Competence Issues: I'm wondering how... - Advanced Prostate...

Advanced Prostate Cancer

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Competence Issues

Cisco99 profile image
88 Replies

I'm wondering how many guys suffer, as I do, from diminished competence. My wife just sent me out to buy a gallon of whole milk. For some unknown reason, I bought a gallon of 2% instead. I do things like this every single day -- forgetting, mistaking, bad judgment. I'm guessing it's stress, a kind of "pseudo-dementia," where anxiety makes one act demented, without any physical actual dementia. My wife is taking good care of me, but I stress her out, too, and I hate being lectured about making better decisions. What do you gentlemen do about this, if any of you are in the same boat?

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Cisco99
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88 Replies
Lyubov profile image
Lyubov

The side-effects of your treatments likely contribute to what you're experiencing. They certainly have in my husband's case, and it's been three years since he had the IMRT & ADT treatments. (He had RALP in 2014, recurrence in 2015 that required the radiation & ADT) Especially when he feels overloaded with several things or something rather complicated to do, he gets frantic & it's a struggle for me to calm him down.

But some of what you & he experience we all experience for various reasons -- getting older, too many distractions, and so on.

But if you start having lots of short-term memory lapses, then it might be time to get a medical consultation.

Cisco99 profile image
Cisco99 in reply toLyubov

Thank you, Lyubov. It is a complicated matter, mostly psychological. And truly, my daily competence -- especially with dates and scheduling -- has never been earth-shattering.

Lyubov profile image
Lyubov in reply toCisco99

Just don't be too hard on yourself. Do your best & let the rest of it go. . .

Wdoug profile image
Wdoug in reply toLyubov

We do tend to lose focus as we react to APC and treatments. It levels off or we become accustomed to it. I think or hope it's nothing to worry about.

Hex40 profile image
Hex40

I retired as a self employed IT constant In January of this year. Diagnosed April 2018 6 weeks before I originally planned to retire. As soon as I started lupron In May of 2018 the mental decline was obvious to me. At a point it was so obvious i knew it was time so I retired. Interesting enough today I tried to use Microsoft Word something I’ve used for a long time because I wrote a lot of business papers. Today it seemed like it was something I never used before. So in my mind the decline continues.

Cisco99 profile image
Cisco99 in reply toHex40

:( I also take Lupron. I take so many different pills I don't know which one makes me poop or which one makes me hiccup.

I don't feel "dumb" -- I just make mistakes.

Hex40 profile image
Hex40 in reply toCisco99

For me sleep determines how well I will do that day. Sometimes I sleep only 4 hours and the following day is total crap. If I sleep well I can at least function the next day but use my mind for something complicated forget it. And this is a guy who designed complicated computer systems for multi-billion dollar publicly traded companies.

Cisco99 profile image
Cisco99 in reply toHex40

Sleep is good. For dog-pee and me-pee reasons I never get through a night. But I can take a 2-hour nap and catch up later. But not that groovy REM stuff.

monte1111 profile image
monte1111 in reply toCisco99

Years ago, before APC, I drank some liquid antacid. I felt worse and drank more. Running for the bathroom all night. In the light of day, in a bottle that looked just like the antacid, I found I had been drinking laxative all night. I did not go to work that day. Next time I looked wife had taped a note to the bottle, "This one makes you poop."

Cisco99 profile image
Cisco99 in reply tomonte1111

That's great. I'm picturing a bathroom full of taped-on notes.

When I was a teen, I came home after drinking three beers and, to disguise my beer breath, filled my mouth with Lestoil. Same bottle and color as my mouthwash.

monte1111 profile image
monte1111 in reply toCisco99

Excellent. Saved your mother the time and trouble of washing your mouth out with soap.

NWLiving profile image
NWLiving in reply tomonte1111

This is so classic and so familiar. Thanks for sharing.

