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Urologist said I could stop Orgovyx. Your thoughts?

Posted by johnny8924 @johnny8924, Mar 25 7:56pm

Age 73, in very good health. Diagnosed with Gleason 9, August 2024. Been taking Orgovyx since then, Not quite 20 months. Completed 28 sessions of IMRT April 2025. Latest lab results a few weeks ago: PSA < .04, testosterone < 1. My urologist said I could go off Orgovyx when my medication runs out in 15 days. I’m somewhat hesitant to do so because who knows how my PSA and testosterone levels will be affected. Thanks for any feedback, thoughts, etc.

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denis76 | @denis76 | 22 hours ago

I'm just curious what you think.

If we assume that someone can make more money from a patient with resistance, then it becomes clear why they recommend not abandoning ADT.

Otherwise, if resistance doesn't develop, a whole layer of potential for making big money remains untapped.

I think sacred knowledge that allows us to avoid resistance exists, but it's kept top secret. It's only for a select few.

Otherwise, they won't make much money from us if we're use to mushrooms and throw ADT to hell.

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cadaddy | @cadaddy | 21 hours ago
In reply to @ctsenior "We live in a new clinical setting now with PSMA PET scan. Before this, recurrences were..." + (show)
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We live in a new clinical setting now with PSMA PET scan. Before this, recurrences were shunned because the cancer could have metastasized and location was difficult. Nowadays, if you stay on ADT for the rest of your life, you will never know if you are cured. In fact, taking a PSA test on ADT is not telling the true story. By getting off it, you will find out the extent of your cancer unhindered by low T. If the cancer has spread, maybe you can treat it with radiation. If not get back on ADT. Here is the key point: too much ADT leads to castrate resistance.

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@ctsenior What you say is part of the reason I stopped ADT after 6 months and 5 months after SBRT. My PSA five months after radiation was undetectable and my RO agreed with my suggestion to test my PSA after 6 months of no ADT.

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jim18 | @jim18 | 21 hours ago
In reply to @dpayton "@jeffmarc Hey Jeff, is there any particular reason why the scans don't show anything if in..." + (show)
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@jeffmarc

Hey Jeff, is there any particular reason why the scans don't show anything if in fact there is something there? Also, what is the PSA where things "should" be visible?

Thanks Jeff and keep dancing!

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@dpayton PSMA PET scans (from 2 years ago) of what could be seen at 2.0+ PSA picked up about 2/3s at PSA from 0.5-1.0, and 1/3 at a PSA level of 0.2 (RP recurrence level). So much better for radiation recurrence (2.0+) than for RP. Above PSAs of 2.0 the PSMA PET picks up almost everything (95%+) that can be found. There is still the issue of micro-metastasis that Jeff mentioned that are too small for the scan to pick up at any reasonable (<10) PSA level.

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dpayton | @dpayton | 17 hours ago
In reply to @jim18 "@dpayton PSMA PET scans (from 2 years ago) of what could be seen at 2.0+ PSA..." + (show)
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@dpayton PSMA PET scans (from 2 years ago) of what could be seen at 2.0+ PSA picked up about 2/3s at PSA from 0.5-1.0, and 1/3 at a PSA level of 0.2 (RP recurrence level). So much better for radiation recurrence (2.0+) than for RP. Above PSAs of 2.0 the PSMA PET picks up almost everything (95%+) that can be found. There is still the issue of micro-metastasis that Jeff mentioned that are too small for the scan to pick up at any reasonable (<10) PSA level.

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@jim18

Yep. My doc wanted me to start radiation ASAP after my Eligard shot. Probably due to the fact all cells were still within the bed. I'm hoping and praying he's right! 🙂

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denkea | @denkea | 3 hours ago
In reply to @ctsenior "We live in a new clinical setting now with PSMA PET scan. Before this, recurrences were..." + (show)
Profile picture for ctsenior @ctsenior

We live in a new clinical setting now with PSMA PET scan. Before this, recurrences were shunned because the cancer could have metastasized and location was difficult. Nowadays, if you stay on ADT for the rest of your life, you will never know if you are cured. In fact, taking a PSA test on ADT is not telling the true story. By getting off it, you will find out the extent of your cancer unhindered by low T. If the cancer has spread, maybe you can treat it with radiation. If not get back on ADT. Here is the key point: too much ADT leads to castrate resistance.

Jump to this post

@ctsenior
" " "By getting off it, you will find out the extent of your cancer unhindered by low T. " " "
Not necessarily. I was on ADT for little over a year. My PSA went down to undetectable. I went off ADT for 18 months and my PSA went to 32. A PSMA scan (I've had 3 scans) found no detectable cancer.
For what it's worth my PSMA scans were when my PSA was 22/12/32. All shown no detectable cancer.

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ctsenior | @ctsenior | 2 hours ago
In reply to @denkea "@ctsenior " " "By getting off it, you will find out the extent of your cancer..." + (show)
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@ctsenior
" " "By getting off it, you will find out the extent of your cancer unhindered by low T. " " "
Not necessarily. I was on ADT for little over a year. My PSA went down to undetectable. I went off ADT for 18 months and my PSA went to 32. A PSMA scan (I've had 3 scans) found no detectable cancer.
For what it's worth my PSMA scans were when my PSA was 22/12/32. All shown no detectable cancer.

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@denkea When you stopped ADT and your PSA went up, it showed the cancer. The fact that the PSMA PET scan showed nothing means your cancer is not expressing PSMA. Have you done a bone scan or other PET with different ligands to help locate the distant mets.

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