Why did they let me off the ADT hook so easily?

[London441]

Well after a year on ADT as part of a clinical trial at a major center of excellence, I met online with the RO today for a follow up (I had 37 treatments of IMRT in February). Previous to that I had RP in June 19, pathology showed Gleason 4+3, ECE, seminal vesicle invasion and 1 of 12 lymph nodes positive. Not great, so I signed up for the recommended trial. Aggressive, with Lupron, Taxotere and Zytiga starting at 3 months post op followed by the radiation. PSA has been undetectable throughout but I know I'm definitely high risk.

The ADT was scheduled for 2 years.

HOWEVER, when I met with the RO today, he asked how I was doing and I told him (that's what he gets for asking), especially about how much ADT sucks (in detail), as if he didn't know. I've been tolerating it well but of course it's swimming upstream of course. So he says, 'well I think you can quit that now'. He also said I should contact my MO who's running the trial and tell him what I'd just said. So I did. And the MO says THE SAME THING to me.... 'You can stop now at a year, the benefits of staying on it longer are unclear'.

This is sort of great news-don't get me wrong, I'm damn glad I said something-but it feels weird. Like if I hadn't bitched about it a little I would just be on Lupron for the full 2 crappy years. No mention was ever made previously of cutting it short.

(I know full well I may be prescribed it again if I have a recurrence, but I can't help to be glad to let the T rise and see what happens sooner than later)

My question is simple: Is there really this little proven efficacy for courses of ADT longer than a year in high risk patients? The doctors both seemed pretty nonchalant about letting me stop early.

[Hidden]

That would have me scratching my head. Who is steering the ship and in what direction?

[London441 in reply to Hidden]

It definitely seems a little strange. This is a major well known teaching hospital, extremely well regarded.

I can only conclude that in my case they don’t think a longer course will do any good. That’s why I don’t know whether to be elated or resigned to a recurrence.

[Tall_Allen]

It's not just ADT you were getting, it's ADT+Zytiga+Taxotere. That's pretty heavy duty. The question is - is that enough, combined with the radiation of the pelvic lymph nodes, to kill off all the micrometastases trapped in that area? In the Touijer study, everyone stayed on ADT long term, and they didn't use all the other stuff. So, who knows? It's very much a judgment call. If you feel like you've had enough vs if you feel like you are willing to go the extra mile.

[London441 in reply to Tall_Allen]

I was very clear that I would go the extra mile Allen , that’s the thing. They seem inclined to release me regardless. I would stick it out, but geez I would have to be pushed at least a little. I don’t think I have it in me after all this to protest.

[timotur]

For primary radiation treatment of advanced PCa, SoC settled on 18mos. For salvage treatment, SoC is 24-36 months IIRC. Given you were 4+3, +SV, +LN, seems like you would do at least 18mos, and if this is considered salvage having RP first, at least 24 mos would seem appropriate. Indeed, a bit odd. I would guess since your PSA has been n/d since RP, the reasoning is there is nothing to treat by staying on ADT any longer.

[George71]

I just posted a video on here 4 days ago -- about this very thing...

0 to 6 months live longer (overall survival) than patients given more than 6 months.

you can click on the post link and scroll down the posts to

"6/2019 video if you are considering ADT even with radiation -- > 0-6 months ADT shortens OS by nearly 2 years"

the video link is below.

youtube.com/watch?v=0CnbyiR...(Not working as expected?)

[Hidden]

They stopped me after 7 months.

My surgery was 10/19. I was 4+5, EPE no nodes. No SVI. No bladder neck invasion. T3a N0 M0

My RP did not get me to 0. (0.11)

RALP 10/19

ADT started 1/20

Radiation started 3/20.

ADT started wearing off, theoretically, in early August.

In early August I specifically asked, are you sure about stopping, and both the RO and the surgeon both said there was no recent evidence longer would be beneficial.

Time will tell.

[George71 in reply to Hidden]

watch the video above -- you should consider getting on high testosterone immediately --- the slow crawl back to normal T may actually be how the cancer recovers --shock with High T crashes PCa cells

[maley2711 in reply to George71]

Additionally, in that video I believe, Dr. Bob makes the claim that each month on ADT/hormone blockade moves a man one month closer to recurrence?

[George71 in reply to maley2711]

Yes, That is the doctors opinion. generally you last about 18 months to 2 years on ADT then CRPC .. and that is what you want to aviod, it at all possible.

[Hidden in reply to maley2711]

Dam! I’ve been on adt 68 months and counting .

[maley2711 in reply to Hidden]

All the numbers are just averages of course.....evidently you are on the favorable side of the curve. Looking at this as a total amateur, seems this issue may not be settled until more trials generate much more data.....lucky us being the guinea pigs!

[George71]

and this video:

I am scheduled to see this doctor first week in October... His video link is below ... he gives super high testosterone to cancer patients -- one cohort with cancer was given testosterone replacement and the other cohort was not given replacement testosterone --- @ 5 years -- 15% of the group receiving T had biochemical recurrence -- 53% of the group not receiving T had biochemical recurrence ... the group that got T and had recurrence it was delayed by a year and a half.

youtube.com/watch?v=Re795wS...(Not working as expected?)

[Haniff]

I am at a total lost...🤔 Over here in Singapore, they keep telling us that we should be on ADT for life...and these are highly respected Oncologists in their field...hmmmmm

Anyway, whatever the journey and the instructions on the manual, try and make a good judgement call brothers ❤

Haniff

[Aynoy in reply to Haniff]

Exactly Same For life

[Aynoy]

Yikes. I’d get another opinion My hubby’s cancer came roaring back after one year off. Sure he felt better but now stage 4 and bone Mets

[London441 in reply to Aynoy]

Thanks I’m meeting with the MO next week. I imagine the deal will be to watch the PSA like a hawk as the T rises. If it starts to rise also I’m probably back on it quick

[Aynoy]

Best of luck

[Magnus1964]

May question would be why are these doctors not following the clinical trial protocol?

[London441 in reply to Magnus1964]

I’ll be asking the MO that on Monday for sure. So far a short email from him concurring with the RO is all I have.

[Hidden]

I was given a six month eligard injection prior to radiation. I changed my mind and went out of state to get HIFU treatment instead. My local urologist recommended 2 more years of ADT. Nope. No way. I refused. How would I know how successful the surgery was if I continued on ADT? Why would I want to be a eunuch for 2 years if I had a choice? I am 4 years post HIFU surgery and doing just fine without ADT. That 2 year ADT regimen is evidently SOC following radiation.

[London441 in reply to Hidden]

Good idea probably. I don’t even know what value ‘SOC’ even has for this disease, it’s so heterogeneous and so are we.

[j-o-h-n]

To be or not to be? etc.

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 09/30/2020 4:43 PM DST

[London441 in reply to j-o-h-n]

Prankster

[j-o-h-n in reply to London441]

Gangster.....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 09/30/2020 5:33 PM DST

[DarkEnergy]

Not me man, current PSA <0.02, told ADT for life, even TA said so, that I'm an untouchable mPCa gangster. But, my homeboy Nalakrats buddy has different dibs for me, the plot thickens...

DarkEnergy, formally known as NYMets

[Stevecavill]

It’s a trial, one of the things they measure is adherence to the treatment plan. Do you have the registered trial number? You can look it up on clinicaltrials.gov to see what the correct trial protocol is

[London441 in reply to Stevecavill]

Thanks Steve The protocol is 2 years ADT