Kaliber profile image
Kaliber in reply tomonte1111

😂

Jimhoy profile image
Jimhoy in reply tomonte1111

Soooo. While camping last summer, I went inside to brush my teeth after s'mores by the camp fire!! No lights needed as all the tooth brushes are on a rack with tooth paste below on the counter. Started brushing and immediately threw up!!! Wife left a tube of hydrocortisone cream next to the sink after treating the G-kids mosquito bites!!! All but one had a good laugh about it!!!

Jc

Cisco99 profile image
Cisco99 in reply toJimhoy

So what was the taste like? I felt, reading your story, we were heading toward Preparation H!

Jimhoy profile image
Jimhoy in reply toCisco99

Don’t recall!! Instantaneous gag reflex!!!

Lyubov profile image
Lyubov in reply toHex40

Similar to husband's experiences at times -- and it frustrates him so much. I encourage him to let go, do what he can when he can & be grateful for that! I'm basically in the same boat, aging process & also have Stage I lung cancer that I hope my March CT will say doesn't require any further treatment at that time. . .

Cisco99 profile image
Cisco99 in reply toLyubov

That is my hope too! (for you)

Danielgreer profile image
Danielgreer

Hey Cisco, I do my best to avoid stressful situations. I just can’t handle stress at all. When my wife talks to me about issues with the kids, I just shut down. Also, I do have more fatigue. Do you think it could be fatigue in addition to stress that’s causes the forgetfulness? I agree with you that it’s probably not actual dementia.

Cisco99 profile image
Cisco99 in reply toDanielgreer

I shut down, too. ADT has removed testosterone, and I blamed my tendency to tear up to that. but honestly, I think it's part o the "downfall syndrome." I no longer have work to do, no income, I'm in pain, under lifting restrictions, walking funny -- it's a lot to take. My wife feels everything is up to her, and she is overtaxed. Our conversations are often her lecturing me and me breaking down.

Danielgreer profile image
Danielgreer in reply toCisco99

I’m sorry to hear about your “downfall” situation. I think one of the things you have going for you is your poetry. Hopefully you can keep that up because I think it’s good. Hopefully your poetry is an escape for you.

Cisco99 profile image
Cisco99 in reply toDanielgreer

Thanks, DG. I am mostly pulling old things from my hard drive, that touch on our mutual problems here at HU. I have hardly written since July. But I'm beginning to get back to it. You're right, it puts me in charge of something. Mastery is precisely what I've been lacking!

NWLiving profile image
NWLiving in reply toCisco99

As a spouse who is aging and a bit off herself, I am so scared that I can fly off even for normal miscommunications. Then I think, well duh, I can see why he did that. I’ve found I have to push myself to get out and do things on my own, then when I’m feeling better, I’m more inclined to laugh at stuff. There is a great program Powerful Tools for Caregivers that is very helpful, it’s a 6 week workshop that is often provided free. That may help reduce the frustrations. I also go on line and talk with the guys and gals here.

NWLiving profile image
NWLiving in reply toNWLiving

I guess I begged the question and I would say that there have been cognitive changes just as you guys have described and I know you were not asking for my opinions. My heart is just so full of caring for you.

Kaliber profile image
Kaliber

Oooooooooh ...... now I get it !!! .... it’s “ competence “ , not “ contenance “ ( sour milk or .... ? ) ...... right. Wow ...

No ...... none of us Lupronized brothers ever do anything like that my friend Yayahahahaya yayahahahaya

nooooooooo ....

It’s a wonderful day in the neighborhood, won’t you be my neighbor .

At least you didn’t try to buy milk at the tire shop.....again ....

Evidently your wife lets you out alone more than some of us ..... how bad can it be ......

Just say’in 😂😂😂

Be happy, don’t worry ... grab a couple more Xanax and chill my brother. It’s all good.

billyboy3 profile image
billyboy3

A new study just came out confirming our worst fears, dementia is a side effect of ADT therapy, up to 35% more common among those of us, the longer your own lupin etc. the higher the risk. I have been at this for many years, escaped from many side effects but my brain function has deteriated considerably over the past year or so. Only 68 but it is what it is.

