1. < Prostate Cancer

list of 10+ years metastatic prostate survivor on lupron

Posted by johnk1944 @johnk1944, Dec 24, 2023

As encouragement to worried newbies. Please include when procedure was done when metastatic was found and what you have done which may have helped you survive

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

billfarm | @billfarm | Dec 25, 2023
In reply to @johnk1944 "So be proactive in starting your ADT shots once you know you are metastatic. Before it..." + (show)
@johnk1944

So be proactive in starting your ADT shots once you know you are metastatic. Before it spread to your organs, lymph nodes, or bone marrow I started with a PSA of 10 before the 5 scans saw anything

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Question if I may ask how did you avoid radiation therapy ? I am also stage4 after surgery . Zytiga/orgovyx adt. Undectable psa and nothing on recent scan. A lot of pressure from drs for radiation. I don t agree I don t understand how that treats metasized cells that drugs currently seem to be managing .

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2 replies
johnk1944 | @johnk1944 | Dec 25, 2023
In reply to @billfarm "Question if I may ask how did you avoid radiation therapy ? I am also stage4..." + (show)
@billfarm

Question if I may ask how did you avoid radiation therapy ? I am also stage4 after surgery . Zytiga/orgovyx adt. Undectable psa and nothing on recent scan. A lot of pressure from drs for radiation. I don t agree I don t understand how that treats metasized cells that drugs currently seem to be managing .

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Mine was 14 years ago and my uro didn't push radiat on me once the ADT give me zero testosterone and PSA

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cooper1076 | @cooper1076 | Dec 26, 2023
In reply to @johnk1944 "So be proactive in starting your ADT shots once you know you are metastatic. Before it..." + (show)
@johnk1944

So be proactive in starting your ADT shots once you know you are metastatic. Before it spread to your organs, lymph nodes, or bone marrow I started with a PSA of 10 before the 5 scans saw anything

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Is it even metastatic if it hasn’t yet moved into the organs or lymph nodes? I have a l PSA after Prostate removal and am starting Lipton and radiation. So far nothing shown on pet scan or MRI.

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2 replies
billfarm | @billfarm | Dec 26, 2023
In reply to @cooper1076 "Is it even metastatic if it hasn’t yet moved into the organs or lymph nodes? I..." + (show)
@cooper1076

Is it even metastatic if it hasn’t yet moved into the organs or lymph nodes? I have a l PSA after Prostate removal and am starting Lipton and radiation. So far nothing shown on pet scan or MRI.

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Were your lymph nodes clear @. Surgery ?

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1 reply
melcanada | @melcanada | Dec 26, 2023
In reply to @johnk1944 "More on avoiding the next lethal step mCRPC Once you find out that you have mPC,..." + (show)
@johnk1944

More on avoiding the next lethal step mCRPC
Once you find out that you have mPC, you should do your utmost to avoid castration resistant since then ADT (lupron, elgarten, trelstar xtandi, etc) will likely not work. MCRPC under current treatments only extends 2-4 months to at most 2-4 years.

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how do you avoid it my xtandi stopped working

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johnk1944 | @johnk1944 | Dec 26, 2023

Response from 14a
I started early when my PSA was only 8 and nothing showed on my multiple scans ( PSA below 20 will not show metastatic clusters) so my shots nipped the cancer before any organ/lymph/bone was affected (I think). That was 14 years ago before xtandi was popular

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1 reply
cooper1076 | @cooper1076 | Dec 26, 2023
In reply to @billfarm "Were your lymph nodes clear @. Surgery ?" + (show)
@billfarm

Were your lymph nodes clear @. Surgery ?

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Yes and my margins were good. But my PSA of .5 has almost doubled in 3 months. I had a Gleason score of 9 going into surgery so wherever it is, it is aggressive. Have started on Lupin and beginning radiation of the prostate bed next week. I am also part of a study at UCLA where they are giving me a second drug in pill form.

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samidh | @samidh | Dec 27, 2023
In reply to @johnk1944 "Response from 14a I started early when my PSA was only 8 and nothing showed on..." + (show)
@johnk1944

Response from 14a
I started early when my PSA was only 8 and nothing showed on my multiple scans ( PSA below 20 will not show metastatic clusters) so my shots nipped the cancer before any organ/lymph/bone was affected (I think). That was 14 years ago before xtandi was popular

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Not very sure about PSA below 20 not showing metastatic clusters. I was 2.6 PSA when my MRI and PSMA PET Scan showed up metastasis to several lymph nodes, seminal vesicles and bladder neck. There wasn’t a point undergoing RP and the “next best” was Zoladex and Abiraterone and after three months of which I went through 20 factions of IMRT (I took Tomotherapy).

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johnk1944 | @johnk1944 | Dec 27, 2023

14a again
Since my negative scans (MRI, pet, radiologic isotope, etc) was done 14 years ago, imaging has improved such as bpsma etc. so, some of my comments might be outdate
d

Note I started this thread hoping for input from more 10+ years survivers with proven metastass on only ADT or radiation or xtandi- maybe even a 20+ years. To paraphrase a titan in my field of particle physics, "where are they" lack of evidence for extraterrestrial intelligence. Finally, a plug for one of my favorite SF thriller. Diablo Mesa by Preston and Childs -- more than you want to fantasize about Roswell

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1 reply
johnk1944 | @johnk1944 | Dec 27, 2023
In reply to @johnk1944 "14a again Since my negative scans (MRI, pet, radiologic isotope, etc) was done 14 years ago,..." + (show)
@johnk1944

14a again
Since my negative scans (MRI, pet, radiologic isotope, etc) was done 14 years ago, imaging has improved such as bpsma etc. so, some of my comments might be outdate
d

Note I started this thread hoping for input from more 10+ years survivers with proven metastass on only ADT or radiation or xtandi- maybe even a 20+ years. To paraphrase a titan in my field of particle physics, "where are they" lack of evidence for extraterrestrial intelligence. Finally, a plug for one of my favorite SF thriller. Diablo Mesa by Preston and Childs -- more than you want to fantasize about Roswell

Jump to this post

Fermi

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