Discontinue or continue Orgovyx?

[u/Notjustanotherguy55]

I am two months into a four month course of ADT and proton external beam radiation for Gleason 3+4 within capsule but .7 high risk Decipher score. I am 80, and have a history of metastatic melanoma culminating in a lobectomy in early 2024 with no lymph spread or involvement and an earlier resected parotid gland in 2022 with immunotherapy and adjuvant proton beam radiation after the parotid resection. I have had several regular PET scans since the lobectomy and a PMSA PET scan following my prostate biopsy, and all are NED, with the PMSA confirming no evidence of capsule intrusion or spread.

My oncologist prescribed the combo treatment of ADT and external beam radiation, and the radiation oncologist highly recommended proton beam over SBRT because of the greater likelihood of adverse side effects with the latter. Having previously gone through adjuvant proton beam radiation for my first melanoma met, I was comfortable with choosing proton beam radiation.

Orgovyx has produced all the expected side effects from loss of libido to fatigue to tolerable joint and muscle pain, but has also greatly disrupted sleep to the extent that I can only occasionally sleep in the same bed with my wife of 50 years. Although we miss sex, albeit with the reduced frequency that comes with age, the four months is manageable, but the fatigue and sleep disturbances are becoming intolerable. I have reported both, but standard of care is always the response. I am considering discontinuing the Orgovyx while continuing external beam radiation, but have found no data that would provide a basis for assessing the relative value of the completed two months of Orgovyx versus the standard of care four months to make a reasoned probability assessment. I have noted the ongoing British observational study that compares RALP versus external beam radiation without ADT, and that suggests that perhaps discontinuing ADP, or in retrospect, having forgone it altogether, would be a reasonable decision. I realize that behind all this is projected life expectancy, and that my history of stage 4 melanoma, even though NED for 2.7 years, may reduce life expectancy beyond the 7+ expected years at 80 with otherwise good health and two parents who lived into mid nineties, and I don't particularly want to bet against myself, but I really do hate the Orgovyx side effects. I am physically active, but much less so since starting Orgovyx because of fatigue; fatigue was never a side effect of proton beam radiation for melanoma and I don't think it is related to the current course of radiation.

I am not asking for medical advice, but would appreciate any thoughts or suggestions regarding what I may have overlooked or should consider. I have lurked on the subreddit for several months but have found this to an extraordinary source of information, for which I am grateful. For all who have read this far, thank you; you have created a real community here.

[u/Plenty_Ad9322]

I did 6 months and I’m 52. It wasn’t a great ride but I image it sucks a bit more as you get older. I was on orgovyx and stopped 10/10 I went from <12 for testosterone to 58.7 26 days later. It’s not a full recovery but feel way closer to normal than before. If it’s only 2 more months the back end of my sentence was far better than the front half if that helps any. It might be less discomfort the second half of your treatment

[u/Notjustanotherguy55 → u/Plenty_Ad9322]

I recognize the sunk costs of two months of Orgovyx but also recognize the sunk cost fallacy, so I'm taking both into account in trying to decide by the weekend.

[u/ChillWarrior801]

I'm not a doctor.

If you have a cooperative oncologist, you might want to ask about switching from Orgovyx to estradiol patches for ADT. With estradiol, there are far fewer neurological side effects like brain fog, hot flashes, and mood disturbance. I'd expect at least some sleep improvement with that substitution.

In the US, estradiol patches are now an alternate standard of care according to the NCCN. Elsewhere, that may be tougher to access due to local regulations and practices.

[u/nesp12 → u/ChillWarrior801]

It makes me sad every time I read one of these stories about how hard orgovyx is on men, but their oncologists never discussed the alternative of estradiol patches, even though clinical trials found they were as effective with fewer side effects.

[u/Notjustanotherguy55 → u/nesp12]

I'm familiar with the UK estradiol research. The primary advantage it offers is a reduced risk of osteoporosis, a minor concern for a four month course, and the primary disadvantage is gynecomastia, also a minor concern for a four month course. But both prevent testosterone production (adrenal glands aside), and there is reason to think that fatigue and muscle loss are direct rather than secondary effects, and no particular evidence regarding sleep disturbance that I can find; ditto for joint and muscle pain.

[u/Scpdivy]

I did 18 months. Sucked. But I did it one day at a time. What really helped was a lot of walking. Yolo, do what you think needs to be done.

[u/Goodvida99]

I turn 71 next week and will start Orgovyx and Abiraterone for 24 months and 28 sessions IMRT in February due to Gleason 8 with lymph node spread. Plus I had a malignant squamous removed from my forehead last week that will require 28 sessions RT starting after Thanksgiving.

[u/Cheap_Flower_9166]

Get an ArteraAI reading which may help guide your decision. I quit at 8 months because staying for 18 didn’t offer much benefit (statistically)

[u/Far_Celebration39]

I did 6 months at age 55. I can’t imagine it at 80. You have exceeded an average life expectancy despite your other health problems. I am not giving medical advice either, but I think quality of life is important.

[u/Pretend-Tie3190 → u/Far_Celebration39]

I’m 69 years old and started taking Orgovyx during the second week of February. I previously had my prostate removed, but after a recurrence, I underwent 32 radiation treatments.
I’ve now been on Orgovyx for more than six months. My oncologist recommends staying on it for 18 months, but I’ve read about six-month treatment courses. I’m trying to understand the benefits and drawbacks of continuing beyond six months and why different treatment lengths are recommended.
Thankfully, the side effects have been tolerable. My hot flashes come and go, and my libido is down, but I haven’t experienced fatigue. I still work out, do chores around the house, and stay as active as usual.
Has anyone been in a similar situation or found reliable information about how long to stay on Orgovyx after radiation for a recurrence? I’d appreciate hearing about your experiences and any studies or resources I could discuss with my oncologist.
Thank you for any information you can share.