Hello All, Would you please give your opinions on the proper ADT duration for me? Gleason 4+5=9, diagnosed in Fall 2019 at age 57. As far as they could tell from MRI and Cat scans, it's confined to the prostate with no distant nor local metastasis. Treated with external beam followed by brachytherapy, for a total biologically equivalent dose between 170 and 210 Gy. Been on ADT for 18 months so far, two of which were BEFORE the radiation started. PSA went undetectable in 3rd month of ADT and has been undetectable for the past several measurements.
I believe that the standard of care for high risk fellows in the US is 2 years of ADT. But I'M SICK OF THIS ADT.
You all helped me deal with it, with suggestions on diet and exercise. London441 encouraged me to do weight training, which has helped!!!
But I'm still SICK OF THIS ADT. And If I get biological recurrence guys, I'm just going to ride it out. I'm not going back to medicines, they just take too much out of me. I've had a good life.
I've read Nabid, Nguyen, Sidiqqui and others. It's clear that the range is 18 month to 2 years for a case like mine.
Sorry to be a cry baby. I should be thankful to still be alive.
I am thankful for the advice given so far in this group.
Nabid et al say that 18 months could be a valid option, but when you look at the data closely, you see that biochemical recurrence is worse for 18 months compared to 36.
Commenting on the Nabid article, D'Amico and Xie state that 18 months ADT could be a valid option for healthy men treated with a brachytherapy boost, OR (on the other end of the spectrum) men with cardiovascular problems.
McKay et al (ascopubs.org/doi/full/10.12... say "Guidelines from several panels, including ASCO, American Urologic Association, ASTRO, and the Society of Urologic Oncology, generally recommend prolonged ADT for men with high-risk localized prostate cancer (24–36 months) rather than a shorter duration of therapy."
Lazarev et al mention that 9 months can be acceptable in cases like mine (high-risk, no metastasis, treated with high doses of radiation achievable with brachytherapy boost) ! This is just a conference proceedings, but I want to ask them for a pre-print with data.
Hey Dexy, I'm on Firmagon monthly shots. It appears to be better for my mental health. But darn it, I'm still sick of the ADT!!! I feel like a Dum Asz. When I listed all the references, they all lean toward 24 months. THANKS FOR YOUR HELP!!! Have a great day!
I'm Gleason 9, too, and the tumor board at Johns Hopkins that considered my case recommended 24 months of ADT plus 40 radiation treatments. It's a long slog and I hated the hormonal therapy, but I got past it and moved on . You're free to do what you want, of course. I'm just sharing my experience.
Hey Jazzy, I'm sorry I forgot to thank you for your reply! I guess the ADT has not affected my baseline lack of social skills! (Laughs). You've given me a very interesting data point, supporting the 24 month duration. Thank you.
7720,I can relate except age, I'm 20 up on you but same time line. I went off Lupron, Zytiga and Prednisone after 19 months. I am four months on ADT vacation i am also undetectable. What is your PSA?
My Rad Onco, with md and phd in microbiology, told me that 24 months on is just as good as 36 minymths. Then watch psa for doubling or 2.00 above nadr, lowest, to start again.I am back on Lupron and oncologist says its up to me 24 months then vacation until tmrise then back in again or forever. You can guess my choice.
But there are other options other than monthly ADT shots. Individual choices and doctor experience
As always I suggest be active in your trwatment by asking questions and understanding the answers. Never just do what the doc says!
Be nice to them, treat them as you would luke to have them to interact with you...as a person.
The SOC is 24-36 ADT but Tall Allen shared the RADAR report and I showed my MO and said I want off. That was Jan 2021, Im Gleason 9and bio 9-12 4/5 other abdominal involvement but I did 45 EBRT . If you do the research like you are doing , you can be a better patient advocate.Hobie
The definitive trial for your situation was one you didn't list- TROG 01.03 RADAR. They found that for brachy boost therapy, 18 months is superior to 6 months:
Thanks Allen, this good info, you are a great resource for many of use. I am on ADT vacation (4)months now and headed to Florida to swim and paddle with the manatees thanks to you and others of the forum brain trust (plus my Doc's). I will post my profile when I return.Hobie
Hi, I’m 2 years into the 3 years of ADT following external beam radiation (38 sessions) and I understand your frustrations with the effects of ADT on your life. I didn’t have brachytherapy as it wasn’t available at the time in Ireland. All that I can offer is to hang in there, life without cancer and ADT would be worth it, at least that’s what keeps me going, one day at a time.
You've been on ADT long enough (especially with the brachy) to go on an ADT holiday. You will find out if you have reached a state of long term remission - it is possible based on what you've told us.
Hey Ron, Thanks for your kind comments. I think I'm going to finish out the 2 years the doc has suggested, then if it recurs, I'm just going to ride it out. Blessings.
Hey Winko, Thanks, it was recommended that I do 2 years, not lifetime. If it were lifetime, indeed, I would take a break as you propose. Cheers. Thanks.
Wow!! 15 years. Winko you must be the strongest person on the planet. How have you dealt with it for 15 years!??? Please tell us all! We need your wisdom!
