I'm stage 4 and I'm now 56. I was diagnosed in January 2023, so I've made it 1.5 years being castrate sensitive. My PSA was originally 359 but after being on ADT for over a year, my PSA dropped to less than .01 (undetectable) for 2 months. My doctor stopped my ADT to give my body a break and theoretically extend how long I will be castrate sensitive. I know that at some point I will have to go back on ADT but hopefully I'll be off it for a few months or years. " Intermittent ADT" is a newer way of treating the cancer in some guys to extend the use of ADT. Feel free to ask me questions. What's your situation?
I'm stage 4 and I'm now 56. I was diagnosed in January 2023, so I've made it 1.5 years being castrate sensitive. My PSA was originally 359 but after being on ADT for over a year, my PSA dropped to less than .01 (undetectable) for 2 months. My doctor stopped my ADT to give my body a break and theoretically extend how long I will be castrate sensitive. I know that at some point I will have to go back on ADT but hopefully I'll be off it for a few months or years. " Intermittent ADT" is a newer way of treating the cancer in some guys to extend the use of ADT. Feel free to ask me questions. What's your situation?
I discussed an ADT/ARSI break with my new radiation oncologist at my last appointment, but given that my PSA is still undetectable after almost three years (stage 4b oligometastatic), I decided not to mess with what's working; my concern is that if I took an ADT holiday, any dormant cancer cells hiding in my bones might come back castrate-resistant.
It's a tough decision (either way), and I wish you luck. Research so far — which is sparse — shows a slight increase in overall survival from ADT holidays for earlier-stage PCa, but not (yet) for advanced stages, so we're the guinea pigs. We have to keep in mind that ADT also comes with an elevated risk of heart disease and other issues, so it's not about the PCa alone.
For me, part of the decision criteria is the fact that I'm relatively young (late 50s) and am tolerating ADT and ARSI well, aside from annoyance side effects like mild fatigue, hot flushes, and sexual dysfunction. I had a full workup at the university heart institute, and aside from a slightly-prolonged QT interval (a common Apalutamide side-effect), all is well.
If I were elderly and the side-effects were hitting me harder, or if I felt they were destroying my quality of life, I might make a different decision about an ADT holiday; but for now, I'm content to wait for more studies.
I discussed an ADT/ARSI break with my new radiation oncologist at my last appointment, but given that my PSA is still undetectable after almost three years (stage 4b oligometastatic), I decided not to mess with what's working; my concern is that if I took an ADT holiday, any dormant cancer cells hiding in my bones might come back castrate-resistant.
It's a tough decision (either way), and I wish you luck. Research so far — which is sparse — shows a slight increase in overall survival from ADT holidays for earlier-stage PCa, but not (yet) for advanced stages, so we're the guinea pigs. We have to keep in mind that ADT also comes with an elevated risk of heart disease and other issues, so it's not about the PCa alone.
My line of thinking follows yours. I've been on Orgovyx since January and the plan is to give me a holiday starting January 2025. I know the longer you're on ADT, the higher the odds become you'll become resistant. On the other hand, giving a holiday has the potential to extend the efficacy of the ADT. The unknown is ... how long of a holiday you can take and reasonably expect to still be in the safe zone of the cancer not metastasizing (?) 1) There doesn't seem to be enough data to answer that question. 2) The answer would heavily be dependent on your individual condition.
I wouldn't mind a break but too concerned about taking one. After the 10 rounds of chemo, been taking Abiraterone andprednisone for the last 8 months. Get my firmagon shot once a month. Started my treatment in march of 23 and have had the fatigue every since. With the fatigue comes the shortness of breath. I'm still working full time, age 69 so there is that. Been working on my feet my whole life, maybe it's catching up to me. I know we preach exercise but when I get home, average about 8-10k steps, I"m not up for exercise. If I'm a lab experiment, that is okay, if it might help others. Not sure if I went off track here, lol, but I do wish the best to all.
Let narrow the question down further. Is there anyone out there that is stage 4 that has remained castrate sensitive for long time? Meaning, your PSA is not rising despite being on ADT and an ARSI?
