We need others' info on Stage 4 prostate cancer.

Posted by mcnobles77 @mcnobles77, Mar 21 11:52am

My husband was diagnosed with stage 4 prostate cancer with PSA 32.6 last December. Until November 2025, he did not have any symptoms and never had any PSA levels taken all his life. He's 77. Since it metastasized to his bone when it was found, he suffers from severe pain on areas affected. The first treatment recommended was ERLEADA pill once daily. He's been on it for almost a month. Level was taken at 3 weeks and his PSA went up to 38.2. I read that that is expected for some patients and will eventually come down in 3 months or so. The good thing that we observe is the pain on his shoulders have subsided to a tolerable state but the pain on his left leg affects his walking ability (Not bad as long as he is not walking).
My question is does anyone been treated with ERLEADA and how is it affecting you? We appreciate any response to this message.

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

Profile picture for denis76 @denis76

@oldgreenpaint

My Glyson level is 9, and my PSA is currently 0.03. To avoid cancer resistance, I want to stop ADT for at least 3 months and stay on Erleada. Do you think this is a risky move? Could you share more details about your experience? I read your message with great interest. Thanks, friend!

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@denis76 I don't think it's still the consensus is that ADT *causes* castrate-resistance — the AR-V7 mutation that helps prostate-cancer cells function without testosterone may already be present in some of them even before you start treatment — but there are other good reasons to take ADT vacations (under your oncologist's guidance) if your PSA is low and your cancer is still early stage. Taking pauses from ADT doesn't defer castrate resistance, but it does reduce your risk of bone-density loss, heart disease, type 2 diabetes, etc.

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Profile picture for northoftheborder @northoftheborder

@denis76 I don't think it's still the consensus is that ADT *causes* castrate-resistance — the AR-V7 mutation that helps prostate-cancer cells function without testosterone may already be present in some of them even before you start treatment — but there are other good reasons to take ADT vacations (under your oncologist's guidance) if your PSA is low and your cancer is still early stage. Taking pauses from ADT doesn't defer castrate resistance, but it does reduce your risk of bone-density loss, heart disease, type 2 diabetes, etc.

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@northoftheborder

Thanks for reply, Bro.

\\ if your PSA is low and your cancer is still early stage

I have 4 stage (metastases in bones) and this - not low. How you define "early stage"? What mean?

Am I wrong in thinking that low testosterone levels lead to resistance (the development of many cells that are not dependent on testosterone)? Resistance is characterized by such cells becoming dominant, and this is precisely what must be avoided—at any cost, even if it involves risk. I'm guessing someone possesses such sacred knowledge and knows the answer to this question; otherwise, how can we explain why some people live with this for 20-30 years? Incidentally, the first lutamides appeared after 2012, suggesting that some people survived without them, no?

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Profile picture for denis76 @denis76

@northoftheborder

Thanks for reply, Bro.

\\ if your PSA is low and your cancer is still early stage

I have 4 stage (metastases in bones) and this - not low. How you define "early stage"? What mean?

Am I wrong in thinking that low testosterone levels lead to resistance (the development of many cells that are not dependent on testosterone)? Resistance is characterized by such cells becoming dominant, and this is precisely what must be avoided—at any cost, even if it involves risk. I'm guessing someone possesses such sacred knowledge and knows the answer to this question; otherwise, how can we explain why some people live with this for 20-30 years? Incidentally, the first lutamides appeared after 2012, suggesting that some people survived without them, no?

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@denis76
Actually, low testosterone Levels alone don’t lead to resistance. I’ve quoted Richard Wassersug In a couple of messages in this forum. He’s been on estradiol for 22 years and it has kept his testosterone undetectable for all that time. He has not become castrate resistant. So low testosterone alone won’t lead to resistance.

They found that any of the ARPI’s can delay that resistance from coming on, So ADT alone may be a culprit in some respects. I was on ADT alone for 2 1/2 years and became castrate resistant, That was before they realized adding an ARPI with delay it.

Sure, people survived Before lutamides And Zytiga. My father died in 2008 at 88 years old. He had prostate cancer for years, but I remember the day he told me Lupron stopped working. He was a little panicked. He died within a year or so of prostate cancer. When I was a teenager, he had his teeth ground down and crowned without Novacaine, he had so much pain resistance. He would come home and eat dinner with us after that. The last few weeks before he died of prostate cancer he was in so much pain that he needed so much morphine that he couldn’t really communicate. Yes, people survived without ARPI drugs, but many of them died painfully.

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Profile picture for Jeff Marchi @jeffmarc

@denis76
Actually, low testosterone Levels alone don’t lead to resistance. I’ve quoted Richard Wassersug In a couple of messages in this forum. He’s been on estradiol for 22 years and it has kept his testosterone undetectable for all that time. He has not become castrate resistant. So low testosterone alone won’t lead to resistance.

