I am close to deciding on a treatment plan of HDBT followed by 4+ weeks of EBRT. Also, would have 18 months on Lupron. Am a bit concerned with the possible Lupron side effects. Would greatly appreciate hearing from others who have undergone similar treatment and how things went with the Lupron? I was warned the side effects can include hot flashes, loss of bone density, ED or impotence, fatigue, Weight gain, and declining cognitive ability. Did your side effects go away after the Lupron treatment ended?
Thanks!
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GEECGEE
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I was 57 when I went on Lupron. I only had a theoretical four months of doses (one 30 day and one 90 day injection). The effects lasted wound down slowly, but by about six months they were pretty well done. When you get your last shot, say for 90 days, it should last full strength for the whole 90 days and then gradually wind down.
We don't really know the optimal amount of time on ADT. The RADAR clinical trial found evidence that 18 months is more effective than 6 months, but not less effective than 36 months ( see: pcf.org/news/18-month-adt-o... ). So we at least now have evidence that you don't need 2-3 years. I don't know if anyone has studied 9, 12, or 15 months.
Here's what I recommend:
Take Lupron for at least 6 months. During that time, exercise hard to keep up your strength and energy. Try to have sex. My guess is that you'll have no motivation but if you try to do it anyway, you'll find yourself getting aroused and enjoying it. Keep your spirits up. Stay engaged with life - you're battling a deadly disease and you're fighting it not just with drugs and radiation but with a commitment to living during the treatment, not just hating life during the treatment and waiting for it to be over.
After 6 months, take another injection if you believe you can handle it, and do it again and again until you reach 18 months. Your odds of success are good even without going 18 months, but they get better if you can keep going. If you can't stand it, then stop. It's your decision after all, not the doctor's. He's trying to give you the best chance he can for beating the cancer, but it is your body and your decision. My advice is not necessarily to go the whole 18 months, but to at least try to deal with the Lupron and stand it for as long as you can without quitting.
When I told my RO I am hesitant to go on Lupron fir 18 months, he offered an alternative to go on 150 mg of Casodex for 12 months and no Lupron. I’ve been taking 50 mg Casodex since April 2019, which was increased to 100 mg April 2021 with virtually no side effects. My PSA this week was 1.8, the lowest it’s been since diagnosis. This therapy treatment sounds appealing. Any thoughts on effectiveness of 150 mg Casodex instead of Lupron?
Casodex works by blocking the uptake of testoserone into prostate cells, not be reducing the production of testosterone. Its side effects are different, but they do exist, and they are stronger as the dosage goes up. See the FDA "label" for it. Here are some docs:
The Health Service in the UK was using Casodex rather than Lupron for years because it is dramatically less expensive, but I'm not sure that it is quite as effective.
It is generally thought that you need to be off the ADT as long as you were on it, until the effects of the ADT wear off. But it's been noted some patients never fully recover their testosterone levels... As for the side effects, it's like everything else, each patient is different! Not all suffer the side effects, or suffer as had, and some do experience the worst. As noted above there are some things that can be done to help offset those side effects and mitigate their impact.
The question is, does taking the ADT drug provide a benefit to the patient? And if that assumption is yes, then what's to lose?
Also, today, the newly approved drug Orgovyx is available, that is basically Lupron in pill form. There are advantages to this as especially for new patients who need ADT, of they take the drug and experience negative or adverse effects, the pills can be stopped! Whereas with the injection, the patient would have to wait for the drug to wear off. Additionally, the drug is better in efficacy suppressing testosterone, does so more quickly, and is less risk to those patients with heart concerns vs the injectable Lupron. Certainly something worthy of discussion with your care team!
