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Advanced Prostate Cancer

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New to site: Hey guys

Dudeonlupron profile image
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Hi. New to the site. I’m a 58 yo , diagnosed nearly 2 years ago. Gleason 9, psa 12.5, biopsy was 7/18 cancer w 90% in 6 of the tissues., Lupron (3 month doses) for 15 months and radiation completed. Currently clean, 0 testosterone, 0 psa. To come off Lupron end of September. Maintaining a fairly normal life, exercise, healthy eating. Sex is lousy physically but I’m hopeful will change when Lupron out of system

Be well all, in my thoughts.

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Dudeonlupron
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21 Replies
Shooter1 profile image
Shooter1

Great, wish that was me. With stage 4, bone and lymph nodes Gleason 9/10 after prostatectony which was supposed to get it all failed (tests had shown it contained but not so),I have had a 14 month uphill battle. Chemo. (Taxotere) done (9 cycles), Lupron until orchiectomy , 160 mg Xtandi until dose cut 18 days ago acct. unacceptable toxicity ,to now where I should live a while. PSA still dropping at 0.118 and finally without 24/7 pain, planning to have every thing done today to allow back to work. Been off since April 15th this time.

Good luck with your complete remission and wishing you many happy years to come.

Doug

Dudeonlupron profile image
Dudeonlupron in reply to Shooter1

Thank you Doug, not out of woods yet, but v grateful. Hang in there, one day at a time, be fierce!

My thts and prayers are w you.

Tall_Allen profile image
Tall_Allen

The Lupron doesn't stop overnight when the last shot wears off - be prepared for the testosterone to return slowly (ugh!).

Dudeonlupron profile image
Dudeonlupron in reply to Tall_Allen

Yea, unfortunately. I’m ok with it though. Will be interesting.

Thanks for the thoughts.

leo2634 profile image
leo2634 in reply to Dudeonlupron

I'm ADT since February your post gives me great hope for the sane results. Leo

Dudeonlupron profile image
Dudeonlupron in reply to leo2634

Hey Leo,

Good luck, Godspeed. Thts are with you. One other thing, physically my body adapted to being on the ADT; I have gotten stronger the last 6 months. V surprised, not near 100% but pleasantly surprised for sure. Keep grinding.

Chris

Patrick-Turner profile image
Patrick-Turner in reply to Dudeonlupron

In 2009 I had Gleason 9+9, and after opening me for RP, they found too much spread outside capsule and decided not to do Rp. So I got EBRT + ADT that seemed to be useless, but I could not find that out unless I quit the ADT, and when I did th Psa went from 0.08 nadir to 8 in 6 months, and had to go back to ADT for rest of life.

During the 2 years on ADT, no testosterone stopped the sex itch but could do it OK if I had to but pleasure was subdued. But for many years I have never found a partner interested in a strong fit intelligent honet man. When testo returned about 6 months

after last 3 monthly inject og Eligard, sex returned to normal and all pleasure was possible.

But then with rising Psa I had to return to ADT. Within about 2 years, all ability to orgasm stopped, and Rodger became confused, and the join of skin between head and shaft got so fragile it sometimes just ruptured for no reason. Then another year on I found the erection was useless, half length, and curved to ground because the central erectile tissues have become full of fibroids and the absense of testosterone does this to most guys after 4 years of ADT, so Rodger cannot ever please Fanny ever again.

He can't please Patrick eithe, and Patrick keeps seeing nice ladies around, and has fabuluos dreams about women of the past who now love Patrick.

So it seems the testo keeps a man's Rodger as a Rodger, but without testo Rodger becomes a permanent wuss and ditherer and good only as a drain pipe.

So if I ever did get a woman to my bed, I'd have to use a toy, and maybe do a little muff diving, but there would be not one one gram of pleasure in it for me, other than the pleasure of making She Who Still Can Orgasm have an orgasm.

Now there have been famous "castratti" who are castrated before puberty to become opera singers. Farrinelli was maybe the most famous, and was said that the women of the European palace courts were not only tickled pink by some handsome guy able to cover four octaves, but also "in other ways" and maybe the younger generation who are so reliant on i-phones after dark have no clue what I mean.

