ADT. Afraid of it

Posted by chamblee54 @chamblee54, Apr 14, 2024

I’m 4+ 3 Gleason in one core. But recent mri shows tumor growth. New biopsy coming.
They want to add ADY and I’m scared to death of the side effects. The weight gain and mood swings are especially troubling.
Please share your experience and decision and add your Gleason score.
It’s a quality of life issue for me.
Afraid also of the depression - fatigue. Starting beam radiation soon

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@chippydoo

I'm 2.5 months in and it isn't as horrible as I thought it would be. Gained some quick weight over the past 2 weeks that needs addressing. Appetite went bonkers. Dinging my short memory. No hot flashes (yet) and mountain bike riding our local trails 5-6 times a week. I've heard exercise is very helpful. Best wishes on your journey.

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Chippy, I am off Orgovyx 2 months after 6 months of therapy and I am still ravenously hungry all the time.
I gained no weight at all in all that time but now I am gaining it, even with exercise…WTF??😳

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@heavyphil

Chippy, I am off Orgovyx 2 months after 6 months of therapy and I am still ravenously hungry all the time.
I gained no weight at all in all that time but now I am gaining it, even with exercise…WTF??😳

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This stuff is the gift that keeps on giving, but we are alive to laugh about it. Lose all your hair except the hair I am tired of shaving. Go figure.

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Thanks Phil. My MO at Hopkins said they had eliminated all of the aggressive clones with the triple therapy. If the cancer comes back he said it would be a less aggressive, more indolent cancer they could treat. Treatments are getting more aggressive earlier with more options. That's why I try not to look at older studies with survival rates etc because those pertained to older treatment regimes. The newer studies haven't had enough time elapse to determine how successful the newer treatments are.

Good luck to you! We are all fighting the same beast.

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@heavyphil

That’s a mind blowing study, doc…turns everything on its ear. One point though - did the paper mention the Gleason scores of the 5200 men?
I mean, if they were all 3+3’s and small tumor 3+4’s with low Deciphers, I could really get behind it.
But then there’s you and your aggressive case- now on TRT!!
It seems that the triplet therapy you endured really worked for you in not only beating down the cancer but possibly “curing” (we don’t use that word!) it?
Very happy for you!
Phil

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@retireddoc 's link was for Groups 1-3 prostate cancer:

Group 1 = Gleason 6 (3+3)
Group 2 = Gleason 7 (3+4)
Group 3 = Gleason 7 (4+3)

These patients all had radical prostatectomies, and (again, according to the summary posted by retireddoc) there was no statistically-significant difference in biochemical recurrence between the cohorts who did and didn't receive TRT later.

I don't see anything there that would apply to those of us with advanced/metastatic prostate cancer (who would usually be G8 or G9, according to my oncologist, if they even bothered to grade it); presumably the study was just about early-stage cases where the cancer was hopefully eliminated with the prostatectomy. But if additional studies confirm it, it's good news that testosterone treatment might not increase the post-surgery risk for those people.

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@northoftheborder

@retireddoc 's link was for Groups 1-3 prostate cancer:

Group 1 = Gleason 6 (3+3)
Group 2 = Gleason 7 (3+4)
Group 3 = Gleason 7 (4+3)

These patients all had radical prostatectomies, and (again, according to the summary posted by retireddoc) there was no statistically-significant difference in biochemical recurrence between the cohorts who did and didn't receive TRT later.

I don't see anything there that would apply to those of us with advanced/metastatic prostate cancer (who would usually be G8 or G9, according to my oncologist, if they even bothered to grade it); presumably the study was just about early-stage cases where the cancer was hopefully eliminated with the prostatectomy. But if additional studies confirm it, it's good news that testosterone treatment might not increase the post-surgery risk for those people.

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Hey North, I was 4+3 Unfavorable and even I would be VERY cautious about TRT after salvage radiation; I still believe that every case is different and being a pessimist, I would probably be the outlier that gets an especially aggressive form of PCa. I’m gonna lay low for now….
Phil

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I'm 54 now, but I started ADT (Lupron (Eligard) + Abiraterone w/Prednisone) at 52. I just completed two years of the abiraterone and will finish the Lupron in six months. I am Gleason 9 (4+5) Group 5. I have had significant side effects of fatigue, hot flashes, depression, anxiety, muscle loss, memory issues, no libido, and bone loss. I managed the side effects as best I could with exercise, which helped a little, but the fatigue and stamina made it challenging. That all said, I'd do it again. I feel that anything that helps keep me alive, I will try it. Now that I am coming off the treatments, I am more scared and anxious about the cancer coming back. I have lost my crutch, I guess. If the cancer does recur and the docs recommend going back on ADT, I would do it if it keeps the cancer asleep.

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My husband had the same thought and refused at first and felt pressured into it, he's only taken one shot so far ...I said women cut off their boobs or get ovaries taken out because of cancer and they are still women. Who cares about the sex life! Id rather have a tired husband than a dead husband!
He was moody for a week after and says he feels weaker at the gym but he's always gone almost every day and done weight training so has naturally seen a slight decline since he was younger.....

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