Stopping Lupron ADT: Hello - again I... - Prostate Cancer A...

Prostate Cancer And Gay Men

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Stopping Lupron ADT

pjd55d
pjd55d

Hello - again

I was talking to someone with prostate cancer - his prostate was removed and now he is on Lupron because his PSA started rising again. We were lamenting the side effects of Lupron and he said: " well I am not going to take the Lupron any more. I have had enough. "

I have had thoughts about that - i.e., if I refused further Lupron would I regain my sex life ? and what would happen - would the cancer take over? How much " Life " would I be willing to give up for an erection and an orgasm?

I know that these are questions for my Oncologist and I will probably ask at next appointment. Just wondering what anyone here knows - or thinks.

I guess this is part info question and part emotional question

thanks and blessings to you all

30 Replies

Hi PJ I think you ask a good question. Life is not just about ‘how long’ but ‘how well’.

pjd55d
pjd55d in reply to Leeaussie5

Right

I guess I want it all - I want to live forever and have sex forever ... greedy here

thanks for your reply

P

Leeaussie5
Leeaussie5 in reply to pjd55d

So do I

dadzone43
dadzone43 in reply to Leeaussie5

So do I...so many factors: age, partner, sexual pleasure without ejaculation play a role.

Intermittent ADT can give you the best of both worlds.

pjd55d
pjd55d in reply to Tall_Allen

I will definitely chat with my Dr about this

thanks

I agree with Tall Allen on this one. I am planning on stopping in a month or so. To regain libido. Libido isn’t just about having an erection (although it certainly helps), it’s about the other side affects for me. The aching bones, swollen hands and emotional swings. Sex aside I feel like i have aged 20 years! I am trying to fight through it and keep excercising and staying positive, but ADT is a bitch and certainly not about penetration only!

For whatever it's worth, I understand completely! Know the aching bones, swollen hands and emotional swings. Yes, and you feel like you've aged. Know it all.

Keep the exercise going; know it's a struggle. It DOES help.

ADT has been worse for me than any of the treatments, per se.

Good luck, man,

EdinBaltimore

So I guess my question is:

aren't you afraid that the cancer will come back and take over

thanks

P

I am. However, from what I have been reading there really isn’t much literature guaranteeing the cancer won’t come back whenever I stop the ADT, so i am really measuring the quality of life aspect at this point. So if my body is aching and my energy is consistently low, then stopping for awhile may be best decision for me. I wish I had more information on the possible permanent damage I could be doing to my body by all the side affects of low bone density, sporadical foggy cognition, muscle shrinkage etc. Does AYONE know ANYONE who has fully recovered from this cancer? I.e.-went through, surgery, radiation and a period of ADT, and is now cancer free and with a small semblance of past sex life? Perhaps I will post this question.

good question

I know there have been " recoveries " but that was usually when it was caught very early and was killed of with the radioactive seeds. I think they can take testosterone and have a sex life - but I really don't know.

Keep us posted on how the stop ADT thing works for you.

P

Side note: Lupron may last 6+ mos in one's body and I've been told that not all of the side effects may disappear; apparently, "it depends." Ugh.

IMHO I think too much emphasis is placed on sex! I still love my lifestyle even though my 'little guy' is only good for urinating. I'm finding that giving up salt to be more difficult. I just have acquired other interests and I now I'm finally thinking with the 'proper head'...sorry to be the bearer of some positive news!

Leeaussie5
Leeaussie5 in reply to ronronHU

Ron. Your message is positive. But I would so miss the men. The smell, the taste, the feel of a being with a man. The joy of just being there, being together.

I have to choose how soon to drop the Lupron. The urologist thinks 18 months total is good; the oncologist thinks 24 months is good. I'm inclined to choose 18 months. And if intermittent ADT is necessary after this initial run, so be it.

I want a good quality sex life. I've had RT and ADT, and going through the hormone therapy is no picnic. I want sex, a new partner -- a man this time, for a change!

I've been very lucky to have been spared the worst of the side effects -- fatigue is minimal, as are the rare hot flashes.

