HELP

I happened upon this site trying to find some resources for my husband. He is two years post robotic surgery, almost a year post-radiation, and about as long since his last lupron injection. This disease SUCKS! My husband is suffering terribly. His treatment has left him unable to get an erection. He went through every treatment available, and nothing worked. He has too much nerve damage. His last option is a penile implant, which he is pretty sure he wants to do.

He is in a deep depression, that I just can't seem to pull him out of. I love him with all my heart, and I couldn't care less about his ability to perform. I am post menapausal, and sex really isn't a thought that occupies my time all that much. However, I am quite aware, that it isn't about me....it's about him. He was diagnosed at a relatively young age....47. I am very satisfied with intimacy....the closeness and love....I have done all that I can to assure him and let him know that I love him....no matter what. He has a disease for crap sake. It isn't his fault. While sex is important to most men, it was something that was VERY important to him. I guess everyone has their level of sexuality, and his was very high. This has broken him. I don't know how to help him. I am trying to give him his space, but the void between us is getting large. He has shut me out. I so need a man's perspective on this. I am asking for some sound advice.

46 Replies

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  • Just getting this terrible disease at age 47 is devastating. He is not alone lots other men are going through the same debilitating feelings as he, including myself. As for as the ED , yes that to a man is also devastating, and causes depression. But, hey! it's not the end of life, he is alive and can be thankful for that. he has you, who does not pressure him or demand, and very understanding. So, tell him he is alive and is a cancer survivor. The only advice I can suggest is counseling, or see a professional who can get him out of depression.

    Let him get his penile implant. but counseling and professional help is needed.

    I hope the best for both of you.

    Roger

  • Thank you Roger....he has to want to get it. That is part of the problem.

  • Good advice.

  • Good advice!

  • Has he tried Alprostadil either as an injection or placed into the urethra (aka Muse).

    Injections worked for me when tablets such as Viagra had no affect.

  • The injections work...but land him in the ER with painful erections that won't go away. Like horribly painful....

  • Brutal, that would be enough for me not to try that again..There are many other ways to express love besides sex..

  • Yes....Tried that too. No luck.

  • I didn't need radiation or Lupron but otherwise that is a very familiar story. I was 52 when diagnosed, as a result of investigating sexual difficulties that were distressing me a lot. For the 26 months since surgery I've tried pumps, injections and pills but nothing has been satisfactory. Injections were close but I had very erratic results. Tablets as part of penile rehabilitation gave me a lot of side effects, except for daily Cialis but that has complications with penile injections, and no erections. Work was also difficult and I quit work 6 months ago, fairly depressed. In January I was very depressed. A lot of it was the distress from being unable to get an orgasm in activity with my wife, and the distress of unpredictable and often painful outcomes from the various pumps or injections. I want sexual pleasure together with her. Trying and having it sometimes work, sometimes be painful, sometimes just fail was very distressing.

    For the depression, a more effective antidepressant helped a lot. There are a few that work well and don't interfere with orgasm. Some Schema Therapy psychology treatment helped too. I'm having penile implant surgery this week (in Australia - cost and availability varies strongly by country)

    If you can find ways of bringing each other to orgasm or strong pleasure without an erection, that can work and be satisfying - 'outercourse'. That may mean taking turns giving and receiving pleasure. We haven't succeeded in that for me. One good tip is using silicone based lube on his penis before any rubbing. It is helpful on my wife too.

    If he has a good enough blood supply to get an erection with a pump, penile injections might work and can be very satisfactory. I'm about to find out how painful and how satisfactory a penile implant is for me.

    You both have my great sympathy. I know it's very difficult being the spouse of a depresed person. These sexual effects are really hard for some men, at least, and depression can be a horrible state.

  • Thank you for the reply David. He is being treated for his depression, but this whole "manhood" aspect is just too much for him. It's wearing me down. He is angry, sullen, and engaging in very hurtful behavior. I find myself crying most days. He lashes out at me, because I am the only one who will listen. He has tried all number of things, up to and including, another woman. Just to see if anything will get his junk to work. This is NOT MY HUSBAND. I am heartbroken....not by his impotence, but by the lengths he has gone to, to overcome it. This is a MEDICAL condition. Nothing more....His body was ravaged by disease, surgery and treatment. He's alive! He isn't disfigured, he isn't legless, he isn't mentally incapacitated.....he is still every bit the man I love and married....but this is turning him into a monster. I love HIM....not his penis....but he is making it more difficult with each passing day, I can only endure so much hurt.

