Well, that may vary, though we know "faster" than Lupron.,,!
My experience after 12 months of Orgovyx:
Within the first 2-3 weeks, the fatigue and muscle and joint stiffness subsided.
The hot flashes, well, they're like fat cells...probably three months! Interestingly, I'm 8 months off that treatment and an occasional hot flash has returned, noticeably early in the morning around 0200. I forgot to ask my oncologist about it at our early December consult. If it continues, will ask in February.
T did recover, 135 or so at three months, 400+ at six.
I would say the Gentilia shrinkage was also gone around the three-to-four-month point, definitely at eight! I never lost my libido, now, if the wife...
My experience may be in part because I am an active guy, exercise regularly, keep a reasonable diet and try and keep my stressors low, I have read articles about the role exercise plays not just in our general health but in mitigating the side effects while on treatment and our recovery from them when coming off.
It was not that I could do more after I came off treatment, it was that I felt better doing it.
I was on 1 30 day shot of Eliguard followed by 3 months Orgovyx months and stopped mid Sept 24.
6 weeks later the hot flashes subsided. Most of the intense side effects have stopped 3 months later (today-12th ). Still have occasional joint pain and some sleep interruptions. Biggest complaint is NO Libido. None. Started Cialis for blood flow. Helps that but not for being able to engage.
I had a low decipher score and a low risk Artera AI test score.
My Gleason was 4+3 in one core and 3+4 in 2 cores. 9 clear.
Working out helps for sure with many of the side effects.
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??
Ava, That Decipher score speaks volumes for the aggressiveness of your cancer.
I am not an oncologist and cannot advise you one way or another, but I would seriously consider a consult with perhaps a medical oncologist.
The last thing you want is to stay on Orgovyx longer than necessary, but in your case - based on others’ experiences on this forum - you might even want to add something to your ADT regimen or stay on Orgovyx for even longer.
Your cancer IS aggressive, no two ways about it, and you want to blast that mother NOW while you have it on the ropes.
Again, just my opinion and my nature to do a bit more rather than less! Best
Ava, That Decipher score speaks volumes for the aggressiveness of your cancer.
I am not an oncologist and cannot advise you one way or another, but I would seriously consider a consult with perhaps a medical oncologist.
The last thing you want is to stay on Orgovyx longer than necessary, but in your case - based on others’ experiences on this forum - you might even want to add something to your ADT regimen or stay on Orgovyx for even longer.
Your cancer IS aggressive, no two ways about it, and you want to blast that mother NOW while you have it on the ropes.
Again, just my opinion and my nature to do a bit more rather than less! Best
I feel the same way you do. I am not going to rush into anything. I have an appointment with a Urologist on December 16th and with an oncologist on January 16th. Both at UCI.
I consulted with Dr Schulz, Director of PCRI(Prostate Cancer Research Institute). He has all my test results.
Thank you for your advice.
I feel the same way you do. I am not going to rush into anything. I have an appointment with a Urologist on December 16th and with an oncologist on January 16th. Both at UCI.
I consulted with Dr Schulz, Director of PCRI(Prostate Cancer Research Institute). He has all my test results.
Thank you for your advice.
Hey ava, I’ve watched many of Dr Scholz’s Youtube presentations. Although he has terrible taste in neckwear, I like his down to earth explanations and easy manner.
However, he is a bit loose with his
facts. I recently saw a presentation on treatment for Gleason 8. In the video he stated - and I’m paraphrasing - “since we know for a fact that if a PSMA is clear, we can definitively say that there is no cancer outside the prostate. So we may not have to give ADT or if we do, for a much shorter time than we would have in the past”.
Now, even we as laymen, know this is not true. The PSMA is great but it’s basically negative up to .5 or so (PSA). It only begins to show anything above
that number and CANNOT detect micro metastases.
So he gives the false impression - and hope- that ADT is not necessary in Gleason 8 if a PET scan is clear. Of course it is, especially when paired with a high Decipher score.
So he’s a double board certified specialist on staff here and there, YouTube star….giving out wrong information.
You gotta stay on your toes, Ava, and research every single thing the doctors say. Your very life is at stake.
Hey ava, I’ve watched many of Dr Scholz’s Youtube presentations. Although he has terrible taste in neckwear, I like his down to earth explanations and easy manner.
However, he is a bit loose with his
facts. I recently saw a presentation on treatment for Gleason 8. In the video he stated - and I’m paraphrasing - “since we know for a fact that if a PSMA is clear, we can definitively say that there is no cancer outside the prostate. So we may not have to give ADT or if we do, for a much shorter time than we would have in the past”.