It is why I preach for men to make a bucket list and live large, each and every day!!!

addicted2cycling profile image
addicted2cycling in reply tobillyboy3

I declined ADT and chose castration. Not only did I "Lighten My Load" going down the road, I immediately improved my BMI and theoretically increased my longevity. Never been a "Bucket List" kind of guy since I'm pretty sure I'll have no regrets not having done something once I'm dead.

Rocketman1960 profile image
Rocketman1960

Next time bring home beer too. Then at least you got the importance stuff.

Cisco99 profile image
Cisco99 in reply toRocketman1960

I have a can of IPA every night before bedtime. Since I pee 4 times night;y anyway. I might as well enjoy it!

Sguh profile image
Sguh

Depending on your treatment(s), I suppose it could be a side-effect to a med, yet I understand your frustration. You didn't mention your age, but we all have "moments". Hopefully you'll talk with your doc. I have to say this hits a bit too close to home for me. I can relate to you and your wife's situation and it IS frustrating. The meds are so hard on one's body, perhaps a break from Lupron, if possible , if possible, might give you some relief. My heart goes out to you and your wife. I'm convinced that some meds cause mental issues, but I'd take forgetfulness and mild dementia in a NY minute over what I'm living with. See if you can take a break from Lupron. If you become sharper, you will have your answer. All the best to you both ❤. PC treatments do affect both partners profoundly.

Murph256 profile image
Murph256

I feel like I got old. It’s not just my mental capacity. I look at my pics from pre diagnosis, just two years ago when I was 57, and look like I’m still in the prime of my life. I look happy, healthy and confident. Then I look at my pics now, and I look old. That’s the only way to describe it. I look thin and worried and haggard. And I move like an old man also. I had always been athletic and active, practicing baseball and basketball with my son all the time. Now I am stiff and have aches and pains, and can’t even climb stairs or walk smoothly. And my driving.... I was always an alert, aggressive driver. But I had a very serious fender bender about two months ago, because I was distracted. Now I drive slowly and cautiously, like an old man. And then of course there’s my sexual function. I won’t even go there.

I realize we all get old at some point. But the before and after DX is stark with me.

MarkBC profile image
MarkBC in reply toMurph256

I feel similar. Diagnosed 18 months ago at 55 yrs. As you described, I feel like I have aged many years on ADT. It has become much more difficult for me to focus mentally for long periods of time.

in reply toMurph256

For that year with the tubes I felt 83 and I was 53 then . They don’t call it old man’s for nuttin... All aboard ! Keep you hands and feet in kids . Nobody is getting of this ride . Buckle up ...accident prone is me ... I’ve bumped into more rocks and trees in these past five years .I tagged a car parallel paking in Durango my big truck . I left a note cost me a grand ..damm .i caught myself on fire and had to roll to to myself out ... I’m using caution now not to injure myself with the darn osteo issues .. pending . My Nat dr said . You can break you leg or are but don’t break your hips or back .. woe is me. ., later 😎

tom67inMA profile image
tom67inMA in reply to

You set yourself on fire?!? Dang, you got some great stories to tell.

in reply totom67inMA

Wife started to poor gas from a fan onto debri we were burning. I told her never fo that . 10 minutes later I’Thats m use I gotta that same can the flame ran up my sleeve then down m body . I dropped and Rolled there was a plstic tarp on fire besides me .. It was instant. Singed my clothing burnt the hair off my forearm and a little on my head . That was my first and hopefully Last fun with fire like that. Wife was Somewhere else not watching. Nobody would have been able to help if I had needed it . Be cautious ..

tom67inMA profile image
tom67inMA in reply to

This is the problem with wanting to die of something other than cancer, freudian slips with a gas can :-)

in reply totom67inMA

I made a few .😂

Cisco99 profile image
Cisco99

Thanks, Lulu. It helps me to know it's the disease, or it's the meds. It's not just post-retirement fog. I don't want to blame myself for goofing things up, but at some level, I know I do.

in reply toCisco99

I’m still on adt ..or it’s just plain no testosterone. Blame doesn’t help . Good thing you’re twice as smart as the average guy so you have some to lose.. keep writing . I love it ..

