 |
 | Home | Contact Us | FAQ | Search & Site Map | Link to Us |
 | Sign In | Join | Other 45 Sites in Network |
Medical Forum / Diseases and Disorders / Prostate Cancer / April 2008Intermittent Hormone Therapy
Let me get right to the point: by the docs standards, I don't qualify. PSA was too high pre op (15), and too high post op (1.37), and has mets to the lymphs (pre op) as well. Nonetheless, I started Casodex for a couple of weeks, followed by the ubiquitous shot of Lupron. I insisted on a 30 day dose in case I experienced any unacceptable SE...thankfully there have been none, as yet. At the end of my 30 days, I would like to go back on 50 mg. casodex daily for a month, then get another 30 day Lupron, and so on. I know this is not a standard therapy, but isn't the alternative to stay on permanent hormone therapy until the pca becomes refractory (I was told probably 2 years at most)? So why not "enjoy" being off Lupron every other month for, most likely, the same two years (before chemo will be needed)? All scans have been clean. > Let me get right to the point: by the docs standards, I don't > qualify. I'll get right to the point, too. Is the doc a urologist? If so, he is not likely to be one of the few uros who are trained in use of ADT. I'f recommend consulting a genuine cancer specialist, a medical oncologist; preferably one who is educated in treatment (tx) of prostate cancer (PCa). Here is a portal to a list of some PCa specialists: http://www.prostate-cancer.org/resource/find-a-physician.html > PSA was too high pre op (15), and too high post op (1.37), > and has mets to the lymphs (pre op) as well. Nonetheless, I started > Casodex for a couple of weeks, followed by the ubiquitous shot of > Lupron. I insisted on a 30 day dose in case I experienced any > unacceptable SE...thankfully there have been none, as yet. According to Strum and others, the best means of use for Lupron, Trelstar and Zoladex is a 28-day cycle. Reason: different men metabolize the med at different rates. The 28-day cycle assures as well as possible an effective and level dose. Longer cycles appear to me to be motivated by convenience, not clinical effectiveness. > At the end of my 30 days, I would like to go back on 50 mg. casodex > daily for a month, then get another 30 day Lupron, and so on. > I know this is not a standard therapy, but isn't the alternative to > stay on permanent hormone therapy until the pca becomes refractory (I > was told probably 2 years at most)? Briefly, no. Strum and others recommend achieving an undetectable level of PSA (=/< 0.05 ng/mL) and maintaining that level for at least a year. Then, one can suspend ADT until a pre-selected point, then restart. Avodart is recommended for the "off" period. They also recommend at least "triple blockade" using an LHRH agonist such as Lupron, Casodex, and Avodart. This permits a "vacation" from the side effects (SEs) of the LHRH agonists such as Lupron, and likely also extends the the time to a refractory state. See http://www.prostate-cancer.org/education/andeprv/Strum_IADT.html Regards, Steve J > Let me get right to the point: by the docs standards, I don't > qualify. PSA was too high pre op (15), and too high post op (1.37), [quoted text clipped - 10 lines] > likely, the same two years (before chemo will be needed)? > All scans have been clean. I can't really imagine a practical scenario in which I would invent my own IADT regimen. To outguess a consensus of several consulted med oncs I'd have to: 1. Believe I know more than they do about IADT, which I doubt is likely, or even possible, for a layman. 2. Encounter minimal SEs, mostly manageable with safe meds. 3. Believe, based on extensive research, I was doing little to no harm. 4. Believe, based on extensive research, I was doing appreciable good by some important criteria. 5. Receive some nods of agreement from the med oncs I consulted. OTOH, I did propose my own PC management protocol to a broad team of oncs, but it did pass or exceed all those criteria and more with very slight modifications and it tried to stay in better-defined territory than IADT. I.P. > > Let me get right to the point: �by the docs standards, I don't > > qualify. �PSA was too high pre op (15), and too high post op (1.37), [quoted text clipped - 28 lines] > > I.P. Steve, I do have a med onc. and she is taking over. I don't see the urologist anymore unless I have a urinary issue, which I don't. She is the one who convinced me to start casodex/lupron...she called it the "gold standard" of treatment for my stage of pca. She doesn't see radiation of any kind nor chemo at this stage as being helpful. I suppose I will just continue it uninterrupted until/unless SE become troublesome, like I've heard by some. Fortunately, my inital trial is side effect free, but it's only been a little while. I'm tired, frankly, of second guessing all the doctors.....I think I'll let this oncologist call the shots and see where it leads....she's part of a team at the Dana Farber Cancer Institute so who am I to think she doesn't know what she's doing? I think second guessing and trying to become an expert on this...even though it's encouraged...wears me down more than the treatment itself..and may even delay important decisions, so I'll stick with it and cross my fingers. > I think second guessing and trying to become an expert on this...even > though it's