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Medical Forum / Diseases and Disorders / Prostate Cancer / November 2007To Sy
No one wants a pissing contest with you. Most of the men out here have been here for quite a while. Most have been treated by one form or another. Many are experiencing undetectable PSA's but others are fighting the beast hoping to buy enough time to watch their daughter graduate from college, to survive until retirement in order to protect the QOL for a wife who is dependent upon her husband, or to do a few special things before leaving this world. Name calling is useless and completely uncalled for in any forum! The men and women are here to help. We all supported Martin and watched him slowly die. He stood up for his principles and it cost him his life. Martin had a marvelous sense of humor and although we felt he was making a grave mistake (no pun intended) we were all here for him. He was a fascinating character and well educated. He had plenty of literature to support his decision and his "treatment". Almost anything can be backed up by literature or studies done someplace. Choosing to postpone treatment tends to send shivers up the spines of most us out here. Your PSA has already doubled and that should tell you that it is progressing. That alone to most of us is a big red flag! Cancer doesn't move in a straight line, it expands exponentially. My husbands PSA was 5.1 on his first PSA test. We have no idea how long he'd had the cancer growing in his prostate. Then because we didn't know anything about PC and no one mentioned cancer, another year went by before we even had a biopsy performed and another PSA test. We were lucky as the second PSA test done a year later was 4.9. His was obviously the slow growing cancer. Then it was almost 5 months before treatment was started. We will never know if he could have waited another two years before being treated. Maybe he could have avoided all treatment because his life was unexpectedly cut short. No one has a crystal ball. No one knows what is going to happen five years from now. I can tell you that when my husband died they specifically looked for PC cells in his body and found none! I would have preferred to have another 20 years of PSA tests and to have crossed fingers and held my breath over each one. If you want to do WW or AS then that is your choice. No one here is going to make you change your mind. The vast majority of us will not support your decision. So please don't whine when you discover that your PSA has doubled or tripled along with your Gleason. It's pointless to close the barn door when the animals have escaped. You are obviously an intelligent man. Most everyone is trying to tell you to rethink your position. You're not 85 and already in a nursing home! Don't wait forever or until it's too late. Drink the juices and eat plenty of cooked tomatoes. Get plenty of exercise and lose the extra pounds if you have them. Take your vitamins. Make yourself as healthy as you can so that you can enter whatever treatment you choose with the best possible odds. I truly wish you luck. You're going to need it. Bev [[ This message was both posted and mailed: see the "To," "Cc," and "Newsgroups" headers for details. ]] Beverly, Thank you for taking the time to draft your reply. I think you make some good points. However, it kind of boils down to this: Despite the useful information and experiences which are shared here do you REALLY think I should ignore the advice of my very experienced Urologist Oncologist and other Physicians I've seen and go under the "care" of the alt.support.cancer.prostate Newgroup? It certainly would be less expensive not to mention I could make "office visits" from my desk. Now that's Healthcare for ya! As to the continuous backhanded "support" offered here how about: "I truly wish you luck. You're going to need it". or "please don't whine when you discover that your PSA has doubled or tripled along with your Gleason. It's pointless to close the barn door when the animals have escaped". That's touching. I was just going to make another point regarding my diagnostic findings but then decided against it inasmuch as all the Board Certified Urologist-Oncologists with 25+ years of Clinical experience here will fly out of the woodwork to show off their expertise and their ability to type pollysyllabic verbiage. As someone mentioned in a posting of yesterday, lots of people are "heavily invested" in the treatment path they have already chosen and the notion of "active surveillance" is somehow threatening if not actually galling. As you said yourself "Choosing to postpone treatment tends to send shivers up the spines of most us out here". You said it better than I ever could I don't want my decison to be based upon an emotional reaction like "shivers" but on prudent and experienced medical judgement. Sy > No one wants a pissing contest with you. Most of the men out here have been > here for quite a while. Most have been treated by one form or another. Many [quoted text clipped - 48 lines] > I truly wish you luck. You're going to need it. > Bev Sy, Your experience here is