The worst of the worst -- loss of libido and ED that worsens if you cannot keep erections going by hook or crook -- I've also been spared because my Loop invention gives me reliable erections whenever I want. Just have to remember to do it!...Which in turn bolsters my libido, which I've "talked into" accepting no T for awhile. I have shared the Loop instructions with everyone who's interested. I don't know how many have tried it, but never fear:.

The Giddy is coming in Sept! It's going to be a fantastic product. Seriously. FDA aporoved. Proven to work!! May it be an erectile blessing to every man who tries it.

I can't wait.

Do tell mote about the Loop

Such a hard, personal decision. I was recommended RT+ADT at my first consult. Declined after looking at the multiple and not-rare side effects. Had RT instead. The MO continued to recommend ADT as "significantly better" and I asked " In what ways _specifically_ better?". Best he could come up with on the studies was about 6 months longer survival on average. For me 18-36 months of poor QOL side effects for six months more Survival was a bad deal. I have so far rejected that. A hard decision though.

Very tough questions...particularly when the research on the duration of Lupron injections is all over the place and so dependent on each man's status - physical and emotional - and his doctor's training and experience.

I've read research that suggests ADT prior to, during and post radiation is the best. And, research that says, 6 mos, 9 mos, 12, 24, 36...and life are all "good." The most recent says that 18 mos should be the new standard of care. Yeah, well...it depends.

For me, 1 mo of Firmagon, and 3 three mo injections of Lupron. I feel that I am the poster child for Lupron side effects (hot flashes, wt gain, genital shrinkage - lovely, just add salt to the wound, bone density issues, cardio, NO sex drive, join pain, cognitive fogginess and short term memory issues and, oh, did I mention sadness, depression, grief, crying spells, and so on. Add to this the diff of opinion between uro and RO. Uro said end after 6 mos. RO wants 12 mos (based upon NCCN guidelines).

So, what to do? My last (I hope) injection was in early May so, by the end of the year (OMG), I should be seeing some sense of normalcy return (but, even there, I cannot get a straight answer on what to expect - which side effects disappear? will I return to my pre-Lupron "normal"?)

And....if my PSA begins to climb (at .02 now), then, I guess I go through another round of ADT.

I guess the intermittent approach is worth a try. Apparently, taking a holiday makes it less likely that the cancer cells will become castrate resistant (isn't that a lovely phrase? LOL). And, you'll get a time to enjoy some of functions affected by Lupron.

Long winded response. Sorry. It's Sunday morning. Lots of caffeine.

Good luck,

EdinBaltimore

spencoid2
spencoid2 in reply to EdinBmore

Thanks for the reminder of the side effects, I had them all when I was on Lupron prior to and during radiation. I am having a biopsy next week to determine if I need salvage surgery. Will probably go back on Lupron again as it will be difficult to schedule this difficult surgery. Still hoping the surgery is not necessary but that will probably not avoid the ADT. Auxumin PET/CT scan suggests recurrence so this is probably then end of my sex life for what it is worth. Nerve sparing is not possible with salvage RP.

I have been thinking about what role sex might have in the rest of my life and how important it is or isn't. I have had great sex with my husband but it has been a long time since we have done much of anything, for fear of damage (passive anal) and due to the fact that he has very low T. When I was on Lupron I lost any sexual interest. I still found beautiful men to be aesthetic but just did not want to have sex with them. The lack of T just turned off sexual interest for me.

Maybe it is time to develop new types of relationships with men. I love looking at them smelling them and would love to cuddle with them. Who knows, if I am not a sexual threat maybe there will be some guys interested.

There is such a range of what constitutes sexual, it seems possible that anyone could find others interested. Just being together can be sexual. Fantasy can be as good as or even better than actual physical sex. There is one guy I see regularly at a weekly community event. He is absolutely adorable and knows he is attractive to me and is definitely flirting. I doubt that anything sexual would happen and I would need to get approval and or involvement from my husband. He is like a number of young men I see who are not threatened by gay thoughts. I think this is quite common now.

