So 1 week ago today I received my first Lupron Shot. So far I haven't noticed anything different, but I hate just sitting around waiting for the other shoe to drop.
For those of you who are or have been on ADT, especially Lupron, how long after you started did it take for any side effects to manifest themselves?
I got the first hot flash around 2 or 3 weeks after the first shot. Other side effects are slower such as loss of libidio, loss of bone and muscle mass and moobs. Those can take months or even years.
I'm 2 years plus into it, so I have all of those now. But I'm very happy to be alive so I don't think or complain about these side effects much.
Usually, the hot flashes start first at 3 weeks to a month.. Then an unnatural fatigue and a loss of endurance maybe..Stay active and exercise ! Fight the weight gain !
Right now your testosterone level may be higher than normal due to the "testosterone flare" caused by Lupron and related drugs. It's a good time to crowd in all the sex you can get 
A week from now I expect your T level will be below normal and the hot flushes can be expected in two to three weeks.
Hot flushes are not fun but, every time I got one, I told myself, "Ah, proof that the drug is working against my cancer. Hooray!"
Be sure to engage in regular exercise to keep your energy levels up.
Best of luck.
Alan
I am two months into Cosadex and one month in to Lupron. The only side effect started at about ten days after start of Lupron and that was some fairly severe fatigue and some sleepless nights. Hot flashes have been slight. The fatigue after four weeks seems to be lessening. I played golf last week and had to quit after nine holes but it was a start to move back to a near normal life. Don't let this stuff get you down. I am 80 and plan on 90 if the good lord is willing. This site is a good place to learn and get advice.
Tell the truth, you quit after nine holes because each hole you were at least 8 over par....
You'll make 97 years old just standing on your head.... TRUST ME.
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 06/18/2019 2:47 PM DST
You just insulted my golf game or you just complimented it. I am keeping that a secret.
Now that's funny... thanks I needed a good laugh....
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 06/18/2019 4:06 PM DST
It was about 6 weeks until the hot flashes and fatigue hit for my husband on a 3 month Lupron injection. That was 15 months ago. He only had the one because his side effects were so much worse than for most men. We are still dealing with the most severe side effects...panic attacks, significant depression, and loss of short term memory and cognitive ability.
I had a similar experience, 30 days of casodex, tolerable side effects (I got this), 3 month Lupron shot at 6 weeks was like I got hit by a bus. I have the aggressive Ductal form (Gleason 9) with 7 small liver mets found on Pyl PSMA scan (Stanfod trial my request, not the VA.), no bone mets. I refused the second shot 6 weeks ago because of symptoms you described, except I was so wound up on the refusal, it took them 2 hours to talk me down off the cliff. I have a melt down almost daily and breasts Dolly Parton would be proud of. 8 months post prostatectomy and this is the only treatment I have received from the Palo Alto VA. They tried to do a liver biopsy via ultrasound and CT and failed to see my liver mets, so no biopsy. Testosterone currently less than 10. I see my Oncologist today to go over their plan of inaction. Every time I talk to him I get 5 years taken off my life...15 years, 10 years, now a 30% chance of five years (I know, stop talking to him...). Unless he has a plan without the word chemo in it, I will request a testosterone replacement shot. gasoline on the fire be damned. not everybody is cut out for these barbaric treatments from the 1940's. They have a cure for AIDS now, glad the medical industry has their priorities straight.
Can you tell me what you guys are doing about testosterone now, or your current selected treatments? Your husband is lucky to have you, My wife, who claims to love me, has to be coached to hug me when I start my melt downs - they are not 'mood swings'. Go hug him right now. I wish you all the best, you are not alone.
Seebs are builders...So grab your wife when you have a melt down and build a fire with her on the coach. Hug her and whisper in her ear "that the life insurance policy is not paid up" and see how fast she hugs you back.
BTW All of us give you a great big hug 🤗
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 06/18/2019 2:56 PM DST
John, there is always a class clown and I nominate you the 2019 class clown of Health Unlocked. You cheerup all of us. Keep it up, and God bless. God does have a sense of humor: Why else would he have made you!🤪
to Drphil1938,
Now that hit my Laugh Richter Scale with a magnitude of 19.38.
Thank you. I appreciate all the humor I can get...
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 06/18/2019 6:13 PM DST
I would someday like to meet you, I live in the St. Louis area. Where are you? General area?
I live in NYC.... I'd like to meet you too.... I bet you can tell me some war stories... I don't play golf.... can't even watch it on TV...
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 06/18/2019 6:22 PM DST
We have miles between us but we can still appreciate good humor via modern communication. I want to die laughing and l think you do, also.
What is the benefit feeling sorry for ourselves. Grab life and love it, every little bit is worthwhile for us or someone else. The value of a smile is incalculable. Also, never leave your morning mirror without smiling at the guy in it. If he smiles back your in for a good day.😀
Agree 100%.... I told my wife if I don't have a smile on my face when I die, then she should shape my lips into a smile.... even if she has to use duct tape.
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 06/18/2019 7:41 PM DST
The standard Leupron side effects like every other therapy varies tremendously between individuals.
Fight the fatigue through exercise and healthy diet.
