G9 CLUB..........

I don't know cac.....hormone therapy has been known to keep aggressive cancer in check for years with some patients. 4 months seems kinda short to me but your Dr. should know you best. My HT worked for a little over 18 months before becoming Hormone refractory. I still get the shot anyway as my doc thinks it could still help and I have minimal side effects. Good luck and let us know how your next PSA test comes out..chris

I don't fully understand your doctor's comment about 10%, but it certainly is less duration than most. I'm one of the shorter HT guys (from what I can tell) and I'm scheduled for a year.

PS As to the club, I pay more attention to G9s since I am one, but it seems to me like there are more G9s than G8s.

CacDaddy,

I have been asking this same question on a number of PCa forums with regards to the length of time to be on ADT. (My radiation onclologist has told me 3 years from the end of my radiation treatments.) According to the National Comprehensive Cancer Network (NCCN) "For High-Risk: T3a tumors, PSA level>20, or Gleason score 8-10, one path for primary treatment is EBRT and hormone therapy for 2-3 years (preferred)" So my RO is following the NCCN guidelines to the letter.

To make things a bit more confusing, there was a recent study that suggested "That 18 months of ADT as Good as 3 Years When Combined with Radiation"....

In addition, I have read (Chuck Maack-The Prostate Advocate) that being on ADT for >2 years will put you in the very real potential that your testosterone will never come back when you go off of ADT. My ADT side effects are simply terrible. So when I look at all of this conflicting data, for me I'm to the point where I honestly feel it's time to stop the ADT and let this hideous disease be in God's hands. BUT, then I think, did I really give my treatment plan a fair shot? 

The best advice I have received that really makes sense to me now is to stay on ADT for 1 year post PSA being undectable.

In your case, with a G9, the short duration of ADT does indeed seem to be too short.....Therefore, I would definitely discuss this with your doctor and come armed with data...

I wish you luck and my prayers are with you....

Buckeye -

You said...
To make things a bit more confusing, there was a recent study that suggested "That 18 months of ADT as Good as 3 Years When Combined with Radiation"

Oh yeah, I saw that one. Tried to sell my oncologist on cutting me back from 24 months to 18 since 18 is as good as 36. Sadly, he didn't buy it. While the study is widely touted about as "suggesting" that 18 months is as good as 36 (I think mostly because of the intense interest of all us guys on longer durations) their real result was to fail to prove that 36 months was "significantly" better. It was better, on average, in their study population, but it failed the test of significance.

There is a big difference between failing to prove something is true and proving it is false. My oncologist points out that the raw data for the study showed the superiority of 36 months in all the indices they looked at but that for none of them was the difference large enough to show significance in a rather-underpowered statistical study. He is fairly sure that a stronger study (with more participants) would show similar results (in terms of the raw data) but would also show the differences as meeting the significance test.

CacDaddy

For any given patient receiving ADT to make radiation more effective there is a duration of treatment that represents the sweet spot in balancing disease control with the impact of the side effects. Most of us here with diagnoses similar to yours are on the hook for longer duration of ADT than you seem to be talking about.

Redwing57 said...
Frickin' "G9 club" is no club I ever wanted to be in.... surprises me how many there are on this forum though. Maybe we're the ones most anxious for help?

You're not wrong there, probably got life membership as well.
There are some great outcomes on here, which are keeping my bottom lip up.
Sorry for not commenting on the thread topic, just haven't got that far yet

Quincy:

I know you've mentioned the musculo-skeletel pain.

Is that due to HT?

Mel

Hi Q:

I have had increased knee pain. I had assumed that HT had nothing to do with it, since I have had serious knee issues for years. I had surgery in 2008, which resolved two meniscus tears as well as doing some arthritis smoothing. I was fine for years, but it has flared up again, starting just before I started HT, but I wonder if the HT is making it worse.

