we were too active too If your doctor or clinic offers it, an improvement. Another advantage soon. It was difficult to know what take advantage of it. It can make was that taking it near mealtime was to do, but we were able to trust that a difference. We did not have that not a problem, as it was with Viagra. we could rediscover ways to stay option, so our first step was to ask The price, however, was about the connected physically in spite of this for a Viagra prescription. same as Viagra. new normal.

P22 September 2016 Volume 2 No. 1 Our treatment journey also included signals adrenalin to be pumped into to have this discussion with patients two separate year-long courses of your bloodstream and that will short- and their partners. Lupron hormone ablation, as well circuit an erection. Dr. John Mulhall’s as salvage radiation, in 2009. It all book, Saving Your Sex Life, has been Initially, Dave went to his urologist on takes its toll on sexual function. the most informative source we have his own. The books he brought home found to understand the mysterious from the post-biopsy appointment In the last year, we have been using world of erectile dysfunction. laid out all the treatment choices. penile injections: Trimix, prepared It was overwhelming to me, but at a compounding pharmacy. Penile Do you have any advice for women I trusted his choice since he is injections are efficient. There are no concerned about erectile dysfunction a scientist with a career in researching side effects. It’s affordable. For us, after prostate cancer? cancer treatment. He decided what for right now, it’s the best of all worlds. he wanted to do and scheduled Ms. Houchens: Every couple has surgery for the next month. Women It may not be the right choice for a different idea of where they want don’t usually go to their husband’s everybody. There are inconveniences to be on the other side of treating dental or eye appointments, so it may involved, because it has to be prostate cancer. But, almost universally, feel strange to think you would go refrigerated. We’ve just been on women start out by saying, “Save my to a urology appointment with him. a two-week trip. It would have been husband’s life; sex isn’t the most I recommend it, though. Two pairs a challenge to carry the preparation important thing.” As I learned early of ears hearing what the doctor is along and keep it cold during air on, that is the least helpful thing saying and two questioning minds travel, in B&Bs, or even when visiting you can say to your husband. To say, wanting to get answers will benefit family. But two weeks is two weeks. “It will be okay if we can’t have sex you both in the long run. Prostate A longer trip would have been more anymore” is like saying, “It wasn’t cancer is a couples’ disease. difficult, but there are many other ways ever any good anyway so I won’t Women need to be a part of every to keep the intimacy of a relationship alive. miss it.” Even if your intention is to conversation regarding treatment help take the pressure off and allow and recovery. We are all aging, with or without that penile performance loss may be prostate cancer. Our bodies decline the toll you pay for his staying alive. Maybe you both heard the doctor and diminish in spite of all we do to say that most of his patients have eat right, exercise, and keep mentally In our support group, we help each erections back by the end of the first fit. We would like to think we could other learn to say, “Yes, we’ve got year. Maybe they say six months. stop the aging process, and there are some challenges ahead, but keeping Whatever it is, you don’t think to ask marketing geniuses that would like to our intimate life nourished and creative how that is measured. We want to convince you it is possible, but there is prime to our relationship. I’m willing think positive thoughts, so naturally comes a point when couples find to do what I need to do to help you we say to ourselves, to each other, that intimacy issues for men and get back to where we want to be.” “Yes! We can do this. We will be for women call for some extra help. normal again, soon.” We want to Unfortunately, many couples report believe that all will be well. We are There is some psychology involved. that their urologist or surgeon never stressed out at this point and grab Sometimes it is helpful to get warned them about erectile dysfunction. at any hope. Unfortunately, we don’t counseling to help to stay on track, Or if they were told, it was in gentle think to ask (how could we know?) or at least jump-start what may seem terms—hopeful, and promising good by what standard do you measure like low battery power. The brain outcomes. Doctors don’t want men an erection for your statistics? It may is actually the most important sex to not choose treatment out of fear not be an erection good enough for organ. When we talk about treatment of losing sexual function, even penetration. There are levels of success. for erectile dysfunction, we’re not just for a short term. They may mention Be inquisitive. Keep open to reality. talking about reprogramming the penis, erectile dysfunction, but in a positive but also about reprogramming thought way that emphasizes a high percentage The crisis kicks in when, post- processes. Being able to relax, to feel of return to pretreatment function. treatment, things are not working cherished, to be free to play together In younger men, that is more likely, out as “promised” or as we imagined in a mindset of happy possibility can but there will be some adjustment they would. I think Dave and I were produce miracles. An anxious mind in most men. Radiologists, too, need realistic in our expectations, so erectile

September 2016 Volume 2 No. 1 P23 dysfunction did not come as a surprise. However, in support groups we have facilitated, it is a big topic of concern that there is so much to figure out about erectile dysfunction. It can be a challenging learning curve.

For us, the now 15-year process of adapting to life with cancer recovery and, currently a durable remission of the disease, has been an opportunity to explore feelings that in earlier years got lost in our busy lives. (We raised three children and were involved in our careers.) When cancer enters your life, something shifts. We were awakened to the importance of honest communication and deep sharing of hopes, dreams, needs, and values. The cancer journey and all that came with it has brought us even closer together.

Where do you suggest women find information and support for themselves and their partners?

Ms. Houchens: I would start by asking your doctor, but don’t stop there: look to other sources. If you don’t want to go to a doctor’s office, get online help. Be careful, though, as there are both good and not-so- good websites. A trusted local doctor or support group facilitator could point you to some reliable ones.