Treat pain so you can sleep.
Be active with friends and family.
Enjoy all you can. Attend support group meetings to learn from experience.
2Dee
As others have noted, it'll be a few wks before you'll feel the effects. But (hate to be a downer about this), when they hit, they hit hard (that was my experience). May I suggest "Androgen Deprivation Therapy: An Essential Guide for Prostate Cancer Patients and Their Loved Ones"? Excellent layman's guide to what to expect and suggestions for dealing with side effects. It's well written and upbeat (and you'll need some upbeat; Lupron can trigger significant emotional reactions - sadness, depression, despair, crying jags).
Unfortunately, when I saw the list of side effects, all I could say was, "check," "check," "check, yup, got that one too." The only thing that has helped me at all is exercise and I am hardly a gym bunny; more of a gym slug. But, I force myself to go and work out on machines and cardio runs on the elliptical. Alas, still put on 10+ lbs. Not pretty.
Make sure you get a DEXA scan to assess bone density; Lupron affects bone density. But exercise and over the counter supplements (calcium and vitamin D) can help. While the obvious physical and emotional side effects are difficult to deal with, it's Lupron's silent affects that are troublesome: bone density, cardio, blood work, diabetes, cognitive impact, and so on.
The hot flashes are annoying as hell; particularly if yours occur at night. Insomnia is a constant for me now. Naps and rest periods are now part of my day.
Genital shrinkage is a real blast. NOT. Still unclear if my parts will return to pre-treatment size or not. With zero interest in sex, sometimes I just don't care. BUT, if you have a partner/spouse, he might care a lot. Just saying.
Lupron "starves" PC of its "food" but it not a cure (not sure how all of this works. Seems if you starve something, it dies. Not true with Lupron). BUT, it does work (oh, be sure to talk with your doc about different Lupron regimes. There's a lot of new research about how long to remain on it; optimal duration). I chose 3 mo injections; it gave me a feeling of control (I can endure anything for 3 mos! LOL). Started with 1 mo of Firmagon and now 9 mos of Lupron. Last (I hope) injection was in May. Hope testosterone returns by end of the year.
Good luck, man! Hope you have a better experience with Lupron than I've had. It's been brutal for me.
EdinBaltimore
Hi Dude, Everyone has a different experience. Tomorrow I get my 3rd Lupron shot (1 every 4 months). So far my ADT has been (Casodex with Lupron and now Lupron with Zytiga and a side of predisone). The only side effects I've had is loss of Libido and shrinkage. Also, no weight gain. I'm Gleason 9, stage 3. Basically, I feel fine. Good Luck!
Thank you all who commented. It is a great comfort to at least have a clue as to what is coming. The medical people I deal with have all been thru this thousands of times so they tend to gloss over things, and speak in statistics and tendencies anyway. It's my first time and I find the actual experiences of actual people vary valuable. Thanks again!
Seems to take a while, and they seem to build. I started getting hot flashes first, never too bad, but noticeable. Probably started a few weeks after the first shot. The fatigue has never been debilitating for me, but is also noticeable. I used to surf nearly every day and after 8 months of treatment. I don’t get out as often or surf/paddle as well or for as long, but I still do it a few times a week. The six pack abs are gone, but so is any detectable PCa. As mentioned, I think the effects are building up, but they have never been really pronounced, and all in all have never been too dad considering the benefit. Your mileage may vary. Good luck!
I think the guys above have outlined it for you, and made the point that everyone is different. I had hot-flashes from a few weeks into my first 3 month shot and thought "that's not so bad.." - now coming up on my 3rd 3 month shot this Friday - the hotflashes are more frequent and many are at night. I used to like to sleep warm and my wife cool. I'm now sleeping cool (light jammies and just a sheet over me) - and it's tolerable.
I'm on the 18 month course of ADT following RT - I figure with the next shot I'm half-way there, almost, sorta, mebbe. My T is "castrate level" - ie - about 6.. (below 18 is considered castrate level.) But - upside - after 45 radiation treatments and 6 months of ADT, my PSA is now undetectable. I'm hoping it stays that way after I'm done with the Lupron.
BTW - My urologist (who will be jabbing my butt Friday) last time I was in mentioned if the hot-flashes or night sweats get too annoying to see him - apparently they can help with that a bit.
Oh - one other side-effect that hasn't been really mentioned. My cholesterol levels have never been good. They've gotten worse since I'm on Lupron. I do take Atorvostatin for them, but I may have to increase the dose to get that back in line. I haven't gained any weight - but I'm at the gym 3x a week.. what did happen is all my butt fat moved to my stomach, so my pants now fall off. I think I'll be wearing suspenders soon.
As soon as you stop drinking that good ole Irish Whiskey...
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 06/18/2019 2:40 PM DST
Spoken like a true Irishman....
As they say in Ireland "Fook Cancer"...
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 06/18/2019 2:58 PM DST
My husband started about two and a half months ago. Nearly due for the next one. He had no side effects at all until about three weeks ago and now he says he just gets 'warm' feelings. He's doing the Lupron Man Plan and goes to gym twice a week and has lost weight two things he never would have contemplated but for the Man Plan.
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