Medical Forum / Diseases and Disorders / Prostate Cancer / April 2006
ADT w/Stage IV PCa- wait or not?
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juniper - 28 Mar 2006 04:27 GMT Looking forward to any opinions about starting ADT immediately (well, 3-4 weeks after RP) or waiting to see what the PSA is. Local lymph node met & bladder neck met, G9. Also, how in the world do you find the best HT?
Alan Meyer - 28 Mar 2006 17:46 GMT > Looking forward to any opinions about starting ADT immediately (well, > 3-4 weeks after RP) or waiting to see what the PSA is. Local lymph > node met & bladder neck met, G9. Also, how in the world do you find > the best HT? I'm not a doctor and don't know the answer to your first question. I'm not sure the doctors do either since there seem to be experts on both sides of your question.
Having said that, here are some thoughts on the two questions, given freely and worth every penny I'm charging.
Some doctors believe in starting ADT immediately on the theory that most of the cancer is knocked down, if any is left, maybe ADT will kill it while it is very small and weak. But the problem is, what if it isn't needed at all? What if the surgery got all of the cancer? Might the patient go through the potentially significant side effects of ADT for nothing?
I was in a radiation trial using a procedure that apparently caused a lot of up and down PSA numbers. When my PSA went up to 1.8 I thought it was a recurrence but, having had ADT and not liking it, I decided to wait and be absolutely sure it was a recurrence before I did it again. Then the PSA went down and I was glad I hadn't done the ADT.
With surgery the case is simpler because a much smaller PSA than 1.8 is a pretty sure indication of recurrence. So, if it were me, I'd wait to see a rising PSA unless a particularly persuasive doctor talked me into ADT.
As for the second question, my experience with urologists and radiation oncologists is that many of them think that the only thing you've got to do for ADT is administer some Casodex, followed shortly by Lupron. If you ask to see a medical oncologist they may scoff. What's so hard about ADT they think.
But it can be complicated. There are questions about what drugs to take, on what schedule, and with what
Alan Meyer - 28 Mar 2006 17:54 GMT > ... > But it can be complicated. There are questions about what drugs > to take, on what schedule, and with what I somehow managed to send this message before I finished it.
I was going to add ...
... and with what blood tests to monitor before and after beginning ADT.
What I think you want, if you can find one, is a medical oncologist with a lot of experience treating prostate cancer. It might not be the only cancer he treats, but it should be one that he treats frequently and follows the literature on. (Good doctors do follow the literature, don't they?)
If you find someone, you might ask him or her what he/she thinks of Steven Strum's treatment, or Bob Leibowitz's treatment. If he/she asks, "Who are they?", then you probably haven't found the right person.
Good luck.
Alan
I.P. Freely - 28 Mar 2006 19:53 GMT > What I think you want, if you can find one, is a medical oncologist > with a lot of experience treating prostate cancer ... who follows [quoted text clipped - 4 lines] > asks, "Who are they?", then you probably haven't found the right > person. My very broad-spectrum onc team wallows in the lit, quotes it often, WRITES it based on their extensive research on a national scale, study Strum's and Ed's research (haven't asked them about Leibowitz), and unanimously recommended ADT for me as soon as my RP healed up, based simply on my G8 and SVI, even with zero PSA and negative margins. Pretty authoritative, pretty clear: hit it with both barrels while it's down just in case it's not dead.
My personal analysis of the literature and my priorities changed their minds in my case.
My point, again, is that we should keep digging, digging, digging ... just as Juniper is doing ... for our OWN personal "truth"", until our path becomes clear enough to live -- or die -- with. (I've got to admit it was reassuring when the same team not only supported my decision but added some of my insights to their broader paradigm.)
I.P.
Alan Meyer - 29 Mar 2006 04:00 GMT > .... > My personal analysis of the literature and my priorities changed their [quoted text clipped - 5 lines] > it was reassuring when the same team not only supported my decision but > added some of my insights to their broader paradigm.) I agree with this completely.
However we should note that some of us have a fair amount of scientific education and experience. Some of us are accustomed to reading, understanding, and evaluating scientific literature.
There are many, many others who don't have that experience and have no real way to acquire it in short order. For many people in those circumstances, the best they can do is to try to evaluate the doctors who are advising them. Does the doctor appear intelligent, competent, concerned, committed? If so, then go with his advice.
It's a second best way to for some of us, but probably the best way for others.
Alan
Steve Kramer - 29 Mar 2006 12:36 GMT > However we should note that some of us have a fair amount > of scientific education and experience. Some of us are [quoted text clipped - 3 lines] > There are many, many others who don't have that experience > and have no real way to acquire it in short order. To say nothing of the fact that some are not retired, some are barely computer literate, or maybe even literate. Some haven't the time for other reasons. Some are psychologically disinclined. Many, I imagine, are psychologically paralyzed; probably temporarily, but at the exact wrong time.
 Signature PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05, 2/06 PSA .07 .05 .06 .09 .08 .132 Non Illegitimi Carborundum
I.P. Freely - 28 Mar 2006 19:28 GMT >> Looking forward to any opinions about starting ADT immediately (well, >> 3-4 weeks after RP) or waiting to see what the PSA is. Local lymph >> node met & bladder neck met, G9. Also, how in the world do you find >> the best HT?
> my experience with urologists and > radiation oncologists is that many of them think that the only > thing you've got to do for ADT is administer some Casodex, > followed shortly by Lupron. If you ask to see a medical oncologist > they may scoff. What's so hard about ADT they think. I like my uro/surg/onc, and he calls in the med oncs when appropriate, and they all assured me that one 28-day ADT trial will reveal virtually a pt's whole personal slate of SEs (except the obviously longer-term effects like osteoporosis). Based on just that, Juniper/Steve may wish to try a month, or two, or three, and go from there.
Based on Strum, other researchers, and the overwhelmingly negative ADT consensus in this forum, screw ADT.
Based on G9 w/distant mets and appreciable PSA, ADT is a no-brainer, especially because he can always walk away from it.
So there are three different, fairly weighty opinions right there. Aren't we lucky they're free?
I.P.
juniper - 30 Mar 2006 05:58 GMT > Some doctors believe in starting ADT immediately on the theory > that most of the cancer is knocked down, if any is left, maybe > ADT will kill it while it is very small and weak. But the problem is, > what if it isn't needed at all? What if the surgery got all of the > cancer? Might the patient go through the potentially significant > side effects of ADT for nothing? We can assume with some certainty that the cancer is not gone, since there were positive margins and lymph noeds. And, starting immediately is beside the point now, I guess, because it will be close to 30 days before anything's done. So we can get a PSA and see how low it got. I don't know if that's plain curiosity on my part. It seems like that number would be good information.
> I was in a radiation trial using a procedure that apparently caused > a lot of up and down PSA numbers. When my PSA went up to > 1.8 I thought it was a recurrence but, having had ADT and not > liking it, I decided to wait and be absolutely sure it was a > recurrence before I did it again. Then the PSA went down and > I was glad I hadn't done the ADT. Good move.
> With surgery the case is simpler because a much smaller PSA > than 1.8 is a pretty sure indication of recurrence. So, if it were > me, I'd wait to see a rising PSA unless a particularly persuasive > doctor talked me into ADT. I'm thinking the only thing that could possibly stop this train is an undetectable PSA. Not likely to happen. Even then, it might only stop it a moment, for a 2nd thought.
> As for the second question, my experience with urologists and > radiation oncologists is that many of them think that the only > thing you've got to do for ADT is administer some Casodex, > followed shortly by Lupron. If you ask to see a medical oncologist > they may scoff. What's so hard about ADT they think. I see that. The way the PA said, he'll put you on Casodex, all casual, like everyone's the same and so are all treatments. To be fair, it wasn't the uro that said that. He said he thought it was a good idea we had an oncologist. Of course, we weren't asking for one, we already had one.
> But it can be complicated. There are questions about what drugs > to take, on what schedule, and with what More on this later (new post)
Alan Meyer - 30 Mar 2006 06:36 GMT > ... > We can assume with some certainty that the cancer is not gone, since [quoted text clipped - 4 lines] > number would be good information. > ... Right. I should have looked back at your original posting again. Sorry for the omission.
...
> I see that. The way the PA said, he'll put you on Casodex, all casual, > like everyone's the same and so are all treatments. To be fair, it [quoted text clipped - 5 lines] >> to take, on what schedule, and with what > More on this later (new post) I would think that it is important to get some baseline testing before ADT starts. One obvious one is testosterone level. Another is PSA. Another might be liver enzyme levels (mine went up alarmingly on ADT.
Once ADT starts, your husband might be on it for a long time. If any test is performed on him that results in an abnormal value, a doctor would (or should) want to know if this was his pre-treatment state or if the abnormal value happened only on ADT. So I'd think the more blood tests beforehand, the better.
Best of luck with all this. Some people do extremely well on ADT. I'm hoping your husband will be one of them.