Knowledge is power. Stay informed. New therapies are coming along all the time, so find out where and when there are conferences you can attend to learn about the latest innovations. Read articles and books that relate to your needs.

You are your own best advocate. If you hear of a speaker somewhere, make the effort to go, even if it means a two-hour drive. If it means a weekend in New York to hear a lecture, then make it a holiday. Go to a support group. If you’re in a support group, you may find people whose shared

P24 September 2016 Volume 2 No. 1 experiences will inform your decision- making. Start your own women’s support group if you need to. I think women do better when they have somebody they can talk to, when they can open their hearts and be heard and understood and not judged.

It is important to be reminded that you are not alone. Women are strong, and as I have seen them experience a support group for the first time, sometimes they just cry. Their tears are a mix of relief (somebody really understands me); of sadness (I have been holding all this inside because I didn’t want to upset my husband, partner, or children, etc.); and exhaustion (I can lay my burden down with this group. I am not alone anymore.) From that point comes new energy to face whatever comes next.

I remember my very first support group meeting. The group shared experiences and stories as we went around the small circle of women. One lady was in tears because her husband was dealing with both erectile dysfunction and incontinence. The urine leakage seemed to be a huge hindrance to their intimacy. The others present were able to hold the space for her to fully express her anguish over the situation. While problem-solving is not the work of a support group, helping each person go into their own deep knowing of what might improve a situation is.

Others, who shared their own experiences, opened a discussion that informed us all. In the end it helped us know that we can keep our feet on the ground, be open to whatever our situation is, and, with a sense of humor and hope, be present to our partner’s needs to build a future together that brings pleasure to us both.

September 2016 Volume 2 No. 1 P25 XTANDI takes on advanced prostate cancer while you take on what matters to you.

Who is XTANDI for? XTANDI is a prescription medicine used to treat men with prostate cancer that no longer prescribed dose at your regular time the next day. Do not take XTANDI may cause infections, falls and injuries from falls. Tell your responds to a medical or surgical treatment that lowers testosterone and that has spread to other parts of the body. more than your prescribed dose of XTANDI in one day. healthcare provider if you have signs or symptoms of an infection • If you take too much XTANDI, call your healthcare provider or go or if you fall. partner may become pregnant, a condom and another form of birth to the nearest emergency room right away. You may have an Tell your healthcare provider if you have any side effect that bothers control must be used during and for 3 months after treatment. increased risk of seizure if you take too much XTANDI. you or that does not go away. These are not all the possible side effects of XTANDI. For more information, ask your healthcare provider FIND OUT HOW YOU CAN Talk with your healthcare provider if you have questions about birth What are the possible side effects of XTANDI? control. See “Who should not take XTANDI?” or pharmacist. FIGHT BACK. XTANDI may cause serious side effects including: • Take any other medicines, including prescription and You are encouraged to report negative side effects of prescription • Seizure. If you take XTANDI you may be at risk of having a seizure. over-the-counter medicines, vitamins, and herbal supplements. drugs to the FDA. Visit www.fda.gov/medwatch, or call Talk to your doctor and visit You should avoid activities where a sudden loss of consciousness XTANDI may affect the way other medicines work, and other 1-800-FDA-1088. XTANDI.com/info medicines may affect how XTANDI works. You should not start could cause serious harm to yourself or others. Tell your healthcare Please see the Brief Summary on the following page and the or stop any medicine before you talk with the healthcare provider provider right away if you have loss of consciousness or seizure. Full Prescribing Information on XTANDI.com. that prescribed XTANDI. Your healthcare provider will stop XTANDI if you have a seizure during treatment. Important Safety Information How should I take XTANDI? • Posterior Reversible Encephalopathy Syndrome (PRES). • XTANDI is four 40 mg capsules taken once daily. If you take XTANDI you may be at risk of developing a condition Who should not take XTANDI? • Take XTANDI exactly as your healthcare provider tells you. involving the brain called PRES. Tell your healthcare provider right QUESTIONS Call 1-855-8XTANDI XTANDI is not for use in women. Do not take XTANDI if you are • Take your prescribed dose of XTANDI one time a day, at the same away if you have a seizure or quickly worsening symptoms such pregnant or may become pregnant. XTANDI can harm your unborn time each day. as headache, decreased alertness, confusion, reduced eyesight, ABOUT XTANDI? (1-855-898-2634) baby. It is not known if XTANDI is safe and effective in children. blurred vision or other visual problems. Your healthcare provider • Your healthcare provider may change your dose if needed. Before you take XTANDI, tell your healthcare provider will do a test to check for PRES. Your healthcare provider will stop • Do not change or stop taking your prescribed dose of XTANDI XTANDI if you develop PRES. if you: without talking with your healthcare provider first. The most common side effects of XTANDI include weakness or feeling • Have a history of seizures, brain injury, stroke or brain tumors. • XTANDI can be taken with or without food. more tired than usual, back pain, decreased appetite, constipation, joint • Have any other medical conditions. • Swallow XTANDI capsules whole. Do not chew, dissolve, or open pain, diarrhea, hot flashes, upper respiratory tract infection, swelling in • Have a partner who is pregnant or may become pregnant. Men who the capsules. your hands, arms, legs, or feet, shortness of breath, muscle and bone are sexually active with a pregnant woman must use a condom • If you miss a dose of XTANDI, take your prescribed dose as soon pain, weight loss, headache, high blood pressure, dizziness, and a P26 September 2016 Volume 2 No. 1 XTANDI, Astellas, and the flying star logo are trademarks of Astellas Pharma Inc. during and for 3 months after treatment with XTANDI. If your sexual as you remember that day. If you miss your daily dose, take your feeling that you or things around you are moving or spinning (vertigo). © 2015 Astellas Pharma US, Inc. 076-1030-PM 8/15

XTND15CDMI3296_E_Prostatepedia_Print_Ad_Resize_r8_FSU.indd All Pages 8/17/15 5:26 PM XTANDI takes on advanced prostate cancer while you take on what matters to you.

