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How quickly do you recover 'yourself’ after stopping Orgovyx?

Posted by robertov @robertov, Feb 27 1:19pm

Started Orgovyx Jan ‘25. Have SBRT Proton mid-September ‘25. Everything going reasonably well. I am planning a trip to France May 25. Was thinking of stopping Orgovyx around the time of my trip to regain some strength, reduce fatique. How quickly after stopping do you begin to recover. Trying to plan.
Docs want me to continue for 18 months. Other info:
Gleason 4+4. Confined to prostate. PSMA negative. PSA undetectable.

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kujhawk1978 | @kujhawk1978 | Mar 1 9:11am

As others have indicated, T can "recover" to baseline levels in 3-6 months after stopping Orgovyx.

What will your experience be? You won't know until you try...

When I came off 12 months of Orgovyx in April 2024 T recovered to 300+ around three months, 400+ by six.

In the first three weeks the fatigue, genitalia shrinkage and muscle and joint stiffness gradually went away.

The hot flashes, like fat cells, stubbornly refused to go away and I didn't notice a change in the volume and intensity until three months, all gone by six.

It did take a year to lose the 18 pounds I gained...

As others have indicated, diet, exercise, managing stress can play a role as may age, health and pre-treatment baseline.

The decision to come off treatment "early" is a discussion to have with one's medical team...

If you do, ensure that discussion addresses the monitoring plan - labs, consults, testing and the criteria that may point to resuming treatment.

There is some data in results from clinical trials such as EMBARK that point to those who are "rapid responders," whose PSA drops to undetectable by seven months on treatment, may come off and monitor, they statistically have "long" PFS and RPFS periods.

Kevin
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robertov | @robertov | Mar 1 7:48pm
In reply to @kujhawk1978 "As others have indicated, T can "recover" to baseline levels in 3-6 months after stopping Orgovyx...." + (show)
Profile picture for kujhawk1978 @kujhawk1978

As others have indicated, T can "recover" to baseline levels in 3-6 months after stopping Orgovyx.

What will your experience be? You won't know until you try...

When I came off 12 months of Orgovyx in April 2024 T recovered to 300+ around three months, 400+ by six.

In the first three weeks the fatigue, genitalia shrinkage and muscle and joint stiffness gradually went away.

The hot flashes, like fat cells, stubbornly refused to go away and I didn't notice a change in the volume and intensity until three months, all gone by six.

It did take a year to lose the 18 pounds I gained...

As others have indicated, diet, exercise, managing stress can play a role as may age, health and pre-treatment baseline.

The decision to come off treatment "early" is a discussion to have with one's medical team...

If you do, ensure that discussion addresses the monitoring plan - labs, consults, testing and the criteria that may point to resuming treatment.

There is some data in results from clinical trials such as EMBARK that point to those who are "rapid responders," whose PSA drops to undetectable by seven months on treatment, may come off and monitor, they statistically have "long" PFS and RPFS periods.

Kevin

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Thanks Kevin (@kujhawk1978),
Very detailed and tremendously useful. Including the suggestions on a monitoring plan. I’m just at the point of scheduling a meeting with my MO. I plan on traveling for several months over the next year.

Your description of what recovered when (for you) gives a nice ballpark on various possibilities. Fortunately no hot flashes. But who knows. Maybe afterwards?
I’ll make sure to update as I go along. Thanks for everyone’s input!

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