  • If it is totally destructive to you you might need a vacation or some time in retreat to recharge..Does he excercise, any spirituality in him.He can destroy you as well if you let him.Does he ever let up ; Be nice to you , tell you he loves you or he's sorry??If he always on attack that's brutal..I'm no better than him all to often I take it out on my angel..I realize it's wrong and apologize.That doesn't always get it..I will be better to my wife after hearing your story..Keep communicating..It helps me and can help you by Judy letting it outGood job!

  • I have to tip toe around....I am not allowed to talk about anything important....or I am accused of "starting!" I am only permitted...to discuss the weather or doorknobs! He doesn't seem to understand that this isn't just about him....it isn't. My patience has reached it's limits.

  • You might have to escape from Alcatraz!!

  • Look, sexuality is important to all human beings, if it weren't, we wouldn't be here. I understand that your husband may have had a voracious appetite, but that by no means equals the meaning of sexuality. Now is the time when he can prove his sexuality, if he chooses not to, and continues to grovel in his misery, let him. He has a responsibility to you and his family, he's got to man up and deal with it. If not, it will deal with him.

  • Oh Joe....if only he had your attitude. That is EXACTLY what I have been telling him. We can use this as a way to find intimacy in other ways....I'm game. He has done nothing but hurt me....up to and including another woman....(which didn't work....surprise!) He is turning into a monster. I'm just to sit and look the other way.....because "I don't understand..." really???? You have no idea how supportive I have been. The research, the Dr. appointments, the phone calls, the reading until all hours of the night. It's not as if I am some hag of a woman. I take care of myself...I fix myself up....I wear a size 2 for crap sake. I'm 57, but men do still look at me! But as I said, this isn't about me. I am just trying to obtain some insight, from a man's perspective. I can only look at this, from my woman's eyes. Not my fault. He had a disease....it ravaged his body...and the treatment finished the job. But he is still a man. That is how I feel. His penis didn't make him that. His heart did. And now....he's breaking mine.

  • Hi Aqua,

    How I do feel for you. Does your man take anything for depression? I didn't realize at the time I was having massive headaches, it was from stress. My PCP put me on Cymbalta, and that worked like a charm. I've also been on Lupron for seven years, I'll be 58 next month. The ED is the least of it. I've got boobs, lost most of my body hair, got fat, but lost most of it, and I am always fatigued. I'm on SSDisability because I can't work. My wife on the other hand, is what I would call a hands-off care giver. She couldn't give a care. Says one thing, does another. But, that's beside the point, try to see if he is willing to try an anti-depressant. It certainly won't hurt.

    Joe

  • Oh...that is first thing I did. He is being treated for that. He has just turned into a mean, sullen man.....I care, more than I should at this point.

  • Does he ever show his heart to you anymore?...I don't even know you but I can tell that you deserve love and good things..We all do,even him in his rage.Any one with cancer is supposed to be calm ,find your zen mode, because that promotes healing..,With P. C. ,A. D. T. & treatments including stripping your hormones, your muscles, and affecting your mind and especially rampant emotions it's tremendous.His advantage is that he is not along If only he can realize that and that this is much more serious than sex this is his and your life also..Wow, my wife is beside me and we are with you in spirit..

  • Thank you so much for hearing me....that is all I need to be....is heard. It helps and I am very appreciative.

  • You are heard and understood by us males on his end and our spouses on your end.Always keep you self esteem and respect. Protect yourself,by all means.You said that he didn't do anything to deserve this.My belief is that I did have a huge hand in helping to create my advanced condition...Looking backall is 20/20..If he did or didn't it doesn't matter unless he can look to where he can make changes to benefit you both..He does have some options to try to improve things..I would never tell anyone to bail on a love one unless it's going to permanently damage you..Everyone has a breaking point..Make sure you don't break down..I will pray for him to see the light.