Who is XTANDI for? XTANDI is a prescription medicine used to treat men with prostate cancer that no longer prescribed dose at your regular time the next day. Do not take XTANDI may cause infections, falls and injuries from falls. Tell your responds to a medical or surgical treatment that lowers testosterone and that has spread to other parts of the body. more than your prescribed dose of XTANDI in one day. healthcare provider if you have signs or symptoms of an infection • If you take too much XTANDI, call your healthcare provider or go or if you fall. partner may become pregnant, a condom and another form of birth to the nearest emergency room right away. You may have an Tell your healthcare provider if you have any side effect that bothers control must be used during and for 3 months after treatment. increased risk of seizure if you take too much XTANDI. you or that does not go away. These are not all the possible side effects of XTANDI. For more information, ask your healthcare provider FIND OUT HOW YOU CAN Talk with your healthcare provider if you have questions about birth What are the possible side effects of XTANDI? control. See “Who should not take XTANDI?” or pharmacist. FIGHT BACK. XTANDI may cause serious side effects including: • Take any other medicines, including prescription and You are encouraged to report negative side effects of prescription • Seizure. If you take XTANDI you may be at risk of having a seizure. over-the-counter medicines, vitamins, and herbal supplements. drugs to the FDA. Visit www.fda.gov/medwatch, or call Talk to your doctor and visit You should avoid activities where a sudden loss of consciousness XTANDI may affect the way other medicines work, and other 1-800-FDA-1088. XTANDI.com/info medicines may affect how XTANDI works. You should not start could cause serious harm to yourself or others. Tell your healthcare Please see the Brief Summary on the following page and the or stop any medicine before you talk with the healthcare provider provider right away if you have loss of consciousness or seizure. Full Prescribing Information on XTANDI.com. that prescribed XTANDI. Your healthcare provider will stop XTANDI if you have a seizure during treatment. Important Safety Information How should I take XTANDI? • Posterior Reversible Encephalopathy Syndrome (PRES). • XTANDI is four 40 mg capsules taken once daily. If you take XTANDI you may be at risk of developing a condition Who should not take XTANDI? • Take XTANDI exactly as your healthcare provider tells you. involving the brain called PRES. Tell your healthcare provider right QUESTIONS Call 1-855-8XTANDI XTANDI is not for use in women. Do not take XTANDI if you are • Take your prescribed dose of XTANDI one time a day, at the same away if you have a seizure or quickly worsening symptoms such pregnant or may become pregnant. XTANDI can harm your unborn time each day. as headache, decreased alertness, confusion, reduced eyesight, ABOUT XTANDI? (1-855-898-2634) baby. It is not known if XTANDI is safe and effective in children. blurred vision or other visual problems. Your healthcare provider • Your healthcare provider may change your dose if needed. Before you take XTANDI, tell your healthcare provider will do a test to check for PRES. Your healthcare provider will stop • Do not change or stop taking your prescribed dose of XTANDI XTANDI if you develop PRES. if you: without talking with your healthcare provider first. The most common side effects of XTANDI include weakness or feeling • Have a history of seizures, brain injury, stroke or brain tumors. • XTANDI can be taken with or without food. more tired than usual, back pain, decreased appetite, constipation, joint • Have any other medical conditions. • Swallow XTANDI capsules whole. Do not chew, dissolve, or open pain, diarrhea, hot flashes, upper respiratory tract infection, swelling in • Have a partner who is pregnant or may become pregnant. Men who the capsules. your hands, arms, legs, or feet, shortness of breath, muscle and bone are sexually active with a pregnant woman must use a condom • If you miss a dose of XTANDI, take your prescribed dose as soon pain, weight loss, headache, high blood pressure, dizziness, and a XTANDI, Astellas, and the flying starSeptember logo are trademarks 2016 Volume of Astellas 2 No. Pharma 1 P 27Inc. during and for 3 months after treatment with XTANDI. If your sexual as you remember that day. If you miss your daily dose, take your feeling that you or things around you are moving or spinning (vertigo). © 2015 Astellas Pharma US, Inc. 076-1030-PM 8/15

