Taking Orgovyx long term

Posted by gismo @gismo, 3 days ago

I have been told that after taking orgovyx or any hormone drug for several years, the drug will lose its effect to halt the cancer. In other words, the prostate cancer will find a way to go around the drug.

Is this correct? Does anyone have any experience with long term use of orgovyx?

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

It’s not just Orgovyx, The same is true of every ADT drug Orgovyx, Lupron, Fermagon, and Eligard.

Eventually, you will become castrate resistant And you will need a second drug an ARSI (Zytiga or a lutamide). I had my first ADT drug fail 2.5 years after I started it, when my PSA started rising, so I went on Zytiga. It’s now about four years later, And I switched to Darolutamide. I’ve been undetectable for 18 months and even stopped taking Orgovyx about six months ago and because I was on ADT for eight years. Testosterone is really not coming back. The whole purpose of ADT is to suppress testosterone.

Even though ADT stopped working, it did not completely stop working so I continued to take it even though I was castrate resistant and it did keep my Testosterone low still. That just didn’t keep my PSA down. I needed the second drug to do that..

The Titan study showed that staying on ADT plus apalutamide could enable you to stay castrate resistant longer, resulting in longer overall survival.. It’s another thing to just consider, Maybe someone else could speak about this.

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@jeffmarc

It’s not just Orgovyx, The same is true of every ADT drug Orgovyx, Lupron, Fermagon, and Eligard.

Eventually, you will become castrate resistant And you will need a second drug an ARSI (Zytiga or a lutamide). I had my first ADT drug fail 2.5 years after I started it, when my PSA started rising, so I went on Zytiga. It’s now about four years later, And I switched to Darolutamide. I’ve been undetectable for 18 months and even stopped taking Orgovyx about six months ago and because I was on ADT for eight years. Testosterone is really not coming back. The whole purpose of ADT is to suppress testosterone.

Even though ADT stopped working, it did not completely stop working so I continued to take it even though I was castrate resistant and it did keep my Testosterone low still. That just didn’t keep my PSA down. I needed the second drug to do that..

The Titan study showed that staying on ADT plus apalutamide could enable you to stay castrate resistant longer, resulting in longer overall survival.. It’s another thing to just consider, Maybe someone else could speak about this.

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Thank you very much for your detailed response. I am copying your post for future reference. I think you know more than my urologist. If I could ask you a question: when were you first diagnosed and what stage was it. My cancer is high risk and am being treated with RT and orgovyx. Thank you again.

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Everything @jeffmarc wrote, plus sometimes they start you on the ARSI right from the beginning, paired with ADT (that's what happened with me).

I've managed to stay castrate-sensitive since 2021 on ADT (Firmagon, the Orgovyx) and ARSI (Erleada/Apalutamide), but everyone's experience is different.

I've also had radiation to the metastasis on my spine and to my prostate. My bone scan on Monday showed no evidence of the metastasis any more, and no detectable activity anywhere else in my bones.

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In 2010 I was 62 and a biopsy showed Gleason 3+4. Had surgery, after surgery they told me it was a 4+3. It was only stage two. 3.5 Years later it came back and I had radiation. 2 1/2 years later it came back and I went on Lupron. I became castrate resistant 2.5 years later and added biclautamide. 1 year later went on Zytiga, which kept my PSA down for 2 1/2 years., After some AFIB Issues I switched over to Nubeqa, The last 17 months I’ve been undetectable. I became stage four about six years ago. I did not find out I was BRCA2 Until four years ago.

Because of BRCA my cancer will keep coming back. I understand your high risk situation, not only do I feel it I have heard from people in your situation every month for years, I go to Prostate cancer group online meetings more than once a week.

I have had the one metastasis on my back zapped with radiation.

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Thank you again for your personal situation and information. I am sorry to hear about your BRCA. We are about the same age as I am 76. Last summer I was diagnosed with a gleason score of 9 (4/5) high risk. A pet scan and MRI showed that the tumor was local and had not spread, however I realize that scans are not 100% accurate. I was put on orgovyx in August and had 28 RT from December - January. I am on my 9th month of hormone therapy and will stay on it for 18 months. From what I know, my cancer is likely to return which is why your response is so helpful. I am sure you have heard my story before. I hope you continue to keep your cancer under control. Let me know if you have any further advice.

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I'm a bit concerned now. I was a 3+4 with cancer spreading to seminal vesical. Starting 6/12/2024, I went thru 25 sessions of RT as well as monthly Lupron shots at the start of RT. My PSA reading was at 9.52 (2 months prior to 6/12/24 start of Tx) and the next PSA test 10/4/24, PSA dropped to 0.09 and has continued to drop (last PSA reading 4/19/25) was 0.02. I was on Lupron for 7 months and switched to Orgovyx January/2025 as it is to have a quicker recovery period. Thus, on ADT now for 11 months. Originally, Rad Oncologist wanted me on it for 24 months. I now see a urologic oncologist and he feels I might be able to stop ADT at 18 months if my PSA continues to drop and stay undetectable.
The question now for my situation, is it realistic to think that if I remain undetectable, I can stay off ADT AND my T will recover and MAYBE I can end the ADT side effect and try to get back to a somewhat normal life? Please note I understand the cancer can return but is there any chance my life could be closer to what it was?

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That is not unreasonable to expect. I know many people who have had Gleason eight and higher, Had radiation and was able to stay undetectable for decades.

The Seminar vesicle issue is a problem since it does mean that the cancer is more aggressive, But your results seem to be really good. Normally, with a Gleason seven, you would only stay on ADT for six months. Staying on it for 18 months, may be enough.

Unfortunately, there is no way to know what’s going to happen. Everyone is different, but the cancer has a lot of tricks up its sleeve.

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