  • When the bad outweighs the good...it's time to re-evaluate. I won't bail easily on a near 20 yr relationship. He was the man of my dreams.....this has changed him. He has lost (or given away,) his integrity....in my eyes. That has been a bitter pill to swallow. The girl....was the breaking point. He sold us out. Just because "nothing sexual" (I believe that...maybe I am naive) happened...doesn't mean a single thing. He traded the pure love of an outstanding woman....for fractional payout. Truly pathetic, the value of integrity cannot be measured. You either have it, or you don't. Something that I will never relinquish.

  • No one can be in your shoes and advise you ..Surely not me. There is something as self preservation.Just make sure that you make changes to protect your mental health before you reach a breaking point..You want to help him,but if you are broken you can't..Keep the faith!

  • Right on Joe!

  • >>>

    His treatment has left him unable to get an erection. He went through every treatment available, and nothing worked. He has too much nerve damage. His last option is a penile implant, which he is pretty sure he wants to do.

    <<<

    The usual sequence of ED treatments is:

    . Viagra, etc.

    . . VED (pump);

    . . . Injections (Caverject = alprostadil, tri-mix, bi-mix)

    . . . . Implant.

    Some questions:

    . . . Has the Lupron (or other ADT) worn off, completely?

    . . . Can he have an orgasm, with enough lubrication and stimulation?

    I understand that, with surgery and radiation, he might have extensive nerve damage. That will stop Viagra (etc) from working.

    . . . What else has he tried ?

    I've been using injections for many years. They're effective for most of the men who try them. IMHO, they're not well-understood by many MD's, and under-prescribed.

    For an anti-depressant, Wellbutrin might work, without sexual side-effects.

    Here's a "Sex and Prostate Cancer" booklist. You might start with Mulhall's book, and work from there:

    inspire.com/groups/us-too-p...

    I'm sorry this has hit him so young. IMHO, PCa in one's 40's is a lot worse, psychologically, than PCa in one's 70's. And it's not good that he's shut you out, but it's not the first time that's happened, and won't be the last. Counselling would be a good idea, _if_ you can find someone who understands PCa and its effects. Some (idiot) counsellors have tried to find psychological causes for ED in PCa clients (and their marriages).

    If you're hunting for websites, try the "USTOO" forum at inspire.com .

    Keep in touch -- it's not easy, doing this on your own.

    . Charles

  • Thank you Charles. Yes, his hormone levels are back to normal range. We did the injections....they worked, but he develops painful priapisim, that land him in the ER. So that isn't an option. Yes, he can still achieve orgasm. He's last option is a penile implant. And yes, we found an IDIOT counselor....he is being treated for depression....but I believe he needs a good support group...and a counselor who is not an IDIOT! She did more damage...than good. Thanks for your input...this is very helpful.

  • I hope he gets some help. Don't give up.

  • If he has "went through every treatment" such as shots, pills, or pump, he has one option left IF and it's a big IF. IF his mindset tells him that the only way he can have sexual satisfaction with you OR by himself is to achieve an erection, he needs the penile implant. But, as other men will tell him (if they are willing) sexual gratification can still be had without an erection if either he or both of you are willing to experiment and have some "fun following around". There are other ways to have sexual pleasure and gratification without intercourse, and as in most other cases, "NECESSITY IS THE MOTHER OF ALL INVENTIONS (in this case, substitute pleasure/gratifications for inventions)

    Sometimes it is necessary to speak the truth in stark terms. Time to lose the manhood line of thought and become a teenage boy again.

  • I agree...I am game for any and all experimentation...I am not a prude.

  • aquaeyes5.., thank you for you answer of not being a prude, and thank you AlanMeyer for agreeing with me. I was hesitant about bringing up the "fun part" of sex as it can be a very touchy issue. The fact that humans, both men and women run into issues like this which involve sexuality can be very hard on relationships and individual mental health. Sadly most of us were raised at a time when sexual relations meant only intercourse AFTER marriage and for many people, ONLY for procreation. The truth is sex is a big part of our human nature and it is important to remember that we really are just a higher form of an animal. May I suggest to you Aquaeyes5, if you haven't done so, be the one to initiate oral sex with him and see what happens. That "teenager" is still lurking somewhere in your hubby.

  • Correction to my above comment. Spelling error occurred. Instead of "fun following around" I meant "fun FOOLING around" :)

  • I think MelbourneDavid and ng27868168 have nailed the solution to this problem. That kind of thinking has worked for me and, although I have been unable to have intercourse since about 2008, and even though I'm now 70 years old, I sincerely believe that my wife and I enjoy sex as much as ever.