similar to that of a fellow PCa victim named James Quinn who asked this group if anyone knew about the Leonardis Clinic in Germany, a clinic that offers treatment to advanced cancer patients using more unorthodox chemo cocktail treatments than what are commonly offered here and I suppose a few of which are not available here at all. They claim a 70% remission rate vs. a more typical rate of less than half that for similarly advanced cancers with more traditional methods. James had a PSA of over 1000 and he was dying of metastatic cancer. He had been through trials and every other treatment available with no success and figured correctly he had nothing to lose. You can well imagine the majority of responses to his post, among them Quackery - Waste of money - Foolish. This, for a clinic that regularly participates in German health care trials not to mention American NIH sponsored trials as well. Even if there were some degree of quackery, James, as mentioned earlier, had absolutely nothing to lose and besides, we're not talking about a clinic on a back alley in some Mexican border town. James was all set to go inspite of the responses but unfortunately, James' health took a major turn for the worse which precluded his making the trip and he died soon after. Considering the desperation of his situation I was surprised at the responses he received - only a very few offered "go for it." Dave Perry > [[ This message was both posted and mailed: see > the "To," "Cc," and "Newsgroups" headers for details. ]] [quoted text clipped - 95 lines] > > - Show quoted text - I think all the men (and their loved ones) have made the decision that was right for them. No matter what that decision was, it HAD to be right or the what if's would drive them crazy. You have to know in your heart and in your gut that the decision you made was the right one. Period. No second guessing. Having said that, I'm just glad hubby and I didn't make the watchful waiting decision. It was discussed but neither one of us could stand the thought of an active cancer growing inside Larry's body. I mean, it's cancer. We only had one thought .... get it out. Sy, the best of luck to you. We hope it turns out okay. And as I said ... if you know in your heart and in your gut that the WW approach is the right one for you, then it will be. Jean & Larry [[ This message was both posted and mailed: see the "To," "Cc," and "Newsgroups" headers for details. ]] Hi Dave, I don't believe in "alternative" therapies or other non-mainstream baloney. I am scientifically trained and am a skeptic by nature. And yes I agree with what you say that I'm probably getting much the same kind of responses as James even though my situation and mindset could not be more different. Thanks, Sy > Sy, > [quoted text clipped - 135 lines] > > > > - Show quoted text - Sy, I'm curious, is a "skeptic by nature" one who is born that way? I too am "scientifically trained" and a skeptic as well but all my skepticism has developed from a lifetime of listening to quite a number of supposedly knowledgeable individuals including politicians, doctors, priests, scientists, economists, lawyers among others make total jackasses of themselves. Dave Perry > Hi Dave, > [quoted text clipped - 8 lines] > > Sy > However, it kind of boils down to this: > > Despite the useful information and experiences which are shared here do > you REALLY think I should ignore the advice of my very experienced > Urologist Oncologist and other Physicians I've seen and go under the > "care" of the alt.support.cancer.prostate Newgroup? I can answer this. Absolutely not! However, according to your earlier posts, they did not advise you to wait. I am not trying to change your mind. But, to be fair to others coming here for support, accuracy is important. Your physicians suggested treatment and you asked them for a temporary pass. We certainly would want another newbie to think that watchful waiting is a recommended alternative for a 59-year-old man with curable cancer. SRK No physician today in the free world is going to force you to have treatment. If you want to wait then they will allow you to wait. Most doctors today will lay out all the options including WW. No one here is telling you to ignore your doctors. No one here is trying to be a cyberdoc. But in my wildest dreams I can't imagine a uro-onc telling you that PC does not need to be treated and treated early, especially when early detection makes a huge difference in success. You are playing Russian Roulette with your PC. Once it escapes the prostate the only thing they can do is attempt to slow its progression. You could be fine for a year, two years, or six years and then discover your PSA has tripled. It could also happen three weeks (probably not) from now. There are several men out here who discovered they had PC with low numbers and only a tiny percentage of positive cores. They sought treatment only to find that their cancer had already escaped. There are those with higher numbers that were treated and are pulling undetectable PSA's. It's all a crap shoot. But if you're going to play the game (and you are in it whether you like it