I am old enough to have learned a number of things that could be shared with others and I have fantasies about mentoring young guys. It will probably not happen but it is an option for those who want male closeness without (or if it develop, with) sex. To me the important thing is for the relationship to be consensual, never forced. I do not want to impose my interests on anyone who is not a willing (and of legal age) partner.

I mourn that lack of physical sex but there are plenty of other things in life. As long as I have the fantasy, that might be enough for me. I forget what my fantasy life was like on Lupron, I guess I will find out soon enough.

thanks

part of it all for me is I see hot men all the time ( I have VERY catholic tastes ) and my first response usually is:

" I want that. Man I could lick you forever - start at one end and go everywhere - and then do it again. " But then I think - " what do I have to offer in return ? "

I think I can smell their maleness-testosterone and wonder what they smell on me. Estrogen ? terrible. As I told my oncologist and my therapist; " I am a homosexual. I want to have sex with other homosexuals. I want homosexuals to want me AS A HOMOSEXUAL. "

In one of the therapy sessions I was asked: " What does it mean to be male? "

That was a hard question to which I gave considerable thought. We re-visited that several times in later sessions. I finally came up with this - for whatever it might be worth. Being a " man " means being a person of integrity, honest, fairness, gentleness, kindness, responsibility to one's self and others.

But you see, these are qualities of what it means to be a human being of value -

Being " Male " means testosterone - dick - fuck - cum.

Is that bullshit ? Is that just my emotions and my loss talking?

Two other recent experiences that are haunting me and that question are:

1. The show Southern Comfort about a trans community in northern Georgia and the issues that they are dealing with - especially body parts and sense of identity.

Interesting that one character - male to female - has prostate cancer, and another - female to male - has ovarian cancer.

2. An art show called: About Face: Stonewall, Revolt and New Queer Art. Lots and lots of expressions of the fluidity of sexual orientation/awareness. I have gone twice - just because there is so much and both times I was overwhelmed. I will probably go again.

So I hope that sharing these thoughts and " feelings " ( real men don't have feelings - right )

is of some value. Also hope that this is appropriate for this site. If not - hope some one - gently - lets me know.

I do take comfort in knowing that I am not alone.

P

DK1347
DK1347 in reply to pjd55d

I can relate to you, and I am glad to see us guys talking about this. I also wish I had found this forum before I had my prostate removed last August. I had PSA of 4.5, biopsy showed Gleason 9 and the docs painted a grim picture; I'm 67, single typical old fart. I had no problem urinating, and seldom got up thru the night. I thought I had done a lot of research but looking back as we all do I know I could have done better. I would have a different biopsy done, I think they can do one now with imaging instead of the old needle way; it's like sticking a stick in a hornets nest and probably helps the damn cancer spread. The doc at one point asked me about my sex life and this is where I made a big mistake; being uncomfortable talking about it I jokingly said at 67 it's not too good... big, big mistake. He took that as an answer to not be careful about sparing any nerves, and now I'm left with a limp, lifeless dick, like a condom with very little air in it... that will not ever come back, and it's so limp that it's difficult to piss without getting piss all over the place! A few months after the surgery I went in to talk to him about it and he wasn't concerned and he said that viagra or any other ED med will have no effect as there are no nerves to make anything happen, thanks a lot doc! I tried a pump and it barely inflated it but it shrunk back up immediately. It's almost impossible to have an orgasm, and when I do it's barely noticeable. Holy shit it's depressing.

Then the doc tells me in January that my PSA is rising again and it's time for the second part of the treatment; he had led me to believe that the surgery would take care of it all.

He suggested ADT and radiation; and he told me a brief description of the Lupron side effects and wanted to stick it to me then and there. I didn't buy that without doing some research and I'm glad I did. Those side effects would have put me over the edge, and I'm going to take my chances... I've had anxiety and depression since my teen age years and I have it barely under control with natural remedies and occasional Xanax and I also have heart rhythm problems under control and ADT would screw up these and more.