Probably the film made about Farrinelli was full of sexed up bullshit that never happened, because young Farri would have had all the problems of no testoserone and he could not order it online, and did not know that if he ate fresh pig's balls or bulls's balls from the abotoir daily, he'd become manly again but wreck his voice.

Eunuchs in palaces of Persia and China were castrated at 9, after being sold to the palaces by their fathers. Sone would live well in palace and be the worlds first negotiators, public servants, and managers of the harens. Not a drop of semen to be found, and not a dick to be seen, all cut off, and a silver catherter carried up a sleeve.

In late 1800s, medics noticed these castrated bloked never got Pca. So when old blokes got troubles pissing because of BPH or Pca swelling, the best treatmant was ball cutting. Only for the rich, poor men just died in pain soon. But about 1880, the first RP were attempted. Its there in The Lancet. The history of Pca is a sobering read.

I can cycle 250km a week at 71, and I don't care when a young man battles to overtake me as they do, and I chuckle because I know he does not know he overtook a man of 71. Now I often think some sort of relationship might be possible with a woman if say the was still interested in being with a man, even if sex could not be had, and lemme tellya, the number of women who are in my age group who still like men is a low number, and of those, few can have sex because the pause they have from men, ie, the menopause hit them sometime between 22 and 45. So not only do most women cease all sex with men before 50, and with themseleves, they just can't stand to have a man around, so they becone opposite to most at 25 who demand more sex than men can give them.

So after my ADT has now fully exterminated all facets of my once vibrant sexuality, I could not ever hope to find a pleasant woman prepared to be nice to me, but without sex. I tried a post menopausal lady of 57 who looked nice, and I went out with her for about 3 months. She liked me, wanted to be "close" ie, wanted the Gentle Rodger, but found her Dear Fanny had locked her front door. It took a month to re-open it with estrogen creams, but then I also experienced her terrible temper, her depressions,

her dyslexia, and I just could not stop my desire just dying. So I suggested friendship, and that really pissed her off, and I just said maybe I will ride a bike a bit...... and leave her alone, and she never ever made any attempt to change, or to addapt, or to be creative, and thus generate desire. DESIRE is what make a Good Roger behave for

2 ppl very well, and availability of sex without desire is not sex at all.

I am sure you might know more than me on many things, but I know all about ADT and all the blokes I know who had an RP all failed to be able to have good sex afterwards, so not worth even trying. But I have also seen so many M and W suffer the conseqiences hormone change, breast cancer, prostate cancer, and other debilitating

conditions yet they remain together. I myself envy them, and it tells me I should be with someone but I never found any woman who could be a real friend, and all I found was the 20 or so who just wanted sex, and commitment and belonging and togetherness meant absolute zero. They all hid themselves behind a facade, and sooner or later could not stop themselves leaving.

So Rodger's non drain pipe function kinda is not very valuable.

I cycle 250km a week and at 71, I have no friends I can ask to come out on a ride with me. Nobody is fit enough, nobody has the time. I know there won't be another woman who will ever touch me, but there are other forms of simple wonderment for me to enjoy. And I only have to think how many guys of 55 who were quite wrecked by the effects of divorce, they lost their real estate, their kids were nasty, and the drink wrecked their liver. So the DREAM we chased years ago could so easily lead to a nightmare, and it did, in many cases, but I think I have done well to survive to now without so much wrekage to deal with and able to enjoy a cycle ride or a day tinkering in my shed, and the loss of Rodger is not foremost in my being.

Patrick Turner.

j-o-h-n profile image
j-o-h-n in reply to Patrick-Turner

Yep, I feel your pain cause... my William is only a Willy now, but that's okay cause I plan coming back in my next reincarnation as a seat on a woman's bike.

Good Luck and Good Health.

j-o-h-n Tuesday 07/03/2018 12:49 PM EDT

** Happy Birthday American - Keep our service personnel safe **

Patrick-Turner profile image
Patrick-Turner in reply to j-o-h-n

OMG, you have it bad. I used to quite like the occasional dame to sit gently upon my face, and the happies followed. But to wish you were gunna be smothered by pussy during a 50km ride ( takes about 2.5 hours ) is a bit much, IMHO. Let's face it, (pardon the pun) you'd have no choice who'd buy the bike and sit on you for hours,

But, of course, there's no accounting for taste, eh?