or not) you should play with as many odds in your favor as you can. Is there some reason that you want to avoid treatment? Is there another medical condition that you are battling? Is there an underlying fear of what is going to happen during treatment or a fear of hospitals? Is there something you want to do first before you are treated? For all we know you could have a drop-dead gorgeous, 25 year old, natural blonde that you are marrying the first of January and you want to have children with her. Because what you are doing is a little like saying that you have gangrene in your big toe and you just want to watch it instead of treating it right away with a powerful antibiotic. No, we don't understand your decision. Bev > [[ This message was both posted and mailed: see > the "To," "Cc," and "Newsgroups" headers for details. ]] [quoted text clipped - 89 lines] > > I truly wish you luck. You're going to need it. > > Bev But in my wildest dreams I can't imagine a uro-onc telling > you that PC does not need to be treated and treated early, especially when > early detection makes a huge difference in success. Oh, I think there are entire programs set up to do just that. John Hopkins has such a program. And about early detection making a huge difference. I'm not sure there is lots of data, fairly analyzed that comes to a conclusion that there is a "huge difference" in "success" from doing various intervention treatment. Some benefit, sure, but a "huge difference" in outcomes? When I think huge, I tend to think in terms of words like "double" or "half". Looking over 30 years of data on treatment I don't think that is being achieved with treatment versus non treatment when you look at 100% of the population with PCa, especially when you consider the probable undiagnosed portion out there. We all know there is over treatment, we just don't know who is being over treated. > Is there some reason that you want to avoid treatment? Uh, I think there are many who would answer YES.. Due to the fairly substantial percentage of side effect QOL issues. > Because what you are doing is a little like saying that you have gangrene in > your big toe and you just want to watch it instead of treating it right away > with a powerful antibiotic. Well if there was a antibiotic that would cure the toe that might be one thing, but if I had to cut the toe off, I might want to watch it for a while. > Bev [[ This message was both posted and mailed: see the "To," "Cc," and "Newsgroups" headers for details. ]] Beverly, Why am I so important to you that you are essentially "demanding" that I give you my treatment decision down to the last neuron. I won't even give credibility to some of your nutty comments and conclusions by addressing them. What is it about you that is so all-knowing and insistent that someone's personal decision be justified to YOUR satisfaction? I don't know what else to say. These are some of the most bizarre replies I could have ever anticipated. Also, you know a lot less than you may think despite your efforts to purvey "The Truth". What you say boggles the mind. Sy > No physician today in the free world is going to force you to have > treatment. If you want to wait then they will allow you to wait. Most [quoted text clipped - 155 lines] > > > I truly wish you luck. You're going to need it. > > > Bev Beverly, Would you (or should I use the word "thou" to match your use of the pluralis majestatis?) please continue your very interesting exchange with Sy, as long as he bothers to respond to you? I am enjoying very much how you continue to ignore the rational arguments put forward by him, how you describe cancer as "a beast" lurking inside a patient (while I understood it's just a disease), how you can't stand it if someone makes a decision not purely based on emotions, yet totally ignore quality of life concerns. Are you by any chance deeply religious? [[ This message was both posted and mailed: see the "To," "Cc," and "Newsgroups" headers for details. ]] Hi Safire, I appreciate your supportive comments. Despite my tendency towards verbosity, you've said "it" better than I ever could. And, it's not just Beverly either. There is a definite "presence" of this same myopia "here". Sy > Beverly, > [quoted text clipped - 6 lines] > someone makes a decision not purely based on emotions, yet totally > ignore quality of life concerns. Are you by any chance deeply religious? Sorry, but I have failed to see anything rational in his proposal. I've watched several men out here go with WW for a variety of reasons. Taking time to research treatments and interviewing several doctors is always an accepted practice. WW is quite acceptable when other health issues are at the forefront. And doing absolutely nothing is just fine too. The 89-year-old man whose body is wearing out doesn't need treatment. He just needs to be kept comfortable in his final years. But for someone younger to ignore, pard' me use WW with, a known doubling PSA is placing himself in jeopardy. Facing PC with all it ramifications is difficult even for the most stalwart man. Fear, panic, and several other emotions are quite normal when a