my biggest fear since this began has been reading side effects from ADT (especially being relatively young, having a very attractive wife and excellent, mutually-satisfying sex lives.
I’m over 3 weeks into Lupron (3 month).
Zero side effects.
Not complaining, but wondering if this is fairly common, or if it takes quite some time.
(It did seem like I had a “spike” the first couple days - was highly energetic)
I think it was 4-6 weeks when I was first on Lupron before the side effects started.
The energetic spike you felt may have been caused by the testosterone flare that occurs when one initially starts Lupron. As I understand it Lupron causes the body to greatly increase testosterone production until the body ‘overheats’, for lack of a better term, until the body shuts down testosterone production. That is why Casodex (Bicalutamide) is usually given when first starting Lupron as it stops the body from absorbing the testosterone it produces. That flare can cause an increase in cancer cell production that can cause some nasty symptoms to occur.
I also felt great during the first few weeks, but side effects started arriving soon after. Hot flashes were first at about a month, then loss of libido (2 months), then muscle loss and fat accumulation in strange places (around 3 months), and finally significant joint pain at maybe 6 months in. I'll be honest, it has been pretty tough to deal with sometimes. The good news is that after more than a year I think we finally have the hot flashes and joint pain under control with Veozah and Celebrex, which has improved my quality of life considerably.
It may be a tough road ahead. If you have serious side effects like I have (the hot flashes were STRONG and hitting rapid fire), keep pestering your MDs to try things that might help. Increasing the quantity of life without maintaining an acceptable quality of life is pointless.
Have you been monitoring your loss of bone mineral density (by DEXA scan)?
Excellent !
If your Veozah is too expensive, you may want to consider switching to transdermal estradiol (tE2). It will stop the hot flashes, and make you start growing bone after losing a lot (most likely from the ADT). It will also lower your bad cholesterol and glucose levels.
I didn't have noticeable side effects for about 6 months then they hit. I would advise that you start a gym routine that includes lifting weights. It has all but eliminated SE's for me and I have restored lost muscle
I’ve been lifting very heavy for decades - now trying to maintain as much as I can (benched 320lbs last week), so that has been the most encouraging thing about this ADT/SE situation. Going to lift very hard a couple says per week, and brisk walking and light cardio a few more days per week for a total of 5 active days with a couple off days.
We shall see.
As the others have said, when you start Lupron, especially without Bicalutamide/Casodex, you initially get a Testosterone boost so you actually will feel better than before you were on it.
But that only lasts a few weeks until your testicles become "worn-out" from the extra boost and it is only then that you'll begin to feel the "not quite as fun" side-effects.
It will be an adjustment for sure but we've pretty much all been through this here.
Best wishes and best of luck to you.
Side effects start later, often not for 6 months or longer. Loss of libido is the issue more than ED per se. Keep up all the sex and penile rehab you can to prevent permanent shrinkage and possible long term ED.
Keep lifting too no matter what. It is by far the best antidote for all the sides, especially the fatigue and belly fat from slowed metabolism that the drug is known for.
Your experience is fairly typical. If ADT was a hurricane, you are currently in the eye of the hurricane, and it may get pretty windy. I think I started to notice the ADT side effects in about 6 to 8 weeks, and I got to enjoy most of the common ones. Of course everyone is different, and you seem to have the exercise thing under control, so here's hoping that your side effects are minimal. But don't be alarmed if you start experiencing some of the downsides of ADT, because it's not nice to fool Mother Nature. (Lupron overstimulates the thyroid gland in directing the testicles to produce testosterone, resulting in the shutdown of this function.) 🦊
You may want to check where your testosterone level is. I started with Eligard and 2 months later, no SE's at all. Thought it was a piece of cake. When my radiation treatments were nearing the end, we checked my T and it was still around 450, just where it was the day before I had my first injection. Turns out, the Urologist's office somehow incorrectly injected the drug (or prepared it incorrectly), leading to it not working. Had to switch to Firmagon to get the immediate drop.