Alan
ralphv - 30 Mar 2006 12:56 GMT Laurel, A more recent study supporting early versus delayed androgen suppression after radical prostatectomy was presented recently at the 'ASCO 06 PCa Symposium:
Adjuvant androgen deprivation therapy improves survival in patients with prostate cancer invading the seminal vesicles. 2006 Prostate Cancer Symposium
Abstract No:180 Author(s): B. A. Inman, E. D. Kwon, R. P. Myers, B. C. Leibovich, M. L. Blute, H. Zincke, H. Zincke Abstract:
Introduction: We review our experience with surgically-treated prostate cancer (PCa) that had invaded the seminal vesicles and provide evidence to support the use of adjuvant androgen deprivation therapy (ADT) in this setting. Methods: All men undergoing RP for PCa with pathologically-confirmed seminal vesicle invasion, negative pelvic lymph nodes and no preoperative treatments were included (n=800). Of this cohort, 211 (26.4%) received adjuvant ADT within 90 days of RP and 589 (73.6%) did not. Kaplan-Meier survival estimates were calculated after stratification of the cohort into two groups by ADT status. Survival endpoints assessed included biochemical recurrence-free survival (bRFS) and cancer-specific survival (CSS). The Cox proportional hazards model was used to adjust for other covariables. Results: Median follow-up was 8.4 years and the mean age was 66 years in both ADT groups. Patients that had received immediate adjuvant ADT had higher preoperative PSA values (13.9 ng/mL vs. 10.6 ng/mL, P=0.001), higher clinical stages (P=0.044), higher pathologic Gleason scores (P=0.006), more positive surgical margins (76% vs. 44%, P<0.001), and more aneuploid tumors (51% vs. 39%, P=0.005). Remarkably, despite the presence of these multiple predictors of poor prognosis, these patients actually had better oncologic outcomes than patients that had not received immediate ADT {10-year bRFS: 60% vs. 23%, P<0.001; 10-year CSS: 97% vs. 90%, P=0.036}. After adjusting for pathologic Gleason score, preoperative serum PSA, surgical margin status, and DNA ploidy, the multivariate Cox model showed an even more pronounced protective effect of ADT for bRFS (HR=0.24, 95%CI: 0.18-0.31, P<0.001) and CSS (HR=0.36, 95%CI: 0.14-0.94, P=0.036). Conclusions: Men with PCa invading the seminal vesicles that received immediate postoperative ADT had considerably better outcomes than similar men that did not receive such treatment. This survival advantage occurred despite the presence of significantly more aggressive PCa in the group of immediately treated patients. These results suggest that immediate adjuvant ADT should be strongly considered in patients with PCa invading the seminal vesicles.
Best,
RalphV
I.P. Freely - 01 Apr 2006 02:15 GMT ralphv quotes:
> After adjusting for > pathologic Gleason score, preoperative serum PSA, surgical margin > status, and DNA ploidy, the multivariate Cox model showed an even more > pronounced protective effect of ADT for bRFS (HR=0.24, > 0.18-0.31, > P<0.001) and CSS (HR=0.36, 0.14-0.94, P=0.036). Is it any wonder that some people rightfully say I sound critical or arrogant when I say most people can make good tx decisions by reading more, i.e., that knowledge is power? I've got 7-8 years of college in math, physics, engineering, and, yes, STATISTICS, and more doctors than not ask me what field of medicine I work in, but I'll be damned if I can make much sense out of that paragraph despite having asked here more than once what the heck stuff like HR=0.24, 0.18-0.31, P<0.001 means (without a response).
And
> Conclusions: Men ... had "considerably better outcomes" doesn't help a helluva lot.
It sorta sounds like I may have benefited considerably from that data if it had been available 15 months ago, but it's hard to be sure. [ADT {10-year bRFS: 60% vs. 23%}] looks pretty dang good, but 10-year CSS: 97% vs. 90% doesn't do much to float my ADT boat. It sort of hints that several guys dropped dead of PC despite near-zero PSA (so what good did ADT do them?), and that only a handful of guys came near getting their SEs' worth out of their ADT.
I.P.
ralphv - 01 Apr 2006 04:30 GMT I.P., The study described the statistical methods used: "Kaplan-Meier survival estimates were calculated after stratification of the cohort into two groups by ADT status. Survival endpoints assessed included biochemical recurrence-free survival (bRFS) and cancer-specific survival (CSS). The Cox proportional hazards model was used to adjust for other covariables."
The results were expressed in hazard ratios. For example, for bRFS the result given is HR=0.24, 0.18-0.31, P<0.001
That means that the hazard ratio was 0.24 and that the estimated relative risk of the event (in this case bRFS) occurring in the treated arm was 24% of that of the other arm of the study. The hazard ratio range was 0.18 to 0.31 and the p-value was <0.001(probability that a difference between groups during the study happened by chance. In this case 1 in 1000 chance).
The interesting thing is that the survival advantage occurred despite the presence of significantly more aggressive PCa in the group of immediately (within 90 days) treated patients. It seems to me that the conclusion of the authors should be strongly considered by patients with aggressive cancers as defined by lymph node invasion and poorly differentiated disease.
RalphV
I.P. Freely - 04 Apr 2006 03:40 GMT > I.P., > The study described the statistical methods used: > "Kaplan-Meier survival estimates were calculated after stratification > of the cohort into two groups by ADT status. ... The Cox proportional hazards model was > used to adjust for other covariables." OK ... that I can follow without needing to know their math.
> The results were expressed in hazard ratios. For example, for bRFS the > result given is HR=0.24, 0.18-0.31, P<0.001 [quoted text clipped - 5 lines] > difference between groups during the study happened by chance. In this > case 1 in 1000 chance). I had forgotten what the P figure represented, and the HR is a new one on me. Thanks for clarifying them.
> The interesting thing is that the survival advantage occurred despite > the presence of significantly more aggressive PCa in the group of > immediately (within 90 days) treated patients. It seems to me that the > conclusion of the authors should be strongly considered by patients > with aggressive cancers as defined by lymph node invasion and poorly > differentiated disease. Yep, and by those considering adjuvant ADT just because their recent first treatment might not have cured them ... LIKE ME. While the raw data's 8% survival advantage doesn't get me excited, the Cox adjustment to CSS (HR=0.36, 95%CI: 0.14-0.94, P=0.036) implies, if I understand correctly, that early adjuvant ADT reduces the average PC pt's odds of dying of PC by 10 years post-op by about 2/3 (but with a broad curve).
The question that raises in my mind is the study's implications, now or as more years go by, about whether the advantage drops quickly past 10 years. i.e., has early adjuvant ADT really added years to survival, or is 10 years just at a knee in the curve and this study thus reveals little new data? A mere 14-15 months ago the literature consensus was that early adjuvant ADT didn't add a whole lot to CSS.
I.P.
ralphv - 04 Apr 2006 06:29 GMT <SNIP>
> > The interesting thing is that the survival advantage occurred despite > > the presence of significantly more aggressive PCa in the group of [quoted text clipped - 16 lines] > little new data? A mere 14-15 months ago the literature consensus was > that early adjuvant ADT didn't add a whole lot to CSS. RV>++++++> You have the correct results. The Messing study was done in 1999 and updated in 2003 with the numbers still holding. I think what has changed recently is the recognition that intermittent suppression is beneficial as far as avoiding permanent SEs and still providing survival. What has evolved lately is that intervention with localized treatment changes the natural course of untreated PCa. It actually shows an advantage after 15 years. This because treating PCa that has progress untreated for a long period is usually not responsive to the current available treatments.
Along with this is the importance of combination treatment of aggressive cancers. Rather than sequential monotherapy failures, to treat in combination to obtain the maximum cell kill. Recognizing the possible SEs of ADT and applying remedial action can go a long way in the long-term results. More active chemo protocols have evolved. Still, the bottom line is a very personal decision as personal preferences dictate.
RalphV
I.P. Freely - 04 Apr 2006 20:26 GMT > Recognizing the > possible SEs of ADT and applying remedial action can go a long way in > the long-term results. I'm not clear on your meaning. I wouldn't expect SE remedies to directly affect ADT results, so I presume you're saying the "long-term result" improvement is in SEs, not cancer benefit. (The problem in my case is that there's no magic bullet for what I consider its most debilitating and most certain SEs.)
More active chemo protocols have evolved.
I've seen lots of buzz here about chemo recently, but have also seen opposing viewpoints that concur with the consensus I encountered a year ago: chemo is still a last-resort option with no proven results.
I'm getting as tired of and confused with the whirling toilet bowl of conflicting "information" as Juniper/Laurel is. We need a central clearinghouse to gather, sort, filter, and track all this stuff! Oh, yeah ... we're sort of IT, aren't we ... aided and/or further confused by each new book or large reputable study jerking our nose-rings in new directions.
Hell, just the time I've spent sitting here typing about this $#!+ has cost me more time than any adjuvant tx is likely to add to my life. I'm starting to resent this time because its therapeutic ratio is dwindling and everything ELSE is piling up. I'm seriously considering my oncs' advice to let them run my tx while I get on with my life.
Of course, if I had taken that advice 15 months ago, the most important and enjoyable measures of my life would have ended then, virtually guaranteed.
Yes, Laurel, this stuff is THAT confusing.
I.P.
Steve Kramer - 04 Apr 2006 22:26 GMT > I'm seriously considering my oncs' advice to let them run my tx while I > get on with my life. I wonder if you could.