I am also having leg (mostly upper thigh/groin area) problems in the form of pulled muscles (slight mostly, but there are days where it really interferes with daily activities).

I am trying hard to remain active. I do some good gym workouts, but at times I have to slow down in that area too.

I am finding with HT, it is like an accelerating old age. It is hard to distinguish between simple age-related ills and the HT influence

Mel

Hi Mel, Fairwind,
Seems I hit on a sore point with HT's tendency to cause pre-existing pain to worsen, huh? If you google Lupron or Eligard's side effects they both list m-s pain, I hadn't realized that their were RO's and oncs out there that didn't warn their patients to beware of this consequence. Mel, when I was first Dxed I was also dealing with a torn meniscus though not as bad as yours. It rapidly got worse after I began HT.I was laid up for six months due to that and also stuck on Percocets. You make a very good point about it feeling like its accelerating the aging process, that's exactly how I feel. In fact, a friend that I've been trying to talk into staying the course with his HT has finally decided that he's had enough and he was Dxed just last Dec. He's now in hospice because his PSA shot up through the roof when he and his wife voluntarily quit the regimen. They have accepted the consequences, he just tells me that he can't live with feeling like he's eighty when he's only 63. Me, I feel like I'm 75 when I'm only 58 but I'm good with that.
Fairwind, I'm with you 100% on ROs patting themselves on their backs for the PSA drops caused by HT and not their rad treatments. My onc looks at rad as primarily palliative, what do you. folks think about that. However, at the end of the day, I'm just happy to be alive, six straight years of HT have kept this G9 club member alive and still kicking pretty good. There are some good analgesics out there, like Fentora, that we, as cancer patients, are allowed to be Rxed and they sure improve my QOL . . . Q

You're right Mel, that is worse. I think I'll go back to my Pirate book cause this is getting depressing . . . Just Kidding . . . . Q

That's what the vacations help with, they kinda show if we still need to be on HT. In my case, I've only had one vacay and it was a bust. I went from 0.5 to 10.8 in 8 months. That was after being on Lupron for 16 months. So I guess I'd say yeah, I feel like my PSA would rise if I took another break. Then there's the basic lack of physical benefits from taking a break . . . due to ADT's long 1/2 life, I'm still stuck with all the annoying SEs so I feel like "What's the point?" as far as breaks go, see what I mean? After six years I guess I've committed myself to this therapy, SEs and all. It's proved to my wife and I that it does work over the long haul as I'm not resistant so I might as well take my medicine and stop whining, which I've done my fair share of, lol.

I hope that ramble answered your question, Here It Goes. I think everyone should take at least one break in the HT therapy to find out just how much good it's doing you and I think that most med. oncs feel the same. I'll bet you won't here that from too many rad docs though . . . Q

Here we go said...
My husband is gl 9. Psa 0.1 after 1 year HT.
I wonder if other gl 9 think their psa will do anything but rise as soon as they stop HT, whether they were on it for 1 or 2 or 3 years.that is if not resistant before that time.

I'm on ADT2 for 2 years, it appears. My IMRT primary therapy is happening now. So, at the end of therapy they'll check PSA again, at some interval not yet defined. I'm hoping the PSA is "undetectable" at that point, and stays that way with quarterly PSA checks until the 2 years is up.

After the 2 years, we stop ADT2 and watch the T and PSA levels. Happy scenario, T goes up and PSA stays low forever. Less happy scenario, T goes up and PSA goes up. If that happens, I'll be on ADT forever. Much less happy scenario, PSA goes up while on the first series of ADT.

Personally, considering how much 5+4 and 4+5 I have, and that my PSA didn't drop nearly as fast as my testosterone level did during my initial ADT, I have to admit a little pessimism about just how hormone sensitive my bad little cells are. Hopefully, any non-hormone-sensitive ones are still right in and around the prostate and the radiation treatments will cook 'em.

But yeah, I think there's at best a 50/50 chance of stopping the rise of my PSA after HT.