Shortest term of ADT needed for G9, non metastatic PCA?

Posted by larryf954 @larryf954, Jul 24 9:29am

I’m 69 and been on Orgovyx and Zytiga for 5 weeks; and started my 40 radiation treatments a week ago. My side effects so far have also been mild thankfully but progressing. Very mild hot flashes and significant arthritic pain in my hips. I had Gleason 9, so I’ll be on ADT for an undetermined time. I fear the side effects will become more pronounced and I want to consider stopping the ADT after 6 months. The doctors are mentally preparing me for a longer period.

Wondering if anyone has a similar disease stage profile who considered or actually stopped the ADT shorter than 18-24 months?

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Good morning. I can only give you my experience which, of course, is not a recommendation for treatment. That is between you and your MO. I am 71 years old and was diagnosed at age 68. My pre treatment Testosterone level was in the 500s.

I had a biopsy of my prostate performed in 8/21 after several years of waxing and waning PSA from about 4 to 7. It was diagnosed as focal G8 in the location of a 1 cm enhancing nodule on MRI. I underwent RP in 10/21 after extensive consultation with multiple urologists, RO and MO at COE. Six months after my surgery my PSA rose to 0.37 and a PSMA PET scan revealed a solitary met in my mid thoracic spine. Again, consultations. Based on recent trial data I had SBRT (radiation) to T8. Four months later my PSA had risen to 4.5. Repeat PSMA PET showed no activity at T8 but a new positive left pelvic node.

At this time I did extensive research about aggressive treatment and had a Zoom consultation with Johns Hopkins. I was thoroughly impressed and began immediate triplet therapy (3 month Lupron injection, Darolutamide and Taxotere chemo x4). My PSA dropped to undetectable after 2nd chemo treatment. My MO is a very experienced prostate cancer physician who is Director of the Prostate Cancer Research facility at Hopkins and has written (or co-authored) over 500 peer reviewed articles on prostate cancer. He treats numerous patients with oligo metastatic disease and has been involved in numerous trials. I mention this only because his approach is somewhat different from the current SOC.

After the 3 month conclusion of the chemo he discontinued the Darolutamide. I underwent whole pelvic radiation with boost to the prostate bed and the one positive node on repeat PSMA PET. I continued on Lupron for one year with 3 month checks of my PSA and Testosterone. PSA remained undetectable and T < 3. After the one year mark he discontinued the Lupron (last injection was 7/23). My PSA remains undetectable (had annual PE this week and uPSA test < 0.014). My T has only gone up to 30s. They tell me return is variable and can take more than a year to normalize (based on age, prior T level before treatment and length of time on ADT).

I am told that if I reach the 3 year mark post treatment with return of T and PSA undetectable, my longer term outlook is good. If my PSA rises he will do a repeat PET and radiate any visible mets (return to Lupron is TBD).
Treatment for prostate cancer is changing so rapidly that articles published several years ago may not be cutting edge. Who knows what the right answers are? Being a retired physician with over 40 years experience I decided I needed to find a team I trusted and follow their recommendations. The ultimate decisions are mine, of course, but I don't try to direct my own treatment by something I read on the Internet or because another patient suggested so and so course of treatment. That's just my plan. Everyone is different.

I wish you and everyone battling this disease the best of luck and prayers.

REPLY

I had a gleason 10, and stopped the ADT(Orgovyx) at 18 months vs 24. The side effects didn't all get worse with time, but the leg and hand pain did . Now 3 months off of treatment, my knees are stronger and the hand pain is gone. I did stay very active the entire time, and the gym 3-4 times per week. followed a "no red meat" diet and supplemented with protein and collagen.

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@retireddoc

Good morning. I can only give you my experience which, of course, is not a recommendation for treatment. That is between you and your MO. I am 71 years old and was diagnosed at age 68. My pre treatment Testosterone level was in the 500s.

I had a biopsy of my prostate performed in 8/21 after several years of waxing and waning PSA from about 4 to 7. It was diagnosed as focal G8 in the location of a 1 cm enhancing nodule on MRI. I underwent RP in 10/21 after extensive consultation with multiple urologists, RO and MO at COE. Six months after my surgery my PSA rose to 0.37 and a PSMA PET scan revealed a solitary met in my mid thoracic spine. Again, consultations. Based on recent trial data I had SBRT (radiation) to T8. Four months later my PSA had risen to 4.5. Repeat PSMA PET showed no activity at T8 but a new positive left pelvic node.

At this time I did extensive research about aggressive treatment and had a Zoom consultation with Johns Hopkins. I was thoroughly impressed and began immediate triplet therapy (3 month Lupron injection, Darolutamide and Taxotere chemo x4). My PSA dropped to undetectable after 2nd chemo treatment. My MO is a very experienced prostate cancer physician who is Director of the Prostate Cancer Research facility at Hopkins and has written (or co-authored) over 500 peer reviewed articles on prostate cancer. He treats numerous patients with oligo metastatic disease and has been involved in numerous trials. I mention this only because his approach is somewhat different from the current SOC.