I was on ADT for 24 months and experienced every side effect you mentioned, particularly hot flashes, fatigue, weight gain, ED, and some loss of bone density, plus mood swings and insomnia . Concurrent radiation for two months compounded the fatigue and mental fog, but those subsided within a few months of the last radiation treatment. The ADT side effects are not fun -- the whole thing is quite a slog, and now that I've been off hormonal treatment for eight months, the side effects are very slowly abating. My weight is still up and I still battle some fatigue, but I do see very slow improvement. The hot flashes are less frequent and severe than before, and I can feel them slowly fading away. Mood swings are less profound. My mental acuity is close to what it was before. The key, as others before me have said, is to exercise more religiously than you ever have, watch your diet, do what you can to stimulate your mind, and just go from one injection to the next. You WILL get through it. The exercise will help you maintain some strength, keep your mood somewhat in check, and you'll feel like you're actively engaging in an activity that aides your overall health. I also felt that it kept me from slipping into boredom and despair. In sum, there's no avoiding the side effects but you can moderate them and get through the whole damn thing.
As noted, each of us reacts differently to ADT. For whatever it's worth: one injection of Firmagon (1 mo); 3 injections of Lupron (each lasting 3 mos. I opted for more frequent injections because I told myself that I had greater control - I could deal with anything for 3 mos....or so I thought). I had all the side effects you mentioned plus many more. It was the worst experience of my life and it lasted for 16-18 mos. Everything from join pain (a trigger finger, btw), suicidal thoughts, messed up blood work, incredible fatigue, mental fog, dark and deep depression, and so on. A true poster child for side effects. Please note that some men's experience is radically different than mine; they complain about the occasional hot flash and maybe fatigue (I'm envious).
The only thing that seemed to help me at all was exercise (and it's one of last things I felt like doing but I dragged myself to the gym 5 days a wk and worked with a trainer to try to get the best workout I could).
You asked about how long these side effects last. Again, each of us is different. Wt gain has remained; muscle mass never returned. Sex drive has returned (for the most part. Erections, yes; orgasm, yes; ejaculate, no) but genital shrinkage remained (yeah, a real bummer). Cognitive fog is certainly less than during treatment but I'm aware of it still (perhaps just due to aging?).
I suggest you read "Androgen Deprivation Therapy: An Essential Guide for Prostate Cancer Patients and their Loved Ones." It provides a clear explanation of what to expect and helpful suggestions on how to navigate ADT.
Good luck to you. Hope your experience is better than mine was.
Trigger finger! Despite getting my care at one of the world’s great medical institutions, nobody there seemed to recognize my trigger fingers as an ADT side effect. The local go-to hand center knew nothing about the ADT connection either and offered surgery, which seemed totally off point. With ADT now eight months past, I still have the problem and have more-or-less accepted it as a long term issue. My biggest frustration with side effects has been the lack of expertise in helping patients manage them, particularly side effects that are relatively uncommon but nonetheless affect a significant number of people.
Here is my 2 cents worth. After IMRT treatments, I went on Lupron for the then recommended 2 years (16 of 20 samples positive, Gleason's 8 or 9, tumors grown outside the prostate proper.) I had my last 6 month shot about 1 year ago. In December, just for curiosity, I had my testerone tested: it was "9". My previous reading, before cancer, was 530.Just last week, it was retested and found to be 140. Progress! My radiologist seemed to think it would never reach anywhere near my previous level, however.
The side effects of Lupron were pronounced. Hot flashes, several a day, which I still have. Lethargy, even with regular exercise. Weight redistribution, rather than weight gain. Same weight but everything settled into my belly and groin area. No Libido at all. The bad news was I couldn't maintain an erection. The good news was I didn't seem to care. (old Lupron joke among a few friends in the same boat).
I developed muscle cramps about one year in which thankfully seem to be abating now that I am 6 months clear of the end of the last 6 month shot.I am now 68. I hope for some renued sexual desire and ability but can live with my decision to stay on Lupron for the full two years. A word of warning, however. If you have a heart problem, do some research about the use of Lupron. Perhaps Tall Alan has some info on this.
I would stick out some variation of ADT for at least 18 months and tough it out. Your immediate sacrifice in quality of life sucks, for sure, but in my case all the best medical advice and my own research indicated it was the best course to insure long term success in recovery from this cancer. Good Luck.