It is much easier to go out and have a lot more fun than to ditch your life's work and go out and have fun. There must be something inculcated in you that caused you to be a scientist and/or to be in control. Could you really cede that over to a doctor? Especially after your life's experience with doctors?
I think not.
juniper - 05 Apr 2006 02:08 GMT > I'm not clear on your meaning. I wouldn't expect SE remedies to directly > affect ADT results, so I presume you're saying the "long-term result" > improvement is in SEs, not cancer benefit. (The problem in my case is > that there's no magic bullet for what I consider its most debilitating > and most certain SEs.) I.P., I think EVERYONE in the group understands that you do not want ADT and you consider the SEs absolutely unacceptable. I guess you're afraid you may be forced to make a real choice for or against ADT. If I recall, your last PSA had a micro rise? So if that continues you may be faced with the decision? That is tough, very tough.
> I've seen lots of buzz here about chemo recently, but have also seen > opposing viewpoints that concur with the consensus I encountered a year > ago: chemo is still a last-resort option with no proven results. > I'm getting as tired of and confused with the whirling toilet bowl of Chemo has some experience behind it, and we are not choosing it as a last-resort option by any means. We are choosing it as an early, aggressive option, as part of a package of ADTII, chemo, and probably radiation. Do we look forward to the SEs? No. Do we think it most likely is the best approach to get a cure? Yes. Do you have to agree with me? No.
Considering your PSA, I.P., many many people would be just fine with that result. Many people wouldn't even know anything except their PSA was <.01. (Don't yell at me. Regular PSA tests are a perfectly valid way to manage this disease, I.P. There's no 'proof' that getting micro measures extends life.) You talk about the quality of your life, and I'm glad you surf and run and work out and everything else. A lot of us DON'T do that. But we have love, sunset walks, lovemaking, friends, laughter, joy in our lives. I wish for you Peace, I.P.
It does kind of get old that you are so combative with everyone. I also am sick of the fact that there are no clear-cut, easy choices out there. A dearth of information. Whatever is learned in a study is outdated before the results are published. And on and on. But that is no reason to be arguing with the people on this group. We're just sharing information as best we can.
> Of course, if I had taken that advice 15 months ago, the most important > and enjoyable measures of my life would have ended then, virtually > guaranteed. We get it, we get it.
> Yes, Laurel, this stuff is THAT confusing. Who was it that said, "The purpose of an open mind is to shut it on something solid"? We all get it that this disease has no clear answers. (Maybe the problem is there is no guaranteed solution?) So you're either going to find a position you can live with, and let it go, or not. It just bothers me that you don't seem so angry at the disease as at the people who post. Some of these men have had PCa for decades. Lots of them don't have .005 PSAs. They sure as hell don't write the studies they quote.
And who are you to be angry because they don't have your extreme reaction to the SEs of ADT? Its a one trick pony, I.P., and you're wearing it out.
I think you are a cool dude but you could think about applying part of your considerable intellect to being more considerate. Your intense reaction to the term "ADT" is understandable. You may have a tough decision point some day. That is still no reason to scream at anyone who mentions ADT in this list. If you think you are the "only one" pointing out the SEs of ADT, you're not being rational. No one is soft-pedaling it. Other people have different decision points than you. And, ADT is probably the ONLY treatment that the SEs are controllable. People can stop this treatment and stop the side effects. That is a plus no other treatments give you. Please don't yell at Ralph or Steve any more. Yell at me, I'm young and healthy.
best regards, laurel
I.P. Freely - 06 Apr 2006 06:13 GMT Please help me understand, Laurel. Is it my writing style, my insistence on facts when the stakes are high, or something yet undefined, that led you to misunderstood every single word of my post, wrongly presume it was about me rather than about you and your husband, and then write:
>> I'm not clear on your meaning. I wouldn't expect SE remedies to directly >> affect ADT results, so I presume you're saying the "long-term result" [quoted text clipped - 4 lines] > I.P., I think EVERYONE in the group understands that you do not want > ADT and you consider the SEs absolutely unacceptable. My comment wasn't about me or my ADT choice, Laurel. It was an attempt to clarify a comment that confused me and thus, potentially, you -- as verified by your comments later. Does the statement I very politely questioned -- " Recognizing the possible SEs of ADT and applying remedial action can go a long way in the long-term results" -- mean remedial action improves SEs or remedial action improves ADT benefits ... two very different concepts?
I added "(The problem in my case is that there's no magic bullet for what I consider its most debilitating and most certain SEs.)" as anecdotal support to the literature's position that there are very common -- in fact virtually universal -- ADT SEs that cannot be simply fixed, if at all.
> I guess you're > afraid you may be forced to make a real choice for or against ADT. I made my choice about my own preemptive ADT over a year ago after my very extensive ADT research was blessed by a team of oncologists. Any comments I make about it now are attempts to clarify its pros and cons for others who inquire or comment about it and to learn about updates others here have seen since then. That's what forums do, and this is hands down the finest, most focused, most polite newsgroup I've ever seen on USENET, YAHOO or anywhere else. If you think you've seen yelling here, you'd consider alt.kittens.roses to be nuclear warfare.
>> I've seen lots of buzz here about chemo recently, but have also seen >> opposing viewpoints that concur with the consensus I encountered a year >> ago: chemo is still a last-resort option with no proven results.
> Chemo has some experience behind it, and we are not choosing it as a > last-resort option by any means. We are choosing it as an early, > aggressive option, as part of a package of ADTII, chemo, and probably > radiation. Then you and I both should read further, because many people here and in the literature have called PC chemo an unproven, last, desperate, usually ineffective resort quite recently.
> Do we think [ADT] most > likely is the best approach to get a cure? Yes. Do you have to agree > with me? No. I DID and do agree with you, in black and white, emphatically in some cases, in your husband's case.
> Considering your PSA, I.P., many many people would be just fine with > that result. Many people wouldn't even know anything except their PSA > was <.01. (Don't yell at me. Regular PSA tests are a perfectly valid > way to manage this disease, I.P. There's no 'proof' that getting micro > measures extends life.) I don't see what my case has to do with your husband's.
> we have love, sunset walks, lovemaking, friends, > laughter, joy in our lives. It's great that you enjoy those things. Are you aware they are all at risk with ADT, according to the literature, several people in this forum, and a psychologist whose specialty is men our age? If not, could that be because some people soft-pedal SEs, as PC treatment studies, PC authors, and this forum's archives establish?
> It does kind of get old that you are so combative with everyone. Anyone who considers attempts to cut through this confusing morass as being "combative" is going to have a hard time getting past the confusion to bottom line facts and consensus.
> I also > am sick of the fact that there are no clear-cut, easy choices out > there. A dearth of information. Whatever is learned in a study is > outdated before the results are published. And on and on. But that is > no reason to be arguing with the people on this group. How on earth ELSE do we resolve the confusion you rightfully describe other than by discussing it? How on earth ELSE can newbies comprehend the extent of the confusion and choose which path they want to follow through it than by reading discussions of the issues? Anyone who offers some magic, undisputed protocol could buy out Bill Gates if his treatment were that effective and safe. Maybe one of them will attain that status some day, but if that day were here its headlines alone would cover every front page from the fold up.
> We're just sharing information as best we can. Which is precisely what I'm doing. This topic DEMANDS debate simply BECAUSE people, from experts to pts, do not agree on much of it. This is a very tough place to be for people who can't stomach disagreement, because there is probably as much disagreement as there is agreement even among urology oncologists. How does one decide which dogcatcher or presidential candidate, to vote for, let alone choose a cancer treatment, without examining all significant sides of the issues?
>> Of course, if I had taken that advice 15 months ago, the most important >> and enjoyable measures of my life would have ended then, virtually >> guaranteed.
> We get it, we get it. Obviously not, as that comment was tied to and intended to anecdotally support claims in the literature and this forum that blindly taking an onc's tx advice has bitten many pts in the butt for multiple reasons.
>> Yes, Laurel, this stuff is THAT confusing. Here I commiserate with you in an attempt to console you, and I compliment your grit and intelligence just a few posts ago, and you respond with:
> Who was it that said, "The purpose of an open mind is to shut it on > something solid"? If that's how you feel, I'll stop bothering you.
> It just bothers me that you don't seem so angry at the > disease as at the people who post. Where on earth did you get the idea I'm even slightly angry with anyone other than Steve Jordan (that issue -- misleading newbies like yourself about ADT SEs -- was explained in detail long before you even joined us)? The only angry posts I've seen in many weeks are yours and his.
> And who are you to be angry because they don't have your extreme > reaction to the SEs of ADT? Its a one trick pony, I.P., and you're > wearing it out. You're the one making this about me. It WAS about you and your husband and the facts about, not my reactions to, ADT. Anyone who solicits facts and opinions about ADT needs to see the whole picture as painted by books and trials and a majority of ADT subjects, rather than settle for the Pollyanistic views of a handful of patients.
> I think you are a cool dude but you could think about applying part of > your considerable intellect to being more considerate. Your intense > reaction to the term "ADT" is understandable. You may have a tough > decision point some day. That is still no reason to scream at anyone I have absolutely no clue what you're talking about, Laurel. I discuss cancer, its treatments, cancer management philosophy -- and at the moment your thread and your husband -- rationally and impersonally in response to my and others' requests for same. The "intense reaction" I have to ADT is when it's associated with blanket untrue statements like "its SEs can be fixed". I'm sorry, but I can't help what emotions you are reading into my comments.
