Anyone stopped Orgovyx and started again if PSA rises?

Posted by rnpalarino1 @rnpalarino1, Sep 25 9:57am

Hello All:
I am 78 year old man, active with exercise and golf. I had my prostate removed over three years ago. Using Viagra and Trimix peridically works, but at 78 things aren't what they used to be.
PSA reading for first two years after removal was < .01. At 2.5 years PSA began to rise, eventually to .93. MDA Anderson, Jacksonville did a PSMA scan and could not find any cancer. Doctor put me on Orgovyx. I have been on Orgovyx for about 6 months and PSA is now at < .04. I have had very few side effects from the medication; some sleeplessness, a few hot flashes and some tiredness, but nothing major keeping me from activities I enjoy. The oncologist is thinking about giving me a break from the medication or just stopping it and closely follow my PSA readings.
I would rather not be on the medication however, my concern is that if I go off the medication my PSA will again begin to rise and I will have to go back on the medication. My questions are; will the cancer become resistant to an off again/on again regime? At 78 should I just stop taking the medication and take my chances on the slow growth of the cancer? Thanks for your thoughts.
Nick

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@jeffmarc

In some cases, stopping and starting, the medicine can cause it to be less effective, but that’s usually with people who have much more serious cancer cases than you have.

I know many people who have stopped taking their drugs because their PSA dropped, as yours has, and some of them have gone a couple of years before their PSA started to rise. Stopping and starting a couple of times is not gonna really cause a problem.

This is something you should definitely consider doing. Make sure to get monthly PSA tests.

One of the benefits of Orgovyx is that the testosterone usually comes back quickly. That will make you feel better, be aware that at 78 testosterone tends to rise much slower than with the younger people.

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Our doctor gave us studies that have shown taking a vacation from ADT is a good idea. My husband is a stage 4 and has been on and off Lupron (he's now in Orgovyx) and Xtandi 2 times in 2 years. He has a blood draw every 6 weeks to monitor the PSA rise. When it reaches 2.0 he goes back on the meds. It gives his body a break from the side effects.

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@michaelcharles

90 days after RP with PSA "persistent" at .19 and a "clean" PSA pet scan, I was treated with Salvage Radiation to the whole pelvic region and pelvic lymph nodes as the most likely location for residual PCa, together with short term ADT.
My post Salvage Treatment PSA has been < .02 for about 1 yr now.
Very grateful for the results so far. Just sharing my treatment history.
Best wishes.

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Every good-news post here makes me smile. Thanks for sharing!

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Hello All:I am 78 years old and had my prostate removed over 3 years ago. Post surgery my PSA was < 0.01. After two years it began to climb. At .93 a PMSA PET Scan was done finding no signs of cancer. The Mayo Clinic oncologist in Jacksonville put me on Orgovyx. I have been on it for over 7 months. I have had some weakness and hot flashes but nothing terrible which would alter my life style. After three months on the drug my PSA declined to .04. I go back to oncologist next week to take another PSA test. The doctor indicated I could go off Orgovyx (for awhile) if my PSA stayed low getting some of my testosterone back and I would feel stronger.My question to the group is, "Has anyone gone off Orgovyx and had to go back on because your PSA began to rise again?"

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@rnpalarino1

Hello All:I am 78 years old and had my prostate removed over 3 years ago. Post surgery my PSA was < 0.01. After two years it began to climb. At .93 a PMSA PET Scan was done finding no signs of cancer. The Mayo Clinic oncologist in Jacksonville put me on Orgovyx. I have been on it for over 7 months. I have had some weakness and hot flashes but nothing terrible which would alter my life style. After three months on the drug my PSA declined to .04. I go back to oncologist next week to take another PSA test. The doctor indicated I could go off Orgovyx (for awhile) if my PSA stayed low getting some of my testosterone back and I would feel stronger.My question to the group is, "Has anyone gone off Orgovyx and had to go back on because your PSA began to rise again?"

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Orgovyx can confuse the PSMA/PET. You might talk to the radiologist. I was told that this PSMA scan can be false negative if you are on Orgovyx.
Best wishes.

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@rnpalarino1

Hello All:I am 78 years old and had my prostate removed over 3 years ago. Post surgery my PSA was < 0.01. After two years it began to climb. At .93 a PMSA PET Scan was done finding no signs of cancer. The Mayo Clinic oncologist in Jacksonville put me on Orgovyx. I have been on it for over 7 months. I have had some weakness and hot flashes but nothing terrible which would alter my life style. After three months on the drug my PSA declined to .04. I go back to oncologist next week to take another PSA test. The doctor indicated I could go off Orgovyx (for awhile) if my PSA stayed low getting some of my testosterone back and I would feel stronger.My question to the group is, "Has anyone gone off Orgovyx and had to go back on because your PSA began to rise again?"

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I know many people have that have done that. Some have stopped Orgovyx or Lupron, which works the same as Orgovyx, and a year, more or less, later, they have had to go back on it. it is possible you could be cured but a lot of it depends on your diagnosis.

I am surprised they didn’t do salvage radiation. Normally they do that after the prostatectomy when your PSA rises above .2. I guess the clear PSMA scan was why they didn’t do it.

What was your Gleason score after the surgery? Were there any other complications like intraductal or cribriform? if you had high Gleason, above seven, or the other two complications then it is very likely it will come back. The thing is no two people are the same so you can’t tell someone exactly what will happen to them.

