Just like to put this out there for those that went metistatic and is still taking lupron. 1 year ago i stopped getting my six month injection of lupron because of Covid. So, i took it upon myself to not get any more of them except if needed.
In December 30th 2020 my testosterone did go up to like 58. Psa still 0! Beer belly went away, lost a whole lot of weight. (I was eying up 36 size pants) im dwon to a 30 pant size. I cant be happier.
I know the Docs say you need to keep taking them in case of stray cells but i had to try. Im not a doctor for sure and dont suggest anyone else here try it but it worked for me so far. Next test is july 14th!
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Tjc1
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You are mistaking your PSA for your cancer. They are not the same thing. Just because your metastases aren't large enough to put out PSA doesn't mean that your cancer isn't growing and spreading.
That said, if you want a break, I think you should take one. I just think it's important not to minimize the risks.
Also, your weight loss may be at least partly attributable to the Megace.
How do you know if ever safe to be off adt? My husband Gleason 9, 1 lymph. Had surgery, radiation and 6 mos of Lupron/ Casodex last shot 5/19. He’s been undetectable ever since and T back up to 368 ( he’s 69) as of yesterday. Do you always stay on adt as a precaution and/or assume cancer always growing. I am always worried~ he feels great and very grateful to be “done”. Haven’t had any scans in 18 mos. we go to Dana Farber.
Clinical trials?? He’s been off everything for 2 years and only thing DF has us do is 3 mo PSA checks and he’s enrolled in a virtual prostate cancer follow up yearly created by his radiologist Dr. D’Amico. Should I be pushing for more follow through? My husband is a out of sight out of mind kind of guy.
Kemba: No, you don't. Standard of care in the U.S. is to stop ADT until PSA rises to a certain level, or doubles faster than a certain number of months. Both those numbers are debated, and are the subject of an ongoing array of clinical trials, but there is no controversy about the overall concept of stopping ADT given your husband's situation. His staying on ADT no only lowers QoL, confers imperceptible SEs as well.
Yes Allen, i stopped Magace before the ADT. The break of ADT is worth its weight in gold to me. My Onc didnt seem to concerned with my break. We shall see.
It is my understanding that PSA rise "follows" testosterone rise by several months. At your last PSA test, your testosterone had just begun its rise to the normal level of 523 ng/dl for men 65-74 (it's higher for younger men, see: menshormonalhealth.com/norm... ).
Have you felt the effects of rising T yet? Is libido returning? Have hot flushes disappeared? When the effects of low T are gone I think you'll see a gradual rise of PSA.
Some men do fine with intermittent ADT. Some don't. Hopefully you're in the first category. In any case, I'd talk to your oncologist and make a plan for how often you will get a PSA test and how high you will allow it to go before restarting ADT. I think it's easier and more objective to have a plan that came from thinking through the issues than to wait for a PSA test and then say, Uh-oh, what should I do now. I think I'd recommend a test every three months and a restart of ADT at a PSA level of 2 or maybe 4. You don't want it to go too high because it's easier to suppress a smaller amount of cancer than a larger amount and, with a larger amount, it's more likely that the cancer will mutate and become more ADT resistant.
Another thing to consider for you and all those who don't tolerate ADT well is high-dose transdermal estradiol. It suppressed T with far fewer SEs.
My PSA is rising, and I'd be out of my mind with terror (not to mention alcoholism) if I didn't have this in my back pocket, and had to live with the specter of never feeling good again, i.e., living the rest of my life on Lupron with no hope of parole.
Having been on Lupron myself I think I understand something of what you feel, so I'd like to offer a few more things to stuff into your back pocket.
1. Fixes for Lupron side effects.
Megestrol acetate (Megace) works for some men to counteract hot flushes though it can stimulate appetite and cause weight gain. Exercise, especially including weight bearing exercise, can counteract the tiredness and weakness. It takes real effort but it does work. Sex, which seems impossible under Lupron, turns out not to be impossible for a lot of us. Each time I tried it I started out thinking "This ain't going to work and I really don't care." And each time when I worked at it and paid attention to satisfying my wife, I found to my surprise that I got aroused too and everything actually did work. Of course it works better if you're 60 than if you're 80, but then that's true even if you're not on ADT.