man discovers he has PC. The object is survival and at what cost? I never once heard the man give a real reason for WW. (Did I miss something in a post?) It seemed to be more of a situation of not liking the various options without fully exploring all the options. I did ask Sy if he had a valid reason for avoiding treatment. He never answered the question. The fear of losing erectile function is enough to make most men doubt that the cure is worth the treatment. But I never even heard that argument put forth. Most men don't like to talk about it and maybe with the number of females out here it might make some men clam up on the subject. Over the years I've seen more men talk about it openly and are happy to have the female input on the subject. I will admit it was one of the first things out of my husband's mouth after he said that we couldn't afford to treat his cancer. And the third thing was that my husband said was that he wasn't going to chance having to wear diapers for the rest of his life. Valid fears/excuses/concerns are all things that can be addressed. QOL is very important for every man so each concern needs to be addressed. I know one man who as already said if he ever gets PC he will not treat it because he refuses to face life with possible ED and lack of ejaculate. Yes, I do have a problem with that attitude, as there is more to life than a hard weenie. I concede it is an important part of a man's life, but life should not revolve one small pleasure. Concern over erectile function to me is more of an emotional response than a true QOL issue. Especially when there is so much available today to help a man with ED and orgasm has nothing to do with erection. Referencing advanced PC as "the beast" is not uncommon. I believed the men battling advanced PC have coined it and they refer to themselves as warriors. So please go right ahead and accuse me of using the perfectly acceptable term of "beast" for cancer of the prostate. According to the medical dictionary referring to cancer as a disease appears to be a bit of a stretch. Cancer is not an etiologic agent, its signs and symptoms are too varied to classify without a biopsy, and it is never consistent with its anatomic alterations. It is not a bacteria, virus, spore or fungus. (Etiologic agents) So it's not really a disease. It's cancer! Please check the Stedman Medical Dictionary listings below. Emotions always play a part in any treatment decision, but to toss aside medical facts is insane. Yet you accuse me of basing medical treatment on emotions? You wrote, "how you can't stand it if someone makes a decision not purely based on emotions, yet totally ignore quality of life concerns." Excuse me? I have never advocated such nonsense! I have openly said that many men have an out-out-damn-spot attitude towards their cancer and for the most part those men chose surgery. I'd describe that as emotional response! Albeit, it is a completely understandable response under the circumstances. Coarsely speaking there are two basic treatments for PC, slash (RP) or burn (radiation). There are proponents for each out here as both types have a myriad of variations. I have joking referred to the choices as being chocolate or vanilla and no matter which one anyone chooses they all tend to wind up as rocky roads. That just means that all treatments have SE and none ever seem to go as planned. You wrote "Are you by any chance deeply religious?" As for my religious beliefs, I fail to see how that would even factor into this discussion. O Great Pinus Pinea in the sacred woods, protect me from the Glyphosates so that I might one day join you as a rhododendron to spend eternity in glorious bloom under your protective boughs. May your straw leaves penetrate, cover, and protect me through the cold winters so that I will swell with many generously proportioned, firm, beautiful buds, and your male cones wash me in brilliant yellow pollen each spring,. Send up your phallus fairy rings to encircle and touch me during the fertile wet summers so that I will always be reminded of my status as a shrub. Bev PS: Okay, guys have fun with the symbolism in that last paragraph! There's so much bull in this thread that it needs a little humour! But I do hate when someone assumes that I've said something when I haven't, and then attempts to rake me over the coals when I have merely asked why they have taken such a stand, and asked that they rethink their position. As for the rest of my brothers and sisters out here, you know I'm here to support you in any way that I can. disease (di-z z ) 1. An interruption, cessation, or disorder of body function, system, or organ. Syn: illness, morbus, sickness 2. A morbid entity characterized usually by at least two of these criteria: recognized etiologic agent(s), identifiable group of signs and symptoms, or consistent anatomic alterations. 3. Literally, dis-ease, the opposite of ease, when something is wrong with a bodily function. 