Orgovyx and the timeline for return of normal testosterone level

Posted by rmp321 @rmp321, Dec 19, 2023

I’ve been taking Orgovyx since 11.09.23. How long does it take for Testosterone levels to return to normal once I stop taking this drug? What side effects have you experienced with this drug?

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@heavyphil

Scott, your T is returning on YOUR body’s schedule - not the mean or the average, etc. You don’t know if, in your case, it may suddenly jump 100 points higher in a month- you have to give it the full two years as recommended ( for a reason).
Also, the only thing you damaged more than yourself was the cancer cells - they were the target and never forget that.

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I've thought about this comment a lot and it's been really helpful. It mirrors something a therapist said to me that was initially like a slap in the face but turned out to be a blessing (my therapist is VERY blunt and calls me on my bullshit which is why I like her).

I was spending 3-4 hours every day reading medical journals, sites like this, creating spreadsheets of my odds of various things that might or might not happen to me, etc. to the point that my entire days were just work followed by prostate cancer research. I told her about this and how tiring it was and she said "you could do that 24/7 and you're still NEVER going to find the answer you're looking for, which is 'what will happen in your specific case'?" Now, I read this forum once a day, look at my test results, and go to a support group once every two weeks and that's about it.

It's given me my life back, such as it is.

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@scottbeammeup

I've thought about this comment a lot and it's been really helpful. It mirrors something a therapist said to me that was initially like a slap in the face but turned out to be a blessing (my therapist is VERY blunt and calls me on my bullshit which is why I like her).

I was spending 3-4 hours every day reading medical journals, sites like this, creating spreadsheets of my odds of various things that might or might not happen to me, etc. to the point that my entire days were just work followed by prostate cancer research. I told her about this and how tiring it was and she said "you could do that 24/7 and you're still NEVER going to find the answer you're looking for, which is 'what will happen in your specific case'?" Now, I read this forum once a day, look at my test results, and go to a support group once every two weeks and that's about it.

It's given me my life back, such as it is.

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Hey Scott, thanks for the kind words…you may have also seen my recent comments the other day to @hanscasteels who is driving himself similarly batshit with his “particular” situation.
The only reason I can offer any meager insight into this type of behavior is because I did it TOO! I was literally sick with prostate cancer fever -years before my actual diagnosis due to a previous urinary intervention which convinced me that it was just the beginning of this “jour…..”. Well, you know….Talk about exhausted? Man, I am never doing that again; such a waste of time and effort and so counterproductive to getting well.
Anyway, we’re all unique and I guess we think our diseases and illnesses are too…
But I have to agree with you, that this forum is a special place; it’s a one-stop-shop for information and emotional support. I only wish I had known of it a lot sooner and saved myself from those sleepless nights and endless days of frustrating, contradictory ‘research’.
So glad you are doing better. I remember very well your first post and you have certainly come a very long way from that! Best to you always, Scott
Phil

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@heavyphil

Hey Scott, thanks for the kind words…you may have also seen my recent comments the other day to @hanscasteels who is driving himself similarly batshit with his “particular” situation.
The only reason I can offer any meager insight into this type of behavior is because I did it TOO! I was literally sick with prostate cancer fever -years before my actual diagnosis due to a previous urinary intervention which convinced me that it was just the beginning of this “jour…..”. Well, you know….Talk about exhausted? Man, I am never doing that again; such a waste of time and effort and so counterproductive to getting well.
Anyway, we’re all unique and I guess we think our diseases and illnesses are too…
But I have to agree with you, that this forum is a special place; it’s a one-stop-shop for information and emotional support. I only wish I had known of it a lot sooner and saved myself from those sleepless nights and endless days of frustrating, contradictory ‘research’.
So glad you are doing better. I remember very well your first post and you have certainly come a very long way from that! Best to you always, Scott
Phil

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Batshit? Who. Me? I was just asking for a friend 🙂 but you’re right. I am/was driving myself nuts. Thanks for the reality check.

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@heavyphil

Hey Scott, thanks for the kind words…you may have also seen my recent comments the other day to @hanscasteels who is driving himself similarly batshit with his “particular” situation.
The only reason I can offer any meager insight into this type of behavior is because I did it TOO! I was literally sick with prostate cancer fever -years before my actual diagnosis due to a previous urinary intervention which convinced me that it was just the beginning of this “jour…..”. Well, you know….Talk about exhausted? Man, I am never doing that again; such a waste of time and effort and so counterproductive to getting well.
Anyway, we’re all unique and I guess we think our diseases and illnesses are too…
But I have to agree with you, that this forum is a special place; it’s a one-stop-shop for information and emotional support. I only wish I had known of it a lot sooner and saved myself from those sleepless nights and endless days of frustrating, contradictory ‘research’.
So glad you are doing better. I remember very well your first post and you have certainly come a very long way from that! Best to you always, Scott
Phil

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Ugh, yeah, I remember my mental state at the time of my first post. Part of me wants to delete it, but part of me wants to keep it to remind me that I can adapt to anything. Never considered myself strong but, again, my therapist with her pearls of wisdom "You were strong enough to know you needed to ask other people for help." Thanks for the kind words.

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SBRT 5Treatment. 4 months on Orgovyx
Here's my return timeline new to old
Testosterone PSA
551 Dec 24 .27
421 September 24 .41
395 June 24 .55
15.5 Mar 24 .005 after Orgovyx
SBTR Dec 23
404 Oct 23 9.34

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I was on Orgovyx from Dec 23 to June 24. Here are my numbers.

Pre-treatment T - 517
After 9 days of O - 27
After 3 months of O - 14
1 month after stopping O - 482
4 month post O - 372
6 month post O - 466

Stay Strong Brother, we got this.

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The purpose of ADT(Orgovyx, in my case) is to reduce the testosterone which feeds the cancer cells. If I stop ADT and testosterone does not recover or PSA stays low, why should I be taking ADT at all. Can't I enjoy the drug holiday until PSA reaches some level then do PSMA scan to determine cause and treat ?

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@toolbelt

I was on Orgovyx from Dec 23 to June 24. Here are my numbers.

Pre-treatment T - 517
After 9 days of O - 27
After 3 months of O - 14
1 month after stopping O - 482
4 month post O - 372
6 month post O - 466

Stay Strong Brother, we got this.

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It seems like a lot of guys have a testosterone bounce when stopping Orgovyx, then it drops, then it goes back up again. Wonder why?

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@alperk

The purpose of ADT(Orgovyx, in my case) is to reduce the testosterone which feeds the cancer cells. If I stop ADT and testosterone does not recover or PSA stays low, why should I be taking ADT at all. Can't I enjoy the drug holiday until PSA reaches some level then do PSMA scan to determine cause and treat ?

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Hey alperk, that really depends. What is your situation? What initial treatment did you have - and for what Stage? That really determines how long you should be on ADT, not just the fact that it lowered your T and PSA.

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@heavyphil

Hey alperk, that really depends. What is your situation? What initial treatment did you have - and for what Stage? That really determines how long you should be on ADT, not just the fact that it lowered your T and PSA.

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27 teats after cryo to remove prostate, Dormant PSA spiked to 45. August 2021 started Lupron injections and eventually had 2 rounds of radiation to treat clones. PSA came back and went to docetaxel August 2024. Finished 6 cycles last week. Currently taking orgovyx

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