> No one is soft-pedaling ADT. You are dead wrong on that point, according to large studies, books, and heartbreaking experiences in this forum. Your next three statements illustrate the risks of that problem.
> ADT is probably the ONLY treatment that the SEs are controllable. You have been grossly misinformed if you believe ADT's SEs are all, or even mostly, controllable; there are thousands of exceptions and complications -- many very severe -- to that belief documented in everything from Strum to studies to right here in a.s.c.p. But since you regard facts as aggression and messengers as aggressors, you go ahead and believe what you want.
> People can stop this treatment and stop the side effects. That kind of misinformation is exactly why I speak up when someone soft-pedals SEs. But if you want to believe it, go right ahead, despite what the literature says.
That is a plus no other treatments give you.
I find every word and implication of that comment baffling. If pushed for a generalization, I'd say the opposite is closer to the truth, that some serious and very likely ADT SEs may be the LEAST controllable of any common PC treatment SEs, except for the minority of people who get permanent incontinence or impotence from RP or RT.
> Please don't yell at Ralph or Steve any more. I'm completely clueless as to what on earth you're talking about. When have I EVER even hinted I'm at odds with either of them, let alone been even 1% uncivil towards either of them? I don't even comprehend your repeated "yelling" and "screaming" accusation. In > 10 years and way > 20,000 posts on internet forums, I have engaged in exactly one flame war, a very deliberate, humorous (one reader said he spewed milk out his nose reading it some mornings), and successful attempt to publicly embarrass a thief into paying for a widget he bought from me on the 'net. Flame wars (and vendettas) are for children.
> Yell at me OK, you've convinced me. Here goes, and it ain't gonna be pretty: Would you apparently ultrasensitive people who consider facts -- let alone educated opinions -- to be combative please identify yourselves in advance so I can avoid wasting hours of my precious time responding in earnest to your requests for facts and opinions?
That's not combative, Laurel; it's an earnest request. I'm completely swamped, I've sacrificed other very important activities to make time for this one, and I'm looking for any valid excuse to back off or walk away from it. But when I see intelligent, eager, motivated newbies like you buy into some of the questionable or flat wrong (according to extensive studies and literature) parables of the internet, I have a hard time conscientiously ignoring it. Sadly, you're making that easier, given that this one got me up three hours after I went to bed last night. It remains to be seen whether you're worth a lost night's sleep.
Sorry to disappoint you, but that's about as close as I get to "yelling" at people in print (other than some turd who denigrated U.S. soldiers across the board a few years ago).
And, sorry, but I'm not taking any more time to shorten this.
I.P.
juniper - 06 Apr 2006 15:49 GMT > Please help me understand, Laurel. Is it my writing style, my insistence > on facts when the stakes are high, or something yet undefined, that led > you to misunderstood every single word of my post, wrongly presume it > was about me rather than about you and your husband, and then write: It is the aggressiveness of your writing.
> It's great that you enjoy those things. Are you aware they are all at > risk with ADT, according to the literature, several people in this > forum, and a psychologist whose specialty is men our age? If not, could > that be because some people soft-pedal SEs, as PC treatment studies, PC > authors, and this forum's archives establish? I am aware of the risk that ADT has on lifestyle. One of the points I tried to make is that you cannot seem to get off this topic. And that you think people minimize the effects of ADT. You take every possible opportunity to bring up the side effects of ADT, and you expound on them at such length (and sometimes with such venom), that it seems like a obsession. I don't believe you are a paranoid person, but in this one area, you act like one. 'Soft-pedal SEs'-- They seem TO YOU to soft-pedal them because you cannot abide the thought that for some men, they are bearable/managable/worth living with.
> Anyone who considers attempts to cut through this confusing morass as > being "combative" is going to have a hard time getting past the > confusion to bottom line facts and consensus. It is tone of voice, I.P., not the questions themselves.
> How on earth ELSE do we resolve the confusion you rightfully describe > other than by discussing it? How on earth ELSE can newbies comprehend [quoted text clipped - 4 lines] > that status some day, but if that day were here its headlines alone > would cover every front page from the fold up. I am a newbie. We don't need any help comprehending the extent of the confusion. Measured, clear discussion is far better for increasing our understanding. I can tell the difference between a discussion and a verbal attack when I read it.
Anyone post of a magic protocol on this list gets immediately and summarily responded to. No danger here of a newbie reading a magic cure and not being informed it is pony-pucky.
> Which is precisely what I'm doing. This topic DEMANDS debate simply > BECAUSE people, from experts to pts, do not agree on much of it. This is [quoted text clipped - 3 lines] > presidential candidate, to vote for, let alone choose a cancer > treatment, without examining all significant sides of the issues? What debate? Ralph posts an abstract from a study and you write "I'll be damned if I can make much sense out of that paragraph despite having asked here more than once what the heck stuff like HR=0.24, 0.18-0.31, P<0.001 means". You're just yelling at him because the *abstract* doesn't define its statistical abbreviations.
I can stomach disagreement, I find it informative and sometimes amusing. It seems to be you who is so angry about information, and has to fight it tooth and nail. And all it is is information--conflicting and incomplete--but to me not an issue that demands argument.
Again, it is tone. If you really wanted to examine significant sides of an issue for the benefit of newbies or oldbies, you would present your information in a style that invitied clear comparasion of the data, that would point out discripancies objectively and succinctly. Generally, you do not. You write in a combative tone and you rant. Just using a good vocabulary does not make writing clear, useful, or informative
> >> Of course, if I had taken that advice 15 months ago, the most important > >> and enjoyable measures of my life would have ended then, virtually [quoted text clipped - 5 lines] > support claims in the literature and this forum that blindly taking an > onc's tx advice has bitten many pts in the butt for multiple reasons. We get it, I.P., that you find the side effects of ADT unacceptable and that you will not do it and that you think that anyone who takes ADT will get bitten in the butt because they weren't warned of its horrors and that, even in replying to my comment, you had to take *another* swipe at the ADT horror. You said 'multiple reasons' but that may be a smokescreen you think covers the fact that you do this on the subject of ADT SEs. Trust me, no one reading this NG will be confused about your opinion of the SEs of ADT. I am afraid your extreme and excessive posts tend to minimize your credibility (on that topic, not in general).
> >> Yes, Laurel, this stuff is THAT confusing. > [quoted text clipped - 3 lines] > > Who was it that said, "The purpose of an open mind is to shut it on > > something solid"? I felt your support and I am sorry I did not also communicate that in my reply.
> If that's how you feel, I'll stop bothering you. I.P., if I didn't like you or your posts I would not read them. Simple as that. You would never see a reply out of me. I'll keep reading as long as you keep writing. This mono-focus is only a part of who you are, and you have a lot of good things to say.
> Where on earth did you get the idea I'm even slightly angry with anyone > other than Steve Jordan (that issue -- misleading newbies like yourself > about ADT SEs -- was explained in detail long before you even joined I.P., you write angrily.
Steve Jordan's experience with ADT is MORE valid than yours. One, he has done it longer. Two, he is not obsessed with it so appears more rational on this topic. Three, his experience (to have and to communicate) is his, and not yours to judge.
> us)? The only angry posts I've seen in many weeks are yours and his. LOL.
> I'm completely clueless as to what on earth you're talking about. When Obviously.
> That's not combative, Laurel; it's an earnest request. I'm completely > swamped, I've sacrificed other very important activities to make time I'm earnest also, and writing from a caring perspective. We just are not communicating on this.
> away from it. But when I see intelligent, eager, motivated newbies like > you buy into some of the questionable or flat wrong (according to Why is questionable or flat wrong always about ADT?
> hard time conscientiously ignoring it. Sadly, you're making that easier, > given that this one got me up three hours after I went to bed last I'm sorry about this.
The one morning I *have* to be at work at 8:00, I also *had* to write. So we'll see if I can get there in 11 minutes, and talk later if all are so inclined.
regards, laurel
Steve Jordan - 06 Apr 2006 18:36 GMT On April 6, Laurel replied to IP about me:
> I.P., you write angrily. > [quoted text clipped - 3 lines] > communicate) is his, and not yours to judge. > Thanks, Laurel, for the kind words.
IP did not accuse me of misleading newbies. He accused me of *lying to* newbies.
A lie is a deliberate act. He chose not to present any evidence -- doubtless because there isn't any.
I have never directly addressed him since then, as I consider what he did to be unforgettable and unforgivable.
Fundamentally, at least on the present topic, there is less to him than meets the eye.
Again, thanks for your kindness.
Regards,
Steve J
"Do not go where the path may lead, go instead where there is no path and leave a trail." -- Ralph Waldo Emerson
Steve Kramer - 06 Apr 2006 22:35 GMT > On April 6, Laurel replied to IP about me: >> I.P., you write angrily. >> Steve Jordan's experience with ADT is MORE valid than yours. > Thanks, Laurel, for the kind words. Bombay Grill and Bar, 306 E Main St, Stockton, CA
I make it about a 12-hour drive for each of you.
