Had RP 2/19. All bad news post-op. Gleason 9. PSA 14 going into surgery, 6 weeks later .9. Started Lupron and then a month later added Zytiga on my insistence.
Had SRT 10/19. My PSA has been<.1 for almost 2 years. My oncologist and I have decided to end all ADT when my next bottle of Z runs out in a few weeks and my last injection of Lupron will be wearing off. I did pretty well going w/o "T".
My question to the forum is do I just sit back and do nothing, other than checking blood work regularly? I do take some supplements to make myself feel like I am doing something to help. I eat healthy and workout (a lot!).
I am thinking about the COC protocol, but I also would like to see if by some chance I am cured or at least earned a longish remission. Also curious to see how fast my T recovers. What do you guys think? Any advice?
Thank you Brothers!
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keepinon
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What you will ideally have is called "biochemical no evidence of disease (bNED)" which just means that even with your testosterone returning to normal, your PSA remains undetectable and stable. There is no official "cure" date - if you are like me, you will consider yourself cured as soon as your temperament allows. You will continue to monitor with conventional PSA tests (ultrasensitive will drive you crazy and add nothing) probably quarterly at first, and then annually if all goes well.
What a wonderful dilemma to have, wondering what you should do after ADT is discontinued. If you eat healthy and work out, you have nailed 90% of it. I’m in the same boat as you, but have continued to take my supplements (carefully chosen after studying this site). I have no proof whether they help, but they are certainly not hurting as I am going on two years after discontinuation of ADT.
I think it’s presumptuous and bad luck to say I am cured, so I just tell people I am in a hopefully extended remission. I still get anxious for the results after my quarterly blood draws.
One benefit of discontinuing ADT, that I haven’t read about here but is very real, is that steroid moon face will disappear. I really didn’t notice it at the time, but in looking at pictures from 2019, the moon face effect was obvious.
Recovery of testosterone varies from person to person depending on factors such as how long you were on ADT and your testosterone level before you started it. Some people, like me, never recover completely, but given how good I feel otherwise, I have followed my oncologist’s conservative advice to resist supplementation.
I read your Bio, Canoehead. You have been through a lot! That's great that you have been undetectable for so long. I hope it continues for a loooong time!
Do you mean now or if I have a BCR? Starting Xtandi now does not seem to make any sense.
I can relate to the underlying emotion. G9 with an EPE here. Never made it to undetectable after RALP. Seven months of lupron and radiation to the prostate bed. . At the end of lupron I was like....”is it enough?”. Time will tell.
Our circumstances are very different as I was metastatic, and did a six month chemo with hormones. I stayed on Lupron for six years. At the suggestion of my oncologist, I had my last injection of Lupron in February 2010. “Won’t my PSA rise Doc? His replied that he did not believe that it would, but don’t you want to know? If I am right, you are cured, if u am wrong then, I simply restart Lupron.
I had a prostatectomy followed by radiation and nineteen months of ADT.
I am coming up to my eighteenth month anniversary of stopping ADT and so far my PSA has remained undetectable.
I tell a few people that I am in remission, not cured as it could return.
Testosterone does not always return after even short periods of ADT, and the longer you are on ADT the less likely it will return to anywhere near the normal range.
Diagnosed in Jan14, surgery in Mar 14, TCN0MXm GS 8, Margins, SV and ECE negative, 10% prostate involved. PSA undetectable until...
BCR in Sep 15 when PSA came in at .2 then .3 in Dec, SRT in Mar 15, 39 IMRT, 70.2Gya. That failed as PSA was .7 in Jul 15 then 1.0 in Aug.
PSADT and PSAV were indicative of aggressiveness, C11 Choline scan at Mayo in Jan 17 (PSA now at 3.8) showed four PLNs but no bone or organ. Kwon and I agreed to 18 months of ADT, six cycles of taxotere and 25 more IMRT to the PLNs with boosts and wider margins around the four identified in the C11 Choline scan. PSA dropped to undetectable with the first 90 day Lupron and the first two cycles of taxotere. T dropped to <3 and stayed there.