Now, even we as laymen, know this is not true. The PSMA is great but it’s basically negative up to .5 or so (PSA). It only begins to show anything above
that number and CANNOT detect micro metastases.
So he gives the false impression - and hope- that ADT is not necessary in Gleason 8 if a PET scan is clear. Of course it is, especially when paired with a high Decipher score.
So he’s a double board certified specialist on staff here and there, YouTube star….giving out wrong information.
You gotta stay on your toes, Ava, and research every single thing the doctors say. Your very life is at stake.
I don't know enough to defend him one way or other. He is one doctor of my care team. He is supposed to send his recommendation to my other doctors. I will listen to everyone before I make my final decision. I had only one visit with Dr Schulz, and it was a good visit!
Thank you.
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Well, that may vary, though we know "faster" than Lupron.,,!
My experience after 12 months of Orgovyx:
Within the first 2-3 weeks, the fatigue and muscle and joint stiffness subsided.
The hot flashes, well, they're like fat cells...probably three months! Interestingly, I'm 8 months off that treatment and an occasional hot flash has returned, noticeably early in the morning around 0200. I forgot to ask my oncologist about it at our early December consult. If it continues, will ask in February.
T did recover, 135 or so at three months, 400+ at six.
I would say the Gentilia shrinkage was also gone around the three-to-four-month point, definitely at eight! I never lost my libido, now, if the wife...
My experience may be in part because I am an active guy, exercise regularly, keep a reasonable diet and try and keep my stressors low, I have read articles about the role exercise plays not just in our general health but in mitigating the side effects while on treatment and our recovery from them when coming off.
It was not that I could do more after I came off treatment, it was that I felt better doing it.
My story, my experience...
Kevin
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3 ReactionsI was on 1 30 day shot of Eliguard followed by 3 months Orgovyx months and stopped mid Sept 24.
6 weeks later the hot flashes subsided. Most of the intense side effects have stopped 3 months later (today-12th ). Still have occasional joint pain and some sleep interruptions. Biggest complaint is NO Libido. None. Started Cialis for blood flow. Helps that but not for being able to engage.
I had a low decipher score and a low risk Artera AI test score.
My Gleason was 4+3 in one core and 3+4 in 2 cores. 9 clear.
Working out helps for sure with many of the side effects.
I was on Orgovyx for 4 months prior to my HIFU procedure. It took about 2 1/2 months for the flashes to significantly decrease.
My Decipher score 0.98!
I had SBRT radiation at UCLA.
I am inclined to stay on ORGOVYX for full 12 months!
Thank you all for your input.
Ava, That Decipher score speaks volumes for the aggressiveness of your cancer.
I am not an oncologist and cannot advise you one way or another, but I would seriously consider a consult with perhaps a medical oncologist.
The last thing you want is to stay on Orgovyx longer than necessary, but in your case - based on others’ experiences on this forum - you might even want to add something to your ADT regimen or stay on Orgovyx for even longer.
Your cancer IS aggressive, no two ways about it, and you want to blast that mother NOW while you have it on the ropes.
Again, just my opinion and my nature to do a bit more rather than less! Best
I feel the same way you do. I am not going to rush into anything. I have an appointment with a Urologist on December 16th and with an oncologist on January 16th. Both at UCI.
I consulted with Dr Schulz, Director of PCRI(Prostate Cancer Research Institute). He has all my test results.
Thank you for your advice.
-
Like -
Helpful -
Hug
1 ReactionHey ava, I’ve watched many of Dr Scholz’s Youtube presentations. Although he has terrible taste in neckwear, I like his down to earth explanations and easy manner.
However, he is a bit loose with his
facts. I recently saw a presentation on treatment for Gleason 8. In the video he stated - and I’m paraphrasing - “since we know for a fact that if a PSMA is clear, we can definitively say that there is no cancer outside the prostate. So we may not have to give ADT or if we do, for a much shorter time than we would have in the past”.
Now, even we as laymen, know this is not true. The PSMA is great but it’s basically negative up to .5 or so (PSA). It only begins to show anything above
that number and CANNOT detect micro metastases.
So he gives the false impression - and hope- that ADT is not necessary in Gleason 8 if a PET scan is clear. Of course it is, especially when paired with a high Decipher score.
So he’s a double board certified specialist on staff here and there, YouTube star….giving out wrong information.
You gotta stay on your toes, Ava, and research every single thing the doctors say. Your very life is at stake.
I don't know enough to defend him one way or other. He is one doctor of my care team. He is supposed to send his recommendation to my other doctors. I will listen to everyone before I make my final decision. I had only one visit with Dr Schulz, and it was a good visit!
Thank you.
-
Like -
Helpful -
Hug
1 Reaction