I, too, HATED ADT. I was a poster child for side effects: physical changes, emotional roller coaster, depression/despair/suicidal thoughts, etc. And, mine was only for 9 mos - three 3 mo duration shots; seemed like an eternity. Was told that I'd begin to feel better 6 mos. after last dose. Didn't happen. Took a full 14-16 mos to begin to feel pre-treatment self. T gradually returned but never to pre-treatment level. It's now a roaring 183. LOL
And, yes, I tried all the recommended aids; exercise seemed to help but only in the sense of making me feel that I was doing something/anything to combat the feelings; never did see any real physical improvement (perhaps I would have been worse without the exercise. Who knows?)
Anyhoo, my whole point is that I understand what you're saying. It's a very rough ride for some (am so envious of those here who seem to have few if any side effects). Enjoy yourself! Do what you want to find some relief and pleasure.
Hey Ed, Thanks for your kind words. I'm taking today off, to work on the yard and car. Maybe I'll be able then to get my head back in the game. Thank you!
Reading what I think is the RADAR trial from one of TA’s posts, a little bit different circumstances than yours-6 month ADT vs. 18 month for locally advanced PCa, but I think you see that OS is a little better the longer you go but there is a legitimate argument for “playing the odds”. Quote: “When analysed by duration of androgen suppression, the adjusted cumulative incidence of prostate cancer-specific mortality was 13·3% (95% CI 10·3–16·0) for 6AS+RT versus 9·7% (7·3–12·0) for 18AS+RT, representing an absolute difference of 3·7% (95% CI 0·3–7·1; sub-hazard ratio [sHR] 0·70 [95% CI 0·50–0·98], adjusted p=0·035).
So seems to me that of 100 guys that opted for the shorter course, 4 more guys died than the longer course, doesn’t sound particularly convincing. Unless you’re one of the dead guys of course. But I may be missing something. Math has never been my best subject.
I guess my point is you are dealing with a pretty small percentage in the difference between 18 months and two years
Hey Anomalous, thanks for the wonderful additional interpretation of Tall's posting. I think I'm going to reach for the 2 years, instead of stopping now at 18 months. The reason is that I want to give it a good shot THIS TIME. If/when the cancer comes back later, I'm not going to fight it. I won't be able to handle another round of this, or chemo, or whatever. Thanks for your time!
You said: "So seems to me that of 100 guys that opted for the shorter course, 4 more guys died than the longer course, doesn’t sound particularly convincing. Unless you’re one of the dead guys of course. But I may be missing something. Math has never been my best subject.
I guess my point is you are dealing with a pretty small percentage in the difference between 18 months and two years"
I have to agree. Not revealed is the basic health of the "4 more guys" - did they have more comorbidities leading to their death? Was their death from PCa or disease caused by ADT? Did they opt for 18 months due to other health issues made worse by the ADT? That's part of the conundrum on ADT - it can cause death by side-effects. I've seen numbers indicating that about 30% of men on ADT also had heart/cardio/vascular conditions made worse by the ADT. And there is a much higher percentage of men with cardio/vascular issues after being on ADT vs men who have not been on ADT. Google "adt and cardio" - you'll find lots of results.
I did ask Moyad and Scholtz at one of their open web sessions about the 18 months vs 24 month issue, referencing the Nabid study (meetinglibrary.asco.org/rec... - they both said there was no advantage they saw to the 24-month treatment and questioned why prolong the agony that ADT causes?
FWIW - I'm Gleason 9/10 (depends on which of 3 reads you want to believe), localized, with 81Gy and 18 months of ADT (Lupron) treatment.
My last Lupron shot was 1 year ago (April 1st, 2020) so I'm about 9 months out of ADT. PSA has been undetectable for more than a year until the last read a week ago where it was 0.1. In discussion with my medical oncologist, (about 10 minutes ago,) he wants to continue to monitor the PSA. The increase very possibly could be a "bounce" (not uncommon with the treatment I had) - if not - he said we'd wait until it reaches 2.0 before determining any additional treatment (likely more ADT.) My testosterone is a bit over 300 now which he felt was excellent for 9 months off ADT.
So - what's my point? If ADT isn't causing serious side-effects (mine was - I now have 5 stents) there may not be any lasting harm by staying on it for 24 months, but also no real advantage or more curative power by staying on it 24 months vs 18 months. Before committing to long-term ADT, I would strongly encourage men to find a good cardiologist and have a complete workup done, then have repeat tests (stress test and perhaps some others) done during the course of the ADT treatment.
BTW - I noticed the distinction A0007720 made about "Been on ADT for 18 months so far, two of which were BEFORE the radiation started" - an interesting distinction. Studies done indicate it turns out that the "before" isn't all that significant. There is some argument about how doing ADT before, or during, or starting it after radiation treatment may affect the outcome of the treatment, but the length of the ADT treatment is counted from when it was started, not from when the radiation treatment was concluded. In general, ADT is given before and during radiation to weaken the cancer and shrink the prostate (making it easier to target without collateral damage.)