    I think the keys are experimentation and communication. Experiment to find out what you can do to please him and what he can do for you. Intercourse isn't working but manual and oral sex still work. They work best if the two of you each keep trying new things and observing what works and what doesn't. Try new techniques. Try new lubricants. If something works, play around with it. Try to refine it. Try to figure out what parts work best and maximize them. If he does something that you really like, think about it and do the same thing for him. The anatomy is different but a lot of the underlying physiology is actually shared by both men and women.

    Communicate - both physically and verbally. If he does something that works well make the moves to show it, If he does something that leaves you flat, tell him so. Encourage him to do the same thing. Go to a bookstore together. Look through the books on how to please a woman and choose one that looks hot to you. Have him do the same thing on how to please a man. Then trade books.

    I like what ng2786168 said about "become a teenage boy again". Have fun. Enjoy each other's body. Go for it!

    Finally I'll say that I personally would be afraid of a penile implant. Will the same sensitivity remain? Will there be pain? Will it interfere with achieving orgasms? If it doesn't work is there any way to return to what he was like before (I don't think there is.) And most important of all, can you make things work without erections. Lots of people can. I think the sex can actually be better. It's worth a serious, and fun, attempt.

    Good luck with it.

    Alan

  • I went through the same treatments your husband did and had the same results. That was 22 years ago when I was 45. I'm sorry I can't add anything to the replies you have already received. Other than, your husband is a very lucky man to have a wife that cares as much about him as you do.

  • Thank you Steve. That was a very nice thing to say....and it is very true.

  • >>>

    . . . Yes, his hormone levels are back to normal range. We did the injections....they worked, but he develops painful priapisim, that land him in the ER. So that isn't an option. Yes, he can still achieve orgasm. He's last option is a penile implant. And yes, we found an IDIOT counselor....he is being treated for depression....but I believe he needs a good support group...and a counselor who is not an IDIOT! She did more damage...than good. Thanks for your input...this is very helpful.

    <<<

    Just to reinforce what everyone is saying:

    . . . None of this is your fault.

    You don't have to defend yourself -- "prostate cancer is a couples' disease", and you're one of its victims.

    I've been doing injections for nine years, and I've become an evangelist for them. What I'm going to say next verges on medical advice, and I'm not qualified to give that. So do your own research:

    . . . Google "Albaugh intracavernosal injection algorithm" --

    . . . you'll get a very useful article, if you can get through the paywalls to access it.

    From your description of "painful priapism", I'd suggest two possibilities:

    a) He injected a too-large dose (very easy to do, when you're starting out, and taking other peoples' advice);

    and/or

    b) He's pain-sensitive to Caverject (= alprostadil = prostaglandin), along with a good fraction of other men.

    Each of these has an answer:

    a) _Start with a small dose, and work up_.

    Most men can find a dose which gives a good erection, but _doesn't_ cause priapism.

    b) Try "bi-mix" (which contains (I think) regitine and papaverine, but no Caverject). That works for most men, but not all. If that doesn't work, try a "tri-mix" with a _small amount_ of Caverject.

    That process assumes that you have a urologist (or sex-function specialist) who'll work with you, until you:

    . . 1. Find a drug (or mixture) and dose that works for you, and

    . . 2. Find the right dose of it.

    There are some men for whom injections just don't work. But he might want to consider re-trying that path.

    If injections don't work (or he won't work on _making_ them work), an implant is the next logical step. There are occasional horror stories, but most men who get an implant say, on these forums:

    . . . "I should have done this sooner."

    Depression is a nasty beast. It often comes along with cancer. It'll wreck lives and marriages; I wish I knew a cure-all. It's funny that "no erections" can be so destructive to a man's ego. The penis is small, but _so_ important!<g>

    I agree that a PCa support group would be a good place for him to go. Some men take to them, others think:

    . . . "Why would I want to expose my problems to a roomful of strangers?"

    to which the answer is:

    . . . "They might be able to help you!"

    but not everyone is ready to hear that.

    Keep plugging away. As previous posts say, it's important to keep communications going between the two of you.

    . Charles

  • Aquaeyes, It's a very difficult time for you and I agree he is lucky to have a wife like you.