Cisco99 profile image
Cisco99

Thanks Murph. Sorry about the accident. It's such a comeuppance for us former gods. Surely a tough lessons is being taught -- and deep reserves of humor and self-forgiveness are required. Mine sound like an empty gas tank!

ck722 profile image
ck722

A calendar and a shopping list on the back of a junk mail keeps me sane and my wife happy,

larry_dammit profile image
larry_dammit

This week when pulling into the garage with my mower which I have owned and used for 6 years I forgot how to stop it 😖 wasn’t pretty. Now I have to fix the damage. Wife says I need to slow down and ask for help. At 69 and used to doing everything myself this really sucks 😡😡😡

in reply tolarry_dammit

Dammit ! Just don’t get near those blades!

dadzone43 profile image
dadzone43

It sounds like the "brain fog" that is associated with ADT. The oncologists do not like to talk about this side effect. I forced mine to talk about it and told him I would not be accepting ADT for that reason and the myriad other side effects. He was not happy. I am not here to make him happy; I am here to treat my PCa and live my life.

in reply todadzone43

They know ,they deny it ...

billyboy3 profile image
billyboy3 in reply todadzone43

I think you made a major mistake as the stats prove beyond a doubt that IHT works and extends ones life and during the off cycles, allow your body to build back up, to fight another round.

dadzone43 profile image
dadzone43 in reply tobillyboy3

We will see. I am one year post-op with a zero PSA. IF that changes I would reconsider my options. They wanted RT+ADT after my surgery "just to be sure"/ "salvage". I want evidence that there is *need* for salvage. So far, no evidence.

billyboy3 profile image
billyboy3 in reply todadzone43

yours in a common situation, does one throw some more bombs at an enemy that may not even be there. On the other hand, the earlier one attacks, the better, so a hard choice to make.

My attitude is one of aggressive treatment, as much as one can take, for as long as one can take it.

I hear about salvage surgery, but have not seen real cases to support nor in fact it being done, on any wide scale. I do know that once you have radiation treatment, the surgery option down the road is gone-too much damage done to adjacent cells so one cannot see what is cancer and what just the side effects of radiation treatment on all cells it hits.

I think you need to get educated, what is your Gleason score at time of treatment, what were the margins in your prostate, etc. all impact on whether the cancer had already spread prior to surgery. Your age also plays a part, as does your general health. All of these factors should be considered before one commences a decision on treatment.

I also want to point out that NO research or proof has been provided to show that in the process of surgery, that cancer cells will not escape.

The bottom line is PC is a tough tough enemy and WE do NOT have all the answers as today, that is a FACT. Much of what is going on is guesswork, but it is needed to move forward to make PC a treatable disease. I am most disappointed in the slowness of advances in end stage treatment, adding a month or three is not an answer.

However, until we force all research facilities to work together, the progress will be made in this ad hoc manner, which forgets the thousands of lives and cost to society of by this selfish approach to cure this disease.

dadzone43 profile image
dadzone43 in reply tobillyboy3

Thank you for your advice and caring. I am pretty educated. I am a physician and probably as well read as most patients about PCa. I had G7/G8 biopsies in 8/18 and RP in 12/18. There was tumor at the margins of my surgical specimen. Pre-surgery MRIs, CT and bone scans were all negative.

There were no support groups for PCa where I live -- none in the entire state of RI -- so I started one. In terms of what I am "doing" about my cancer: I selected RP over RT. I declined hormonal therapy as either a part of RT or after RP until I had some evidence that there was still PCa in my body. So far, none. I am now on every three month checks of PSA with my MO, my surgeon moved to another state and I now see my urologist every six months. I am engaged in penile rehabilitation through a local Men's Health Center.

You are correct that there is no way to "prove" that cancer cells did not escape in the course of surgery. My choice was to trust my surgeon, to continue active monitoring of my PSA, to continue to use off-label metFormin, POMI-T and the anti-tumor supposed benefits of atorvastatin which I was already taking. And the usual dietary and meditative practices to encourage my body's immune system.