4. nosophobia, pathophobia. [Eng. dis- priv. + ease] cancer (CA) (kan ser) 1. General term frequently used to indicate any of various types of malignant neoplasms, most of which invade surrounding tissues, may metastasize to several sites, and are likely to recur after attempted removal and to cause death of the patient unless adequately treated; especially, any such carcinoma or sarcoma, but, in ordinary usage, especially the former. 2. cancerophobia, carcinophobia. [L. a crab, a cancer] > Beverly, > [quoted text clipped - 6 lines] > someone makes a decision not purely based on emotions, yet totally > ignore quality of life concerns. Are you by any chance deeply religious? Bev, I understand that you want to be supportive and helpful, but I don't think you realize that your statements about Watchful Waiting come across as deprecating and insulting. You say "WW is quite acceptable when other health issues are at the forefront," implying that is the only circumstance when in your view it is acceptable. You say it's OK for very old men whose bodies are wearing out, but anyone younger is putting himself in jeopardy with watchful waiting, which you equate with ignoring the cancer. And you suggest that the main motivations for choosing WW are fear, panic, and the desire to retain erectile function. Sy may not have given what you regard as a satisfactory reason for choosing Active Surveillance. And even he agrees that his writing style falls somewhere between annoying and pain-in-the-a.s. But in the course of the thread he started, I presented my reasons for electing to defer surgery or radiation. I noted that it's been two years since my diagnosis. I am in the care of a team of nationally-renowned prostate cancer specialists. I have PSA and DREs quarterly, and color doppler ultrasounds annually or more often. I take the usual supplements, eat more carefully, and take Proscar. My PSA is down by about 60%, as is the size of my prostate, and my medical professionals feel the cancer has remained indolent. I may have chosen a different way to manage my disease than, in your terms, slash or burn. But I feel I have not acted out of panic, fear or a fixation on maintaining erections. Nor do I think one can fairly categorize the approach I have taken as "ignoring" my disease. Alex > Sorry, but I have failed to see anything rational in his proposal. I've > watched several men out here go with WW for a variety of reasons. Taking [quoted text clipped - 136 lines] >> someone makes a decision not purely based on emotions, yet totally >> ignore quality of life concerns. Are you by any chance deeply religious? [[ This message was both posted and mailed: see the "To," "Cc," and "Newsgroups" headers for details. ]] Beverly, I took this group out of my list because of responses from people like yourself. I happened to take a look at your most recent post and you simply "don't get it". You haven't a clue despite your pretensions about what you think you understand. You are an ideologue of the worst sort and have no consideration or respect for an intelligent person's decision regarding what type of treatment or non-treatment to engage in. You DEMAND that this very personal decision be to your satisfaction and for your approval. Simply put you are an intolerant shrew. I think anyone who thinks you to be an "understanding and caring" person should reassess the matter. Sy n article <oXtVi.6441$R%4.3131@trnddc05>, Beverley <beverly.brown28@verizon.net> wrote: > Sorry, but I have failed to see anything rational in his proposal. I've > watched several men out here go with WW for a variety of reasons. Taking [quoted text clipped - 111 lines] > > someone makes a decision not purely based on emotions, yet totally > > ignore quality of life concerns. Are you by any chance deeply religious? > I happened to take a look at your most recent post and you simply > "don't get it". You haven't a clue despite your pretensions about what > you think you understand. > > I think anyone who thinks you to be an "understanding and caring" > person should reassess the matter. Sorry Sy, you're entitled to your opinion, but I couldn't disagree with you more on these comments. When I read Beverly's last post, my initial thought was "This lady's husband is one extremely lucky guy (except for the PC, of course)". I get the impression that she has an excellent understanding of the subject, and very much 'gets it'. I also sense that she is a very caring person that wants the best for her husband. As far as watchful waiting versus active treatment, I can see both sides of the argument. My initial reaction when I was diagnosed was to go the WW route. My thinking was much along the lines of those in Alex's post above. After doing the research and thinking it over (a lot), though, I came around to deciding to have radiation therapy, based on MY factors. I won't go into all of the pros and cons, I see that others have done so already at length in this newsgroup. I'm not taking sides on that -- everyone is entitled to make up their own minds. Like I said above, everyone is entitled to their opinions, but you need to remember that opinions are like a.sholes -- everybody has one, and no matter how attached you are to yours in particular, it's not really necessarily better than anyone else's. Common civility often sadly