XTND15CDMI3296_E_Prostatepedia_Print_Ad_Resize_r8_FSU.indd All Pages 8/17/15 5:26 PM others. Tell your healthcare provider right away if you have loss of consciousness or seizure. Your healthcare provider will stop XTANDI if you have a seizure during treatment. • Posterior Reversible Encephalopathy Syndrome (PRES). If you take XTANDI you may be at risk of developing a condition involving the brain called PRES. Tell your healthcare provider right away if you have a seizure or quickly worsening symptoms such as headache, decreased alertness, confusion, reduced eyesight, PATIENT INFORMATION blurred vision or other visual problems. Your healthcare XTANDI® (ex TAN dee) provider will do a test to check for PRES. Your healthcare (enzalutamide) provider will stop XTANDI if you develop PRES. capsules The most common side effects of XTANDI include: • weakness or feeling more • swelling in your hands, What is XTANDI? tired than usual arms, legs, or feet XTANDI is a prescription medicine used to treat men with • back pain • shortness of breath prostate cancer that no longer responds to a medical or • decreased appetite • muscle and bone pain surgical treatment that lowers testosterone and that has • constipation • weight loss spread to other parts of the body. • joint pain • headache It is not known if XTANDI is safe and effective in children. • diarrhea • high blood pressure • hot flashes • dizziness Who should not take XTANDI? • upper respiratory tract • a feeling that you or things XTANDI is not for use in women. infection around you are moving or Do not take XTANDI if you are pregnant or may become spinning (vertigo) pregnant. XTANDI can harm your unborn baby. XTANDI may cause infections, falls and injuries from falls. What should I tell my healthcare provider before taking XTANDI? Tell your healthcare provider if you have signs or symptoms Before you take XTANDI, tell your healthcare provider if you: of an infection or if you fall. • have a history of seizures, brain injury, stroke, or brain tumors Tell your healthcare provider if you have any side effect that • have any other medical conditions bothers you or that does not go away. • have a partner who is pregnant or may become pregnant. These are not all the possible side effects of XTANDI. For more Men who are sexually active with a pregnant woman must information, ask your healthcare provider or pharmacist. use a condom during and for 3 months after treatment Call your doctor for medical advice about side effects. You with XTANDI. If your sexual partner may become pregnant, may report side effects to FDA at 1-800-FDA-1088. a condom and another form of effective birth control must How should I store XTANDI? be used during and for 3 months after treatment. Talk with your healthcare provider if you have questions about birth • Store XTANDI between 68°F to 77°F (20°C to 25°C). control. See “Who should not take XTANDI?” • Keep XTANDI capsules dry and in a tightly closed container. Tell your healthcare provider about all the medicines you Keep XTANDI and all medicines out of the reach of children. take, including prescription and over-the-counter medicines, General information about XTANDI. vitamins, and herbal supplements. XTANDI may affect the Medicines are sometimes prescribed for purposes other way other medicines work, and other medicines may affect than those listed in a Patient Information leaflet. Do not use how XTANDI works. XTANDI for a condition for which it was not prescribed. Do You should not start or stop any medicine before you talk not give XTANDI to other people, even if they have the same with the healthcare provider that prescribed XTANDI. symptoms that you have. It may harm them. Know the medicines you take. Keep a list of them with you to This Patient Information leaflet summarizes the most show your healthcare provider and pharmacist when you get important information about XTANDI. If you would like more a new medicine. information, talk with your healthcare provider. You can ask How should I take XTANDI? your healthcare provider or pharmacist for information about XTANDI that is written for health professionals. • Take XTANDI exactly as your healthcare provider tells you. • Take your prescribed dose of XTANDI one time a day, at For more information go to www.Xtandi.com or the same time each day. call 1-800-727-7003. • Your healthcare provider may change your dose if needed. What are the ingredients in XTANDI? • Do not change or stop taking your prescribed dose of Active ingredient: enzalutamide XTANDI without talking with your healthcare provider first. Inactive ingredients: caprylocaproyl polyoxylglycerides, • XTANDI can be taken with or without food. butylated hydroxyanisole, butylated hydroxytoluene, gelatin, • Swallow XTANDI capsules whole. Do not chew, dissolve, sorbitol sorbitan solution, glycerin, purified water, titanium or open the capsules. dioxide, black iron oxide • If you miss a dose of XTANDI, take your prescribed dose as soon as you remember that day. If you miss your daily Manufactured by: dose, take your prescribed dose at your regular time the Catalent Pharma Solutions, LLC, St. Petersburg, FL 33716 next day. Do not take more than your prescribed dose of Marketed by: XTANDI in one day. Astellas Pharma US, Inc., Northbrook, IL 60062 • If you take too much XTANDI, call your healthcare provider or Medivation Inc., San Francisco, CA 94105 go to the nearest emergency room right away. You may have 14L082-XTA-BRFS an increased risk of seizure if you take too much XTANDI. © 2015 Astellas Pharma US, Inc. What are the possible side effects of XTANDI? XTANDI® is a registered trademark of Astellas Pharma Inc. XTANDI may cause serious side effects including: 076-1121-PM • Seizure. If you take XTANDI you may be at risk of having a This Patient Information has been approved by the U.S. Food seizure. You should avoid activities where a sudden loss and Drug Administration. of consciousness could cause serious harm to yourself or Revised: August 2015 P28 September 2016 Volume 2 No. 1

