Time to Castrate Resistance: Anyone remained castrate sensitive 5+ yrs

Posted by wooldridgec @wooldridgec, Jul 6, 2024

Has anyone remained castrate sensitive for more than 5,6,7,8,10 years?

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@wooldridgec

I am very sorry. Are you stage 4 metastatic? Did you by any chance have triplet therapy or did you do doublet therapy or your initial treatment?

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Stage 4. Radiation, Dox's, ADT.

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@ringmastr1

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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Considering a holiday for the following reasons.Been on orgovyx and arbiterone acetate with prednisone since April 2023. Psa immediately became undectable and continues til now 15 months later. Some on here document scans lack accuracy at undectable. If I take a holiday and psa rises at some point scans will gain accuracy. My hope is to locate local hot spots that can be treated with mri guided proton therapy rather than indiscriminately carpet bombing my entire pelvic area. Had psa failure following surgery scans now clear but accuracy remains a question.

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@proftom2

I'll let you know in a few months. I am 3.7 years in and just entering the doubling zone. Which means my castrate sensitiveness is on the move. Thankfully we've, my oncologist, wife and I, have been mindfully watching this for the last 9 months and it's time to make a new plan. Appointment is tomorrow, thinking Step Up Bat trail.

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How are you doing. You said your PSA was going up a while ago. What are doing about ti now and how affective has it been?

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@wooldridgec

How are you doing. You said your PSA was going up a while ago. What are doing about ti now and how affective has it been?

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Doing well. Thank you for asking. PSA is still rising, we start radiation in a few weeks. Hopefully that stops the rise and knocks it down. My oncology is really not that concerned about rise. He thinks its to be expected during this phase of the journey. I've gone from responding to resistant to hormone meds, until we find the right mix of meds to bring it down.

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Also doing well. Over 5 years no cancer growth or activity. Diagnosed with APC in 2018. Did 4 rounds of chemo early 2019 , then Lupron for a year or so then transitioning to ORGOVYX. With the exception of side effects no castrate resistance to hormone drugs. PSA undetectable. Good Luck to everyone.

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@mikejf

Also doing well. Over 5 years no cancer growth or activity. Diagnosed with APC in 2018. Did 4 rounds of chemo early 2019 , then Lupron for a year or so then transitioning to ORGOVYX. With the exception of side effects no castrate resistance to hormone drugs. PSA undetectable. Good Luck to everyone.

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How are you now, Mike? A new discussion topic "Castration Resistance" was opened yesterday. Then I searched for previous discussions on the same subject. I read the oldest, and the latest (which is yours). I found these two comments helpful already, but at some point I will still the rest. I want to thank every one who has shared their PCa journey and specifically regarding castrate resistance.

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@billfarm

Considering a holiday for the following reasons.Been on orgovyx and arbiterone acetate with prednisone since April 2023. Psa immediately became undectable and continues til now 15 months later. Some on here document scans lack accuracy at undectable. If I take a holiday and psa rises at some point scans will gain accuracy. My hope is to locate local hot spots that can be treated with mri guided proton therapy rather than indiscriminately carpet bombing my entire pelvic area. Had psa failure following surgery scans now clear but accuracy remains a question.

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My husband is Grade 5 Stage 4 with a Decipher reading of .99; and started with radiation (12 weeks) followed by Lupron shots every three months and Abiraterone (we are at 18 months). He has decided at 2 years (when the Doctor says abiraterone and Lupron will be stopped, he has decided he will have no more treatment. He is 80. His psa currently is undetectable right now.

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Surgery & 36 radiation treatments in September 2004 at age 54. PSA undetectable until early 2011. Periodic shots of Lupron or Eligard generally at six-month intervals until April 2024 when PSMA indicated small mass in groin. Received Lupron shot at that time. Shortly after moved to another state, changing doctors. MRI failed to detect the suspected mass in groin. Tried Nubeqa and had rash head to foot. Received three more lupron shots in next seven months.
Again, no detectable PSA!
Downside - I now have a situation where 2 minutes of exertion wipes me out, particularly if it is hot. Going up stairs is tiring.
Best advice lupron is going to be hard, watch diet (I've gained 30 pounds since) so EXERCISE as much as possible and eat healthy/less! You will struggle with depression.
My wife is thankful, and I am too but the treatment takes a toll. But then that's true of life.

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@airportone

Surgery & 36 radiation treatments in September 2004 at age 54. PSA undetectable until early 2011. Periodic shots of Lupron or Eligard generally at six-month intervals until April 2024 when PSMA indicated small mass in groin. Received Lupron shot at that time. Shortly after moved to another state, changing doctors. MRI failed to detect the suspected mass in groin. Tried Nubeqa and had rash head to foot. Received three more lupron shots in next seven months.
Again, no detectable PSA!
Downside - I now have a situation where 2 minutes of exertion wipes me out, particularly if it is hot. Going up stairs is tiring.
Best advice lupron is going to be hard, watch diet (I've gained 30 pounds since) so EXERCISE as much as possible and eat healthy/less! You will struggle with depression.
My wife is thankful, and I am too but the treatment takes a toll. But then that's true of life.

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Lupron should be outlawed! There must be better medicine out there. with Lupron you end up with an inni insteda of an outy.

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