Work out the date and time to meet over a cold adult beverage.
I'll buy.
juniper - 07 Apr 2006 03:40 GMT > > On April 6, Laurel replied to IP about me: > >> I.P., you write angrily. [quoted text clipped - 8 lines] > > I'll buy. Are you in Stockton, Steve? Because if not, we could probably save money by flying somewhere.
Steve Jordan - 07 Apr 2006 18:05 GMT On April 6, Steve Kramer replied to me (and Laurel):
> Bombay Grill and Bar, 306 E Main St, Stockton, CA > [quoted text clipped - 4 lines] > I'll buy. > I've been known to be willing to do just about anything for a free Refreshing Beverage, but I dunno whether I could get away. Can SK come to Parad--- er, Arizona?
Regards,
Steve J
"Thou shalt remember the Eleventh Commandment and keep it Wholly. " -- Lazarus Long
juniper - 08 Apr 2006 00:01 GMT Hey! He was inviting me & I.P.!!!! To mend our fences!!!! Guess you'll have to get another Arizona Prostate Cancer Symposium, Ralph, so we can all bond.
> I've been known to be willing to do just about anything for a free > Refreshing Beverage, but I dunno whether I could get away. Can SK come > to Parad--- er, Arizona? Steve Jordan - 08 Apr 2006 18:05 GMT On April 7, juniper replied to me:
> Hey! He was inviting me & I.P.!!!! To mend our fences!!!! That's not the way I read it. Perhaps Steve K would be kind enough to clear up the ambiguity.
Regards,
Steve J
juniper - 08 Apr 2006 19:18 GMT > That's not the way I read it. Perhaps Steve K would be kind enough to > clear up the ambiguity. Ack! I could be wrong?????
Steve Kramer - 09 Apr 2006 02:46 GMT It seemed to me that Steve J, IP and Laurel could all make it there in 12 hours. I'm unfortunately much further away, but happy to buy a round.
> On April 7, juniper replied to me: >> Hey! He was inviting me & I.P.!!!! To mend our fences!!!! [quoted text clipped - 4 lines] > > Steve J I.P. Freely - 10 Apr 2006 01:11 GMT > IP did not accuse me of misleading newbies. He accused me of *lying to* > newbies. > > A lie is a deliberate act. He chose not to present any evidence -- > doubtless because there isn't any. For your benefit in making an ADT decision, Laurel, Steve knows I presented extensive evidence then and several times more recently, knows I have often ALSO accused him of misleading newbies, and still deliberately and repeatedly claims otherwise. I never "accused" him of lying, if one equates "accusation" with lack of proof. I ESTABLISHED, and the forum archives prove, that he's lying then and now. Since he values truth a much as I do, and again for the benefit of your ADT evaluation, I'm forced to presume that his problem with the truth about SEs and about the archives of this forum is related to his ADT. Cheap shot? No; honest layman's best guess with general support from the medical literature, and the reason I don't take his self-proclaimed vendetta personally.
I.P.
I.P. Freely - 10 Apr 2006 00:43 GMT Another long one, folks, just because Laurel is so earnest, sincere, and ADULT in her criticism -- and is busting her chops so hard to help her husband -- that I'm going to hang in there rather than walk away. i.e., I think she's worth the effort.
> It is the aggressiveness of your writing. Apparently it's not aggro ENOUGH, given the misunderstandings that still abound about SEs and the number of world-class PC authors who harp about and conduct studies of those misunderstandings and misstatements.
> I am aware of the risk that ADT has on lifestyle. Your previous post contradicts that statement.
> you cannot seem to get off this topic. You take every possible > opportunity to bring up the side effects of ADT, and you expound on > them at such length (and sometimes with such venom), that it seems like > a obsession. I don't initiate the topic, and surely didn't initiate this thread. I mention it primarily when people ask for advice on it (see thread topic), soft-pedal it to the point of misleading others trying to make important decisions, and once in a great while when I want or have new info on it. Please excuse me -- or not -- for valuing others' health over my own popularity. And, what you call "venom" I call passion, concern, and candor.
> And that you think people minimize the effects of ADT. Think, schmink. Labelling ADT SEs as "controllable", "reversible", "manageable", etc. without a WHOLE lot of caveats and catches is a slap in the face of the thousands of ADT pts from renowned oncologists to real guys in this forum whose ADT gave such severe and unmanageable SEs they chose to face their mets bare naked instead, knowing the consequences. A study showed that only 5% of uros discuss osteoporosis with their ADT pts, despite its near-certainty to occur and its measurable incidence of hip and spine fractures. A specific ADT SE study showed that virtually every subject would reject ADT if he encountered its most common, pronounced SEs. A psychologist whose entire patient load is aging men told me (I think/hope she's overstating it, but it IS her field) ADT absolutely devastates every ADT pt she has, destroying their capacity to love their spouse or think clearly. An OHSU study specifically and clinically equated the measurable mental impacts of ADT to those of early Alzheimer's. This forum's most vocal ADT SE proponent broadly pronounces ADT's SEs controllable and manageable, yet when pressed for details admits or demonstrates that he: 1) is forced by chronic fatigue to spend half his life in bed, 2) blames his chronic depression (a nearly universal effect of natural or induced T suppression) on his cancer rather than his ADT, 3) is one of our more irascible (another near-universal ADT SE) bomb-throwers when someone says something he disagrees with, such as "free medical care" or "ADT SEs are seldom fully manageable", 4) inexplicably touts Strum's ADT work yet denies or questions most of its findings, and 5) refuses to discuss #4's discrepancy. And his ADT SEs were in the lightest three out of the 19 or so respondents to a poll of this forum's ADT SEs.
Steve knows much more about PC than I ever will, presents it in a much more professional manner, and is usually more erudite and thorough than I. My only hangup with him is his puzzling, against-the-grain ADT SE stance. I dismiss those idiosyncrasies as his problem except when they lead new decision-makers such as you to say: a. No one is soft-pedaling ADT. b. ADT is probably the ONLY treatment that the SEs are controllable. c. People can stop this treatment and stop the side effects.
> It is tone of voice, I.P., not the questions themselves. Sorry, babe, but I explained long ago that a) in print, tone of voice is largely in the ear of the reader and b) I not only ain't got time to sugarcoat stuff, but I am anti-sugar-coating. I lack the time, inclination, and ability to write words that will offend no one, ever, no where. It's not possible, and after having to repeat this stuff every time sugarcoating misleads another newbie, I just don't care any more how tender their little ears are. Once again, short and to the point: STUDY Strum and his implications. Google the meds that might mitigate the SEs, including THEIR SEs, then Google the SE meds' SEs and THEIR SEs. Google all those meds' contraindications. (Example: the majority of men our age should not take most, maybe all, of the bone-preserving meds.) Study ADT SEs in all the reputable books, sites, studies, and polls plus this forum's small but disconcerting poll > a year ago. Then draw your own conclusions rather than buying the spiels of any of us internet w.nkers. Or, at age 47, dive into ADT experimentally. I'd GUESS it's more likely to help than harm in your husband's case.
> I can tell the difference between a discussion and a > verbal attack when I read it. Apparently not; you have never seen an ad hominem verbal attack from me other than at outright spammers, and we HAVE seen several from your buddy Steve Jordan directed at forum regulars such as myself.
> Anyone post of a magic protocol on this list gets immediately and > summarily responded to. No danger here of a newbie reading a magic > cure and not being informed it is pony-pucky. I am NOT saying Leibowitz's or Friedman's ideas are valid or invalid, magic or not, or curative or not. I AM saying that their ideas are still under review by their peers, and thus not proven protocols in the eyes of the oncology world. Yet you seem quite taken by their treatments. I hope their protocol(s) take the world by storm, save millions of lives and crotches, and make them feelthy rich . . . but I haven't seen their protocols in 6" headlines yet, and other very credible medical ideas have faded from sight.
>> This topic DEMANDS debate simply >> BECAUSE people, from experts to pts, do not agree on much of it.
> What debate? Ralph posts an abstract from a study and you write "I'll > be damned if I can make much sense out of that paragraph despite having > asked here more than once what the heck stuff like HR=0.24, 0.18-0.31, > P<0.001 means". You're just yelling at him because the *abstract* > doesn't define its statistical abbreviations. I give up, Laurel. I just don't get the "yelling" accusation. Here, in context, I'm cursing my own frustration over the statistics jargon no one has been able (or willing?) to explain despite repeated requests, and lamenting in the rest of the post that it must confuse many others even more because I've studied statistics.
> It seems to be you who is so angry about information, and has > to fight it tooth and nail. Exactly, precisely, 180 degrees wrong. It is DIS-, MIS-, and contradictory information that I fight.
> And all it is is information--conflicting > and incomplete--but to me not an issue that demands argument. How, other than debating it, does one resolve conflicting or incomplete information? That you label debate and discussion with the loaded term "argument" is your problem, not mine. Yes, Tom Cular agrees with you, but there's no way I can please everyone, so I don't try and I don't resent legitimate detractors' opinions.