The first year on ADT was ok— mostly light SE’s like muscle fatigue and about a 10-15% loss of strength and cardio. Then, after a year, joint pain started to creep in, apparently due to ligament weakening and slight bone loss of 8% acc to a DEXA scan after 18 months total ADT. Didn’t take any special supplements, but was very active and had a good Mediterranean diet.
I went through 18 months of ADT -- 6 three-month shots.I was fortunate to largely escape some of the side effects, such as hot flushes, fatigue, and debilitating mood swings. I think I lost some bone density, and gained feminizing weight around the hips, and now pubic fat nicely obscures an inch of penile shaft. Yet, I was able to keep a reasonably positive attitude during the whole 18 months.
My oncologist -- the one who personally prepped me for the 43 radiation doses -- said in an annoyingly casual way about what to expect on ADT -- "Oh, you'll be impotent." Was that cast in stone? Was that inevitable?
I began reading up on men's experiences traversing the ADT "sentence" -- and found the shocking statistic that 75% of men who go through ADT are essentially finished with their sex lives emerging from the treatment. What a sad outcome for something that helps save lives.
I swore that I would not let that happen -- that I would be able to have a sex life -- during and afterwards.
How? There's the delightful penis pump, which, even though it produces an erection, is somewhat clumsy to use. And the erection is...different.
It's a weird experience -- the "loss" of libido in the first few months of Lupron. It's disorienting to find yourself bereft of the desire for sex or even for erections. The reason I put quotes around it is that libido has been put to sleep -- but is still there!
Did I perhaps have something other than the standard tool kit for preserving erections during the course of ADT -- pump, viagra/tadalafil, Bi- or Tri-mix injections??
YES, I did! Some years back, while in an experimental mood, I had fashioned a ridiculously simple device I called the Loop. It was this device that was my secret weapon. Granted I was nearly fully potent at the start of the 18 months -- but I could really feel the lack of giving a fuck about getting daily erections -- but I did it anyway. The device is not a constriction ring; instead it primarily acts by pulling, and putting pressure on the perineal area.
In my experience, throughout the course of treatment and now afterwards, the Loop NEVER FAILS to produce an erection. Since I was a recent enthusiast of edging, the fact that most of the time I failed to orgasm wasn't a factor -- it was all about getting that great erection and keeping it for 15 or 20 minutes.
Avoidable mistakes: 1) the urologist should have put me on tadalafil on day 1 of ADT -- because it bolsters nocturnal erections and therefore minimizes shrinkage of length, girth and testicles; 2) I took myself off tadalafil a few months after the "end" of ADT -- except the T was still very low for a few months, so I think that mistake led to some shrinkage. Going in, I was 6.75 inches; now I'm down to 6 inches -- with the pubic fat concealing another inch.
BUT! Libido and erectile ability were preserved. I have discovered that I want men, and -- because I used the Loop during ADT -- I've now been able to be a pretty good top (with the aid of resumed tadalafil), yet I don't need the Loop to achieve penetration, I've found to my delight.
Bottom line: I will send to your email, for free, my instructions for making your own Loop in about 5-10 seconds -- like I've done with perhaps 100 others in these groups.
Use the Loop and save your erectile functioning! Your genitalia may lose some size, but your package will still work!
Have courage -- you can get through ADT and still be able and willing to have fulfilling sex.
That's basically my story with prostate cancer treatment. PSA is still low, and testosterone crept back up to 250 by a year afterwards.
Oh...are re erections. I joined a study (advertised by MaleCare) that provided meds, "toys," and penis pump. All were very helpful. The pump was a new experience; took some time to get use to it but it worked. "Worked" in terms of getting an erection but did not nothing to prevent the shrinkage. The downside was that I had zero desire at all but I forced myself to pump nevertheless. The pump was manufactured by NuPath. Consider it.
At 67 less than two months before 68 I was diagnosed with G9 aggressive pca. Started Casodex for a month then Lupron for 18 months. In March had weeks if IGRT followed by two treatments of High Dose Bracytherapy. Along the way I haf mild hot flashes and some low energy at first but ended after about 8 months. Had ED before so pills helped and the shots too for a while. Sexy wife helped too. My suggestion is to not worry or be negative. Choose the positive Happy life. 98% make it 5 years; I am at 6 and counting.