    Some of my experiences have similarities to your husband and may help you understand his behavior a little better. Before my prostate cancer diagnosis at age 52 I was struggling with the erections fading before orgasm, and so my not getting to orgasm. With the prostate cancer diagnosis and surgery coming up, I got desperate. I was buying various sex advice books, lubricants and a vibrator without talking with my wife first, trying to find a way over the initial problem before the surgery. I did at least one inappropriate thing because I was obsessing about sex.

    Shortly before surgery, unsuccessfully desparately seeking a test to explain the sexual issues, I consulted a "men's health GP". As well as useful advice he also suggested that a new partner often helps overcome sexual problems. That was very unwelcome (and not acted on) as we had been faithfully married 25 years (now 27 years). I wonder if your husband got that advice (which is not relevant to initial post-surgery erectile dysfunction where the erectile nerves are not working), and acted on it in desparation to find a fix. We have not been able to get me to orgasm in "outercourse" and I have wondered, and when depressed somewhat obsessed over, perhaps seeing if a sex worker could bring me to orgasm flaccid. I have not done it, but thought about it quite a lot.

    I have tried virtually all the treatments without satisfactory results and had an implant this week (so far all pain, no gain for at least 6 weeks), but implant availability and cost varies dramatically from country to country.

    Depression makes me obsess about problems, unable to not think about them. It also makes it hard for me to make decisions because the risks always feel too big. It also makes me grumpy because everything is too difficult for me to cope with. Depressed people are hard to live with.

    Another issue is that some men have sexual ability at the core of their self identity as men. Fortunately I'm not like that, but I have felt that life would lack pleasure without intercourse. A question he should be asked (but not by you) is why he feels erections and intercourse are important to him. If you ask it, he may take it as an implied criticism, but a psychologist or psychiatrist should ask him and help him think about intercourse's role. My wife and I differ on our answers to this in a way that is emotionally difficult. Is there a psychologist associated with a nearby cancer hospital who can discuss manhood and post-prostatectomy ED with you two together?

    Where in the world are you? I agree with Charles that the right dose of bimix may give him a painless erection without priapism, although in the end I gave up because I got a priapism if I got an erection, but it was unusual. Mixes without prostaglandin are available in the USA and Australia but seem hard to get in the UK. Failed injections and priapisms are very discouraging, even if the actual sex is resonable.

  • Thank you David....your advice is extremely insightful for me. I am in the US...Pennsylvania, right outside of Philadelphia. We went to a therapist...who happened to be an idiot, and made things much worse for both of us. My husband, has acted inappropriately. He dragged another woman into the mix...I do not believe anything actually happened sexually...and yes, I know exactly why he did it. That doesn't make it any less hurtful for me. I am so ANGRY...about this stupid girl, I just can't seem to get past it. Not that it matters much, but I am NOT a hag....I'm 57, but no one puts me past 45. I wear a size 2. I take care of myself....I have been nothing but caring, faithful, and understanding....I don't deserve this. I am not trying to make this about me....I am just growing weary of being a whipping post. I will ask the Dr about mixes without prostaglandin...because those injections were a complete disaster..both times in the ER with a giant boner....and him screaming.....lol....sorry about being graphic....but I wanted to paint an accurate picture....if not for the serious nature of the topic, it would actually be kinda funny, if you can picture this at 3am in the emergency room! I am going to ask about an appropriate group, that actually handles this type of situation....he needs it, and he needs to understand that he is certainly not alone in this. So many men are affected, and all of them act differently. To answer the question...he is ABLE to achieve orgasm, without an erection. The strange thing too....he gets erections SPONTANIOUSLY in his sleep!!!! But he get one, on his own. This leads me to believe that there HAS to be some function left! Otherwise, it would not work at all!!! Am I wrong for thinking this??? It just doesn't make any sense to think otherwise. The implant surgery is one and done....once it's done, there is no going back, and I am thinking it is too soon. His cancer was found quite by accident...well sort of. He was having to get up and go to the bathroom, several times a night....he blew it off, as just a normal aging process. I FINALLY dragged him to the doctor to have it checked, and his PSA was over 700....surgery was his only option, and I researched for days the best Doctor to perform it. We ended up in New York, with a world class surgeon, who said he case was one of the worst he's seen.