Hi Danny . Sorry to hear about your prostate cancer diagnosis. I was diagnosed with G9 at age 69 (3 years ago) and had a RP (surgical removal of prostate). Initial tests revealed no spread. Unfortunately, 6 months later I had limited spread to on spot on my spine treated with radiation (successfully). PSA continued to rise. Another PSMA PET revealed another positive node in my pelvis. Consulted highly experienced medical oncologist at Johns Hopkins. Immediately had the full court press with triple therapy (Chemo with taxotere, Darolutamide and Lupron) Ten weeks after the triple therapy I had 37 radiation treatments to my pelvis. My PSA went undetectable after the second chemo infusion and has remained there. I was taken off the Lupron after one year, off the Darolutamide after 3 months, 4 chemo infusions.
I experienced what you did after my initial Lupron (3 month shot) injection. The Lupron stimulates the pituitary gland to release hormones that cause the testicles to release testosterone and so for a few weeks your T is abnormally high. It then plummets. Most men (me included) experience hot flashes, fatigue, loss of libido and muscle loss. M
Most radiation oncologists want their patients on Lupron during and after radiation to enhance the radiation effects of killing the prostate cancer (especially important with a G9). The length of time on Lupron is controversial. Some say as little as a year (or even 6 months), some say 18 or 24 months. The longer you are on Lupron the slower the recovery of Testosterone after it is stopped. You should have this conversation with your doctor.
While you are on Lupron you need to continue erections. Daily Cialis 5mg is frequently prescribed by the urologist to keep blood flowing in your penis. If you are getting natural erections-great!! If not, consider a vacuum pump to keep the penis stretched while you are on the Lupron.
You should have a talk with your radiation oncologist and urologist about the penile/sexual side effects of treatment and how you can ameliorate them if you haven't already. Unfortunately, most docs don't just offer this conversation.
Good luck to you!
Very good reply - thx, and good luck!
hi Danny. Welcome to the brotherhood that no one wants to be a member of.
LUPRON takes a while to take effect compared to OGOVYX which lowers your testosterone to castration levels typically in three weeks.
I have been on ADT for over six months now and still have a little libido left. Nowhere close to what I used to have but considering that I’m dealing with severe ED at the present time and have to take injections to achieve an erection suitable for intercourse. I suppose it all evens out.
If I can give you one piece of advice, it is: start working on your nonsexual intimacy ASAP. Sit together and watch TV, hold hands, touch each other a lot. Hug. My wife and I have been married for 44 years and after both of us had very busy careers. We didn’t realize it, but the core of our intimacy together was sex and when that went away after surgery, I’ll be at temporarily, we were lost and we’re still working to find our footing. Most of that is on me, so don’t make the mistake I did. ADT doesn’t last forever, but a good marriage should.
Good luck to you and your wife on your journey together.
That's good advice!
Very good advice.
My wife and I have worked together for over 25 years - we are (almost) ALWAYS together- and very happy. We’ve talked about the varying possibilities- good and bad, and we will make the best of it. I’d guess some would say we are overly intimate - ha! But, seriously, best friends - I feel more sorry for me at this point!
Glad you are figuring it out - seems far from too late - and I wish the best for both of you!
thank you much. I’d like to share one more thing because it’s relevant. After being on ADT for almost 7 months now, I understand what many women go through during and after menopause. Little or no libido, brain fog, fatigue, osteopenia; goes on. With ADT, the onset is rapid; kind of like a woman who had her ovaries removed. With menopause, estrogen and testosterone levels drop steadily overtime until genital urinary symptom disorder starts happening. My wife and I realize that that’s the point she’s at now and has an appointment with a woman physician who specializes in postmenopausal women and sexual dysfunction. She will probably be prescribed some form of hormone replacement therapy.
My wife’s prior OB/GYN told her that it’s all a natural part of aging, pain with intercourse is just par for the course and that she should suck it up . The reason I’m sharing this is because at some point, your wife may experience the same situation and my recommendation is that when she hits menopause, she is proactive and doesn’t settle for anything but a great healthy life. Good luck on your journey together.
Husband much older (78) but started quarterly Lupron in March. Side effects to date mainly some fatigue and hot flashes (which low dose estrogen patches have mitigated). His flat stomach grew a little belly immediately. That’s actually the worst SE IMO. He does weights but it’s stubborn. He wss given one Lupron shot years ago after a procedure and doc said nothing about viagra so activity stopped for a year!!. Not so this time. Now a half pill as needed works fine or sometimes uses a c-trimix injection. So even with T down to 9 boots still knocking several times a week. Your brain controls so much of desire with the little blue pill as an assist. You should be fine.
