Urologist said I could stop Orgovyx. Your thoughts?

Posted by johnny8924 @johnny8924, 2 days ago

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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Profile picture for denis76 @denis76

@jeffmarc

\\I know people with Gleason nine that have gone many years after stopping. I know others that have only been able to go a year or nine months.

Hi, Jeff. Without lutamids and ADT?

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@denis76
These people stop taking everything. That’s normally what happens when the PSA drops to Undetectable for a year or a year and a half. You stop everything to see what happens. For some people, it is very successful and lasts a long time for other others not the same.

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Profile picture for denis76 @denis76

@jim18

I believe that in younger patients, testosterone is restored much earlier, within 1.5 months. And it is possible that young patients can try taking a break from ADT for 2 months and taking lutamide to avoid resistance.

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@denis76
I’ve not run into anybody having their testosterone come back to normal levels in a month and a half. If they are on Orgovyx it can definitely come back quicker.

For older people, it usually does come back slower. For younger people 6 to 9 months is more realistic.

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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Profile picture for jeff Marchi @jeffmarc

@denis76
I’ve not run into anybody having their testosterone come back to normal levels in a month and a half. If they are on Orgovyx it can definitely come back quicker.

For older people, it usually does come back slower. For younger people 6 to 9 months is more realistic.

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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@jeffmarc

Orgovix is not available in our country. What can i do...

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Profile picture for chippydoo @chippydoo

@northoftheborder I did 6 mos ADT with radiation and finished. 6 month test undetectable. Guess I am either good or on an extended holiday? Guess I'll know in July.

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@chippydoo Yep. If I understand correctly, your cancer is stage 1, and the evidence so far favours pausing ADT unless your PSA starts rising again, just as you're doing.

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Profile picture for denis76 @denis76

@jeffmarc

Orgovix is not available in our country. What can i do...

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@denis76
Unfortunately, there is no other option that allows your testosterone to come back as quick as Orgovyx.

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@jeffmarc

Orgovix is not available in our country. What can i do...

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@denis76 Which country are you in, Denis? Here in Canada, Orgovyx is available, but many oncologists don't know to prescribe it (yet); it could be the same where you are.

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Profile picture for denis76 @denis76

@jeffmarc

Orgovix is not available in our country. What can i do...

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@denis76 Try Medpartner.com. They sell generic Orgovyx, Xtandi, and Erleada. Based on the country you are in they will tell you what documents are required to legally import or if it cannot be done. It will give you a start if you can get a prescription (required).

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I also had IMRT. I was glad to stop Orgovyx after one year. Now 4 years later my PSA hovers around 0.09.

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Short answer...

Yes you can come off Orgovyx.

There is discussion about the duration of systemic therapy, 6-36 months ...

How long, depends on your clinical data but the higher the risk, the likelihood is 24-36 months.

When I did triplet therapy the plan was 24 months systemic therapy. There was data emerging from trials that said 18 months was as good as 24 or 36 do we stopped at 18. Would another six months made a difference, we'll never know but the break lasted five years!

There is also discussion about continuous vs intermittent therapy. You can find data about whether it makes a significant difference in things like PFS, RPFS, OS, CR...

Then, just to add to the confusion, de-intensification or not..,!? In the EMBARK trial, those who reached undetectable in the first seven months were allowed to come off treatment.

If you go with the recommendation of your medical team to come off treatment, be sure to discuss the plan to actively monitor your PSA while off, frequency and type of labs, consults, imaging.

Also, discuss the clinical data that would cause discussion about resuming treatment.

For me, that criteria is:

Three or more PSA tests spaced 90 days apart.

AND/OR

PSA between .5-1

I have seen over time people use criteria anywhere between 2-10 as the trigger to resume treatment. Because of my clinical history, the risk-benefit of letting my PSA rise to between 2-10 is not something I am willing to do.

How long may the "vacation" be and the "quality" of it? No one can say.

Many factors affect T recovery, age, baseline T, agent used and duration..

Certainly Orgovyx is in your favor for recovery of T.

My experience? Both times, after 18 months of Lupron and 12 months of Orgovyx was T recovered to 400+ in the first 3-6 months and with it, gone were the side effects.

My breaks lasted five years the first time, currently at 23 months the second time.

At age 73 it is in the realm of possibility to live another 10-15 years, or more. The quality of those years may be important. Some tolerate continuous therapy quite well, @jeffmarc is one. Others do not.

For me, I "tolerated" the side effects well, hated them though. Did they affect what I did, no, just how I felt doing it. I will say, being off treatment, no hot flashes, fatigue, muscle and joint stiffness gone, weight had dropped from 209 to 183, nice. I didn't experience loss of libido, depression, erectile dysfunction...

So, discuss with your medical team, make a decision...

Were I you, I would come off, discuss with my medical team what the criteria was to resume treatment and how we would collect that data.

Kevin

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Profile picture for kujhawk1978 @kujhawk1978

Short answer...

Yes you can come off Orgovyx.

There is discussion about the duration of systemic therapy, 6-36 months ...

How long, depends on your clinical data but the higher the risk, the likelihood is 24-36 months.

When I did triplet therapy the plan was 24 months systemic therapy. There was data emerging from trials that said 18 months was as good as 24 or 36 do we stopped at 18. Would another six months made a difference, we'll never know but the break lasted five years!

There is also discussion about continuous vs intermittent therapy. You can find data about whether it makes a significant difference in things like PFS, RPFS, OS, CR...

Then, just to add to the confusion, de-intensification or not..,!? In the EMBARK trial, those who reached undetectable in the first seven months were allowed to come off treatment.

If you go with the recommendation of your medical team to come off treatment, be sure to discuss the plan to actively monitor your PSA while off, frequency and type of labs, consults, imaging.

Also, discuss the clinical data that would cause discussion about resuming treatment.

For me, that criteria is:

Three or more PSA tests spaced 90 days apart.

AND/OR

PSA between .5-1

I have seen over time people use criteria anywhere between 2-10 as the trigger to resume treatment. Because of my clinical history, the risk-benefit of letting my PSA rise to between 2-10 is not something I am willing to do.

How long may the "vacation" be and the "quality" of it? No one can say.

Many factors affect T recovery, age, baseline T, agent used and duration..

Certainly Orgovyx is in your favor for recovery of T.

My experience? Both times, after 18 months of Lupron and 12 months of Orgovyx was T recovered to 400+ in the first 3-6 months and with it, gone were the side effects.

My breaks lasted five years the first time, currently at 23 months the second time.

At age 73 it is in the realm of possibility to live another 10-15 years, or more. The quality of those years may be important. Some tolerate continuous therapy quite well, @jeffmarc is one. Others do not.

For me, I "tolerated" the side effects well, hated them though. Did they affect what I did, no, just how I felt doing it. I will say, being off treatment, no hot flashes, fatigue, muscle and joint stiffness gone, weight had dropped from 209 to 183, nice. I didn't experience loss of libido, depression, erectile dysfunction...

So, discuss with your medical team, make a decision...

Were I you, I would come off, discuss with my medical team what the criteria was to resume treatment and how we would collect that data.

Kevin

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@kujhawk1978
Just one note about stopping ADT. You may want to get your first or second PSA test within a month or two.

I was on Lupron and Zytiga when I started a reduction in Zytiga to 750 mg from 1000 mg. My oncologist and I thought it might help with the brain fog.

In 18 days, my PSA went from .2 to 1. What I’m getting at is, for some people stopping the drugs can cause very quick PSA rises. Be aware that it can happen, Though the experience @kujhawk1978 had is much more common

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