How long should I be on Orgovyx?
I’m 75, generally fit. Diagnosed in Feb. ‘26. Began Orgovyx Apr. 11. Gleason 7 4+3. Decipher .89. Cribriform pattern. Intraductal carcinoma. Cancer encapsulated. 10 radiation sessions with Varian EBRT, 13 more to go. Will follow with needle catheter brachytherapy. Tolerating meds and radiation well so far. Medical oncologist says I’m high risk and recommends 9-12 months of ADT. RO says maybe 6 months after I mentioned some mental confusion, memory hiccups. Mother had dementia, so I think about it. I would prefer not being on Orgovyx longer than 6 months, but not at the possible expense of recurrence.
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For a plain, vanilla 7(4+3), 6 months of ADT is standard.
But you have a number of high risk factors - Cribriform pattern, intraductal carcinoma, and relatively high Decipher score. That’s gonna require hitting it a bit harder.
Will hitting it with an additional brachy boost be enough? Back-ending with additional months of ADT should be considered.
> with your Gleason 4+3, what % was “4”?
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2 ReactionsRecent studies have shown that 6 months ‘may’ be sufficient, but as @brianjarvis points out, you do have several higher risk factors.
I do think the brachy boost is a game changer in this situation; it might make all the difference for lasting success.
You certainly have the option of doing 6 months ADT and then PSA testing every 3 months. At the first sign of an increase, you’d know you would need to go back on it - and possibly add a second hormone blocker…
It’s difficult for me to imagine that an extra 3 months of Orgovyx alone would be the difference between success and failure.
I mean, if all that RT wasn’t enough to kill it, then you’re on a whole different trajectory in your treatment options.
Hope I did not add to your confusion, but even the ‘experts’ admit that this can be a ‘best guess’ scenario.
Phil
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5 ReactionsThis is an area of *extremely* active research right now, for people at all stages of prostate cancer (I'm currently an ADT "lifer" because I'm at stage 4). Expect the recommendations to change rapidly, even every few months, until there's a consensus on how to react to all the new studies coming out.
Interestingly, the challenge is that they're much better at keeping us alive now, even with advanced prostate cancer, so suddenly the long-term risks of ADT — type 2 diabetes, osteoporosis, cardiovascular disease, etc. — have become a concern. This is what progress looks like, in all its messy glory.
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9 ReactionsThe biggest problem is these two things (Cribriform pattern. Intraductal carcinoma)
I think you should definitely ask the pathologist whether the cribriform is large (>.25mm) Or Small. Large is much more aggressive.
A combination of large cribriform And intraductal Has really not been found to be fully treated by any current procedure. It has a very high chance of reoccurrence as your decipher score shows.
As a result of this, I personally would not be arguing with the doctor about how long I should be on ADT. You may want to stay on ADT and an ARPI for years. ADT for the recommended time could help suppress cancer growth. I know a lot of people that are on just Nubeqa, Since it allows them to have their testosterone, but still suppresses the prostate cancer. I’ve been on it for three years and I’ve been undetectable for 32 months after 16 years of prostate cancer. It has very few side effects, None for most people, So it’s a good solution for an aggressive case.
I personally have been on ADT for eight years. I have BRCA2, which is aggressive, so my oncologist feels I should stay on it. It does not cause life-changing problems. Fortunately, I don’t have fatigue and I have worked around all the other side effects. Not saying they are gone just saying I have Solutions for them.
Just some things to think about and discuss with your doctor.
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7 Reactions@northoftheborder
My thoughts exactly 👍 : )
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2 Reactions@jeffmarc Jeff, how long can Nubeqa alone really work? It blocks androgen receptor sites on PCa cells but eventually don’t these cells find ways to bypass that blocking effect? They seem to find ways around everything else!😖
Another poster asked if anyone kept their PSA down with darolutamide ONLY, so this is part of that question.
Phil
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2 Reactions@jeffmarc Jeff, I may have misunderstood but thought you mentioned Nubeqa losing effectiveness after 15 months. No?
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2 Reactions@jime51
Definitely did not say that. I’ve been on it three years and I’ve been undetectable for the last 32 months. With Zytiga I was only undetectable one month in 2 1/2 years.
I don’t know how long Darolutamide Will continue to work, I know of people that have been on it longer than I have and it’s still working for them.
I do expect it to stop working one day since I have BRCA2 and it’s pretty aggressive.
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3 Reactions@heavyphil
I think I answered this another messages, but I know people that have been on it for at least four years successfully. You could come to one of the ancan.org Weekly advanced prostate cancer meetings, and ask there. They have hundreds of people that come to the meeting so not all of the ones that are on just Nubeqa will show up.
A lot of the people that have gone on just Nubeqa are older and probably have very low testosterone.
One guy who was in meetings, I go to twice a month Switched to Darolutamide When I recommended it to the group. He has sense moved to South Africa and found me in another forum. He was real happy to tell me he has switched to just Nubeqa And it’s been working great for him. He’s 80 And has an advanced case of prostate cancer and figured it will last the rest of his life. One reason he moved there was so his children don’t have to see him dying of prostate cancer.
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4 Reactions@jeffmarc Thanks! I believe now that Chuck mentioned it in our UMn online group. He was taking it alone for a lymph node recurrence and it was working great until his PSA started rising after 15 mos. I’ll try to re-confirm at next meeting.
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2 Reactions