XTND15CDMI3296_E_Prostatepedia_Print_Ad_Resize_BS_r8_FSU.indd 1 8/17/15 5:27 PM others. Tell your healthcare provider right away if you have loss of consciousness or seizure. Your healthcare provider will stop XTANDI if you have a seizure during treatment. • Posterior Reversible Encephalopathy Syndrome (PRES). If you take XTANDI you may be at risk of developing a condition involving the brain called PRES. Tell your healthcare provider right away if you have a seizure or quickly worsening symptoms such as headache, decreased alertness, confusion, reduced eyesight, PATIENT INFORMATION blurred vision or other visual problems. Your healthcare XTANDI® (ex TAN dee) provider will do a test to check for PRES. Your healthcare (enzalutamide) provider will stop XTANDI if you develop PRES. capsules The most common side effects of XTANDI include: • weakness or feeling more • swelling in your hands, What is XTANDI? tired than usual arms, legs, or feet XTANDI is a prescription medicine used to treat men with • back pain • shortness of breath prostate cancer that no longer responds to a medical or • decreased appetite • muscle and bone pain surgical treatment that lowers testosterone and that has • constipation • weight loss spread to other parts of the body. • joint pain • headache It is not known if XTANDI is safe and effective in children. • diarrhea • high blood pressure • hot flashes • dizziness Who should not take XTANDI? • upper respiratory tract • a feeling that you or things XTANDI is not for use in women. infection around you are moving or Do not take XTANDI if you are pregnant or may become spinning (vertigo) pregnant. XTANDI can harm your unborn baby. XTANDI may cause infections, falls and injuries from falls. What should I tell my healthcare provider before taking XTANDI? Tell your healthcare provider if you have signs or symptoms Before you take XTANDI, tell your healthcare provider if you: of an infection or if you fall. • have a history of seizures, brain injury, stroke, or brain tumors Tell your healthcare provider if you have any side effect that • have any other medical conditions bothers you or that does not go away. • have a partner who is pregnant or may become pregnant. These are not all the possible side effects of XTANDI. For more Men who are sexually active with a pregnant woman must information, ask your healthcare provider or pharmacist. use a condom during and for 3 months after treatment Call your doctor for medical advice about side effects. You with XTANDI. If your sexual partner may become pregnant, may report side effects to FDA at 1-800-FDA-1088. a condom and another form of effective birth control must How should I store XTANDI? be used during and for 3 months after treatment. Talk with your healthcare provider if you have questions about birth • Store XTANDI between 68°F to 77°F (20°C to 25°C). control. See “Who should not take XTANDI?” • Keep XTANDI capsules dry and in a tightly closed container. Tell your healthcare provider about all the medicines you Keep XTANDI and all medicines out of the reach of children. take, including prescription and over-the-counter medicines, General information about XTANDI. vitamins, and herbal supplements. XTANDI may affect the Medicines are sometimes prescribed for purposes other way other medicines work, and other medicines may affect than those listed in a Patient Information leaflet. Do not use how XTANDI works. XTANDI for a condition for which it was not prescribed. Do You should not start or stop any medicine before you talk not give XTANDI to other people, even if they have the same REGISTER NOW! www.zeroprostatecancerrun.org with the healthcare provider that prescribed XTANDI. symptoms that you have. It may harm them. Know the medicines you take. Keep a list of them with you to This Patient Information leaflet summarizes the most show your healthcare provider and pharmacist when you get important information about XTANDI. If you would like more a new medicine. information, talk with your healthcare provider. You can ask How should I take XTANDI? your healthcare provider or pharmacist for information about XTANDI that is written for health professionals. • Take XTANDI exactly as your healthcare provider tells you. For more information go to www.Xtandi.com or • Take your prescribed dose of XTANDI one time a day, at Register using the the same time each day. call 1-800-727-7003. code PCAS for 20% • Your healthcare provider may change your dose if needed. What are the ingredients in XTANDI? off all online regis- • Do not change or stop taking your prescribed dose of Active ingredient: enzalutamide tration fees, except XTANDI without talking with your healthcare provider first. Inactive ingredients: caprylocaproyl polyoxylglycerides, Snooze for Dudes. • XTANDI can be taken with or without food. butylated hydroxyanisole, butylated hydroxytoluene, gelatin, • Swallow XTANDI capsules whole. Do not chew, dissolve, sorbitol sorbitan solution, glycerin, purified water, titanium 94 or open the capsules. dioxide, black iron oxide • If you miss a dose of XTANDI, take your prescribed dose as soon as you remember that day. If you miss your daily Manufactured by: dose, take your prescribed dose at your regular time the Catalent Pharma Solutions, LLC, St. Petersburg, FL 33716 next day. Do not take more than your prescribed dose of Marketed by: XTANDI in one day. Astellas Pharma US, Inc., Northbrook, IL 60062 • If you take too much XTANDI, call your healthcare provider or Medivation Inc., San Francisco, CA 94105 go to the nearest emergency room right away. You may have 14L082-XTA-BRFS an increased risk of seizure if you take too much XTANDI. © 2015 Astellas Pharma US, Inc. What are the possible side effects of XTANDI? XTANDI® is a registered trademark of Astellas Pharma Inc. XTANDI may cause serious side effects including: 076-1121-PM NATIONAL SPONSORS • Seizure. If you take XTANDI you may be at risk of having a This Patient Information has been approved by the U.S. Food seizure. You should avoid activities where a sudden loss and Drug Administration. of consciousness could cause serious harm to yourself or Revised: August 2015 September 2016 Volume 2 No. 1 P29

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ADVANCED PROSTATE CANCER IF YOU THINK YOUR TREATMENT OPTIONS ARE LIMITED, THINK AGAIN.