2. Other treatment alternatives to permanent Lupron.
Dutasteride and bicalutamide work very differently from Lupron and its analogs. They also have side effects and mechanisms of action of their own that should be read about before you try one. However, like Lupron, they have been used for many years. Sipuleucel-T (Provenge) helps some men though I think it has been found to work better in combination with ADT than independently of it. And there are numbers of heavy duty treatments like chemotherapies and maybe even radioligand therapies like Lu-177-PSMA that aren't normally given before ADT but that may change in the future.
3. Determination to live.
I think this can be the most powerful back pocket tool of all. I sometimes feel like I've had enough of life but when I concentrate on all of the things I like and care about like family, friends, music, books, movies, food, games, helping others, etc.,I think "I'm glad I'm still here." We all know that ADT sucks. I haven't met anyone who said he likes it, But when I get depressed I try to think about and get into the things I like. That makes me glad that I'm still alive.
Going on my 11th year. I screwed myself with my mind plenty. Not going to do that anymore. Drank my share of beer too. Now i dont much anymore. Ill see what happens in a couple weeks. Also everytime my PSA went up i could feel it. Call me crazy but i could. So im going to roll with the flow.
It's funny, I've never been able to do that, and especially when I was on ADT. I was part of a support group, and everyone was so upbeat I couldn't believe it. I'd be crying so hard I could hardly speak, in part from the ADT (emotional lability), but partly because I was having a really tough time with the grief and anger associated with permanent loss of my sexuality due to a botched RP, and just feeling rotten. When I'd introduce myself, I'd say my name followed by, "I'm easy to remember because I'm the only one in this room with a completely shitty attitude."
You do know that you can get an implant, right? Helpful in the grand scheme of things. My ins paid for mine. My first tears of ADT i couldnt stand the thought of sex but when i did want it. Of course not much worked. The pump did for awhile but my wife left for 6 months to babysit my granddaughter. So i never used the pump as a treatment. Should have cause i lost a whole lot of lenth down there. That cant be recovered by the implant but im happy.
Sex? What was that? Oh ... wait ... now I remember!
Actually, although my potency is long gone and my ability to have orgasms requires a combination of great patience, extraordinary efforts, and continuing adaptation on the part of my wife and myself, we somehow have kept it alive. It ain't the same kind of sex we used to have at age 25 and 24 but, at ages 75 and 74, we still get a great kick out of it.
My advice is to be totally open about everything with your partner, keep your minds and bodies open, keep trying new things, celebrate when it works, shrug it off when it doesn't, and be philosophical about it. If you and your partner are agreed, you can do anything you want in the bedroom. Who's to say no? At our ages we don't have a huge amount of time left and we might as well use it to get the most fun we can.
Alan: I'm with you 100%. There are many other outlets that I find rewarding.
Btw, I can get an orgasm with a Viberect. I don't understand exactly how it works, because it's not at all like sex, where there is pleasure to the penis; the orgasm seems to come out of nowhere. It's not like it was before, but it's certainly better than nothing.
TJC: I have no feeling in my penis, and the implant people (and neurologists) say that this can't be fixed.
I had a counsellor who told me that I can get my wife off with my tongue and fingers. No shit? That's amazing! Believe it or not, I actually had had that thought. And we do that occasionally.
All this happened shortly after my 59th bday. It was a terrible loss, but, needless to say, many other people have suffered worse, and I've had a very good run untill this happened. Seven years later, I'm fairly well done with the anger, the grief, and, actually, the terror of a recurrence and more "treatment."
I've always cared about my wife's pleasure, but as things went downhill for me I've trained myself to get more and more personal pleasure from her pleasure. I know it's more of a psychological than a physical thing but, nevertheless, for me, it's real.
I have thoughts of doing the Eligard-break some day, but emotionally not sure I could handle the disappointment of having my PSA, etc. going against me. Getting prostate removed in Dec. 2015, and learning of metastases Sept. 2018, really knocked me for a loop. Just sayin.'
I hope your PSA stays low and your t goes up high .
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