> If you really wanted to examine significant sides > of an issue for the benefit of newbies or oldies, you would present > your information in a style that invited clear comparison of the > data, that would point out discrepancies objectively and succinctly. > Generally, you do not. I initially, and several times since then, presented my thorough hundreds-of-hours analysis of ADT benefits and SEs in great detail, with a long list of the most impeccable references in PC and related medical fields. Even my very condensed, abbreviation- and acronym-filled, bullets-and partial-sentence format written for oncologists filled a couple of pages and included dozens, maybe scores, of facts gleaned from peer-reviewed literature including their own. I had the document reviewed by the oncology board of a major teaching hospital and VA center (the largest source and repository of PC data in the world AFAIK), which includes many PC researchers, surgeons, authors, and trials conductors. They not only approved every one of my findings, but a) said I shed some new light on some issues, especially regarding ADT SEs, and b) tweaked their ADT paradigm because they hadn't seen the whole ADT picture summarized this succinctly.
No one wants to see that document presented every time I question an ADT statement.
> You write in a combative tone Or you perceive in a combative mindset . . . and apparently selectively, if you read Jordan's posts and consider them benign.
> and you rant. Darn right . . . every time I see a newbie being led down a garden path. For example . . . how you gonna keep ADT from significantly weakening Steve's bones if he, like many to most other middle-aged men, has a hiatus hernia?
> We get it, I.P., that you find the side effects of ADT unacceptable and > that you will not do it. Trust me, no one reading this NG will be > confused about your opinion of the SEs of ADT. Yet another demonstration that you DON'T get it. My OPINION of ADT SEs is of importance to no one but myself, so I don't discuss it often or at length. What you still can't understand is that I'm presenting facts straight from the literature and leaving it up to readers to formulate their own opinions.
> you think that anyone who takes ADT will get bitten in the butt I've never said or implied that "anyone will". "Many have", however, is a widely documented fact.
> because they weren't warned of its horrors Common, straight from the literature and from this forum. I'm not going to let the objections of a couple of highly sensitive people get in the way of opening people's eyes to the documented, professionally decried understatement of ADT SEs. Yet another oncologist, this one also an endocrinologist, told me just Friday that adjuvant ADT is a highly and INCREASINGLY controversial treatment.
> and that, even in replying to my comment, you had to take *another* > swipe at the ADT horror. No. My "swipe" (you tend to use a lot of loaded terms) was not at ADT; it was at the fact that your post proves you have been misguided by Steve's denial and/or dismissal of his own SEs and Strum's ADT treatise.
> You said 'multiple reasons' but that may be a smokescreen . Nope. Merely avoiding repeating that two-page ADT analysis and the facts/factors supporting my disagreement with Jordan on the work of Strum and many of his peers.
> I.P., you write angrily. I disagree. I write facts, and some people who base life's decisions on emotions (sometimes aided by anecdotal experience) rather than facts resent facts (sadly and dangerously, that extends WAY beyond medicine). Other people want everything sugar coated, but I don't do sugar; they'll have to bring their own. And I sure as HELL don't do Political Correctness. That particular PC is far more dangerous than our piddling little form of PC, because Political Correctness is destroying my nation and threatens the free world. And when I'm writing OPINIONS, I try to distinguish them from facts.
> Steve Jordan's experience with ADT is MORE valid than yours. Absolutely, infinitely so. But neither his nor mine means squat to anyone but him or me. It's large-population FACTS, not what some dude claims happened to him, that matter.
> he is not obsessed with it so appears more rational on this topic. A stunning statement, given his half-dozen ad hominem and/or insulting personal attacks on me and the fact that he keeps them up even after each is proven false. You seem to equate rationality with what you want to hear. Steve insists ADT SEs are controllable, manageable, solvable with meds, despite the facts he admitted later that: 1. He is depressed (an almost ubiquitous effect of T suppression), but denies it's due to his ADT. 2. He is so fatigued he has to spend half his life in bed and is tired the OTHER half. Would YOUR Steve consider that "controlled", given his emphasis on QOL? And realize that Jordan is one of the 2 or 3 least-SE-impacted of all the 20 or so forum members who responded to my SE poll last year. You're choosing your husband's treatment based on the least typical ADT pt we've seen because you like his WRITING style? [If you think he's s pleasant and rational . . . you're new here, aren't you? ;-) ]
> his experience (to have and to communicate) > is his, and not yours to judge.
I don't judge his anecdotal experience, nor his exceptional skill in presenting what he believes. What I do, and we must, judge is others' representation of important facts. I judge the world's leading authorities on ADT SEs to be more credible than any internet w.nker including Steve Jordan or me ABOUT THE PC POPULATION IN GENERAL. I assert facts and professional opinions when anyone here misstates them and misleads people such as you, and -- like Steve has often staunchly refused to do -- I back up my ADT statements with quotes and data from peer-reviewed publications. I've asked him many times to explain why he disagrees with the SE literature and extension thereof, in case I've overlooked something valid and important, but he refuses. And I oppose only his most blatant SE misstatements; as long as he approximates the consensus of the SE literature I keep my mouth shut. Certainly there are contradictions among name-brand sources, but Steve is our most adamantly anti-literature opiner about ADT SEs and I'm one of our most stringent ADT SE literature-thumpers, so we're bound to be at odds. My only ADT ADVICE is to Do Your Homework.
>> The only angry posts I've seen in many weeks are yours and his.
> LOL. You ARE the only one yelling and screaming about yelling and screaming, and he IS this forum's primary source of ad hominem accusations and insinuations. I doubt anyone else is LOL about either.
> Why is questionable or flat wrong always about ADT? According to the world's foremost experts on ADT SEs, the foremost consistently wrong ADT SE statement is, "They are always or even usually/mostly controllable". Anything even close to that claim must be accompanied by a long list of disclaimers, exceptions, meds, countermeds, and situational definitions of such words as "controllable", "amelioration", and "manageable".
Laurel, I appreciate your earnestness in trying to change my writing style, but since I was seven years old my writing style, credibility, and/or candor have garnered acclaim, awards, assistance, cooperation, and many millions of dollars in research funds from scores of teachers, readers, publishers, colonels and generals, physicians, state governors, and managers at schools, magazines, internet forums, newspapers, corporations, hospitals, and the Dept. of Defense -- including the Secretary thereof. I have defeated aggro corporate lawyers, persuaded many doctors to change their minds in several medical cases, averted law suits, gotten me and my wife every job we ever applied for in our 37 years together in five states, won 27 disputes with large corporations, made many people laugh in print and in an auditorium, resolved long-standing disputes among other people and entire local and federal agencies with arguably global impact, instantly gotten me fantastic unrelated writing jobs as a magazine editor and writer and regular e-zine columnist . . . and ruffled a handful of feathers.
Screw the feathers.
I.P.
steve - 05 Apr 2006 02:45 GMT I.P., I've read the works of top-notch people, and I've consulted with a carefully selected team of physicians, and the opinion is unanimous, If surgery fails, start ADT right away, you can always stop it. Steve F
> > Recognizing the > > possible SEs of ADT and applying remedial action can go a long way in [quoted text clipped - 32 lines] > > I.P. I.P. Freely - 08 Apr 2006 23:22 GMT > I.P., > I've read the works of top-notch people, and I've consulted with a > carefully selected team of physicians, and the opinion is unanimous, If > surgery fails, start ADT right away, you can always stop it. Ya gotta define "fail". Some dudes say mere PSA return doesn't justify ADT, that it's overkill until tests or symptoms show CANCER, and debatable even then.
Those "dudes" include Walsh and many of his peers.
I.P.
ralphv - 05 Apr 2006 04:11 GMT >> ralphv wrote: > > Recognizing the [quoted text clipped - 6 lines] > that there's no magic bullet for what I consider its most debilitating > and most certain SEs.) RV>+++++++> Yes, by knowing that one will go intermittent and treating the SEs of ADT one can amiliorate their negative effect.
> More active chemo protocols have evolved. > > I've seen lots of buzz here about chemo recently, but have also seen > opposing viewpoints that concur with the consensus I encountered a year > ago: chemo is still a last-resort option with no proven results. RV>+++++++> There is an inclination to treat early with chemotherapy to try to erradicate the androgen-independent portion of the tumor load that does not respond to deprivation. In the case of Dr. Leibowitz and Tucker they might even apply supra levels of testosterone to "choke" those AI cells that avoid death by chemotherapy, taking advantage of the biphasic nature of testosterone.
Ralphv
I.P. Freely - 07 Apr 2006 00:59 GMT > Yes, by knowing that one will go intermittent and treating the SEs of > ADT one can amiliorate their negative effect. Absolutely. But some very intelligent people apparently equate "ameliorate" with "reverse" or "prevent". Big difference, especially considering some of the powerful and intrusive drugs used for amelioration (Google 'em), those drugs' various SEs (again, Google), osteoporosis prevention medication contraidication for hundreds of thousands of PC pts (think GERD), cumulative effects of some very common and serious SEs through subsequent ADT sessions (e.g., osteoporosis, cardiovascular, diabetes), the variable T recovery time's intrusion into the off-ADT period, and the number, if not percentage, of men who never recover their T, thus live the rest of their lives effectively on ADT.
My PC has been dramatically ameliorated. It's still highly likely to kill me.