It is a choice. Others choose to "do everything" and submit their bodies to what I would find to be devastating side effects of treatment for some reassurance that they have done all they can. That is another choice. Doing nothing would be stupid. Doing everything may also be stupid in terms of life of life and lifestyle.

billyboy3 profile image
billyboy3 in reply todadzone43

I am not the medical expert here but I am one of the longest in terms of surviving and living with PC. My major concern given what little you have shared is the fact that you had positive margins. That indicates-in my view, that the PC has spread. I would have opted to have the area blasted where the margins were-I am assuming that they did that but you cannot chop out what you do not see.

The fact is that the less cancer there is in your body, at any time, the better. With luck, you get the aggressive and fastest growing cells, and have thus bought yourself more time-as in my case.

I also believe that there still more that is no known than known, i.e. the advances made over the past ten plus years are all very small ones, once HT fails to work, then we are on the last round of the game.

In terms of quality of life, there is no question that quality of life suffers as one progresses onwards with advanced PC. That again, is the reality of this disease and the effects that any treatment has. So, you like so many of us, live from psa to psa test. The next step is going to be when your psa rises, and at what level do you take some medical processes to slow down the growth, i.e. it is back and once it is beyond the prostate, there is no cure.

I opted for combination IHT, as it gives the body a chance to recover, and all also allows for the best quality of life while extending it. It has also worked great but make no question, the longer you are on and have HT, the greater the sides effects. It does do major havoc on muscle mass-and our hearts etc. are muscles, so I would suggest that if on HT long enough, the effects of the treatment, will do as much if not more damage then the cancer.

I could not get my best friend to go out on the ledge and follow my lead, and a week before he died, some six years earlier than I thought we could get for him, he said that he wished he had listened to me, but chose the less is better option. I can advise that I am guessing that being dead is not as good as still able to ride a bike, smell a flower, look at a pretty face, read a book-my major free time exercise.

Has my quality of life suffered, damn rights, but I like being on this side of the grass.

I will, at some point, now sooner than later, make the call to end treatment and go quietly into the night, BUT, not yet for as long as the mind still works, and one can smile, even if rarely, life is the better option and doing everything one can do to keep it as long as possible, the only way to go-a caveat on that none of us know what is on the other side-but we will find out sooner than later.

Ok, so live large man!!!!

Aynoy profile image
Aynoy in reply todadzone43

Ok. Get that. But then what are you doing ?

gleason9guy profile image
gleason9guy

I make a lot of notes to remind myself. I have a similar issue and without notes, I often would be lost.

JDKotter profile image
JDKotter

I found that hand written tasks help a lot. Don’t type the list..hand write your daily chores helps!!!

ck722 profile image
ck722

JDKotter:

Yes, that works. Pencil and paper does the trick. Nothing electronic, that seems to put things on the "back burner" - to be forgotten. I don't know why but hand written is the best.

billyboy3 profile image
billyboy3

the reality is we are very sick guys and no matter the treament, there is going to be serious to very serious side effects, that is the REALITY of living with PC, and the longer we survive, the worse and the effects compound. That said, for those us who have outlived all expectations, I am only still here because I took the strongest meds I could find, did drug trials and let the entire scene pound my body and mind. I am 19 years on after surgery boys, so something worked for me. As I round the last curve, I only consider myself very blessed and lucky to have had the best docs in the business assist me, and my fellow PC guys, as we road the journey together for as long as we could.

Merry Xmas to all, LIVE LARGE GENTS, make up that bucket list and get on with it for the clock is ticking and there are no replays for us-or anyone for that matter, life is a one way journey so hop on and live like there is no tomorrow!!!!!!!

Cisco99 profile image
Cisco99 in reply tobillyboy3

Toot! Toot!

Inspiring, albeit depressing, advice ...

I don't really have a bucket list.

I don't enjoy long vacations.

I can't climb a mountain.