Patrick T.

j-o-h-n profile image
j-o-h-n in reply to Patrick-Turner

LOL At that stage I won't "shive a git"

Good Luck and Good Health.

j-o-h-n Tuesday 07/03/2018 8:02 PM EDT

** Happy Birthday American - Keep our service personnel safe **

Patrick-Turner profile image
Patrick-Turner in reply to j-o-h-n

So, in essence, "No wukken furries"

Someone wrongly stated to me that I was the man they could not root, shoot, or electrocute, and I'd be the one to remain calm when hite shappened, and then just do just the right thing to make hite unshappen, and all would be well, for awhile.....

Patrick T.

j-o-h-n profile image
j-o-h-n in reply to Patrick-Turner

You're wixing your merds........ too muking futch rike biding.... break a take...

Good Luck and Good Health.

j-o-h-n Tuesday 07/03/2018 10:25 PM EDT

** Happy Birthday American - Keep our service personnel safe **

RonPavluvcik profile image
RonPavluvcik in reply to Patrick-Turner

Hey pal...too much information...

in reply to Patrick-Turner

Too many of us can relate.

Patrick-Turner profile image
Patrick-Turner in reply to

Sorry everyone. I kinda think most blokes don't much like talking about the realities of extended ADT and becoming totally neutered.

I've got my answer to the problem :- I'll marry my bicycle. Someone asked me why, and I replied "I can go for a ride any old time I like".

I often let the front wheel decide where we will go on any day, I am fortunate to live in a smallish city of 300,000, and it has about 500km of dedicated cycle tracks. So I can ride 60km on hotmix sealed track, and only have to cross over roads.

But when I end up in outer suburbs, roads are very quiet, because nobody is at home and they are all in town at work to pay their mortgages.

At 40 I used to do 150km rides and include several very steep long hills but now just need 70km rides, about 3 a week, plus a shortie ride 60km and it has me feeling better. If I cycled 24 hours a day, 7 days a week, I reckon the Pca would just pack up and leave, because it would think it was a terrible place and terrible man to live with :-)

Patrick T.

Break60 profile image
Break60

Congrats! Sure hope you don’t have bcr after stopping ADT like I’ve had each time.

Bob

in reply to Break60

bcr?

Break60 profile image
Break60 in reply to

BCR = Biochemical recurrence aka increasing PSA

Bob

leo2634 profile image
leo2634

Hey Dude, unlike a lot of the Brothers on this site (God bless them all for sure) My Doctor decided on ADT . As the first line of treatment and opted not to do surgery. I have been on Zytiga,Prednisone,and ELIGARD injections every six months also monthly Xgeva injections for bone mets. So far PSA is undetectable and bone pain is minimal. I feel better than I have in years hopefully it will stay that way. My side effects are occasional hot flashes which are tolerable. ,and ED which is managed. I wish you the best of luck on your medicine vacation. Leo

While off Lupron, you might consider the following drugs:

Nilandron(Nilutamide) 75 mg / day, Anti-Androgen (desensitizes androgen receptors)

Avodart(Dutasteride) 0.5 mg / every other day. Reduces Dihydrotestosterone

production.

Cabergoline(Dostinex) 0.25 mg every other day, reduces Prolactin production. Prolactin sensitizes androgen receptors.

Metformin HCL ER 500 mg / day, PCa less aggressive per Dr Myers - less O2 to PCa cells & reduces Metabolic syndrome

.

All of the above are low dosages.

The following is a great reference site:

theprostateadvocate.com/obs...

Boywonder56 profile image
Boywonder56

Im fn dizzy ....get a hobby...whack off in shower....keep it alive....at 62 ive finnaly discovered the joy of sex...its all between the ears..a mind fk is a beautiful thing...and its not so messy....how do u type so much...stage4ductal1percenter...peace

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