Taking Orgovyx long term

Posted by gismo @gismo, May 1 1:07pm

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?

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@jime51

I want my testosterone to return while keeping my PSA low in order to have returning strength with a more normal quality of life. I won't know whether the cancer has been eliminated until I stop ADT or my PSA starts rising regardless, indicating castrate resistance and the time to begin using or adding Darolutamide. Or am I missing something?

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Lymph node cancer is not the same as prostate cancer and doesn’t live on testosterone.

Yes, you can stop ADT, But if your PSA has not stayed undetectable for at least six months, you may not be pleased with the results in a few months. You don’t mention your Gleeson score and that is a real factor. If it’s a seven and yes, six months undetectable should be fine if it’s an eight or a nine that may not be enough time.

You can always stop ADT for a few months to see what happens and if your PSA rises along with your testosterone, you can start back on Orgovyx.

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@northoftheborder

Understandable, and that's a very personal choice. We all have to balance quality and quantity of life.

I've lost track of your situation, but if your cancer is already metastatic, taking ADT together with one of the -lutamides now is more effective than waiting to add a -lutamide later (per TITAN, etc).

If your cancer becomes castrate-resistant, you still have good treatment options these days, but they can be tougher than just taking ADT and a -lutamide, so the longer you can delay castrate resistance, the better.

Best of luck, whatever you choose.

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Gleason 7, N1M0 initial PET eval indicated active Iliac nodes, surgical oncologist disagrees. 5mos .Orgovyx now and completed 44 radiation treatments. Suggesting 24 mos Orgovyx; I suggest 12 mos. Orgovyx and then 6-12 mos. Darolutamide to eliminate castrate resistance. Oncology patients tell me Darolutamide has far fewer side effects; oncology team says adding Darolutamide makes side effects worse. No decision planned until Christmas/1 year at this point

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@jeffmarc

Lymph node cancer is not the same as prostate cancer and doesn’t live on testosterone.

Yes, you can stop ADT, But if your PSA has not stayed undetectable for at least six months, you may not be pleased with the results in a few months. You don’t mention your Gleeson score and that is a real factor. If it’s a seven and yes, six months undetectable should be fine if it’s an eight or a nine that may not be enough time.

You can always stop ADT for a few months to see what happens and if your PSA rises along with your testosterone, you can start back on Orgovyx.

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If I read correctly, my PSA will never be undetectable because I‘ve not had surgery. Gleason 7 (3+4, 4+3); PET N1M0, both iliac lymph nodes. 44 radiation treatments, 26 to pelvis generally and 18 additional to prostate only. My team wants me on Orgovyx 24 mos, but I propose Orgovyx 12 months and switching to Nubeqa for another 6-12 mos. Day after radiation ended, my PSA had dropped from 6 at diagnosis last fall to .11 on 4/23. Started Orgovyx 12/24/24.

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With ADT you have almost a 70% chance of having your PSA become undetectable, Even though you’ve only had radiation.

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@jeffmarc

With ADT you have almost a 70% chance of having your PSA become undetectable, Even though you’ve only had radiation.

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Yes, my PSA became undetectable months before I had SBRT to my prostate. While you're taking them, ARSIs like Darolutamide or Apalutamide help keep prostate cancer from progressing, but they don't eliminate it.

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@northoftheborder

Yes, my PSA became undetectable months before I had SBRT to my prostate. While you're taking them, ARSIs like Darolutamide or Apalutamide help keep prostate cancer from progressing, but they don't eliminate it.

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Isn't that the same outcome with ADT: it causes the cancer to "duck" but doesn't kill it, all the while the cancer cells are working to make their own testosterone?

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@jime51

Isn't that the same outcome with ADT: it causes the cancer to "duck" but doesn't kill it, all the while the cancer cells are working to make their own testosterone?

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The cancer cells may or may not evolve to become castrate resistant, depending on how fully they're repressed. The trouble is that there is no medical way to detect if there are still some dormant cancer cells or micrometastases, waiting to start growing again some day.

ADT buys you time, and ARSIs like Apalutamide extend that time significantly for many prostate cancer patients. Radiation therapy also buys time (as does chemo, in the cast of polymetastatic PCa). They add up.

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@northoftheborder

The cancer cells may or may not evolve to become castrate resistant, depending on how fully they're repressed. The trouble is that there is no medical way to detect if there are still some dormant cancer cells or micrometastases, waiting to start growing again some day.

ADT buys you time, and ARSIs like Apalutamide extend that time significantly for many prostate cancer patients. Radiation therapy also buys time (as does chemo, in the cast of polymetastatic PCa). They add up.

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Yes, it seems the only way to know whether other cancer cells will come out of dormancy is to stop therapy or if they become castrate resistant during ADT and the PSA rises with their growth. I'm inclined to take ADT for one year, then switch to Darolutamide for six months. If PSA is acceptably low at that point, take a therapy holiday. If PSA begins to rise with Darolutamide, add ADT back in and ask for a scan to determine whether spot radiation might eliminate whatever's still there.

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@jime51

Yes, it seems the only way to know whether other cancer cells will come out of dormancy is to stop therapy or if they become castrate resistant during ADT and the PSA rises with their growth. I'm inclined to take ADT for one year, then switch to Darolutamide for six months. If PSA is acceptably low at that point, take a therapy holiday. If PSA begins to rise with Darolutamide, add ADT back in and ask for a scan to determine whether spot radiation might eliminate whatever's still there.

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That's a fair choice.

However, for metastatic castrate-sensitive prostate cancer, studies like TITAN have shown dramatically better outcomes when you start the -lutamide at the same time as ADT instead of waiting until the ADT stops suppressing PSA. It would be worth discussing with your oncologist.

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@northoftheborder

That's a fair choice.

However, for metastatic castrate-sensitive prostate cancer, studies like TITAN have shown dramatically better outcomes when you start the -lutamide at the same time as ADT instead of waiting until the ADT stops suppressing PSA. It would be worth discussing with your oncologist.

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At issue is that the surgical/hormone oncologist and the radiation oncologist have differing opinions of the seriousness of my cancer. They work closely together, but the surgical oncologist thinks the person who initially reported my PET results mistook urine (the radiation being eliminated) for lymph node metastasis, saying the two are in close proximity. The radiation oncologist took the stance of "lymph node positive" in his approach to my treatment and the other specialist supported the use of Orgovyx, which was initially prescribed by my urologist. Both surgical and radiation specialists say their experience is that adding a lutamide to Orgovyx significantly increases side effects, but what I find online doesn't confirm that. Any insight?

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