gets neglected in Usenet newsgroups, and maybe that's not a big deal in alt.fan.paris-hilton for example, but the people here are dealing with life-and-death issues for themselves and their loved ones -- issues that don't have black-and-white answers. So, why not try to remember that we're all in the same boat here, and keep the conversation helpful instead of curmudgeonly? Just my $0.02's worth. Moze Hi Moze, Thanks for your comments you do make some good points but maybe you should have followed this "thread" from it's inception. There are several others who responded to Beverly's heavy handedness and self-righteous attitude. If you read her earlier posts there is no tolerance from her for someone's personal treatment decisions. She challenges and demands that one explain and defend their treatment position. She doesn't ask, she lectures and hectors in a manner which is repugnant given the gravitas of what is involved in these matters. I am not a "name caller" by nature but she has been unfailingly mean spirited from the outset. Sy > > I happened to take a look at your most recent post and you simply > > "don't get it". You haven't a clue despite your pretensions about what [quoted text clipped - 36 lines] > > Moze > Beverly, > [quoted text clipped - 15 lines] > > Sy Sy -- I infer from the above that you have some reservations about the quality of Beverly's advice. (g) But don't be a shmuck and leave the group just because one or a few participants piss you off. We've got Steve K., Steve J., Leonard E. and a large bunch of others who have valuable insights and information. Would you stop going to a great group of PCa doctors because you didn't like the neighborhood in which their office was located? Ignore or giggle at what you don't like or agree with. But hang around for the good stuff. Alex > You are an ideologue of the worst sort and have no consideration or > respect for an intelligent person's decision regarding what type of > treatment or non-treatment to engage in. You DEMAND that this very > personal decision be to your satisfaction and for your approval. > Simply put you are an intolerant shrew. Sy, Why did you come back? I cannot figure out if you are merely evil, suffer from a borderline disorder, or if you are sometimes high/drunk and at other times pissed off at the world because of your addiction. In any case, I personally find you an unwelcome distraction. It takes a lot for me to kill-file anyone, but you have reached that point. Good-bye, Sy. If you really have cancer, I wish you luck and will pray for your cures. > Sy, > > Why did you come back? Do you own this newsgroup? > I cannot figure out if you are merely evil, suffer > from a borderline disorder, or if you are sometimes high/drunk and at other > times pissed off at the world because of your addiction. Are you a long distance psychiatrist? > Good-bye, Sy. If you really have cancer, I wish you luck and will pray for > your cures. Are you aware of any peer reviewed study showing that "praying" is effective against PCa? >What you're describing above is a false negative - there's cancer, but a needle biopsy didn't find it. As you say, it happens. > >Apologies if I confused the issue; I mentioned biopsies and the very rare false positives arising from them only to contrast their diagnostic utility with that of PSA testing. >> Sy, >> >> Why did you come back? > >Do you own this newsgroup? As you well know, this ng like most on usenet is unmoderated and anyone can be as unpleasant as they like, but notional proprietorial rights naturally go to those who go back furthest, who help most and - in Steve's case in particualr - archive the group. That said, one doesn't need to 'own' the group before the question becomes meaningful. Here, let me have a go. Why did you come back, Sy? >> I cannot figure out if you are merely evil, suffer >> from a borderline disorder, or if you are sometimes high/drunk and at other >> times pissed off at the world because of your addiction. > >Are you a long distance psychiatrist? A perfectly feasible practice, time-honoured by agony aunts. >> Good-bye, Sy. If you really have cancer, I wish you luck and will pray for >> your cures. > >Are you aware of any peer reviewed study showing that "praying" is >effective against PCa? Whether it is or not, I think you might be missing a subtext. >> Sy, >> >> Why did you come back? > > Do you own this newsgroup? No, Safire. I do not. I merely asked a question. It's an important question. It is clear he neither wants support or respects anyone's opinion. So his reappearance here must be for some nafarioius reason, don't you think? >> I cannot figure out if you are merely evil, suffer from a borderline >> disorder, or if you are sometimes high/drunk and at other times pissed >> off at the world because of your addiction. > > Are you a long distance psychiatrist? No. Perhaps if I were, I COULD figure it out. As is, I just can't figure it. My life experiences are not void of experiencing evil, addicts, or the mentally ill, but I just cannot figure this guy out. >> Good-bye, Sy. If you really have cancer, I wish you luck and will pray >> for