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WHAT IS ZYTIGA® (abiraterone acetate)? If you are taking ZYTIGA®: Tell your healthcare provider if you get any of the following symptoms: Low red blood cells (anemia) and low blood potassium levels ZYTIGA® is a prescription medicine that is used along with prednisone. Take ZYTIGA® and prednisone exactly as your healthcare provider Dizziness Fast heartbeats High blood sugar levels, high blood cholesterol and triglycerides ZYTIGA® is used to treat men with castration-resistant prostate cancer tells you. Feel faint or lightheaded Headache Certain other abnormal blood tests (prostate cancer that is resistant to medical or surgical treatments that Take your prescribed dose of ZYTIGA® one time a day. Your healthcare lower testosterone) that has spread to other parts of the body. Confusion Muscle weakness Tell your healthcare provider if you have any side eff ect that bothers provider may change your dose if needed. Pain in your legs Swelling in your legs or feet you or that does not go away. IMPORTANT SAFETY INFORMATION Do not stop taking your prescribed dose of ZYTIGA® or prednisone Adrenal problems may happen if you stop taking prednisone, without talking to your healthcare provider fi rst. THESE ARE NOT ALL THE POSSIBLE SIDE EFFECTS OF ZYTIGA®. Who should not take ZYTIGA® (abiraterone acetate)? get an infection, or are under stress. FOR MORE INFORMATION, ASK YOUR HEALTHCARE PROVIDER Take ZYTIGA® on an empty stomach. Do not take ZYTIGA® with Liver problems. You may develop changes in liver function blood Do not take ZYTIGA® if you are pregnant or may become pregnant. food. Taking ZYTIGA® with food may cause more of the medicine OR PHARMACIST. ZYTIGA® may harm your unborn baby. Women who are pregnant tests. Your healthcare provider will do blood tests to check your liver to be absorbed by the body than is needed and this may cause before treatment with ZYTIGA® and during treatment with ZYTIGA®. Tell your healthcare provider about all the medicines you take, or who may become pregnant should not touch ZYTIGA® without side eff ects. protection, such as gloves. Liver failure may occur, which can lead to death. Tell your healthcare including prescription and over-the-counter medicines, vitamins, No food should be eaten 2 hours before and 1 hour after provider if you notice any of the following changes: and herbal supplements. ZYTIGA® is not for use in women or children. Keep ZYTIGA® and all taking ZYTIGA®. medicines out of the reach of children. Yellowing of the skin or eyes ZYTIGA® can interact with many other medicines. Swallow ZYTIGA® tablets whole. Do not crush or chew tablets. Darkening of the urine Before you take ZYTIGA®, tell your healthcare provider if you: You should not start or stop any medicine before you talk with the Take ZYTIGA® tablets with water. Severe nausea or vomiting Have heart problems healthcare provider who prescribed ZYTIGA®. Your healthcare provider will do blood tests to check for side eff ects. The most common side eff ects of ZYTIGA® include: Have liver problems Know the medicines you take. Keep a list of them with you to show to Men who are sexually active with a pregnant woman must use a Weakness Have a history of adrenal problems condom during and for one week after treatment with ZYTIGA®. your healthcare provider and pharmacist when you get a new medicine. Joint swelling or pain Have a history of pituitary problems If their female partner may become pregnant a condom and another Call your doctor for medical advice about side eff ects. You are form of birth control must be used during and for one week after Swelling in your legs or feet Have any other medical conditions encouraged to report negative side eff ects of prescription drugs treatment with ZYTIGA®. Talk with your healthcare provider if you Hot fl ushes to the FDA. Plan to become pregnant (See “Who should not take ZYTIGA®?”) 051527-160418 have any questions about birth control. Diarrhea Are breastfeeding or plan to breastfeed. It is not known if ZYTIGA® Visit www.fda.gov/medwatch, or call 1-800-FDA-1088 (1-800-332-1088). If you miss a dose of ZYTIGA® or prednisone, take your prescribed dose Vomiting passes into your breast milk. You and your healthcare provider should the following day. If you miss more than 1 dose, tell your healthcare decide if you will take ZYTIGA® or breastfeed. You should not do both. provider right away. Cough (See “Who should not take ZYTIGA®?”) High blood pressure ZYTIGA® may cause serious side eff ects including: Take any other medicines, including prescription and over-the-counter Shortness of breath High blood pressure (hypertension), low blood potassium levels Janssen Biotech, Inc. medicines, vitamins, and herbal supplements. ZYTIGA® can interact Urinary tract infection with many other medicines. (hypokalemia), and fl uid retention (edema). 800 Ridgeview Drive P30 September 2016 Volume 2 No. 1 Bruising Horsham, PA 19044 USA © Janssen Biotech, Inc. 2016 06/16 038767-160526

Date:6/24/16 Customer Code: 038767-160526 Group 360 Job #: 758139 File Name: 038767-160526_758139_Prostatepedia_v3a Brand: ZYTIGA® Size: 17" x 11" (Spread) Colors: CMYK Description: Fireman Version (Food Effect) Pub: Prostatepedia_Ad

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ADVANCED PROSTATE CANCER IF YOU THINK YOUR TREATMENT OPTIONS ARE LIMITED, THINK AGAIN.

oror surgicalsurgical ** ZYTIGA®ZYTIGA® isis aa prescriptionprescription medicinemedicine usedused alongalong withwith prednisoneprednisone toto treattreat metastaticmetastatic castration-resistantcastration-resistant prostateprostate cancer,cancer, aa typetype ofof advancedadvanced prostateprostate cancercancer thatthat isis resistantresistant toto medicalmedical (eg,(eg, hormonal)hormonal) treatmentstreatments thatthat lowerlower testosteronetestosterone andand hashas spreadspread toto otherother partsparts ofof thethe body.body. ...talk to your doctor to see if ZYTIGA® is right for you. B:11.25 in S:10.5 in T:11 in

