How long do Lupron side effects last after treatment concludes?

Posted by jbuuck @jonbuuck, May 10, 2021

I've been on Lupron for two years. The treatments have ended. How long do the side effects last? Thanks for any insight you can provide.

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Profile picture for Jeff Marchi @jeffmarc

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.

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@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.

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