your cures. > > Are you aware of any peer reviewed study showing that "praying" is > effective against PCa? No. After considered reflection, not only is there no study showing that, I don't even have a steadfast belief in it. I only know that we can pray for sustenance, that our trespasses will be forgiven, and that we will be kept safe from evil. Thank you for reminding me. BTW, do you have prostate cancer? I have seen you post here before, but not with any personal specifics. >> Are you aware of any peer reviewed study showing that "praying" is >> effective against PCa? > No. After considered reflection, not only is there no study showing that, > I don't even have a steadfast belief in it. I only know that we can pray > for sustenance, that our trespasses will be forgiven, and that we will be > kept safe from evil. Thank you for reminding me. Interestingly enough I did read a study about the effects of prayer and serious illness (not specifically prostate cancer). As I recall, the groups were: 1) folks nobody prayed for 2) folks that people prayed for but who weren't told they were doing so 3) folks that people prayed for and who were informed of that fact. Group 3 did far worse. The theory is that they experienced extra stress thinking that they MUST be really sick if strangers are resorting to prayer on their behalf. The other two groups had statistically indistinguishable results. I'll try to find the reference. and then there is this Another study on the benefit of a "positive attitude" concluded that, while it may make you a lot more pleasant to be around, a positive attitude does nothing to extend life. > I'll try to find the reference. Here it is: http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&dopt=AbstractPlu s&list_uids=16569567 >> I'll try to find the reference. > > Here it is: > > http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&dopt=AbstractPlu s&list_uids=16569567 And this is a link to a Times story about it: http://www.nytimes.com/2006/03/31/health/31pray.html The point is: Beverly's promise to pray for Sy really isn't very nice. > And this is a link to a Times story about it: > http://www.nytimes.com/2006/03/31/health/31pray.html > > The point is: Beverly's promise to pray for Sy really isn't very nice. No - her promise is very nice. It just isn't likely to make a positive difference for him. Pray? I don't pray, therefore I'd never say such a thing. I do believe someone else offered to pray for him. Bev <SNIP> > The point is: Beverly's promise to pray for Sy really isn't very nice. > Another study on the benefit of a "positive attitude" concluded that, > while it may make you a lot more pleasant to be around, a positive > attitude does nothing to extend life. I just learned this within the last week to ten days. I was surprised. Steve, I think the term one uses for the kind of behavior that has been demonstrated from his post is paranoid schizophrenia, ie; disorganized thinking, exhibits purposeless agitation and social isolation. Also,a lifetime prevalence of substance abuse is typically around 40% for this behavior problem. I take exception to the few that have labeled this person as intelligent. His vocabulary can easily be obtained through the game of scrabble. His use of words that are far from customary in an attempt to communicate suggest he is attempting to project an intelligent level that does not exist. His reference to Occam's Razor is another attempt to impress other posters. However, he wasn't familiar with the works of Anti-Razor Karl Menger. He tried to correct me by stating the correct spelling was Karl Menninger who happens to be a renown psychiatrist. This reference makes me wonder if he may have been a patient of his at one time. He has mentioned his medical team with the best minds in the business from some of the best cancer centers on the east coast that have advise him to start treatment for his cancer, but in his wisdom that obviously supersedes there expertise by a wide margin, he has chosen to watch and wait without any explanation or justification to support his decision. That's intelligence. Yes, he doesn't have to explain his behavior to anyone. So why did he come to this forum? Was it to try and muster up some support for his attack on the urologist that he felt scammed him. We only heard his side of the story and I'm sure the other side of the story would have been interesting to say the least. I noticed that from his first post to his last post that his paranoia towards people in general has been well documented in his continuous unprovoked attacks on people that are truly well intentioned. He doesn't see that his view is filtered by his rectal wall. So Sy, do everyone a favor and troll elsewhere. Ron S. Steve K and Ron.....thank you. I was totally irate at the rudeness of Sy towards Bev and was thisclose to letting fly, but you guys did it for me. Obviously this jerk is a troll and an arrogant ba**ard to boot. He has only one other post to a different group and you two had his substance abuse pegged correctly. Seems that about once a year we get some obnoxious type on here and they rile up the regulars. But