Nobody can say what your side effects will be ... except you. When your testosterone gets around 10, you should start feeling whatever side effects there are going to be. But whatever the case, make the best of it.
Caution, worse side effect is your dick starts to play hide and seek on you.
Good Luck, Good Health and Good Humor.
j-o-h-n
Please, only jokes that make me feel BETTER - haha!!
Ugh, not looking forward to what’s coming (or not cu…)
Hi Danny. I'm G9 (4+5), similar to you. I've been down the same route except I took a month of bicalutamide when starting ADT (prostap) and I also had 37 sessions of RT. I work out 5 or 6 times a week at the gym in classes. I find those get me to push harder than exercising on my own, typically they are a combination of aerobics and weights. So far, after a year of the ADT, my SE's have been limited. I get muscle ache from the exercise but I can work through that. I get limited brain fog, though that may be down to age! I have lost some hair down below. I have put on about 1kg but my hip, waist and chest measurements have all increased by 1cm so I'm pleased about that. Fortunately no hot flushes. The biggest effect has been on my sex life, I've lost quite a bit of libido. I can get erections and climax, but it's hard work and about 10-20% as intense as it used to be. But I am 73 so things were winding down a bit anyway.
But you are on the best treatment. Even at G9, we have a 90-95% chance of no recurrence.
If you keep up the exercise, you can hopefully come out the other end with a retained sex drive. Best of luck!
Very encouraging- thx.
Being a heavy lift guy, I’ve sort of been in “pain management” for over 20 years! Hopefully, I’ll be okay with that. Brain fog is bad - I don’t HAVE to work, but I still do a lot of very technical things…
Yes, the crushing of a great sex life is horrible. But we will get through (35 year wifey is amazing!).
I keep thinking: If I can be 70% of “current me,” I’d be very pleased…
I’m ready for the full pelvic IMRT and ADT for 18-24months (I’m doubting id do the 36 months unless REALLY convinced 24 would not be enough).
I have about 17 months to think on it - I don’t want to do something stupid at the very end, but I’m hoping that docs think 24 is sufficient, and I’d love to hear 18!
My sentence is 2-3 years of ADT. There is a report which says that 19m is optimum: urotoday.com/conference-hig...
My urologist is happy to consider making the last injection next June, at 18m, given that it would take 6m to clear the system. But like you, I don't want to screw up at the last moment.
We have found taking creatine and essential amino acids (BCAA) after weightlifting has helped a lot with muscle soreness.
Yes, I take creatine. I have found that my muscle mass has increased a bit since starting it. This is my muscle weight according to the Bodytrax machine at the gym with the latest result this morning:
06/05/24: 65.7kg
22/08/24: 62.3kg (started creatine)
13/11/24: 63.5kg
Hopefully some testosterone will come back next year when I stop the prostap.
I can't put up the link on this section of HU as it will be deleted but suggest you might find this podcast very helpful. You'll find it on YouTube by searching GU Cast and the relevnt episode is with Victoria Cullen and called A Touchy Subject. Humerous but also very informative and better still practical. The other episode that might be of interest is on same podcast platform titled Patting the Shark and there's a book of the same name.
you’ll feel it in a few weeks!
DannyMan, it appears your PCa is still localized in the prostate and has not spread to lymph nodes or bones etc. (If the Pet scan is “negative.”) With RT and ADT, you could be cured. This site is for individuals whose PCa has metastasized outside the prostate. For us, a cure is very unlikely—we will instead move in and out of remission at best, hopefully with long periods of remission depending on the success of treatments. Regarding ADT, like you I was very hesitant to start the drug. One thing I really appreciate about my RO was her recommendation to use Orgovyx. The best thing about it is not having to face painful injections. But it’s expensive and may not be covered by your insurance. Because Lupron is administered in a hospital or clinic, it’s treated differently, at least by medicare. Orgovyx has fewer SEs and I’ve tolerated them well. But you are about to find out what deleting your testosterone does to a man. I can tell you that I’m a changed person because of it, (in many ways for the better). In your case, you may be able to go off ADT after two years—a common regimen—and recover your T and regain intimacy. For the older among us, it’s doubtful. I wish you all the best in your battle against PCa.
the only side effect I had was a lack of interest in sex.
Xtandi side effects
Help with side effects 
Xtandi side effects 
Zytiga side effects 
Delayed Eliguard Side Effects