encouraged...wears me down more than the treatment > itself..and may even delay important decisions If I've given the impression that I think we should strive for, achieve, or claim PC expertise superior to that of a good oncologist, I've unintentionally overstated my position on the objective, and apologize. What I've meant to say is that most of us will benefit from knowing a great deal about PC and its treatments ... enough to recognize BS (e.g. 100% promise of ANYTHING), enough to ask many relevant questions, to spot oncs in too much of a hurry, to make treatment decisions based on many authoritative sources including our oncs, to understand that there are options --- including letting the doctor run the whole show or telling her, "No, thanks" -- at every stage right up to the point our hearts stop beating. What we must do, what no doctor can do for us, is become the world's leading expert on our own priorities, even if Priority Number One emerges as, "I flat don't want to do any more thinking; the ball, the whistle, the yardstick, and the scorecard are in the doctor's hands." Doctors' first three priorities by law, oath, and mindset are heartbeat, heartbeat, and heartbeat, in that order, but I can think of several more important parameters *in my case*. My research of PC and its treatments would have not by itself motivated or justified my secondary treatment decisions. Coupled with my identification and analysis of my own priorities, however, the whole collection of facts, logic, and opinions was sufficient to define my course of action. I was very pleasantly surprised, and my conviction reinforced, when my gaggle of oncs agreed with both my PC facts and my course of action. Rather than wear me down, and because it led to consensus among me and the experts, the process boosted my spirits. Had the process diverged rather than zeroed in to a common point, it probably WOULD have worn me down. I.P. On April 23, "skeptic" replied to me: > Steve, I do have a med onc. and she is taking over. I don't see the > urologist anymore unless I have a urinary issue, which I don't. > She is the one who convinced me to start casodex/lupron...she called > it the "gold standard" of treatment for my stage of pca. > She doesn't see radiation of any kind nor chemo at this stage as being > helpful. Sounds a bit like my med onc, who is also a she. And thoroughly dedicated, too. > I suppose I will just continue it uninterrupted until/unless SE become > troublesome, like I've heard by some. There's a lot that can be done to alleviate SEs of ADT. I did it. > Fortunately, my inital trial is side effect free, but it's only been a > little while. Good! But don't throw in the towel too soon. > I'm tired, frankly, of second guessing all the doctors.....I think > I'll let this oncologist call the shots and see where it [quoted text clipped - 4 lines] > itself..and may even delay important decisions, so I'll stick with it > and cross my fingers. My PCP has accused me of being "obsessed" 'cuz I spend so much time on this. I told him that being informed that you're going to be shot at dawn tomorrow does tend to concentrate your attention and I have no apology. I don't think of it a second-guessing. Rather, it's learning about the disease at least to the extent that I can discuss it with her and understand what she's saying, too. I've also been helpful to her. Frex, I gave her a copy of a paper comparing Avodart with Proscar. As a result, she now prescribes Avodart instead of Proscar. Sent me a thank-you note, which was nice. Best, Steve J "My PCP has accused me of being "obsessed" 'cuz I spend so much time on this. " I'd tell your PCP to take a flying leap. -Les > "My PCP has accused me of being "obsessed" 'cuz I spend so much time > on > this. " > > I'd tell your PCP to take a flying leap. PCP, darn straight. Mine increased by 1,000% the odds my PC will kill me by ignoring my rising PSA for years, and we've seen much indication here that his level of competence is not uncommon. But when my onc/ professor/ researcher told me it's time for me to take a break until we see indication of relapse, I paid attention. I.P. Skeptic, I'm glad that you've got a good med onc and are following her advice. The issues in hormone therapy are complex and, as others have pointed out, not the kinds of things that are likely to be successfully addressed by ad hoc approaches. As to how long it will work for you, that's impossible to say. Steve Kramer has been on it for 5 years now and still has an undetectable PSA. I think the statistics for how long HT works include men who weren't diagnosed until they already had a PSA in the hundreds. Though even with them, it is sometimes possible to go into remission for a pretty long time. There was one guy we discussed recently who had a PSA=4900 about five years ago and he hasn't died yet. You're going to have some side effects, but they don't have to rule your life. You can get treatments to ameliorate them, and you can live with what's left. Life can still be very good. Alan Thanks for some sensible and helpful replies. > You're going to have some side effects, but they don't have to > rule your life. You can get treatments to ameliorate them, and > you can live with what's left. Life can still be very good. About the only virtually guaranteed and tough to mitigate SEs are fatigue and reduced sex drive. How strong those