> There is an inclination to treat early with chemotherapy to try to > erradicate the androgen-independent portion of the tumor load that does > not respond to deprivation. > In the case of Dr. Leibowitz and Tucker they might even apply supra > levels of testosterone to "choke" those AI cells that avoid death by > chemotherapy, taking advantage of the biphasic nature of testosterone. I'll certainly watch that closely ... along with immunotherapy, Casodex monotherapy, and several other experimental new protocols. But by now it's tough to get excited -- let alone convinced -- about treatments associated with such words as "new", "more active", "inclination", "try", "might even", and all the other terms we've seen so many times before.
And when my PC reaches the stage addressed in this thread, I'll STILL want to examine the whole picture before choosing how to treat it. IIRC, Laurel stated that her Steve values QOL very highly, as I do and as virtually 100% of the subjects in a QOL study did. That's why I researched my tx options' SEs as thoroughly as I researched their benefits immediately post-op, it's why I'll repeat the process at my next decision point, and it's why the Prostate Cancer Research Institute advises us to take it a step further and "choose our adjuvant treatments just by their SEs alone and the hell with benefits 'cause there's no outcome difference among treatments."
(If anyone perceives any yelling, screaming, combat, anger, antagonism, or any of the rest of a thesaurus above this line ... well please pinch yourself and wake up, 'cause you're dreamin'.)
I.P.
ralphv - 07 Apr 2006 14:01 GMT > Absolutely. But some very intelligent people apparently equate > "ameliorate" with "reverse" or "prevent". Big difference, especially [quoted text clipped - 9 lines] > My PC has been dramatically ameliorated. > It's still highly likely to kill me. RV>++++++++++> Can't help if people confuse ameliorate with reverse or prevent. The present situation where men can use intermittent deprivation is quite different than it used to be, SEs are better understood and "ameliorated" if the patient wants to do it.That involves a better QOL
If early ADT provides a survival benefit, it is an important fact for the patient to know. It is the same as knowing that surgery can cause some nasty side effects and those side effects can also be ameliorated. The combination of SEs amelioration and survival advantage are just facts in the decision making process for the individual patient.
> > There is an inclination to treat early with chemotherapy to try to > > erradicate the androgen-independent portion of the tumor load that does [quoted text clipped - 9 lines] > "try", "might even", and all the other terms we've seen so many times > before. RV>+++++++> No one should get excited, just recognize that combined therapies based on an improved knowledge of the biology of PCa are being applied. Another option for patients facing aggressive disease to decide on.
> And when my PC reaches the stage addressed in this thread, I'll STILL > want to examine the whole picture before choosing how to treat it. [quoted text clipped - 6 lines] > just by their SEs alone and the hell with benefits 'cause there's no > outcome difference among treatments." RV>++++++> No outcome difference? Early deprivation has shown a survival benefit and you say there is no outcome difference? Well, we better get off the topic, cuz we speak apples and oranges...
> (If anyone perceives any yelling, screaming, combat, anger, antagonism, > or any of the rest of a thesaurus above this line ... well please pinch > yourself and wake up, 'cause you're dreamin'.) > > I.P. I.P. Freely - 09 Apr 2006 00:31 GMT > The > present situation where men can use intermittent deprivation is quite > different than it used to be, SEs are better understood and > "ameliorated" if the patient wants to do it.That involves a better QOL Please point me to literature supporting significant improvements in ADT SE amelioration in the past few months. I've not seen it, and don't want to mislead others or impair my own decisions.
> If early ADT provides a survival benefit, it is an important fact for > the patient to know. Of course. That's why I analyzed it exhaustively a year ago, follow it reasonably now, and address it when appropriate.
> the Prostate Cancer Research Institute >> advises us to take it a step further and "choose our adjuvant treatments >> just by their SEs alone and the hell with benefits 'cause there's no >> outcome difference among treatments."
> No outcome difference? Early deprivation has shown a survival benefit > and you say there is no outcome difference? Tell it to the PCRI; it's their statement and has been discussed here at length. When you've convinced them, I'll gladly change my tune.
I.P.
ralphv - 09 Apr 2006 02:48 GMT > Please point me to literature supporting significant improvements in ADT > SE amelioration in the past few months. I've not seen it, and don't want > to mislead others or impair my own decisions. RV>++++++> That is because that information (provided by the PCRI) has been available for years. It just takes time to filter down and be accepted. Some are unwilling to do that. Go to: http://www.prostate-cancer.org/education/sidefx/Strum_ADS.html
The Androgen Deprivation Syndrome By Stephen B. Strum, MD, Healing Touch Oncology Reprinted from PCRI Insights January 1999, vol. 2, no. 1
<Quote> "For example, patients who are candidates for potentially curative local therapies, the duration of neo-adjuvant ADT rarely exceeds 1 year. Therefore, such patients suffer the typical acute ADS symptoms, but will not experience chronic ADS symptoms to any significant extent. However, acute ADS symptoms invariably compromise the lifestyles of healthy and active prostate cancer patients, and mandate that certain changes be made in the patients' diet, exercise and/or work habits during ADT. Chronic ADS symptoms are much more prevalent in PC patients treated with ADT than is currently recognized, and some are nearly inevitable in patients treated longer than a year. For such patients, specific treatment strategies must be implemented to minimize or prevent the development of chronic ADS. Left untreated, chronic ADS is progressive with ongoing ADT and often lead to other medical complications. Summary In the past, patients who were not candidates for local therapy were typically treated with some form of androgen blockade indefinitely. Armed with our current knowledge of acute and chronic ADS symptoms, we treat such patients with one or more of the therapies listed in Tables 2a and 2b to prevent and/or treat acute ADS (Table 2a) and chronic ADS (Table 2b).1 Another means to avoid chronic ADS is to offer Intermittent Androgen Deprivation (IAD). Depending upon the required duration of ADT individually determined for patients, IAD may be a viable alternative for patients meeting specific response criteria.
<End of Quote>
Go and look at the tables for treatment of SEs TABLE 2a: Preventative & Active Treatments for Acute ADS
TABLE 2b: Preventive & Active Treatments for Chronic ADS
> > No outcome difference? Early deprivation has shown a survival benefit > > and you say there is no outcome difference? > > Tell it to the PCRI; it's their statement and has been discussed here at > length. When you've convinced them, I'll gladly change my tune. RV>++++++++> The PCRI provided the information above. It is logical to recognize that with the availability of intermittent suppression and with the recognition of possible SEs(ignored or not well understood in the past) and possible treatments to reduce them, patients have a better QOL while on ADT. No need to alert the PCRI. They already knew that more than 7 years ago. Time to catch up.
RalphV
juniper - 09 Apr 2006 05:23 GMT > <Quote> > "For example, patients who are candidates for potentially curative > local therapies, the duration of neo-adjuvant ADT rarely exceeds 1 > year. Therefore, such patients suffer the typical acute ADS symptoms, > but will not experience chronic ADS symptoms to any significant extent. I wonder if Steve will get off in a year. We didn't even ask. We knew it was long term, and the details of the chemo were more immediate.
ralphv - 09 Apr 2006 05:38 GMT > I wonder if Steve will get off in a year. We didn't even ask. We knew > it was long term, and the details of the chemo were more immediate. Laurel, A WAG response is probably not. But when you add all the after treatments you are contemplating, hopefully the amount of residual disease will cooperate and die off sooner than later. We certainly hope that will be the case.
RalphV
I.P. Freely - 10 Apr 2006 02:05 GMT >> Please point me to literature supporting significant improvements in ADT >> SE amelioration in the past few months. I've not seen it, and don't want >> to mislead others or impair my own decisions.
> information (provided by the PCRI) has been available for years. > It just takes time to filter down and be accepted. Some are unwilling > to do that. Go to: > http://www.prostate-cancer.org/education/sidefx/Strum_ADS.html > The Androgen Deprivation Syndrome That is my largest, broadest, most-quoted single source of ADT info, and is supplemented by an entire hardback book on just androgen deprivation. I sort of HAVE to accept it -- or not --when there is nothing newer and/or more authoritative to contradict it.
> "For example, patients who are candidates for potentially curative > local therapies, the duration of neo-adjuvant ADT rarely exceeds 1 > year. The topic is early adjuvant ADT (apples), not neo-adjuvant ADT (kumquats).
> acute ADS symptoms invariably compromise the lifestyles of > healthy and active prostate cancer patients Bingo.
> Chronic ADS symptoms are much more prevalent in PC patients treated > with ADT than is currently recognized, Bingo.
> and some are nearly inevitable > in patients treated longer than a year. Bingo.
> Go and look at the tables for treatment of SEs
> TABLE 2a: Preventative & Active Treatments for Acute ADS > TABLE 2b: Preventive & Active Treatments for Chronic ADS Ralph, I and others have beaten those tables, and their implications, and the implications of their implications, and the exceptions and contraindications of those tables and their implications, to death. As you say, they ameliorate . . . REDUCE . . . SOME OF . . . not all or even necessarily most of . . . the ADT SEs, not "control ADT SEs".
Ralph: >>> No outcome difference? Early deprivation has shown a survival benefit
>>> and you say there is no outcome difference? I.P.: >> Tell it to the PCRI; it's their statement and has been discussed here at
>> length. When you've convinced them, I'll gladly change my tune. Ralph: > The PCRI provided the information above. No need to alert the PCRI.
