I was diagnosed in 2017 as a G10, details are in my profile, the diagnosis after scans was there was no mets detected. Did 3 weeks of IMRT, LDR Brachy and 2 years of ADT. PSA was always undetectable after first Lupron shot. In Jan 2020 went off ADT and remained undetectable for ~12 months, by Jan 2022 psa was over 2.0 and went for PSMA scan at Emory. Scan showed activity in seminal vesicle, abdominal lymph nodes, and lower lumbar. All 3 areas showed low volume. Went back on Lupron with Zytiga added about a year ago. Been undetectable since. Now my care team is suggesting taking a break ! Huh ? They have said outcomes for patients in my situation are equivalent with or without holidays. Honestly kind of shocked and planning on at least 2 years of Lupron/Zytiga before taking a break. Just wanted to get feedback from others. Thanks !
New G10 to the group: I was diagnosed... - Advanced Prostate...
New G10 to the group
What is the duration of holiday they are suggesting? Is it possible to get a second opinion at center of excellence ?
They mentioned a year, but would be really determined by PSA levels. As soon as PSA started rising I would restart treatment. Getting a second opinion is a good suggestion.
Cancer Institute of Emory University is Georgia's first and only Comprehensive Cancer Center designated by the National Cancer Institute (NCI). Winship Cancer Institute of Emory University is the only National Cancer Institute-designated Comprehensive Cancer Center in Georgia and one of only 53 in the country.
So it is a "center of excellence"?
It depends at what PSA level they want to restart. The PSA value will rise quickly after terminating the hormone therapy and you cannot expect a year with stable PSA value. The holiday is intended to improve QOL. If you want to take it, ask if you can take Bicalutamide 150 mg during the holiday. This will extend the holiday and increase the testosterone level.
When they did the IMRT did they include the lymph nodes? Just curious - I am a G9 about to start IMRT.
No they did not, the original scans showed nothing outside the capsule
The only reason to take a break is if the side effects are too onerous for you or if you have cardiovascular problems. Intermittent ADT carries about a 10% worse prognosis compared to continuous (about 20% worse among men with few metastases like yourself ) - not a huge amount, but there is a trade-off. The question is whether you would get enough testosterone recovery to feel a difference.
nejm.org/doi/full/10.1056/N...
Thanks for the response TA, my testosterone recovered fairly quickly last time, but Im just not feeling any reason to roll the dice, especially given my last break didnt turn out so well.
I think they offer risky behavior if your Psa shot up on vaca? But , I’m no doctor! I too am now 61 . I chopped in 2015 dropped the lupron and I stopped a test adt drug halting adrenal T 8 months ago .. during my 8 yrs no mo ever suggest a vaca . My Psa hasn’t risen …. Living in the eye of the storm .. Good luck ! .
Trying to sort your your PSA listing:
PSA:
ADT (Casodex /Lupron) 1/2018 - 2/2020
<0.1 3/18-8/20 (while on ADT and with 6 months off ADT? Several PSA reads done?)
0.4 2/21 (1 year after ADT?) nothing between the 8/20 and 2/21 readings?
0.7 5/21 (then a pretty steady climb)
0.97 8/21
1.04 10/21
1.47 12/21
2.85 2/22
Does that look right? It seems like the last time you went off ADT PSA started climbing probably 6 months after ADT - but it wasn't caught earlier because there weren't any PSA tests done for about 4 months?
Then it was a really pretty steady climb.
There's always the discussion that if you discontinue ADT will the hormone-sensitive state last longer, or will the hormones not-needed cells start to take over? I don't know if anyone has found the answer to that. (T-Allen?)
This is where I would be looking for a second opinion on the vacation. With the mets you now have has there been any discussion of going after them with additional radiation - pinpointing them? Again - a second or even third opinion would likely be valuable. I think if you saw Dr. Kwon - from what I've heard him say in talks - he's an aggressive believer in chasing whatever he can find as soon as possible—and not giving up. I suspect he would be of the opinion of trying point treatments of the mets found now that there are targets to point at. You're considerably younger than I am - so I'd expect you'd want to hit it hard now to help your long-term survival chances.
Good luck from one G10 to another!
Hi Don, I need to check my records, there should be additional PSA records between 8/20 and 2/21 to add. There hasnt really been any recommendations to go after the mets. I need a better answer on that than what I have gotten so far. I am concerned any vacation may change the way the drugs / cancer are behaving, and right now it's working, so why mess with it.
been on protrap ( H T ) 3x monthly injection 500 gm Zytiga daily with 5 gm prednisone for 2 years with no detectable PSA told not to stop as PSA could rise unless can’t cope with side effects of present dosages Hot flushes night times and lack of energy main factors but bearable good luck
Another G10 here, also diagnosed 2017. I was on Lupron for ~4 yrs with undetectable PSA. Have been on vacation now for a year and 1/2; still undetectable.
good for you, I’m similar to you, G10 pet scan was clean onwards and upwards
Wish I could duplicate that. I've been on Lupron 4.5 years now, mostly well under 1 but not undetectable.
You were undetectable on Lupron only? Had you had RP? I've never considered mine undetectable.
On account of my G10 and several mets at diagnosis, we hit it as hard as we could right away: Lupron immediately, chemo (taxotere) starting a month or so later, and then RP in a clinical trial at MD Anderson shortly after that was done. This got my PSA to undetectable within 6 months after diagnosis, where it has remained for ~5 years. Not sure I would have gotten to undetectable w/o the RP.
Ahhh OK. I was already metastatic when diagnosed, so no RP.
Thanks for the very interesting post. You wrote: "They have said outcomes for patients in my situation are equivalent with or without holidays." What were those outcomes, may I ask? G10 here, too. Thanks --
This was a brief conversation, I was so surprised by the suggestion that we did not get into details on outcomes.
welcome G 10. All I can say is that based on your history you have outlined I would be really hesitant about going on a holiday. The last time you were off treatment your PSA rebounded and you have distant metastasis. Did you have genomic testing? If so, what did it show. Did you have a circulating tumor cell blood test? If so, what did it show!?. I see the benefit and treatment holidays, but with a Gleason score of 10 I would be asking way more questions to my healthcare team. There are some people on here Who are a lot wiser or should I say more in formed than I am. That is currently some thing I am trying to change, but it is a process. My gut says that if you are tolerating treatment well then don’t do it dude.
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