Orgovyx aftermath
Before and during Radiation I took Orgovyx for six months and decided the side effects ( especially the ones effecting my brain health causing depression) were too much. I’ve been off it now for about a month and feeling somewhat better regarding mood swings but still experiencing occasional cramps in my right leg and sudden knee pains,as well as joint pains and stiffness and low muscle strength ( I know I need to build self discipline and start exercising more) I’m wondering how long the effects of Orgovyx will linger normally although I realize everyone’s experience is different. Oh,and mr.Happy has been non existent for almost a year now,although his attendance was already pretty spotty before diagnosis. I’m 74 and have a 12 year younger wife who is frustrated. ( no thanks,volunteers are not being considered 😊) Your sharing of experiences will be appreciated. Wishing strength and positive energy to all of you
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Has your testosterone returned to pre-Orgovyx levels? That’s the first indicator you should look for as to when things should return to normal.
Regarding Mr. Happy —> Did they avoid radiating your penile bulb? Data show that late ED may be avoided by minimizing radiation hitting the penile bulb —> https://www.icr.ac.uk/about-us/icr-news/detail/avoiding-penile-bulb-with-radiotherapy-could-save-men-with-prostate-cancer-from-harmful-side-effects
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When I was diagnosed with prostate cancer, my first comments to my urologist were, “I don’t know anything about prostate cancer so, I’ve got a zillion questions to ask before you cut anything out of me, or bombard me with radiation, or inject toxic chemicals into me……” From that point on, everything that they were going to do to me was first fully explained; I either agreed to it or it didn’t happen.
Prior to starting six months of hormone therapy, my medical oncologist thoroughly explained both the physical and mental health side-effects of hormone therapy and how to avoid/minimize them —> resistance training exercises.
> physical: exercises that maintain lean muscle mass help offset the physical side-effects.
> mental: exercise turns on many “switches” in parts of the brain that put us in a better mood. It reduces stress, anxiety, depression, catastrophizing, and more.
She advised me that incorporating resistance-training exercise as a necessary part of the routine to minimize the potential physical/mental side-effects of hormone therapy.
As for Mr. Happy….. Except for having low libido, everything still worked through and since radiation treatment. From what I was told by my medical oncologist, the key is to continue doing it, despite the “want to” not being there. Perhaps by ramping up my resistance-training and cardio programs to minimize the side-effects of hormone therapy, that might(?) also have the side-benefit of keeping the blood flowing “down there” as well; I don’t know. Much of what goes on “down there” is about hydraulics so, keeping the blood flowing would seem to be important.
Hopefully, you’ll continue to improve.
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1 ReactionI have been on Orgovyx 6 months...yes have some leg pains ( knees and hips) mostly transient...the stuff was brutal for the first 30-40 days...quit it twice for about 10 days..but finally was able to tolerate it...destroyed my libido pretty quick but, oddly enough, it gives you some perspective about chasing p****..which I had been doing since I was 14 or so..( married twice) the time and effort and money ..kinda like driving a ferrari..fun but the maintenance is a pain !
Anyway, still on Orgovyx and Nubeqa. PSA went from 61 to < .01 in 5.5 months...so I will do a year longer...alternative is grim !
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1 ReactionHere are some information about Orgovyx and how long it will affect you. Getting your testosterone tested in a blood test would Allow you to know when things are getting back to normal. If you were back to 280 things would be much better.
In the HERO study, relugolix demonstrated sustained testosterone suppression superior to that of leuprolide acetate (97% vs 89%; difference 7.9% [95% confidence interval, 4.1–12%; p < 0.001]).
Men (N = 934) were randomized (2:1) to receive relugolix 120 mg orally daily or leuprolide acetate injections every 12 wk for 48 wk.
Overall, 74 of the 137 men in the relugolix cohort recovered to testosterone >280 ng/dl, with a median time to recovery of 86.0 d (95% CI, 65.0–92.0), versus two of the 47 men in the leuprolide cohort, with a median time to recovery of 112.0 d
https://www.sciencedirect.com/science/article/pii/S2588931123002900
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2 ReactionsData point: I was on Lupron/Abiraterone for 2.5 years. After last dose, testosterone did not recover to normal until 7 months later. PSA started to rise four months after that, & now (9 months later) sits around 0.10 ng/ml.
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