I think the 4 guys out of a 100 had to have died from prostate cancer, not something else. They had to correlate that. Your question about QOL is relevant though. So the question is, is it worth an extra year of ADT to risk a 4% chance you’ll shorten your lifespan by dying of prostate cancer. I think. Right? Or don’t do the extra year and hope you’re in the 96%. Almost slam dunk odds. Unless you’re one of the four.
I guess I was unclear (not unusual) - there might have been +4 guys who died from PCa with the shorter ADT, but it begs the question of how many guys died from ADT caused health issues (cardio problems, or suicide, or other ADT caused disease) with the longer duration ADT. I don't think that question has ever been addressed in any study.
I am a stubborn SOB and a survivor. I was sure I was going to be dead before I made 50 - made liars out of them. I keep telling people that I can't die yet - there are too many people out there that I haven't pissed off yet.I fully intend to drop dead doing something - or somebody 😉
*&^%* fantastic PJ!!!! You get the quote of the year award! "I can't die yet - there are too many people out there that I haven't pissed off yet.I fully intend to drop dead doing something - or somebody"
Also GL9 here, RP 8/2019, ADT Firmagon 10/2020, then Orgovyx 2/2021 (undetectable almost immediate;y), and finishing 38 salvage radiation sessions a week from today. T2N1M0 and Decipher at .78. I am hoping for 24 months ADT and then a vacation to see if the undetectable level holds. 18 months to go Fingers crossed.Best of luck.
Hey Guys, Damn, this was a good, helpful discussion. As a result, I'm going to make a modest donation to this community, via pay pal. I'm not wealthy, but this community has REALLY helped me a few times. And through it, I got to meet you all. Where else could I get exposure to someone like Tall Allen!?
Darryl, you're next on my list! Please hang on, while I change my paypal password for the millionth time. Cheers.
Hey Guys, Thanks for everyone's input. After consideration of all of this, here's why I've decided to stick with the originally recommended 24 month course of ADT (just started my 19th month) instead of stopping right now.* It's not a question of 6 more months versus 0 more months on ADT. It's a question of 24 months versus 30 months before testosterone BEGINS to recover. Testosterone recovery, according to Nabid's graph F, section 3.7, doesn't even start until 2 years after one finishes ADT. From the time you quit, it appears that you wait about 2 years to start feeling better.
** Ed's experience, with his 9 month ADT and recovery at ~14 or so months, is consistent with Nabid's graph.
** Don's results on testosterone recovery are excellent, but I believe he's an exceptional case, as mentioned by his doctor.
* Dexy makes a good point about 18 months being non-inferior to 24 months. Similarly, Ronny says I can take a holiday. There may not be an advantage to 24 months versus 18. But since I have no cardiovascular symptoms at this point, I think I'll push it 6 more months. If I get biochemical failure in the future, I'm not going to ever go back to ADT. EVER! So I want to give it all I can during this, present treatment. I'm not Winko! I cannot do a 15-year course!
* Nabid does mention, in comparison of 18 versus 36 months, that biochemical failure was greater in the 18 month arm after testosterone recovery. This is consistent with Anomalous' statement that "odds are better the longer you go on ADT. " I'm not going to "play the odds" as he called it.
*My onco doc said "If you can stand the side effects, I think it's best that you finish out the 2 years." He was ready to take me off of it however, when he saw my prior depression 3 months ago, reported in an earlier post. Since that time, I'm exercising more, doing weights recommended by London441, and I've upped my Lexapro does to 20 mg daily, from 10.
* I feel for AODH who in Ireland has to do 3 years, maybe because of lack of brachytherapy in his treatment. If he can do 3 years, I can do 2!
THANKS GUYS for the support. I'm going to update the list of references in my original post, just so a future person could use them if needed (or could laugh at my naivete and amateur approach!)
Well said and explored by all. Clearly the trials will show what they show but it’s primarily a SLOW moving disease and so results SLOWLY trickle in. OS vs BFS really can cloud the picture too I think. Long term ADT is literally, physically (as in death, usually by heart disease) murder on a lot of guys I’m sure.
A0007720 you’re welcome about the exercise prodding but re: duration of ADT what about this angle:
I was let off a 2 year ADT clinical trial protocol after a year simply because I told the truth-that ADT sucks. My team knew this is what they got for asking and simply said there’s no data in my case to support 18 months over 12 (they had already floated me stopping at 18 mo).
I was advised to go longer by some but a 2nd opinion said no data to support longer also.
Now here’s the kicker: 19 months after my last 3 month injection my testosterone is still castrate level, below 25 in fact.
So what’s the difference? I stand here basically FULLY T SUPPRESSED at 19 months. And who knows how much longer??
I thought I would have seen some rise in T by now. I knew it could take longer but saw myself as quick to recover it. Well maybe not!
Do MO’s just figure an extra 6 months minimum just gets ‘figured in’ the duration?
By this calculation then 18 months (for many guys) is really 2 years, 2 years maybe closer to 3, and God only knows how long T stays low past so called
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Fingers crossed.Best of luck.
High PSA upon diagnosis, treatment , and outcome 