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@jeffmarc

I know many people have that have done that. Some have stopped Orgovyx or Lupron, which works the same as Orgovyx, and a year, more or less, later, they have had to go back on it. it is possible you could be cured but a lot of it depends on your diagnosis.

I am surprised they didn’t do salvage radiation. Normally they do that after the prostatectomy when your PSA rises above .2. I guess the clear PSMA scan was why they didn’t do it.

What was your Gleason score after the surgery? Were there any other complications like intraductal or cribriform? if you had high Gleason, above seven, or the other two complications then it is very likely it will come back. The thing is no two people are the same so you can’t tell someone exactly what will happen to them.

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Yeah, I thought radiation after BCR was standard.

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@rnpalarino1

Hello All:I am 78 years old and had my prostate removed over 3 years ago. Post surgery my PSA was < 0.01. After two years it began to climb. At .93 a PMSA PET Scan was done finding no signs of cancer. The Mayo Clinic oncologist in Jacksonville put me on Orgovyx. I have been on it for over 7 months. I have had some weakness and hot flashes but nothing terrible which would alter my life style. After three months on the drug my PSA declined to .04. I go back to oncologist next week to take another PSA test. The doctor indicated I could go off Orgovyx (for awhile) if my PSA stayed low getting some of my testosterone back and I would feel stronger.My question to the group is, "Has anyone gone off Orgovyx and had to go back on because your PSA began to rise again?"

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Thanks for everyone's comments. Two points in order to address issues raised in previous responses; I cannot have radiation because I have a J-Pouch and radiation could damage the J-Pouch tissue. Additionally, I did not begin taking Orgovyx until after my PMSA PET Scan so there was no masking of any residual cancer. Finally my Gleason score was 9 and I probably should have expected some residual cancer even after my prostate was removed. At any rate the oncologist appointment is Wednesday and we will determine the future direction of treatments at that point. Thanks again to all who responded.

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@rnpalarino1

Hello All:I am 78 years old and had my prostate removed over 3 years ago. Post surgery my PSA was < 0.01. After two years it began to climb. At .93 a PMSA PET Scan was done finding no signs of cancer. The Mayo Clinic oncologist in Jacksonville put me on Orgovyx. I have been on it for over 7 months. I have had some weakness and hot flashes but nothing terrible which would alter my life style. After three months on the drug my PSA declined to .04. I go back to oncologist next week to take another PSA test. The doctor indicated I could go off Orgovyx (for awhile) if my PSA stayed low getting some of my testosterone back and I would feel stronger.My question to the group is, "Has anyone gone off Orgovyx and had to go back on because your PSA began to rise again?"

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You ask...""Has anyone gone off Orgovyx and had to go back on because your PSA began to rise again?"

I can answer the first part, yes.

The 2nd part, not yet, but the clinical data i the six months since my medical team and I agreed to stop Orgovyx says it's in my future, we just don't know when. Given my clinical history, I would venture 18-24 months. When coming off treatment, we actively monitor, labs and consults every three months and have decision criteria about when to image, three or more PSA increases and PSA between .5-1.0. Informed by clinical data, the PSA, PSADT and PSAV, imaging, and clinical history - GS 8, GG4...we decide on treatment, when to start, with what, for how long...

For now, it's akin to driving out in eastern Colorado on my way from Kansas City to go skiing in Keystone, Breckinridge and Vail, I see the distant headlight a train so I know it's coming, when will it get here. hard to say, it will though (I think 18-24 months)!

I meet with my oncologist on Thursday. I know what he envisions as next treatment when that time comes, 24 months on Orgovyx and an ARI, likely Xtandi. Will we add SBRT, that depends on imaging results. My oncologist knows as does my radiologist) that we will want to discuss treatment options - say the PATCH trial, EMBARK but with using only an ARI, or SBRT and six months ADT.

Only thing I know at this point is I will go back on treatment at some point, my clinical history says so, and, I will have choices.

Kevin

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@rnpalarino1

Thanks for everyone's comments. Two points in order to address issues raised in previous responses; I cannot have radiation because I have a J-Pouch and radiation could damage the J-Pouch tissue. Additionally, I did not begin taking Orgovyx until after my PMSA PET Scan so there was no masking of any residual cancer. Finally my Gleason score was 9 and I probably should have expected some residual cancer even after my prostate was removed. At any rate the oncologist appointment is Wednesday and we will determine the future direction of treatments at that point. Thanks again to all who responded.

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@rnpalarino1, I merged the 2 discussions together where you asked about restarting Orgovyx should your PSA indicate a rising trend.

May I ask, how did the appointment go with your oncologist? What did you learn? What did you decide to do at the moment?

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@colleenyoung

@rnpalarino1, I merged the 2 discussions together where you asked about restarting Orgovyx should your PSA indicate a rising trend.

May I ask, how did the appointment go with your oncologist? What did you learn? What did you decide to do at the moment?

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Coleen:
Thank you for asking. My PSA is now < .01. Doc said it is now in my court as to when I want to stop taking Orgovyx. He will take me off but expects my PSA to rise again over time and then he will recommend I go back on the medication when PSA increases over a 6 month period. I guess it was too much to hope this cancer would go away. For now I am staying on the medication until February. I will stop it for about 3-6 months at that point. I am going to Scotland to play golf in July and will need some testosterone.😇

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