Damn right us guys have feelings, especially this group of guys... I don't know what is in my future either; it scares me a lot but going along with any recommended treatment doesn't mean that I would be any better off and I would be guaranteed a whole lot of unpleasant side effects, and I would risk losing the very little feeling that I still have down there and I'm not willing to do that.

Hang in there, DK

pjd55d
pjd55d in reply to DK1347

Thanks for the reply

yep this prostate cancer thing is the toughest one for me - and I have gone through plenty of tough stuff - some my own fault

and yet - as I have said - I still want to live and I can usually find something that brings joy and I even get to laugh

Best

P

spencoid2
spencoid2 in reply to DK1347

did you get the biopsy confirmed at John's Hopkins? even with PSA of 4.5, i think anyone with a Gleason 9 would be a candidate more for radiation than RP. However that is what i had and got but it might not have worked.

as much as i would like my dick to work a little and as much as i want to avoid ADT, i will probably start it again if my new biopsy is positive with high Gleason, to buy some time for traveling etc. if the side effects are too much i can always quit or do it intermittently. if i need to be on ADT indefinitely i don't see much harm in a salvage RP with no possibility of nerve sparing. either way the dick is done, will have to redefine my sexuality.

and a question for the group: how does chemical castration compare to actual castration in terms of slowing PC and in terms of side effects? of course castration is not reversible but if the side effects are less awful, it might be the better choice? of is physical castration even worse?

i think that all you are saying is appropriate for this forum. at least it is of interest to me, possibly on the verge of major changes to my "sexuality". and "real men" do have "feelings" but mostly in their dicks. once you get rid of the testosterone you will see that you have feelings hidden deep down somewhere. when i was on ADT, i was very compassionate.

Hi

I was recently diagnosed with high risk PC and part of the treatment is to do ADT

I found this information on the National Cancer Instuteis helpful

cancer.gov/types/prostate/p...

hope this

pjd55d
pjd55d in reply to DexterDane

Thank You Sir.

what a great site for info and understanding that I can read - with my non-medical mind. Good luck with your situation - keep us posted

P

My dick is small, but I can have dry orgasms after eleven years of PCa. No therapy for over 1 year. My T level is only 27 (not 360) my PSA is 0.06, so maybe I have hope for the future. Sometimes cancer cells are still in the bones, and if they get T they can multiply, so I am not taking T supplements at this time.

Whether -- or rather, by how much -- you would regain your sex life after refusing further Lupron partly depends on how proactive you've been in the keeping-erections-going dept.

I've been trying to alert guys to the fact that during ADT, if erections are kept going, the libido is going to respond positively.

Like I've posted too many times, the way you keep erections going is to use a device -- and there's currently three choices (excluding the hideously-unnatural VED) available right now:

1) Giddy, co-sponsored right here by Darryl and Malecare.org. Like a cock-ring, except shaped precisely to apply pressure around the penile shaft without constricting blood flow (the salient feature of all three of these --apply pressure, but not constriction).

2). Xialla, which fits around the shaft and pulls back, with a strap piece that attaches above your butt crack.

3). The Loop, my homemade device, which is ridiculously simple to make yourself in 5 seconds. This device has been totally reliable for me, the guinea pig placing total faith in its efficacy during this 18-month stretch of ADT. It's apparently prevented any significant penile shrinkage, and again, the erectile reliability has been stunning.

Forgive me PJ if I'm repeating myself; I lose track sometimes of the history re: who I'm responding to!

Also, these devices out the lie to the myth that since you're in zero T, libido is hobbled. If blood flow is increased, that compensates quite a bit for T-dep!

May you be blessed as you move forward!

thanks handdrummer777

tell me more about your invention/loop please

It's absurdly simple, the way this thing works! Go to my initial post "Hello everyone...." and scroll down aways until you come across another member's kind repost of the link to the instructions for my Loop device.

Good luck, whichever device you choose, but do choose one! #1 and #2 are FDA-tested...they fucking work, dude. My own experience with the Loop is a testimony I'm proud to offer.

You may not respond 100% right away, but give it more than one try, PJ.

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