How long do Lupron side effects last after treatment concludes?

@txaiman
You say the genetic test “put you in less than a positive position” what do you mean what genetic issue did they find?. I had treatment similar to yours and 3 1/2 years later it came back the first time in 2 1/2 years later after radiation. Turns out I have BRCA2 a genetic problem that caused it to keep coming back and is very aggressive.

It’s really great to hear your PSA is staying down, But the annual tests are really important to make sure it doesn’t come back. I personally would want them every six months for at least a couple more years.

What is your testosterone level? The side effects you’re feeling from ADT should go away after a couple of years following stopping the drug. You want to keep track of what your testosterone is? If it doesn’t continue to rise, you can get testosterone injections Which can make you feel a lot better And bring back desire. I would want a testosterone test at least every three months to see what’s going on. They could do PSA at the same time of course.

The question is, what was your Gleason score? What did they find in your biopsy?

Were any of these things found in the biopsy intraductal, ductal, large cribriform, Seminal vesicle invasion, EPE or ECE. (Extraprostatic extensions extra capsular extensions). They can make the cancer much more aggressive.

2 1/2 years ago PSA increased to 6. Biopsy 3+3 Gleason.
Dr. said I would probably die from old age before PC
did anything…I was 69. Then asked me about relatives
who experienced cancer, my mom had ovarian cancer
but luckily caught it early. He suggested a genetic test, which came back putting me in a less than positive position. Decided on getting Da Vinci’d. Dr. said the cancer had just started breaking through the capsule.
He automatically takes out nodes any time he does the surgery, so I was grateful for my decision. After 3 months had a PSA of .2 which is the break off point for further action…8 weeks of radiation and 2 years of Lupron (shot every 3 months) . PSA went down to .013
which Dr. said was virtually undetectable. Took me off Lupron and tested me again 6 months later…PSA still .013. I now will get tested every six months for 2 years, and if the PSA remains low, will get tested once a year
for the rest of my life. Now 72 years old. Radiation was easy, but incontinence was main negative, now more manageable. Lupron sucked. All upper body muscles
dropped to fat belt around my waste. Lost all energy, but feeling better now. No sexual desire, major decrease in organ size and testicle size. ED has stayed. The only thing I discovered was I could still reach orgasm by treating my ‘unit’ like a clitoris, which surprised me. Just waiting for what the future will bring, with fingers crossed. Good luck to you all.

@jaydubyap Six months after 20 proton treatments and a three month Lupron shot my Testosterone was 100. I started TRT three years ago against my urologists' advise and am much better today. I have had testosterone tests where it came back over 700. If I do not medicate myself for 3 weeks my testosterone is still above 500. My sex drive is nothing compared to what it was pre treatment but I can get excited and can watch a tv show just because there is a pretty girl in it. My urologist cannot complain because my PSA just keeps going down. When I started TRT my PSA went up to about .22 and slowly went down to .1 over six months.

@jeffmarc Thank you. I had read much of your commentary before posting. Some of what you wrote prompted my question about TRT. I will be asking my oncologist and GP about that if I don’t begin to see some recovery and relief with my first post-ADT blood draw in early September.
P.S. I tried gabapentin with little relief and more side effects. Once again, thank you.

I was diagnosed in 2010 at the age of 62. I decided to have a prostatectomy since my father had radiation and died of prostate cancer. 3 1/2 years later, it came back and I had salvage radiation. I’ve had three more reoccurrences since then, but after 16 years, I’ve been undetectable for the last 33 months with Orgovyx and darolutamide.

I was on zytiga For 2 1/2 years, but only was undetectable for one month. After I stopped it, they found a metastasis Wrapped around the L4 of my spine. I had three sessions of SBRT radiation and they seem to have zapped it successfully. I am 6’4” and weigh about 192. I walk on a track a mile twice a day every day and go to the gym or do weight exercises at home three days a week. That really helps with eliminating the fatigue, I have never had it even though I’ve been on ADT for over eight years. I found out about four years ago that I have BRCA2 and that is why my cancer keeps coming back. One reason I can walk without pain is that I’ve had both of knees replaced, but, I still get joint pain walking so I take 600 mg of gabapentin three times a day and it resolves the problem. You might want to talk to a doctor about that, Maybe give it a try.

When it comes to testosterone levels and getting your libido back, you could try estradiol patches they seem to help a little in the extra Estrogen gives you a little bit more desire. The latest trials of TRT have shown that it doesn’t really cause the prostate cancer to come back most of the time. If it does come back, you can go right back on treatment. I know a lot of people that are just on Darolutamide And it keeps their PSA undetectable. The only problem is that it does suppress testosterone, Even if you have a good amount of it, And you may get some of the side effects that ADT gives you. The same, however, is true of all the ARPI drugs.

Here is some information from the PCa commentary about testosterone returning after treatment

Examples of the relationship of the duration of ADT exposure to subsequent recovery to their
original T levels after stopping ADT are as follows:
- After 3 - 9 months of ADT nearly all men fully recover by about 10 months;
- After 18 - 24 months of ADT only 60% fully recover by about 3 years; and
- After 36 months of ADT exposure only 50% fully recover by ~ 5 years.

It is clear that after receiving ADT for longer than 6-9 months many men never fully return to their
T baseline. This raises the very important question of whether it is safe to offer replacement
testosterone in symptomatic men who have been rendered persistently hypogonadal (<230
ng/dL).

You only had a Gleason score of 3+3. These days that is considered pre-cancerous and that nothing should be done, Go on active surveillance. About 14 years ago, they stopped testing men for PSA because too many men were being treated with a 3+3. Unfortunately, we were seeing very aggressive cases now that a result of people not being tested.