After the 3 month conclusion of the chemo he discontinued the Darolutamide. I underwent whole pelvic radiation with boost to the prostate bed and the one positive node on repeat PSMA PET. I continued on Lupron for one year with 3 month checks of my PSA and Testosterone. PSA remained undetectable and T < 3. After the one year mark he discontinued the Lupron (last injection was 7/23). My PSA remains undetectable (had annual PE this week and uPSA test < 0.014). My T has only gone up to 30s. They tell me return is variable and can take more than a year to normalize (based on age, prior T level before treatment and length of time on ADT).

I am told that if I reach the 3 year mark post treatment with return of T and PSA undetectable, my longer term outlook is good. If my PSA rises he will do a repeat PET and radiate any visible mets (return to Lupron is TBD).
Treatment for prostate cancer is changing so rapidly that articles published several years ago may not be cutting edge. Who knows what the right answers are? Being a retired physician with over 40 years experience I decided I needed to find a team I trusted and follow their recommendations. The ultimate decisions are mine, of course, but I don't try to direct my own treatment by something I read on the Internet or because another patient suggested so and so course of treatment. That's just my plan. Everyone is different.

I wish you and everyone battling this disease the best of luck and prayers.

Jump to this post

Had appt. Today with MO. He s following your steps as you described. When I come off ADT after 24 months, expect nothing immediately as I m 75. Gonna take awhile to see a change, in T and PSA. Been on Trelstar 15 months, with Arbiterone/ prednisone for the pelvic lymph node involvement. I hope I can do as good as your doing in my future. Thanks.

REPLY

I was Gleason 9 and did ADT for 3 years. I stopped ADT a year ago, I feel much better now, and my strength is back. PSA is creeping up, but still below 0.5

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@retireddoc

Good morning. I can only give you my experience which, of course, is not a recommendation for treatment. That is between you and your MO. I am 71 years old and was diagnosed at age 68. My pre treatment Testosterone level was in the 500s.

I had a biopsy of my prostate performed in 8/21 after several years of waxing and waning PSA from about 4 to 7. It was diagnosed as focal G8 in the location of a 1 cm enhancing nodule on MRI. I underwent RP in 10/21 after extensive consultation with multiple urologists, RO and MO at COE. Six months after my surgery my PSA rose to 0.37 and a PSMA PET scan revealed a solitary met in my mid thoracic spine. Again, consultations. Based on recent trial data I had SBRT (radiation) to T8. Four months later my PSA had risen to 4.5. Repeat PSMA PET showed no activity at T8 but a new positive left pelvic node.

At this time I did extensive research about aggressive treatment and had a Zoom consultation with Johns Hopkins. I was thoroughly impressed and began immediate triplet therapy (3 month Lupron injection, Darolutamide and Taxotere chemo x4). My PSA dropped to undetectable after 2nd chemo treatment. My MO is a very experienced prostate cancer physician who is Director of the Prostate Cancer Research facility at Hopkins and has written (or co-authored) over 500 peer reviewed articles on prostate cancer. He treats numerous patients with oligo metastatic disease and has been involved in numerous trials. I mention this only because his approach is somewhat different from the current SOC.

After the 3 month conclusion of the chemo he discontinued the Darolutamide. I underwent whole pelvic radiation with boost to the prostate bed and the one positive node on repeat PSMA PET. I continued on Lupron for one year with 3 month checks of my PSA and Testosterone. PSA remained undetectable and T < 3. After the one year mark he discontinued the Lupron (last injection was 7/23). My PSA remains undetectable (had annual PE this week and uPSA test < 0.014). My T has only gone up to 30s. They tell me return is variable and can take more than a year to normalize (based on age, prior T level before treatment and length of time on ADT).

I am told that if I reach the 3 year mark post treatment with return of T and PSA undetectable, my longer term outlook is good. If my PSA rises he will do a repeat PET and radiate any visible mets (return to Lupron is TBD).
Treatment for prostate cancer is changing so rapidly that articles published several years ago may not be cutting edge. Who knows what the right answers are? Being a retired physician with over 40 years experience I decided I needed to find a team I trusted and follow their recommendations. The ultimate decisions are mine, of course, but I don't try to direct my own treatment by something I read on the Internet or because another patient suggested so and so course of treatment. That's just my plan. Everyone is different.

I wish you and everyone battling this disease the best of luck and prayers.

Jump to this post

Thank you for sharing your experience and the knowledge you gained. I wish you well also.

REPLY
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