  • Oh! I can empathize with the injection experience. Some of my injections went for four hours and it hurts a lot having a too strong erection for that long. Fortunately none of those had prostaglandin. My one try with prostaglandin was a tiny dose that made my whole penis ache awfully. Ask for bimix which a sterile compounding pharmacy makes up when you have a prescription from a doctor. But it gets very difficult to inject again after a really bad experience.

    I got very occasional nocturnal erections but not often. I think sometimes the blood flow and pressure just works out. They didn't last long, and I couldn't get an awake erection even with Viagra etc. From soon after surgery I also got semi erections sometimes when sitting on the toilet which is again abdominal pressure and blood flow, not the nerves.

    I also felt getting up 2-3 times a night was aging but I had a 20cc prostate cancer.

    The relationship between you is critical though it's very hard to improve while he is depressed.

  • Good point.. You are correct that he has funtion..The anger is the problem..How do I know ? Because I have it also.If hurt my wife and ruin one precious day of our life's I am the culprit in both of our demises..I don't want to be the guy who destroys his loving wife..We are all going to die..But who want to go out like that ..? Or frankly who wants to be remembered as a mean angry So and So to the end?

  • My dilemma?? What kind of a person....walks out on a sick spouse?? I am not a quitter....I just don't know how to deal with MY anger. Anger over the chosen behavior. I can't process the fact that his behavior is a choice.....and I am just to sit and accept. Because he has his mortality in question....I am just to turn a blind eye, and accept whatever he CHOOSES TO DO. Like it's nothing....I am to accept all manner of SHIT behavior and just blow it off. Is that fair??? Rules and boundries don't apply....if you have a life threatening health crisis?? You can behave anyway you like....and it's OK??? To me it's just an excuse....I know I am sounding like I am trivializing a life changing event....but what am I to do with it?? I feel trapped and backed into a corner, that I can't escape from.

  • Depression is " Killer " for us. I fight it but sometimes it wins... it all a test...keep going!

  • Hi there aquaeyes5

    Your posting and obvious love for your guy is very very moving. He may not realise it at present, but, he's very lucky to have a Lady like you in his life.

    My suggestion is why not try printing out your HELP request and all the replies and put them in a folder called something like "READ ME at your leisure" subtitled "you are NOT alone" and leave it lying around where hubby will find it [Difficult that bit, lots of us guys can't find something even if we trip over it] . Then take yourself off out for the day. .. fingers crossed that he'll find and read it.

    Don't suppose he's in the mood for humour at present but I've found it does help.

  • Great Idea.....thanks for the input!

  • Genius!

  • Aguaseyes5,,,what a conundrum.Im sorry for what you two are going through..I also am relatively young.53 two years ago when I started my trip with P. C. ..I have a gorgeous ,vivacious wife with unconditional love also..I hope that he can see that your unconditional love is the most important thing in his life..I wasn't ready to stop an active sex life either.I suffered extreme depression ,sucidal thoughts and morbid thinking..These thoughts are still there a times..We need to push them back..I felt worthless ,not a man , just taking up resources that healthy person could be using.Felt that I'd be doing my wife a favor to relieve her burden ,if I could check out the world would be better off without me.My precious wife is healthy and could have a good life..Well she's not going for that.So I can relate to where to are both at. If I would have left or my wife left me I don't think it would have gone well for me..,I would have done myself in..The moods the anger and the feeling of not being a man , pure worthlessness is all in our male ego head...That's has to go..He in the Nile. Acceptance is the hardest part..That male ego..We thought we had another 10 -15- or 20 years to be viral.I understand what he's going through.I did an orchiectomy...That a tuff one for a man to do..Happy I did now..He is so lucky to have you..I wouldn't want to be here without the love from my wife..He has to wake up, this is an invidious disease for all concerned..Everybody has something..Heart disease ,diabetes,people are fighting all kinds of terrible ailments..This is ours..He has You.Life can be good with love..We pray that he can realize this sooner than latter..Hang in there and keep your self strong..I'm praying for the both of you..

  • A live steer is preferable to a dead bull.

  • Aquaeyes5.

    You are in a real conundrum. There is help for him but he has to accept it. He needs professional help from a psychologist. You can contact a cancer center to see who they would suggest that handles pca patients and understands this problem. I fully agree with Roland. He needs to know he is being abusive to you and himself.

    I will pray for both of you.

    Dennis

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