WHAT IS ZYTIGA® (abiraterone acetate)? If you are taking ZYTIGA®: Tell your healthcare provider if you get any of the following symptoms: Low red blood cells (anemia) and low blood potassium levels ZYTIGA® is a prescription medicine that is used along with prednisone. Take ZYTIGA® and prednisone exactly as your healthcare provider Dizziness Fast heartbeats High blood sugar levels, high blood cholesterol and triglycerides ZYTIGA® is used to treat men with castration-resistant prostate cancer tells you. Feel faint or lightheaded Headache Certain other abnormal blood tests (prostate cancer that is resistant to medical or surgical treatments that Take your prescribed dose of ZYTIGA® one time a day. Your healthcare lower testosterone) that has spread to other parts of the body. Confusion Muscle weakness Tell your healthcare provider if you have any side eff ect that bothers provider may change your dose if needed. Pain in your legs Swelling in your legs or feet you or that does not go away. IMPORTANT SAFETY INFORMATION Do not stop taking your prescribed dose of ZYTIGA® or prednisone Adrenal problems may happen if you stop taking prednisone, without talking to your healthcare provider fi rst. THESE ARE NOT ALL THE POSSIBLE SIDE EFFECTS OF ZYTIGA®. Who should not take ZYTIGA® (abiraterone acetate)? get an infection, or are under stress. FOR MORE INFORMATION, ASK YOUR HEALTHCARE PROVIDER Take ZYTIGA® on an empty stomach. Do not take ZYTIGA® with Liver problems. You may develop changes in liver function blood Do not take ZYTIGA® if you are pregnant or may become pregnant. food. Taking ZYTIGA® with food may cause more of the medicine OR PHARMACIST. ZYTIGA® may harm your unborn baby. Women who are pregnant tests. Your healthcare provider will do blood tests to check your liver to be absorbed by the body than is needed and this may cause before treatment with ZYTIGA® and during treatment with ZYTIGA®. Tell your healthcare provider about all the medicines you take, or who may become pregnant should not touch ZYTIGA® without side eff ects. protection, such as gloves. Liver failure may occur, which can lead to death. Tell your healthcare including prescription and over-the-counter medicines, vitamins, No food should be eaten 2 hours before and 1 hour after provider if you notice any of the following changes: and herbal supplements. ZYTIGA® is not for use in women or children. Keep ZYTIGA® and all taking ZYTIGA®. medicines out of the reach of children. Yellowing of the skin or eyes ZYTIGA® can interact with many other medicines. Swallow ZYTIGA® tablets whole. Do not crush or chew tablets. Darkening of the urine Before you take ZYTIGA®, tell your healthcare provider if you: You should not start or stop any medicine before you talk with the Take ZYTIGA® tablets with water. Severe nausea or vomiting Have heart problems healthcare provider who prescribed ZYTIGA®. Your healthcare provider will do blood tests to check for side eff ects. The most common side eff ects of ZYTIGA® include: Have liver problems Know the medicines you take. Keep a list of them with you to show to Men who are sexually active with a pregnant woman must use a Weakness Have a history of adrenal problems condom during and for one week after treatment with ZYTIGA®. your healthcare provider and pharmacist when you get a new medicine. Joint swelling or pain Have a history of pituitary problems If their female partner may become pregnant a condom and another Call your doctor for medical advice about side eff ects. You are form of birth control must be used during and for one week after Swelling in your legs or feet Have any other medical conditions encouraged to report negative side eff ects of prescription drugs treatment with ZYTIGA®. Talk with your healthcare provider if you Hot fl ushes to the FDA. Plan to become pregnant (See “Who should not take ZYTIGA®?”) 051527-160418 have any questions about birth control. Diarrhea Are breastfeeding or plan to breastfeed. It is not known if ZYTIGA® Visit www.fda.gov/medwatch, or call 1-800-FDA-1088 (1-800-332-1088). If you miss a dose of ZYTIGA® or prednisone, take your prescribed dose Vomiting passes into your breast milk. You and your healthcare provider should the following day. If you miss more than 1 dose, tell your healthcare decide if you will take ZYTIGA® or breastfeed. You should not do both. provider right away. Cough (See “Who should not take ZYTIGA®?”) High blood pressure ZYTIGA® may cause serious side eff ects including: Take any other medicines, including prescription and over-the-counter Shortness of breath High blood pressure (hypertension), low blood potassium levels Janssen Biotech, Inc. medicines, vitamins, and herbal supplements. ZYTIGA® can interact Urinary tract infection with many other medicines. (hypokalemia), and fl uid retention (edema). 800 Ridgeview Drive Bruising Horsham, PA 19044 USA September 2016 Volume 2 No. 1 P31 © Janssen Biotech, Inc. 2016 06/16 038767-160526

Date:6/24/16 Customer Code: 038767-160526 Group 360 Job #: 758139 File Name: 038767-160526_758139_Prostatepedia_v3a Brand: ZYTIGA® Size: 17" x 11" (Spread) Colors: CMYK Description: Fireman Version (Food Effect) Pub: Prostatepedia_Ad

K P G75 M50 K75 Y50 GN M25 B C75 M75 K25 Y C50 M G25 C Y75 K50 C25 G50 Y25 R PATIENT INFORMATION ZYTIGA® (Zye-tee-ga) (abiraterone acetate) Tablets

Read this Patient Information that comes with ZYTIGA before you start taking it and each time you get a refill. There may be new information. This information does not take the place of talking with your healthcare provider about your medical condition or your treatment.