effects are is variable, and their impact is highly personal. People with sedentary lives may not notice the fatigue too severely; its biggest losers may be people with highly active lives, which even the experts and their literature say will take a real hit. People whose sex lives are already diminishing (or who have no sexual partner in their lives) may not care that sex will be about as interesting as Chris McBorner when on ADT. I.P. Don't ask; I invented "Chris McBorner" to make my point. > ... > About the only virtually guaranteed and tough to mitigate SEs [quoted text clipped - 10 lines] > > Don't ask; I invented "Chris McBorner" to make my point. I'd like to comment on sedentary vs. active lives. I think very sedentary people will actually suffer more than anyone else from fatigue. If they're already out of shape and do no exercise, they're going to get worse under ADT, possibly to the point of impacting ordinary daily life. People who are highly active will probably find that they can't continue to play the same sports effectively, but if they exercise regularly, most of them will at least have plenty of energy for daily living and will still be able to be moderately active. There are exceptions of course - people who can still play high energy sports and people who, despite attempts at exercise, will be debilitated by ADT. As for sex, people who can't have it for other reasons in their lives may find the lack of testosterone a relief. Socrates was quoted in one of Plato's dialogs as saying that it was a relief to get older and not be bothered by sexual desire any more. He wanted to invest his energy in learning. I guess that shows I'm not as smart as Socrates :) Alan My interest in not staying on Lupron any longer than necessary was more out of concern of developing gynecomastia. I can handle the other side effects, in a positive way, if they occur. Is radiation to the breasts still used as a prevention of gynecomastia? Has anyone undergone it? I read it is somewhat of a benign treatment and doctors are surprised more men don't opt for it...though it hasn't even been brought up yet by my med. onc. > My interest in not staying on Lupron any longer than necessary was > more out of concern of developing gynecomastia. I can handle the [quoted text clipped - 5 lines] > more men don't opt for it...though it hasn't even been brought up yet > by my med. onc. I had thought that gynecomastia is more associated with Casodex than with Lupron. See for example: http://www.chemocare.com/bio/lupron_depot.asp and http://www.chemocare.com/bio/casodex.asp Also, there is another treatment besides radiation. See: http://www.prostate-cancer.org/education/andeprv/AntiAndrogen_Monotherapy.html Search for "gynecomastia" on those pages. > My interest in not staying on Lupron any longer than necessary was > more out of concern of developing gynecomastia. I can handle the [quoted text clipped - 5 lines] > more men don't opt for it...though it hasn't even been brought up yet > by my med. onc. Everything I"ve read about it says get irradiated before going on ADT. I would not accept advice from any doctor who did not explain that problem and option before my first dose of ADT. I'm surprised your top SE concern is gynaecomastia, especially since it's preventable, but then my docs were surprised that impotence was not my top concern. Just goes to show that everyone is different in both responses to and concerns about PC treatments. I.P. > I'd like to comment on sedentary vs. active lives. > > I think very sedentary people will actually suffer more than > anyone else from fatigue. If they're already out of shape and do > no exercise, they're going to get worse under ADT, possibly to > the point of impacting ordinary daily life. I'm sure that applies in many cases. We've seen it go both ways in our group ... dedicated couch potatoes who hardly noticed their fatigue because they never did anything physically demanding anyway, and others who, as you say, became physically impaired when their slight energy reserves were eradicated. > People who are highly active will probably find that they can't > continue to play the same sports effectively, but if they > exercise regularly, most of them will at least have plenty of > energy for daily living and will still be able to be moderately > active. "Moderately active" for some people equates to "devastated", as in screw the treatment until it improves, rather than degrades, my life. I know many people who would not even dream of voluntarily giving up a few years at their sport to add months, even a year, to their lives. One friend had no hip joints left; his orthos did not understand how he could walk, let alone snowboard, windsurf, and mountain bike at competitive levels and hunt pheasant all season long. He accepted hip replacement only when his hips would not hold him up anymore. I can guarantee he would not accept ADT until his skeleton was no longer functional. How did he do it? Guts, obsession, and lots of pot. I.P. ... > "Moderately active" for some people equates to "devastated", as > in screw the treatment until it improves, rather than degrades, > my life. I know many people who would not even dream of > voluntarily giving up a few years at their sport to add months, > even a year, to their lives. ... I know that you're absolutely right about this. Nevertheless, one of the things we can