Finished treatment in May 18 with the last 90 day Luron shot, By Oct 18 T was 135, by Feb 19 it was 482.
PSA over the last 12 months:
2020
3 January 2020 USPSA .07
5 May 2020 USPSA .07
4 August 2020 USPSA .09
5 November 2020 USPSA .16
2021
5 February 2021 USPSA .29
So, would seem PCa is on the rise again though early for any treatment decision. Given the GS and the previous PSADT and PSAV, I don't expect anything different in terms of progression from whenI had first clinical evidence of BCR in Sep 15.
When I met with my urologist on Friday. I discussed waiting for the next PSA test in three months, if that shows a continued rise and is at or above .5, ask that we consider imaging with the Aximun scan and use that along with the other clinical data (PSADT and PSAV, prior clinical data to decide whether or not to begin treatment, when, and what are the decision points - at what PSA, combined regimen, monotherapy, what would that treatment be. Interestingly, he thinks PMSA imaging outside of UCLA and UCSF will be approved by the FDA and prefers to use those.
I think you may want to consider quarterly PSA tests in the first 1-2 years along with T to gauge what is or is not happening. Have some decision points should your PSA show evidence of being on the rise.
Being on ADT has not been that bad. I have lost some muscle mass, but my weight is stable and I have lots of energy. If I have to go back on it, it won't be the end of the world.Good luck with your next treatments!
I hope you go back into remmision.
I am so happy for you! My husband had a great response from Zytiga and radiation to begin with. It lasted 14 months and now the PSA is on the rise. Doing chemo now. Sending good thoughts you have many, many years of no detection!
You name it, my pathology had it. Also pt3bn1m0. G9. Kaiser, they do not do Ultrasensitive tests which is fine by me. I think it would add a lot more stress when there is not much you can do about it.
I was an interesting case insofar as I was a 7 (4+3 ) with a PSA of around 140 before the prostatectomy that fell to 2 after then below the limit of detection < 0.06 after 3 months.
So I had a fairly active tumour that was quite low grade compared with some.
<<<< I am thinking about the COC protocol, but I also would like to see if by some chance I am cured or at least earned a longish remission. Also curious to see how fast my T recovers. What do you guys think? Any advice? >>>>
In regards to the COC protocol idea. I'm in my third year of ADT. I also just started this week Zytiga + Prednisone in addition to the ADT3 Eligard shots. Prior to my starting Zytiga I was on ADT2 and the COC Protocol with the four re-purpose drugs for 6-months and I was hoping for some better results. Thanks to all of you PCa buddies that gave me some good advice.
6-months is more than enough time to determine if any PCa bio-markers improved, stayed the same or got worse, right? In my case, during the Corvid-19 lock down and appointment disruptions my PSA rose from shot up to18 and then I started the COC Protocol and four months later reached 42.9 PSA. That is not to say or blame my PSA rise was caused by the COC Protocol, but it sure as heck did nothing to stop it taking off.
The only outcomes I can confirm is I did lose 10-lbs while on the COC protocol and my total cholesterol dropped from 115 to 89. That's about it. Not exactly a good return on the investment when you factor in the initial consultation fee, mandatory monthly blood labs for the first three months, quarterly medication drug cost and your time and effort. Especially, if you can't tell if it's helping you or not.
From my perspective, the COC Protocol did squat towards helping me buy some time with my PCa as far as I can tell. Yes, the nurse oncology staff tries to help with diet and answer your questions. They are responsive and knowleadble. I will miss our dialog.
I have compared notes with others I'm met about the COC Protocol for a much longer period of time than me. Those guys don't know if it's doing anything beneficial for them. Need I say more? Sounds great on the web site, but "where's the beef?"
Contact me in private if you want more information.
Hi Herman. Thanks for the reply. You confirmed a lot of my hesitancy. Where's the proof? If this actually worked, everyone would be talking about their great successes. COC has been around quite awhile. Long enough in my opinion to post more studies and success stories.Best wishes to you!
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Almost 3 years on ADT + Erleada
ADT for almost 2 years
ADT vacation nearing an end
Does testosterone fluctuate after ADT ends?