What is ZYTIGA? ZYTIGA is a prescription medicine that is used along with prednisone. ZYTIGA is used to treat men with castration-resistant prostate cancer (prostate cancer that is resistant to medical or surgical treatments that lower testosterone) that has spread to other parts of the body. ZYTIGA is not for use in women. It is not known if ZYTIGA is safe or effective in children.

Who should not take ZYTIGA? Do not take ZYTIGA if you are pregnant or may become pregnant. ZYTIGA may harm your unborn baby. Women who are pregnant or who may become pregnant should not touch ZYTIGA without protection, such as gloves.

What should I tell my healthcare provider before taking ZYTIGA? Before you take ZYTIGA, tell your healthcare provider if you: • have heart problems • have liver problems • have a history of adrenal problems • have a history of pituitary problems • have any other medical conditions • plan to become pregnant. See “Who should not take ZYTIGA?” • are breastfeeding or plan to breastfeed. It is not known if ZYTIGA passes into your breast milk. You and your healthcare provider should decide if you will take ZYTIGA or breastfeed. You should not do both. See “Who should not take ZYTIGA?” Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. ZYTIGA can interact with many other medicines. You should not start or stop any medicine before you talk with the healthcare provider that prescribed ZYTIGA. Know the medicines you take. Keep a list of them with you to show to your healthcare provider and pharmacist when you get a new medicine.

How should I take ZYTIGA? • Take ZYTIGA and prednisone exactly as your healthcare provider tells you. • Take your prescribed dose of ZYTIGA 1 time a day. • Your healthcare provider may change your dose if needed. • Do not stop taking your prescribed dose of ZYTIGA or prednisone without talking with your healthcare provider first. • Take ZYTIGA on an empty stomach. Do not take ZYTIGA with food. Taking ZYTIGA with food may cause more of the medicine to be absorbed by the body than is needed and this may cause side effects. • No food should be eaten 2 hours before and 1 hour after taking ZYTIGA. • Swallow ZYTIGA tablets whole. Do not crush or chew tablets. • Take ZYTIGA tablets with water. • Men who are sexually active with a pregnant woman must use a condom during and for 1 week after treatment with ZYTIGA. If their female partner may become pregnant, a condom and another form of birth control must be used during and for 1 week after treatment with ZYTIGA. Talk with your healthcare provider if you have questions about birth control. • If you miss a dose of ZYTIGA or prednisone, take your prescribed dose the following day. If you miss more than 1 dose, tell your healthcare provider right away. • Your healthcare provider will do blood tests to check for side effects.

P32 September 2016 Volume 2 No. 1 ZYTIGA® (abiraterone acetate) Tablets

What are the possible side effects of ZYTIGA? ZYTIGA may cause serious side effects including: • High blood pressure (hypertension), low blood potassium levels (hypokalemia) and fluid retention (edema). Tell your healthcare provider if you get any of the following symptoms: ° dizziness ° confusion ° fast heartbeats ° muscle weakness ° feel faint or lightheaded ° pain in your legs ° headache ° swelling in your legs or feet • Adrenal problems may happen if you stop taking prednisone, get an infection, or are under stress. • Liver problems. You may develop changes in liver function blood test. Your healthcare provider will do blood tests to check your liver before treatment with ZYTIGA and during treatment with ZYTIGA. Liver failure may occur, which can lead to death. Tell your healthcare provider if you notice any of the following changes: ° yellowing of the skin or eyes ° darkening of the urine ° severe nausea or vomiting The most common side effects of ZYTIGA include: ° weakness ° high blood pressure ° joint swelling or pain ° shortness of breath ° swelling in your legs or feet ° urinary tract infection ° hot flushes ° bruising ° diarrhea ° low red blood cells (anemia) and low blood potassium levels ° vomiting ° high blood sugar levels, high blood cholesterol and triglycerides ° cough ° certain other abnormal blood tests Tell your healthcare provider if you have any side effect that bothers you or that does not go away. These are not all the possible side effects of ZYTIGA. For more information, ask your healthcare provider or pharmacist. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

How should I store ZYTIGA? • Store ZYTIGA at room temperature between 68°F to 77°F (20°C to 25°C). Keep ZYTIGA and all medicines out of the reach of children.

General information about ZYTIGA. Medicines are sometimes prescribed for purposes other than those listed in a Patient Information leaflet. Do not use ZYTIGA for a condition for which it was not prescribed. Do not give ZYTIGA to other people, even if they have the same symptoms that you have. It may harm them. This leaflet summarizes the most important information about ZYTIGA. If you would like more information, talk with your healthcare provider. You can ask your healthcare provider or pharmacist for information about ZYTIGA that is written for health professionals. For more information, call Janssen Biotech, Inc. at 1-800-526-7736 (1-800-JANSSEN) or go to www.Zytiga.com.

What are the ingredients of ZYTIGA? Active ingredient: abiraterone acetate Inactive ingredients: colloidal silicon dioxide, croscarmellose sodium, lactose monohydrate, magnesium stearate, micro- crystalline cellulose, povidone, and sodium lauryl sulfate. Manufactured by: Patheon Inc. Mississauga, Canada Manufactured for: Janssen Biotech, Inc. Horsham, PA 19044 © Janssen Biotech, Inc. 2012

This Patient Information has been approved by the U.S. Food and Drug Administration. Revised: May 2016

051810-160421

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