try to do is find ways to sublimate our needs into other avenues. I have a brother-in-law who was obsessed with basketball. By the time he got into his mid-40's, a combination of age and accumulated injuries made it more and more difficult for him to play at the level he was accustomed to, and to keep up with the kids that made up all the teams in his league. So he took up golf. I don't know if it is as satisfying to him as basketball was, but I do know he's out there on the golf course every weekend, playing, planning golf vacations, competing hard, and so on. I know another guy who took up sailing. He races Sunfish which are cheap one man boats that have world class competition. The physical demands of sports like golf and sailing are much less than basketball, skiing, biking, and so on, but you're still outdoors, still working on skills, and if it's competition that you crave, you can get all that you can handle. So, if ADT pushes you off the basketball court or the mountain bike trails, you don't have to just go home and be miserable. There are lots of ways to skin that cat. Alan >> "Moderately active" for some people equates to "devastated", as >> in screw the treatment until it improves, rather than degrades, >> my life. I know many people who would not even dream of >> voluntarily giving up a few years at their sport to add months, >> even a year, to their lives. > I know that you're absolutely right about this. Nevertheless, > one of the things we can try to do is find ways to sublimate our [quoted text clipped - 6 lines] > > So he took up golf ... [another] took up sailing. > So, if ADT pushes you off the basketball court or the mountain > bike trails, you don't have to just go home and be miserable. > There are lots of ways to skin that cat. As much as I worry about and try to delay concessions to age, I must admit that I once thought I'd give up cross-country motorcycle racing only when the cold dead hands issue surfaced, but in fact I gave it up when the injuries consumed too much healing time. My replacement sport provides most of the adrenaline rush with almost no risk of injury, so once again the cold dead hands mantra arises. I can only hope I live long enough to be forced once again to downgrade my excitement levels, but it won't be for something as debatable as optional ADT. Maybe when I need help dragging my gear down to the water ... oops, I've already been there, done that, whenever my back "goes out" and I can't stand up, and shortly after intracranial inner ear surgery left me too dizzy to walk. Let me try to put this back in the realm of Skeptic's original question: "Why not "enjoy" being off Lupron every other month for, most likely, the same two years (before chemo will be needed)?" Because it takes months to recover from ADT SEs, so you'll hardly notice your alternating months off ADT. Whatever you give up ON ADT, you'll give up much of it while OFF ADT, so you might be taking most of the QOL hit for much less of the ADT benefit. That tradeoff may take some serious research and consultation, and may still be primarily conjecture. Whether or not research answers that question, an equally important question may be, "Is the benefit of month-on/month-off IADT worth whatever QOL impact it has on you?" I.P. > >> "Moderately active" for some people equates to "devastated", as > >> in screw the treatment until it improves, rather than degrades, [quoted text clipped - 42 lines] > > - Show quoted text - My thoughts on this are influenced partly by my approach to other drugs. For example, I take ambien to help sleep...but I know that it will become habit forming if taken every night, so I take it every other night, or sometimes two nights, then none for three nights, etc. and have no dependence. Same thing with pain meds....off and on, never continuous. Obviously, I can't compare having cancer to not getting a good nights sleep, but since there seem to be equal opinions of starting HT immediately, or wait until symptoms appear, or go on it intermittently, why not every other month? Especially since there seem to be studies that suggest there are minimal long term benefits vs. no HT anyway. Anyway, just exploring my perhaps flawed thinking. I haven't experienced any SE at all just yet, so I am referring more to a time when SE may appear...go off for a month or two to let the SE subside (a little), then go back on. I don't know....just rambling i guess. I'll probably get freaked out if my psa rises and just stay on them :( I'll be starting to go to a support group next week and hopefully get a better perspective. > Obviously, I can't compare having cancer to not getting a good nights > sleep Not directly, but sleep loss was a big early negative in my 28-day ADT trial. I get too hot most nights without ADT, costing me a great deal of sleep. The very mild hot flashes revealed in just those four weeks exacerbated that problem quickly, and chronic sleep loss (anything under about 8 hours a night for most people) wreaks havoc with our health. > why not every other month? No one has proved that shooting yourself in the prostate with a .22 revolver will not cure PC, either. Why not try that? Oh, I know ... it may not help and is highly likely to have SEs ... just like month on/month off ADT. OTOH, if your experimentation with ADT keeps revealing minimal SEs (presuming you're testing for the sneaky ones