Maybe miniature golf? Nah, that sucks.

Can't swim, don't like getting chlorine up my nose.

I am no longer a good reader. I adored books!

I can't understand what people are saying in movies. (Deaf in one ear.)

Having sex -- I don't even dream of that any more!

Though I once did ... and I liked it!

I guess I'd like to go out to lunch with friends, one at a time,

or have a couple beers.

My wife wants to see the Great Barrier Reef -- before it's completely gone.

Or the Galapagos -- connect with the lizards.

You know what -- I'd love to go to all the remaining great old ball parks

and see the teams play.

Fenway, Wrigley, Kaufman (KC), Oakland, Anaheim (if that is where the Angels play now) ...

Sit close, hear the bat connect with the ball, hear the first basemen catch it in their gloves.

Yeah, where the Angels play!

billyboy3 profile image
billyboy3 in reply toCisco99

then quit talking pal and go, and if it makes your wife less stressed than all the more reason.

On the topic of stress on those who are watching us crumble before their eyes, that is real. I in fact left my wife because of the stress my decline was causing for her, coupled with my not needing any more stress for something I cannot control.

Again, which is why I harp all the time, get off your butt and get rolling!!!!!

Even going to watch some kids playing at the park beats sitting at home in the dark.

Cisco99 profile image
Cisco99 in reply tobillyboy3

I do watch kids play in the park. I was a coach for 7 years. Then one day my son informed me he hated baseball. :(

I'm not sure I really give a shit about ball parks. It was something i once would have enjoyed. I was trying to th8ink of things I wanted to do. I guess performing (I entertain at bars and bookstores) is my favorite thing, plus walking my dog Lucy in the woods.

I miss my friends. They are scared of my condition, and neither ask nor want to hear much. I wish they would ask me out for breakfast and stuff. Sadly, my cancer is a big theme in my life. I don't want to rub it all over people but I'd like to feel free to tell them what I am going through. As one of numerous other topics.

I have 1900 friends on Facebook. Maybe 5 that I can count on and enjoy. Only 1 I see every day -- and I have to take care of him! (Disabled.)

I was a music critic and collector for many years. Now it kinda bores me or is too loud to let me think!

I have to say, I have enjoyed posting here the last couple of weeks.

Also, I am a cheap old miser. I don't want to spend my life savings (my son's inheritance) on a trip to Dodger Stadium! I hate the Dodgers, not sure why.

Aynoy profile image
Aynoy in reply toCisco99

Go do the great baseball parks dude. What are you waiting for ? I’m a chick and the great bb parks are on my bucket list !!

in reply tobillyboy3

Hell yah! billyboy3.. pluck the day ,before we are plucked from this planet .👏😎

Currumpaw profile image
Currumpaw

Hey Cisco99!

Competence or a new order to life's priorities?

Do you think that another factor that hasn't been mentioned just might be that the normal, mundane things that are 'somewhat' necessary, the things we do to get by in life everyday, suddenly seem much less important than they once were?

Currumpaw

Cisco99 profile image
Cisco99 in reply toCurrumpaw

It is true, I am reprioritizing. But my biggest mistakes often affect finances -- which I have not reprioritized!

monte1111 profile image
monte1111

Definitely have memory issues. If I have more than 3 items to pick up at store I make a list. And then forget the list. I've had beer on the list, and when I got home I had no beer. The main reason for going to the store. So, back to the store. And where oh where did I park?

in reply tomonte1111

where’s my car dude?

tom67inMA profile image
tom67inMA

Just thought I'd add my personal experience to the discussion. I work in embedded software and was really worried about "chemo brain" and ADT-induced "brain fog", and to a certain extent I've experienced those. Usually in the form of misplacing my glasses or cell phone or who knows what several times a day.

But, from job performance standpoint, on a good day I'm still really good. I'm still able to keep a rather complex problem in my head long enough to thoroughly think it through. Still have the occasional brain fart, and sometimes just can't remember a word or name.

