Just had my first post Orgovyx T test and, after 5 1/2 weeks, my T is at 360. Glad its recovering so fast. Fortunately, PSA has stayed low at .3 (had radiation in June 2024 as primary treatment).
Scottbemmeup,
That is encouraging news and thank you for posting this.
You stopped after 6 months on Orgovyx? What was your Gleason score? Mine was GS 9(4+5).
I am thinking of stopping after 9 months.
Just had my first post Orgovyx T test and, after 5 1/2 weeks, my T is at 360. Glad its recovering so fast. Fortunately, PSA has stayed low at .3 (had radiation in June 2024 as primary treatment).
Those are encouraging results. You stopped Orgovyx just after 6 months?
What was your Gleason Score? Mine was 9(4+5). I am thinking of stopping Orgovyx at the end of this month(9 months).
Wish you the best
Scottbemmeup,
That is encouraging news and thank you for posting this.
You stopped after 6 months on Orgovyx? What was your Gleason score? Mine was GS 9(4+5).
I am thinking of stopping after 9 months.
He suggested I should/could stop now./ If PSA keeps going up, at certain level, I will start Orgovyx again. Evidently not all Gleason 9's is same for every person (my assumption).
Intuitively I feel that I should stay on it for one year too! My oncologist's suggestion is based on recent trials on intermittent Hormone therapy, not on his intuition!
He suggested I should/could stop now./ If PSA keeps going up, at certain level, I will start Orgovyx again. Evidently not all Gleason 9's is same for every person (my assumption).
Intuitively I feel that I should stay on it for one year too! My oncologist's suggestion is based on recent trials on intermittent Hormone therapy, not on his intuition!
Who would be interesting to hear what happened in those intermittent Trials.
I was in chat today with 20 people. Three Of them had done Intermittent Lupron/orgovyx For at least two or three years. All three of them have multiple metastasis. They mentioned that the time they were off the drugs became shorter every time they needed to go back on, because their PSA got too high. They’re now having to stay on the drugs for the rest of their lives.
It would be interesting to hear what the trial found.
Thank You Jeffmarc for following up on Intermittent ADT. I like to get a 2nd, 3rd or 4th expert opinion from UCLA and UCSF other than Dr Scholz. Ultimately, I have to trust someone's opinion and take my chances.
Even if I stay on Orgovyx for 12 or 18 months and when I stop it, I could be in the same situation if I have a bad luck just like those three individuals?
Thank You Jeffmarc for following up on Intermittent ADT. I like to get a 2nd, 3rd or 4th expert opinion from UCLA and UCSF other than Dr Scholz. Ultimately, I have to trust someone's opinion and take my chances.
Even if I stay on Orgovyx for 12 or 18 months and when I stop it, I could be in the same situation if I have a bad luck just like those three individuals?
Is your Gleason is below eight You might be able to stay off permanently, and are cured. Some people are cured, More than have reoccurrence. If above eight, I know a couple of people that have been permanently off, as an eight, but I do not recall of any higher. Everybody is so different.
Is your Gleason is below eight You might be able to stay off permanently, and are cured. Some people are cured, More than have reoccurrence. If above eight, I know a couple of people that have been permanently off, as an eight, but I do not recall of any higher. Everybody is so different.
I tend to agree with @jeffmarc in this one. And, of course your idea about 2nd and 3rd opinion. Did you ever have a Decipher score? That may give much more insight into the aggressiveness of your Gleason 9; not that a 9 isn’t more aggro just on face value, but the Decipher will tell you if it has a greater propensity to metastasize or not. If it IS more likely, then I think your RO would recommend staying on Orgovyx at least another 3-6 months. You don’t want to be Yo-Yo ing on and off ADT forever if you can avoid it.
BTW, what primary treatment did you receive? Surgery, radiation/cyberknife??
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Scottbemmeup,
That is encouraging news and thank you for posting this.
You stopped after 6 months on Orgovyx? What was your Gleason score? Mine was GS 9(4+5).
I am thinking of stopping after 9 months.
Those are encouraging results. You stopped Orgovyx just after 6 months?
What was your Gleason Score? Mine was 9(4+5). I am thinking of stopping Orgovyx at the end of this month(9 months).
Wish you the best
I was Gleason 7, 4+3. Six months is what my doctor recommended, so that's what I did. I was also on Casodex for two months early on.
Thank you. ever one's cancer is different!
Ava, Gleason 9 is pretty high; what does your doctor recommend? I would think at least one year on ADT would be necessary.
He suggested I should/could stop now./ If PSA keeps going up, at certain level, I will start Orgovyx again. Evidently not all Gleason 9's is same for every person (my assumption).
Intuitively I feel that I should stay on it for one year too! My oncologist's suggestion is based on recent trials on intermittent Hormone therapy, not on his intuition!
Who would be interesting to hear what happened in those intermittent Trials.
I was in chat today with 20 people. Three Of them had done Intermittent Lupron/orgovyx For at least two or three years. All three of them have multiple metastasis. They mentioned that the time they were off the drugs became shorter every time they needed to go back on, because their PSA got too high. They’re now having to stay on the drugs for the rest of their lives.
It would be interesting to hear what the trial found.
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2 ReactionsThank You Jeffmarc for following up on Intermittent ADT. I like to get a 2nd, 3rd or 4th expert opinion from UCLA and UCSF other than Dr Scholz. Ultimately, I have to trust someone's opinion and take my chances.
Even if I stay on Orgovyx for 12 or 18 months and when I stop it, I could be in the same situation if I have a bad luck just like those three individuals?
Is your Gleason is below eight You might be able to stay off permanently, and are cured. Some people are cured, More than have reoccurrence. If above eight, I know a couple of people that have been permanently off, as an eight, but I do not recall of any higher. Everybody is so different.
I tend to agree with @jeffmarc in this one. And, of course your idea about 2nd and 3rd opinion. Did you ever have a Decipher score? That may give much more insight into the aggressiveness of your Gleason 9; not that a 9 isn’t more aggro just on face value, but the Decipher will tell you if it has a greater propensity to metastasize or not. If it IS more likely, then I think your RO would recommend staying on Orgovyx at least another 3-6 months. You don’t want to be Yo-Yo ing on and off ADT forever if you can avoid it.
BTW, what primary treatment did you receive? Surgery, radiation/cyberknife??