You misunderstand completely. The PCRI, Stolz in particular, is the SOURCE of my statement. When someone changes their mind, I'll change my tune.
> They already knew that more than 7 years ago. Time to catch up. I'm workin' on it . . . I'm workin' on it. My latest data points are this from way back on Mar 23, '06 [ http://psa-rising.com/blog/index.php/2006/03/26/limitations-of-hormonal-blockade -for-localized-prostate-cancer/ ], an endo/onc's statement a whole two days ago that ADT is becoming still more controversial, and a university oncology board's switch from recommending early ADT post-op to recommending RT instead three months ago.
> It is logical to recognize that with the availability of intermittent > suppression and with the recognition of possible SEs(ignored or not > well understood in the past) and possible treatments to reduce them, > patients have a better QOL while on ADT. 1. Logic has failed in countless medical issues. I apply it to my PC only when I have no alternative. If cancer were logical in the context of current knowledge, we wouldn't have PC any more. 2. IAD is still debated hotly among the experts; no point in my forming or voicing any personal opinions on it. 3. Certainly ADT pts have a better QOL on ADT now than yesterday, or last year, or five years ago. But thousands still run screaming from it, shouting "Give me QOL or give me death", so to speak, according to the most current studies I've seen.
And ennyone who thinks you and I are angry at each other would be wise to avoid at all cost them OTHER 569,382 USENET newsgroups. ;-)
I.P.
ron - 10 Apr 2006 02:52 GMT So consider estrogen therapy. Its PCa-specific therapeutic effect is well documented, having been used before lupron, etc became available. It increases bone density, lifts the mental fog, no hot flashes, etc. The main SE is gynecomastia, which can be treated. What makes it more palatable today is the parenteral administration which bypasses the liver and reduces the problem with cardio events that complicated its administration in the pre-luporn days. Instead od paying >1K$ for a lupron shot, a set of patches runs in the $100 range, what a savings for the individual and the country. So the drug companies certainly aren't touting it. Lookup the studies by Ockrim for more information. A number of oncs in the US have been using ithe patches with their patients for a while now...Ron
ralphv - 10 Apr 2006 13:59 GMT I.P., Somehow when reading your answer I cannot but feel that we have lost our sense of topic direction and purpose. I do not consider the SEs of ADT inconsequential. On the contrary, they can and do affect QOL. Still, the question that started the thread was:
>Looking forward to any opinions about starting ADT immediately (well, >3-4 weeks after RP) or waiting to see what the PSA is. Local lymph >node met & bladder neck met, G9. Also, how in the world do you find >the best HT? The situation presented to us was related to a case for consideration before treatment for what could have been a case of localized disease. The diagnostics were only two positive biopsy cores out of ten and a GS 3,4. Major negative parameter was an elevated PSA. Surgical removal was the treatment selected. The result has been that the diagnosis was under staged and now the patient was presented with a positive lymph node, positive margin at the bladder neck and a GS 4,5. In a 47-year old man the decision-making on what to do next is very different than in a 65 to 70 year old man faced with a similar prognosis.
At that point, based on current medical literature, I provided Laurel with the data of the Messing et al study: After a median of 7.1 years of follow-up, 7 of 47 men who received immediate antiandrogen treatment had died, as compared with 18 of 51 men in the observation group (P=0.02). The cause of death was prostate cancer in 3 men in the immediate-treatment group and in 16 men in the observation group (P<0.01). At the time of the last follow-up, 36 men in the immediate-treatment group (77 percent) and 9 men in the observation group (18 percent) were
alive and had no evidence of recurrent disease, including undetectable serum prostate-specific antigen levels (P<0.001). In the observation group, the disease recurred in 42 men; 13 of the 36 who were treated had a complete response to local treatment or hormonal therapy (or both), 16 died of prostate cancer, and 1 died of another disease. The remaining men in this group were alive with progressive disease at the time of the last follow-up or had had a recent relapse. The trend has held for up to 10 years(at the last update in 2003), with
significant improvements seen in both overall and cause-specific survival in the treatment arm. At 10 years follow-up, nearly 80% of patients treated with immediate ADT were alive vs just under 50% of patients who were treated with ADT at disease progression.
Source: Messing E, Manola J, Sarosdy, et al. Immediate hormonal therapy compared with observation after radical prostatectomy and pelvic lymphadenectomy in men with node positive prostate cancer: results at 10 years of EST 3886. J Urol. 2003;169:396. Abstract 1480.
That was followed by a more recent study from the Mayo Clinic databank: Adjuvant androgen deprivation therapy improves survival in patients with prostate cancer invading the seminal vesicles. 2006 Prostate Cancer Symposium Abstract No:180 Author(s): B. A. Inman, E. D. Kwon, R. P. Myers, B. C. Leibovich, M. L.
Blute, H. Zincke, H. Zincke That study reported the following: Results: Median follow-up was 8.4 years and the mean age was 66 years in both ADT groups. Patients that had received immediate adjuvant ADT had higher preoperative PSA values (13.9 ng/mL vs. 10.6 ng/mL, P=0.001), higher clinical stages (P=0.044), higher pathologic Gleason scores (P=0.006), more positive surgical margins (76% vs. 44%, P<0.001), and more aneuploid tumors (51% vs. 39%, P=0.005). Remarkably,
despite the presence of these multiple predictors of poor prognosis, these patients actually had better oncologic outcomes than patients that had not received immediate ADT {10-year bRFS: 60% vs. 23%, P<0.001; 10-year CSS: 97% vs. 90%, P=0.036}. After adjusting for pathologic Gleason score, preoperative serum PSA, surgical margin status, and DNA ploidy, the multivariate Cox model showed an even more pronounced protective effect of ADT for bRFS (HR=0.24, 95%CI: 0.18-0.31, P<0.001) and CSS (HR=0.36, 95%CI: 0.14-0.94, P=0.036). Conclusions: Men with PCa invading the seminal vesicles that received immediate postoperative ADT had considerably better outcomes than similar men that did not receive such treatment. This survival advantage occurred despite the presence of significantly more aggressive PCa in the group of immediately treated patients. These results suggest that immediate adjuvant ADT should be strongly considered in patients with PCa invading the seminal vesicles.
All throughout the thread you have raised the point about the significant impact of ADT's side effects on QOL. You said:
> The topic is early adjuvant ADT (apples), not neo-adjuvant ADT (kumquats). > [quoted text clipped - 12 lines] > > Bingo. RV>++++++> The SEs of ADT are not different for neo-adjuvant or adjuvant treatment. In that case apples and kumquats are the same. Bingo yes to all of them, but tell me about how bad are the side effects of ADT if the cancer kills the patient prematurely? These studies and others should not be ignored and recognized for their potential survival benefit. The question then is to decide based on the individual parameters of each case. The case in question here is Laurel's Steve.
At the end of your post you said:
> 3. Certainly ADT pts have a better QOL on ADT now than yesterday, or > last year, or five years ago. But thousands still run screaming from it, > shouting "Give me QOL or give me death", so to speak, according to the > most current studies I've seen. Please provide those references. More so for patients in Steve's age bracket of 45 to 55 years. I like to know how many of those cases are willing to put QOL above life itself.
BTW, you said:
>My latest data points are this from way back on Mar 23, '06 [ > http://psa-rising.com/blog/index.php/2006/03/26/limitations-of-hormonal-blockade -for->localized-prostate-cancer/ RV>++++++> I quote from the blog: "Without question, this remains the gold-standard front-line treatment for metastatic prostate cancer," Beer said." To paraphrase you: Bingo!
RalphV
I.P. Freely - 13 Apr 2006 01:02 GMT > The SEs of ADT are not different for neo-adjuvant or adjuvant > treatment. In that case apples and kumquats are the same. To my understanding, neo- runs for weeks or a few months only, incurring primarily ADT's acute/short-term SEs. Adjuvant runs years -- if we're lucky -- incurring both acute and chronic SEs.
> how bad are the side effects of ADT if > the cancer kills the patient prematurely? Pretty dang bad, if he incurred the SEs but not the benefit. It's all in the specifics of each case.
> At the end of your post I.P. said: >> 3. Certainly ADT pts have a better QOL on ADT now than yesterday, or [quoted text clipped - 5 lines] > bracket of 45 to 55 years. I like to know how many of those cases are > willing to put QOL above life itself. References will take a while. I've discussed this here in the past with references, can't readily find the posts or the specific references to the QOL studies, and don't have time to dig 'em up right now (I'm beginning to fear I lost that HUGE file of data when I had HD problems last February). But you'll find many such references by Googling such key words as prostate hormone QOL. Some studies are clinical, others involved pts asked to rate their willingness to accept specific SEs, others were discussions among oncology panelists, some of whom have PC. (One PC pt/physician/panelist aborted adjuvant ADT because his SEs were flat intolerable).
> BTW, you said: >> My latest data points are this from way back on Mar 23, '06 [ [quoted text clipped - 4 lines] > treatment for metastatic prostate cancer," Beer said." > To paraphrase you: Bingo! You've lost me completely now. The blog quote that was the gist of the article was "But that is probably a pipe dream, Oregon Health & Science Uni
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