They found that any of the ARPI’s can delay that resistance from coming on, So ADT alone may be a culprit in some respects. I was on ADT alone for 2 1/2 years and became castrate resistant, That was before they realized adding an ARPI with delay it.

Sure, people survived Before lutamides And Zytiga. My father died in 2008 at 88 years old. He had prostate cancer for years, but I remember the day he told me Lupron stopped working. He was a little panicked. He died within a year or so of prostate cancer. When I was a teenager, he had his teeth ground down and crowned without Novacaine, he had so much pain resistance. He would come home and eat dinner with us after that. The last few weeks before he died of prostate cancer he was in so much pain that he needed so much morphine that he couldn’t really communicate. Yes, people survived without ARPI drugs, but many of them died painfully.

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@jeffmarc

Yes, Jeff. I understand that the higher the Gleason score, the faster the cancer adapts? Isn't that right?

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Profile picture for denis76 @denis76

@jeffmarc

Yes, Jeff. I understand that the higher the Gleason score, the faster the cancer adapts? Isn't that right?

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@denis76
I’m not sure about that, I was a 4+3 And mine became castrate resistant pretty quickly. 2.5 years.

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Profile picture for denis76 @denis76

@northoftheborder

Thanks for reply, Bro.

\\ if your PSA is low and your cancer is still early stage

I have 4 stage (metastases in bones) and this - not low. How you define "early stage"? What mean?

Am I wrong in thinking that low testosterone levels lead to resistance (the development of many cells that are not dependent on testosterone)? Resistance is characterized by such cells becoming dominant, and this is precisely what must be avoided—at any cost, even if it involves risk. I'm guessing someone possesses such sacred knowledge and knows the answer to this question; otherwise, how can we explain why some people live with this for 20-30 years? Incidentally, the first lutamides appeared after 2012, suggesting that some people survived without them, no?

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@denis76 I suggest not trying to spitball this. The reason metastatic castrate-resistant cancer cells sometime become predominant in a low-testosterone environment is that the castrate-sensitive cancer cells are blocked; if you don't block them, they'll just spread the cancer even more quickly themselves.

Research on ADT holidays published in 2012/13 didn't find that the breaks delayed castrate resistance, as far as I remember; just that they decreased risks from side effects. And overall survival time actually *decreased* with ADT holidays for stage 4 prostate cancer.

However, your plan to stay on Erleada is a good one. ARSIs weren't in widespread use when the data was collected for those 2012/13 studies, and things are in flux.

For your and my specific situation — stage 4 castrate-sensitive PCa that responds well to ADT+Erleada — the LIBERTAS trial currently underway is testing whether it's safe to drop the ADT and continue with just Erleada, like you're considering. The first results are due out this fall, and final results next year. It would be a good time to start discussing that trial with your oncologist, as I have with mine.

p.s. I've been on ADT+Erleada continually since October 2021, and have not developed castrate-resistance: my PSA remains undetectable on the ultrasensitive test (< 0.01).

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Profile picture for northoftheborder @northoftheborder

@denis76 I suggest not trying to spitball this. The reason metastatic castrate-resistant cancer cells sometime become predominant in a low-testosterone environment is that the castrate-sensitive cancer cells are blocked; if you don't block them, they'll just spread the cancer even more quickly themselves.

Research on ADT holidays published in 2012/13 didn't find that the breaks delayed castrate resistance, as far as I remember; just that they decreased risks from side effects. And overall survival time actually *decreased* with ADT holidays for stage 4 prostate cancer.

However, your plan to stay on Erleada is a good one. ARSIs weren't in widespread use when the data was collected for those 2012/13 studies, and things are in flux.

For your and my specific situation — stage 4 castrate-sensitive PCa that responds well to ADT+Erleada — the LIBERTAS trial currently underway is testing whether it's safe to drop the ADT and continue with just Erleada, like you're considering. The first results are due out this fall, and final results next year. It would be a good time to start discussing that trial with your oncologist, as I have with mine.

p.s. I've been on ADT+Erleada continually since October 2021, and have not developed castrate-resistance: my PSA remains undetectable on the ultrasensitive test (< 0.01).

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@northoftheborder

Thanks 4 info , Bro! Remind me, please, your Glison, starting PSA , operation do/no do and which ADT drug?

Stay Health!

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Profile picture for denis76 @denis76

@northoftheborder

Thanks 4 info , Bro! Remind me, please, your Glison, starting PSA , operation do/no do and which ADT drug?

Stay Health!

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@denis76 No Gleason score (diagnosed with a biopsy of the metastasis on my spine, so automatically 8 or 9), starting PSA 68, emergency surgical debulking of the spinal tumour (which had compressed my spine and paralysed me from the ribs down), 20 gy post-surgical radiation to the spine, 60 gy radiation to the prostate, ADT was initially Firmagon then Orgovyx (both GnRH antagonists, so no initial testosterone surge before suppression) plus Erleada continuously since October 2021.

PSA dropped from 68 to 12 in 2–3 weeks, then undetectable on the next test, where it has remained.

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