In praise of Orgovyx

I concur. I have an aggressive stage 3 and have been taking Orgovyx since May 2022. Great quality of life, work a couple part time jobs and have PSA testing every three months. Enjoying my family and grandchildren. I have not been able to rid myself of the cancer. Prostate removed at the start of 2014, came back within a few months, 5 days and 8 weeks of radiation in 2015 did not remove, but did slow the cancer down. PSMA did light up the cancer spots that have not been able to remove from day 1. A little anxiety each three months prior to testing, but always positive. Life is good. "Be Well Fish" On is Reel Recovery saying.

That’s really good info. After scaring me to death over the phone, I met with my PA and told her how concerned I was.
She looked at my numbers and said, “Why? You’d need numbers TWICE yours to be of any concern.”
I left there totally relieved but scratching my head from these mixed signals. She mumbled something about ‘so many patients with so many enzymes’ and I just chalk it up to stress and the workload.
Will be s lot less forgiving of the radiation tech if he/she screw up the dose!

I was told today that it depends on the severity of the cancer. Up to 2 years if fast growing version. The PSA count will determine when they take you off of the Orgovyx and that is done by your urologist.

You should not be going to a urologist if you are on Orgovyx. It is time to move to an oncologist, preferably a Genito Urinary Oncologist. A GU Oncologist specializes in prostate cancer and keeps up with all the latest things going on. You want that type of expertise when considering what to do if you are on Orgovyx.

Are you on Orgovyx because she had radiation? When you have a fast growing type of prostate cancer you need the best advice you can get. A urologist just doesn’t specialize in prostate cancer.

Once my cancer had come back. I didn’t speak to my urologist for almost 5 years, it’s just not their area of expertise.

I am in radiation therapy with a radiation oncologist now. I just started this 3 weeks ago but the urologist is a certified cancer therapist. I’m very early in my journey.

I just met my Medical oncologist at UCI just 2 hours ago. My PSA was 0.06 about a week ago after 6 months on Orgovyx. As jeffmarc said in a previous post that I should stay on Orgovyx for another 12 months, unless I am having terrible time with it, because my Gleason score was G9 even if PSA is 0.0.
That is his recommendation. Some other oncologist might suggest that I can take a holiday until PSA start raising up.

I just want to make it clear that it is not my opinion about staying on ADT. The NCCN sets the standards for prostate cancer treatment. I was just letting you know what the standard is for best outcomes..

Their standard is that if you have a Gleason 9 you should stay on ADT for 24 months after treatment.

If you’d like to know more about it, come to an Ancan.org weekly Advance prostate cancer meeting. You can sign up with Ancan and you will get a newsletter about the weekly meetings. The newsletter almost always has brand new information about things going on. if you come to a meeting, they will tell you about why you should follow the guidelines. They’ve been helping people for 15 years and have had a lot of people cut off their treatment early. and regret the results. The next 2 hour meeting is next Tuesday at 6 PM Eastern time. You need to install GoTo meeting to participate. I get a lot of my knowledge in those meetings.

In the last meeting, there was a person who was Gleason nine that had taken holidays and is now facing some really serious metastasis issues. If you go to the Ancan.org website you can actually watch a video of the last weeks meeting, there were two Gleason nine people that were talking about the serious problems they were having. You don’t want to be where they are at. One nice thing about watching the meetings is that you can speed up the audio/video and watch it quicker.

Wish you the best. It’s tough mentally when you first get prostate cancer.

Thank you very much for sharing all your knowledge to help fellow PC victims. You are doing a great service. I will stay on Orgovyx as long as I can handle it. There may be a case of diminishing returns after more than 18 months or 2 years. I am going to see Dr Scholz of PCRI also next month.

Orgo. was tough for the entire year I was on it. Then I actually read the Clinical Trial and learned that 'most' of the guys who stopped taking it (due to side effects presumably) and after their PSA went back up somewhat; if they restarted it, the PSA was slammed down in only a couple of weeks.

I had thus decided to take 'holidays' and do it intermittently. I'm about to start my 3rd round of taking it for just a couple months (or maybe a bit longer) with holidays in-between. Also easier on 'bones' though some doctors fail to tell the patients that. 'Balance is the key' to me; and QOL. I have decline surgery and done NO radiation; and 2 PET +PSMA showed shrinkage of the localized tumor during the intermittent cycling. I'd enjoy hearing any other experiences with intermittent cycling.