I'm only 52, and consider returning to work and staying physically active as hugely important to my mental and physical health. I've heard strenuous exercise helps with the mental performance, and so far that does seem to be the case.

in reply totom67inMA

I was 53 upon dx . Now 58 .. activity and exercise plus proper nutrition can better our odds ..The best med is happiness .. when we discover APC is advanced in us at an age under sixty its a bit different isn’t it .. prime earning years ... Enjoy the holidays ..🎄

billyboy3 profile image
billyboy3

I think as part of the bucket list items, is one where we have to re organize our lives, i.e. get rid of stuff and downsize our entire life to reduce stress and having to do less, because that is the new reality, as we not going to get better but will in fact continue to decline, that is life but for us, a bigger red flag as some of us will die because of PC or the effects of treatment. This is no picnic boys, and nobody should think otherwise.

I am in the process of selling off my drag cars and other stuff because I cannot look after them anymore and my driving skills have dropped where I hate driving with me as the driver!!- some dark humour !!!!!

in reply tobillyboy3

😂😂I too have sold all of my toys .Had to .. but it’s ok . We’ve downsized and in the end less is best . Less to maintain . 🏎🏎🏎

FCoffey profile image
FCoffey

What do you gentlemen do about this, if any of you are in the same boat?

Lupron caused severe cognitive impairment. I was unable to preform even simple tasks that took multiple steps. I could no longer do math in my head. I forgot car keys, hats, gloves, wallet - something I never did before.

I could not figure out how to route around a closed road - in an area where I have been driving daily for over 25 years. I experienced intrusive thoughts of my own death. I was deeply depressed, started drinking too much alcohol, and had no desire of any kind - sex, food, sleep, work, anything. I lost over 20 lbs because food no longer interested me.

Continuous, severe hot flashes left me unable to sleep for more than a few minutes at a time; after 6 weeks without REM sleep I was experiencing symptoms of psychosis.

My oncologist diagnosed "multiple grade 3 toxicities."

Grade 3: severe and undesirable adverse event, treatment required

Grade 4:life-threatening or disabling adverse event, hospitalization and intensive care required

Grade 5: death related to adverse event

My solution was to refuse further injections of Lupron. Quality of life is not just a word, and the evidence that Lupron extends life is slim at best. There are both theoretical and clinical reasons to suspect that Lupron hastens the development of CRPC. I'm working with my oncologist on strategies that preserve my quality of life while treating the cancer as a chronic disease to be managed, not cured.

Last month my PSA dropped nearly 30%. It's still high but I am have no symptoms whatsoever. My testosterone is 760 - 1000. I'm alert, fit, active, and in many ways in the best health of my life.

What's right for me may not be right for you. My mind is very important to me, and Lupron was killing it, and me. So I stopped taking Lupron. Problem solved.

Cisco99 profile image
Cisco99 in reply toFCoffey

How long ago did you quit Lupron. What have been the outcomes -- good or bad?

It's an incredible post. Scary, inspiring.

FCoffey profile image
FCoffey in reply toCisco99

Thank you for the kind words. I won't tell any man what he should do, that's an extremely personal choice. But I urge every man to think carefully about what is important to him, and factor that into whatever decisions you make. Don't let doctors or scolds bully you. None of us is going to live forever. I believe that how you live your life matters a lot more than the number of days you live. No one gets a prize for years of suffering.

I stopped Lupron ADT in October 2017. As far as I am concerned, the outcome has been very good. PSA has gone up and down but is not out of control. No evidence of radiographic progression. No symptoms. My quality of life is as good as it can be while learning to live with a chronic disease.

j-o-h-n profile image
j-o-h-n

Do what every red blooded husband would do............. blame it on your wife...

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 12/19/2019 6:29 PM EST

Collarpurple profile image
Collarpurple in reply toj-o-h-n

Ha Truer words were never spoken so well Ha ha ha

GoBucks profile image
GoBucks

I have a note in my left pocket that says "read notes in right pocket".

in reply toGoBucks

At least you can remember which pocket?

