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Orgovyx as lifelong treatment

Posted by mikejf @mikejf, Jan 28, 2025

Does anyone who has Advanced Prostate Cancer been prescribed Orgovyx as lifelong treatment as I have?

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

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rrk25 | @rrk25 | Apr 3, 2025
In reply to @vircet "How are you doing now @myash ? I started on Orgovyx March 26. I am not..." + (show)
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How are you doing now @myash ? I started on Orgovyx March 26. I am not experiencing any of the side-effects yet.
After how many weeks in Orgovyx did you experience a side effect? I am concerned about dealing with the SEs (hot flashes especially) during my cruise with walking tours (excursions) on May 12 - 19, approximately my 7th week on ADT.

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My side effects started 2-3 months in
Hot flashes, fatigue, forgetting things and bad dreams were most that I got. I definitely would not want to be on it long term, 6 months was plenty for me.

I was also told as soon as I started the Orgovyx to take calcium and vitamin D along with magnesium

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vircet | @vircet | Apr 3, 2025
In reply to @rrk25 "My side effects started 2-3 months in Hot flashes, fatigue, forgetting things and bad dreams were..." + (show)
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My side effects started 2-3 months in
Hot flashes, fatigue, forgetting things and bad dreams were most that I got. I definitely would not want to be on it long term, 6 months was plenty for me.

I was also told as soon as I started the Orgovyx to take calcium and vitamin D along with magnesium

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My RO prescribed for me only Orgovyx, plus vitamin D. I asked by email if I can also take calcium. I am waiting for the response. When we meet in person, I will my RO again.

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northoftheborder | @northoftheborder | Sep 14, 2025
In reply to @northoftheborder "Yes. Still castrate-sensitive after 3 years 4 months (PSA < 0.01). The TITAN study showed that..." + (show)
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Yes. Still castrate-sensitive after 3 years 4 months (PSA < 0.01). The TITAN study showed that Apalutamide used together with ADT can delay castrate resistance for mCSPC dramatically compared to pairing with earlier 1st-gen ARSIs (many TITAN participants were still castrate-sensitive at the end of the 4½ year study), and I'm fortunate that I was diagnosed just as Apalutamide became widely available in Canada, so I got the full benefit. The other -lutamides are also very effective (some perhaps even more so).

What's it like on ADT in the long term? Well, you do get used to it. And Orgovyx is *far* easier than the monthly Firmagon injections that I started with. I miss my hairy chest and don't love the gynecomastia that has replaced it, but I do love that I'm not counting down my last months yet.

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❝Still castrate-sensitive after 3 years 4 months (PSA < 0.01).❞

I forgot about this old post. Just a couple of weeks left until now until my 4-year cancer-versary.

I am so grateful that I landed at a decent Ontario Cancer Centre that was up-to-date on the latest research. Doublet care and radiating the primary and all metastases wasn't yet widespread standard of care of oligometastatic prostate cancer in 2021 — heck, Apalutamide wasn't even in the Ontario formulary yet (my onco team got special permission for me from the provincial Ministry of Health). I had expected to be very sick or dead by the 4-year point, and instead, thanks to quick, aggressive, and (then) cutting-edge treatment, I'm going strong. I'll meet my first grandchild in January, something I thought in 2021 (at age 56) I'd have no chance of living to see.

Don't give up hope, friends, even when you feel like you've just heard your doom from the onco team. Today's survival stats are based on yesterday's data; we're the cohort writing tomorrow's. ❤️

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Jeff Marchi | @jeffmarc | Sep 14, 2025
In reply to @jeffmarc "I was on Lupron for seven years before Orgovyx was available and then switched to Orgovyx..." + (show)
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I was on Lupron for seven years before Orgovyx was available and then switched to Orgovyx for 1.5 years. I became castrate resistant. (PSA rising) after about four years, The same will happen to you at some point if you keep on Orgovyx for a lifetime.

After about eight years, my oncologist agreed to let me stop taking it. It isn’t likely my testosterone will come back much at all after that many years. If it does, I will have to go back on it. I am on Darolutamide And it’s working great as a single drug.

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Just ay follow up.

My testosterone started rising steadily I had to go back on orgovyx even after 8 years of ADT.

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jime51 | @jime51 | Sep 15, 2025
In reply to @jeffmarc "Just ay follow up. My testosterone started rising steadily I had to go back on orgovyx..." + (show)
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Just ay follow up.

My testosterone started rising steadily I had to go back on orgovyx even after 8 years of ADT.

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Is there any reason to care about rising Testosterone unless PSA rises? I understand that this is the case with Nubeqa as monotherapy: lots of Testosterone but little or no PSA.

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