Since I have mets to my sacrum, L5 and left hip, I had 5 radiation treatments to those areas in March 2023. That basically eliminated the pain I had in my hip
I wouldn't mind a break but too concerned about taking one. After the 10 rounds of chemo, been taking Abiraterone andprednisone for the last 8 months. Get my firmagon shot once a month. Started my treatment in march of 23 and have had the fatigue every since. With the fatigue comes the shortness of breath. I'm still working full time, age 69 so there is that. Been working on my feet my whole life, maybe it's catching up to me. I know we preach exercise but when I get home, average about 8-10k steps, I"m not up for exercise. If I'm a lab experiment, that is okay, if it might help others. Not sure if I went off track here, lol, but I do wish the best to all.
My doctor is checking my PSA monthly to watch for changes and we're ready to react before it becomes a problem. He believes that there is no downside and that my condition won't get worse even if my PSA jumps. This ADT break won't negatively affect my longevity and giving the rest of my body a break is a very good thing. It's also helped me mentally.
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I'm stage 4 and I'm now 56. I was diagnosed in January 2023, so I've made it 1.5 years being castrate sensitive. My PSA was originally 359 but after being on ADT for over a year, my PSA dropped to less than .01 (undetectable) for 2 months. My doctor stopped my ADT to give my body a break and theoretically extend how long I will be castrate sensitive. I know that at some point I will have to go back on ADT but hopefully I'll be off it for a few months or years. " Intermittent ADT" is a newer way of treating the cancer in some guys to extend the use of ADT. Feel free to ask me questions. What's your situation?
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2 ReactionsDid you have surgery or radiation?
I discussed an ADT/ARSI break with my new radiation oncologist at my last appointment, but given that my PSA is still undetectable after almost three years (stage 4b oligometastatic), I decided not to mess with what's working; my concern is that if I took an ADT holiday, any dormant cancer cells hiding in my bones might come back castrate-resistant.
It's a tough decision (either way), and I wish you luck. Research so far — which is sparse — shows a slight increase in overall survival from ADT holidays for earlier-stage PCa, but not (yet) for advanced stages, so we're the guinea pigs. We have to keep in mind that ADT also comes with an elevated risk of heart disease and other issues, so it's not about the PCa alone.
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Helpful -
Hug
2 ReactionsFor me, part of the decision criteria is the fact that I'm relatively young (late 50s) and am tolerating ADT and ARSI well, aside from annoyance side effects like mild fatigue, hot flushes, and sexual dysfunction. I had a full workup at the university heart institute, and aside from a slightly-prolonged QT interval (a common Apalutamide side-effect), all is well.
If I were elderly and the side-effects were hitting me harder, or if I felt they were destroying my quality of life, I might make a different decision about an ADT holiday; but for now, I'm content to wait for more studies.
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2 ReactionsMy line of thinking follows yours. I've been on Orgovyx since January and the plan is to give me a holiday starting January 2025. I know the longer you're on ADT, the higher the odds become you'll become resistant. On the other hand, giving a holiday has the potential to extend the efficacy of the ADT. The unknown is ... how long of a holiday you can take and reasonably expect to still be in the safe zone of the cancer not metastasizing (?) 1) There doesn't seem to be enough data to answer that question. 2) The answer would heavily be dependent on your individual condition.
So yes, we are the long-term lab experiment.
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1 ReactionI wouldn't mind a break but too concerned about taking one. After the 10 rounds of chemo, been taking Abiraterone andprednisone for the last 8 months. Get my firmagon shot once a month. Started my treatment in march of 23 and have had the fatigue every since. With the fatigue comes the shortness of breath. I'm still working full time, age 69 so there is that. Been working on my feet my whole life, maybe it's catching up to me. I know we preach exercise but when I get home, average about 8-10k steps, I"m not up for exercise. If I'm a lab experiment, that is okay, if it might help others. Not sure if I went off track here, lol, but I do wish the best to all.
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2 ReactionsThe research I saw showed that holidays could extend ADT efficacy for early-stage PCa, but not for advanced PCa. It's still early days, though.
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1 ReactionLet narrow the question down further. Is there anyone out there that is stage 4 that has remained castrate sensitive for long time? Meaning, your PSA is not rising despite being on ADT and an ARSI?
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1 ReactionSince I have mets to my sacrum, L5 and left hip, I had 5 radiation treatments to those areas in March 2023. That basically eliminated the pain I had in my hip
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1 ReactionMy doctor is checking my PSA monthly to watch for changes and we're ready to react before it becomes a problem. He believes that there is no downside and that my condition won't get worse even if my PSA jumps. This ADT break won't negatively affect my longevity and giving the rest of my body a break is a very good thing. It's also helped me mentally.
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