Kaliber profile image
Kaliber in reply toGoBucks

Lol

Hex40 profile image
Hex40

Today I drove my wife and daughter to downtown Chicago to have lunch at a restaurant at Macy’s that’s popular during the holidays. We’ve done it yearly for 25 years. When it was time to leave I had no clue which doors to go out to get back to the car(it’s a very large 7 story building). My daughter literally had to direct me to get out. Then when we got to the parking garage I forgot the floor. My drive home was at best stressful and I was very unsure of myself. At 64 I felt like I was 84 mentally.

Collarpurple profile image
Collarpurple

With husband I’m sure he only hears bits

And this didn’t start after medicine

He just tunes me out ha but I have to say

I have got better in doing the same to him

Anyway 2% is better for you less fat

Don’t sweat the small stuff like is too short

Collarpurple profile image
Collarpurple

Meant life

billyboy3 profile image
billyboy3

how old are you Cisco?

Cisco99 profile image
Cisco99 in reply tobillyboy3

I'm 69

billyboy3 profile image
billyboy3

well, I am 68. the fact is, we are in the final stages of our lives, that is a fact. Too many on this site do not comprehend this fact when considering treatment options, etc. so they focus on PC as if it alone has caused or created their many health issues, MANY the result of long lives!

We are not kids, we will be able to go back to when we were 30, so we need to stop acting as if we in this late stage of life, have some scourge come along and enter into our bodies.

Quit expecting to be 39 when you are not. Most of your issues are age related and nothing or little to do with your cancer-and I see this repeatedly on this site, men are simply not dealing with reality in terms of what they expect and what is wrong with them.

Many of us might get lucky and die with PC not because of it, some will die because of it, some will die as a result of the treatment.

It is how we live the rest of our lives that is important, so try to put all things in perspective when your considering treatment options and the impact, one way or the other.

Do not expect miracles, nobody can turn back the clock, so don't sweat the small stuff, live life large, love and hug those close and rock on while you can!!!!!!

j-o-h-n profile image
j-o-h-n in reply tobillyboy3

youtube.com/watch?v=vIYRbbH...

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 12/19/2019 10:46 PM EST

Fitzbruce1 profile image
Fitzbruce1

I am 69 n have 20 plus bone Mets, diagnosed 7-18. Been on Lupron, Zytiga n Prednizone for almost 1.5 years. My hot flashes are not nearly as bad as they once were. Other than that, I don’t have any side affects that I know of. Just had my annual physical n all is good. I rode dirt bikes 1200 miles on Montana mountain logging roads in August. I was over 25 years older than the next oldest guy. No tiredness, no nothing. I am putting a Colorado snowmobile trip together for next month. Four of the other 5 guys are in their 30’s (including my 2 sons). I drove my ZO6 Corvette on the Sebring track again in September. Hit 147 on the first straight away and passed 2 Mclarens n a Porsche.

I guess I am just lucky so far not to have either mental or physical decline (other than w the wife in bed) but I know it will come. Mean time I am having fun n living a normal life - at least until I take my pills in the middle of the night and then remember that it will never be a totally normal life again. I just try to ignore PCa and try to have fun everyday.

Best wishes and happy holidays to all my Brothers!

Cisco99 profile image
Cisco99 in reply toFitzbruce1

Lucky dog! Zooom!

Jimhoy profile image
Jimhoy

Welcome to my world!!! I’d forget my head if it weren’t attached!!!

Cognitive & executive decline started @ 6mo’s into Eligard (Nov 2018) and continues to worsen to this date, long after ADT ended!! Long story that I’ve shared on HU before and will message you if you want to hear it!! Everyone on this site has shit to do and I don’t want to bore the masses!!!

Jc

Cisco99 profile image
Cisco99 in reply toJimhoy

I am interested -- more in stories of cognitive and executive dysfunction than names of medicines and procedures.

Jimhoy profile image
Jimhoy

By the way, I came across this post while searching HU’s Mental Health site for experiences / advice with brain exercises and such to help me. Still looking if anyone wants to chime in!!

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