One thing you may not have been told is that when you had proton radiation on your prostate, they also radiated the nerves. Allowed you to get an erection for a while, but it frequently goes away over time. There are a lot of solutions to that, come back and ask about it if it is a problem.

I’ve been encouraged by what I read here about testosterone replacement therapy. I’ve always been lead to believe it would be akin to suicide for someone who has/is being treated for metastatic prostate cancer. My case study has a unique “situation” attached….aka divorce after 38 years of marriage. My case:

I am currently 70 yo. I was first diagnosed with localized prostate cancer in July of 2011 at age 55. My PSA rose from about 3.4 at my annual exam in the prior November to 6.6 prior to treatments beginning in Sept 2011. My Gleason score was 3+3=6 and my T was in the low 300s. I opted for 9 weeks of Proton Therapy and I was told my results were textbook. My PSA slowly declined over the next 8 years reaching a low of about .04. Over the following three years I noticed a gradual increase in my PSA but my GP didn’t seem to be concerned (perhaps because it was <4 it was “normal?). In March of 2025 it had risen to 1.1 at my annual. My GP wanted to see me again in 6 months. I checked it on my own a couple of weeks later and it was now up to 1.3. I emailed my GP and he wanted to check it in 3 months. That wasn’t good enough for me so I scheduled a visit with my Uro. He didn’t even do a blood draw or a DRE….sent me straight for a PETscan in May 2025. They discovered a moderate sized tumor on my L4 vertebrae. Surgery was not an option. So I immediately started combo therapy (Erleada daily along with Lupron injections). In conjunction, I completed 5 radiation treatments. My injections were every 90 days and I received 4. My 12-month scan was this past May and my tumor showed no brightness and is “inactive”. There were no other signs of metastasis. My blood draw at that time indicated PSA=.04 and my T was 12. I’ve been experiencing, what I consider to be, chronic hot flashes, insomnia, low energy, mood swings (but who wouldn’t given others in our situation?), 0 libido, no nocturnal erections and significant genital atrophy.

Now, if you are still reading, the “unique” circumstances. In January of 2025 (6 months prior to my diagnosis) my wife of 38 years and I separated. It wasn’t my idea but she filed for divorce a month later. A couple of months after she filed, I met a woman and we began seeing each other. The relationship was complete and physical….for about 3 months…then the Lupron kicked in. It’s been a year since I’ve had any interest is sex at all but she has remained with me. She is only 57 and her libido is at the opposite end of the spectrum to mine. I chose to discontinue my injections after my last oncologist appointment in June, with his approval.

As I mentioned, I am 70. I am concerned that I am robbing my companion of a complete relationship and hopeful I will see some return of my libido and genital shrinkage. I am 6’ tall and weigh 186. I was an active runner for years (6 marathons) but my joints can’t take it any more. I have always hit the gym religiously (4-5 workouts a week) and my Drs urged me to continue. I alternate 45-minute cardio and weight training 4x/week. While I still enjoy my Mexican food, I’ve added more salads and fruit to my diet. I’ve moderated my love of bourbon and wine, but still succumb a few times a month. My cholesterol was about 130 prior to treatment (Atorvastatin) but has shot up to 230 in the last year.
I suppose my question is: Is there someone with similar circumstances that can give me an idea of how long, or if, I might return to anywhere near “normal”? I am now divorced and don’t want to lose this relationship but feel like she deserves more than I can currently offer. I never thought I would consider TRT since my daughters and grandchildren mean more to me than anything in the world. But some of your stories give me hope. Thank you for reading and I look forward to any replies.

@jeffmarc

Latest research shows that TRT does not cause or promote the return of cancer. My side effects were still serious for 12 months after Lupron treatment and did not subside until I started TRT. My testosterone averaged about 280 for 10 years before prostate treatment and recovered to 111. In 10 weeks, I will be tested again, and I hope my PSA remains undetectable and that my testosterone recovers to a normal level. After 2 weeks of TRT I still have ED and very little libido.

It can take at least a year before those hot flashes get a little milder. If the hot sweats at night are soaking your sheet, the Embrlabs.com Wave Device works really well to stop that. If you get one, I can give you instructions or how to ideally configure it.

Some information from the PCa Commentary

Examples of the relationship of the duration of ADT exposure to subsequent recovery to their
original T levels after stopping ADT are as follows:
- After 3 - 9 months of ADT nearly all men fully recover by about 10 months;
- After 18 - 24 months of ADT only 60% fully recover by about 3 years; and
- After 36 months of ADT exposure only 50% fully recover by ~ 5 years.
It is clear that after receiving ADT for longer than 6-9 months many men never fully return to their
T baseline. This raises the very important question of whether it is safe to offer replacement
testosterone in symptomatic men who have been rendered persistently hypogonadal (<230
ng/dL).

I've been off 3 months eligard shots for 6 to 7 weeks after 2 years of it. I can say that testosterone was 20 ng 2 months ago now 16 ng and my hot flashes are now hot sweats...I hear it can take some time for it to clear out ,Patience is a virtue 🙂 I keep telling myself.

@foxjo1
Are you on any other drugs for PC now that you have dropped Lupron?

Have you had your testosterone level checked? If it is not returning the hot flashes continue.

You could use an estradiol patch to greatly reduce the hot flashes and also help with the libido issue. You don’t need to take enough of it to equal ADT. A .5 or .75 estradiol patch can make a major difference. You can ask your doctor about this.

You can get more information here https://estradiolinitiative.org/. In your case, you’re not looking to replace ADT you’re looking to help with low testosterone.