I really appreciate everyone sharing their stories and providing me encouragement. Thank you! After this information and other research I’ve done on ADT,I’m now reconsidering surgery rather than radiation and Lupron. Recent MRI indicates the cancer is fully contained in the prostate. The surgeon says my circumstances are favorable for a good outcome with surgery and no Lupron. Any strong arguments against surgery? Thanks!
You'll get arguments against surgery because if the potential side effects! But all treatment has side effect profiles, none are immune to it. The side effects seem to be more pronounced the higher the risk the patient is. But there are things that can be incorporated to try and mitigate that. First is making sure to obtain an accurate diagnosis, ensuring it has been at least 2nd opinioned by another oncologist, especially one not vested in the treatment being proposed. Second is to get to a Major Cancer Center and one of Excellence! Experience wins in the game, and this one element of it should not be easily dismissed!
I try to recommend that we as patients not get cought up too much in what therapy is best until all the data is in, those tests that will help shape the picture and that we've shopped the answers around a bit. Then we can decide what might be best. I too, early in, chose to avoid ADT & RT based upon testaments to the contrary largely due to experience with side effects. This is spite that the ADT, RT & HDBT in all probability at the time was the best choice I could make. Since then I've learned a few things!... One is to understand that those who experience favorable results from their cancer treatment, generally do not come online gushing about how well they're doing! So you must understand the internet is not the best source to form an opinion. The other is again, diagnosis and staging and make ching that to your expectations as to the result from treatment that you want. Morbidity and Mortality are two separate and distinct things and destinations we might arrive at from our treatments. And they can be mutually exclusive! What you want and what I want won't be the same, and our cancer is not the same either. Even when placed into those neat little boxes of staging risk assessments. Finding the right shoe to fit the foot is the trick! Some want the best effect on their cancer, some want to try and not experience side effects... But using a feather when a hammer is due, usually results in buyers remorse! So choose wisely! Don't expect to find unicorns, because there are none in regard to cancer treatment! All that is and will be is known, but when we venture outside those norms, is when we can expect the unexpected. This doesn't mean the unexpected will be in our favor.
I recovered Sexual Function and Continence nearly 100% after surgery within a few months. But went right into ADT & RT for persistent PSA. Recovered again nearly 100% before persistent and metastatic disease presented itself. Even without drugs things worked well, but definitely better with drugs! And I will attest this to the expertise of those handling my care that I entrusted to my body! Surgery has shown it's benefit, especially to advanced patients who have debulked their cancer. But weirdly, for those same advanced patients, down the line, we all end up in the same place anyways, lol.
Hi there. I'm 10 months into Lupron on a 12 month plan so I've had my last injection. I've avoided most of the side effects with the exception of hot flashes which are annoying but not a big deal in my opinion. I exercise daily with 30 minutes on an elliptical, with 60 minutes of weights every second day and 30 minute walks. I use a vacuum pump to simulate erections every few days purely to keep circulation going along with some genital massage and a blast of cold shower daily. I take calcium (600mg) and vitamin D (1000 IU) daily. I also take low dose Cialis daily and Viagra as needed and I've been able to have intercourse although libido is low. I've had no significant fatigue and I've actually gained a little muscle mass. Bone mass tbd but I'm hopeful its ok too.
See my recent post concerning sexual function. During the 18 months of ADT, I had the usual hot flashes, muscle loss, weight gain and emotional changes. Nothing I couldn’t work through, but definitely annoying. I had quite a bit of gastro issues for weeks after ebrt.
I completed the 18 month ADT last October. Fat is disappearing, muscle coming back nicely. Through it all I never lost sexual function what’s so ever, just the desire. If I could say during treatment I was maybe 40% of Me, I feel like I’m back to around 80% now. And that is certainly al pleasure!
I’m very happy with the course I chose, and wouldn’t change a damn thing!
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