like osteoporosis and diabetes), maybe some normal ADT regimen is the way to go. But inventing your own ADT regimen sounds almost foolish to some of us, given how debatable even the standard regimens are. I.P. > No one has proved that shooting yourself in the prostate with a .22 > revolver will not cure PC, either. Why not try that? However, if you shoot yourself in the prostate with a 12 gauge shotgun, you have a pretty good chance of not dying from prostate cancer. My thoughts on this are influenced partly by my approach to other drugs. For example, I take ambien to help sleep...but I know that it will become habit forming if taken every night, so I take it every other night, or sometimes two nights, then none for three nights, etc. and have no dependence. Same thing with pain meds....off and on, never continuous. Obviously, I can't compare having cancer to not getting a good nights sleep, but since there seem to be equal opinions of starting HT immediately, or wait until symptoms appear, or go on it intermittently, why not every other month? Especially since there seem to be studies that suggest there are minimal long term benefits vs. no HT anyway. ==> I would not say there are equal opinions of starting HT immediately or waiting for symptoms. I would agree that you cannot compare possible addiction with possible damage. And there are studies that seem to suggest that early, aggressive therapy does help in the long run. However, if you get by these three issues, it is still your right to play around with ADT. Just because no one else is doing it doesn't mean it will not work to lengthen your life and improve your quality of life. Just remember you are going against every model currently being used in medicine. If you do it, I would keep very detailed records; they may be important to medicine some day.  SignaturePSA 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 PSAD 0.19 years EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 PSAD .056 years Lupron 07/03 (1 mo) 8/03 and every 4 months there after PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.4 years Casodex added daily 07/06 PSA <0.04, <0.05, <0.04, <0.04, <0.1 2/12/08 Non Illegitimi Carborundum >> I'd like to comment on sedentary vs. active lives. >> [quoted text clipped - 8 lines] > who, as you say, became physically impaired when their slight energy > reserves were eradicated. We've also seen people who have had little noticable fatigue; often those who were active. Of those who were most active, we've seen most lose a step (or three) but are still active. Then, we've seen people who, like me, became somewhat of a couch potatoe for a decade and then took up activity in order to counteract the effects of surgery, radiation, ADT, and cancer. I spend more time on exercise each week than at any other time in my life, except maybe when I was playing basketball in my teens or softball in my 20s and 30s -- probably even then. SignaturePSA 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 PSAD 0.19 years EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 PSAD .056 years Lupron 07/03 (1 mo) 8/03 and every 4 months there after PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.4 years Casodex added daily 07/06 PSA <0.04, <0.05, <0.04, <0.04, <0.1 2/12/08 Non Illegitimi Carborundum I will let others offer opinions about your treatment protocol. I will say that the two years predictions for hormone refractory status is bullshit. And if the doctors you consult are treating you with that anticipation, they are ignorant, willfully. I have been on Lupron/Eligard for 4 years; even started a six month chemo right away the minute that I showed up 2 mets (chemo destroyed the mets!). I have spend that last 3 1/2 years undetectible. 2 1/2 years ago I withdrew from casodex. Don't listen to the winds of refractive in two years. Keep on kicking the bastard down. Gourd Dancer > Let me get right to the point: by the docs standards, I don't > qualify. PSA was too high pre op (15), and too high post op (1.37), [quoted text clipped - 10 lines] > likely, the same two years (before chemo will be needed)? > All scans have been clean. > but isn't the alternative to > stay on permanent hormone therapy until the pca becomes refractory (I > was told probably 2 years at most)? That's just pure nonsense! Read my signature. July 2003 ADT1. July 2006 ADT2. Almost two years later, my PSA is undetectible still. > So why not "enjoy" being off Lupron every other month for, most > likely, the same two years (before chemo will be needed)? So, why not "enjoy" the possibility of living long enough to see the cure rather than dabbling around with your ADT? SignaturePSA 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 PSAD 0.19 years EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 PSAD .056 years Lupron 07/03 (1 mo) 8/03 and every 4 months there after PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.4 years Casodex added daily 07/06 PSA <0.04, <0.05, <0.04, <0.04, <0.1 2/12/08 Non Illegitimi Carborundum |
Reply to this Message |
 Sign In
 Join
 My Latest Posts My Monitored Threads My Blog My Photo Gallery My Profile My Homepage Start New Thread Enable EMail Alerts Rate this Thread
|
©2008 Advenet LLC Privacy Policy - Terms of Use
This website includes both content owned or controlled by Advenet as well as content owned or controlled by third parties.