as *Little Stevie Wonder* said, use your killfile. Cheers.....Heather (and Ron is doing just fine other than he can't seem to hear me talking.....old age or selective hearing??....grin) > Steve, > [quoted text clipped - 48 lines] > > Ron S. > Steve, > [quoted text clipped - 30 lines] > towards people in general has been well documented in his continuous > unprovoked attacks on people that are truly well intentioned. Tremendous recounting of pertinent facts, not surprising considering your previous occupation. I had forgotten some of this (in relatively short order) and it spurred my mind to recall his vague references to his own occupation. I'm becoming very suspicious of him and his real cancer status. I suspect he has cirrhosis of the liver and that is why he has chosen watchful waiting because it will kill him long before any prostate cancer will regardless of the aggressiveness of his cancer If he had relayed that info to us initially then we could have avoided all the unpleasantness's. Ron S. > BTW, do you have prostate cancer? Not anymore I hope. But it seems you can't be sure. I don't have a prostate anymore either. That apparently doesn't preclude PCa. The prostate was taken out after waiting watchfully. >> BTW, do you have prostate cancer? > > Not anymore I hope. But it seems you can't be sure. I don't have a > prostate anymore either. That apparently doesn't preclude PCa. The > prostate was taken out after waiting watchfully. Unfortunately, one cannot be sure. And, it seems praying and positive outlook aint worth a hoot. >>> BTW, do you have prostate cancer? >> [quoted text clipped - 4 lines] > Unfortunately, one cannot be sure. And, it seems praying and positive > outlook aint worth a hoot. Not in my book and I don't give one sweet damn about statistics, etc. I am quite pleased when someone kindly says they will pray for Ron.....or me or anyone. They obviously care enough to do so and that is VERY important.....to me, anyway. And I do not belong to any particular religion because that doesn't matter to me either. But I won't bore you with my philosophical views, lol. Cheers.....Heather >> Unfortunately, one cannot be sure. And, it seems praying and positive >> outlook aint worth a hoot. [quoted text clipped - 5 lines] > religion because that doesn't matter to me either. But I won't bore you > with my philosophical views, lol. You, of all people, should have known that was tongue in cheek. Once cannot statistically calculate the acts of God. Furthermore, I have read many "studies" where prayer was found to be beneficial. But, why debate it here? SRK >>> Unfortunately, one cannot be sure. And, it seems praying and >>> positive outlook aint worth a hoot. >> >> Not in my book and I don't give one sweet damn about statistics, etc. >> >> Heather > You, of all people, should have known that was tongue in cheek. Once > cannot statistically calculate the acts of God. Furthermore, I have > read many "studies" where prayer was found to be beneficial. But, why > debate it >here? Dammit......you got me yet again!! SMACK!! Blame it on all of this dental work. Perhaps you could say a few words for my bank account, grin. HF All I know is that I have friends all different faiths - Mormon, Jewish, Baptist, Catholic, Protestant, Buddhist, Native American Church, etc...... Each asked they could put me on their Prayer List and I responded, "By all means. I need all the help that I can get." Still undetectible after two mets...... Like Heather, Beverly, Steve and the rest, it can't hurt and gives so much satisfaction. GD >>>> BTW, do you have prostate cancer? >>> [quoted text clipped - 13 lines] > > Cheers.....Heather On November 2, Steve K replied to "safire": > ......it seems praying and positive outlook aint worth a hoot. Except perhaps insofar as it aids one's morale. Regards, Steve J "Natural laws have no pity." --Lazarus Long On Nov 2, 2:57 pm, "Steve Kramer" <skra...@cinci.rr.com> wrote...snip... Unfortunately, one cannot be sure. And, it seems praying and positive outlook aint worth a hoot. Here's an interesting study on intercessory prayer...ron Am Heart J. 2006 Apr;151(4):934-42. Comment in: Am Heart J. 2006 Apr;151(4):762-4. Am Heart J. 2006 Dec;152(6):e63. Am Heart J. 2006 Oct;152(4):e31. Am Heart J. 2006 Oct;152(4):e33. Am Heart J. 2006 Oct;152(4):e39. Am Heart J. 2006 Oct;152(4):e41-2. Am Heart J. 2006 Sep;152(3):e25. Study of the Therapeutic Effects of Intercessory Prayer (STEP) in cardiac bypass patients: a multicenter randomized trial of uncertainty and certainty of receiving intercessory prayer. Benson H, Dusek JA, Sherwood JB, Lam P, Bethea CF, Carpenter W, Levitsky S, Hill PC, Clem DW Jr, Jain MK, Drumel D, Kopecky SL, Mueller PS, Marek D, Rollins S, Hibberd PL. Mind/Body Medical Institute, Department of Medicine, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA, USA. hbenson@bidmc.harvard.edu BACKGROUND: Intercessory prayer is widely believed to influence recovery from illness, but claims of benefits are not supported by well-controlled clinical trials. Prior studies have not addressed whether prayer itself or knowledge/certainty that prayer is being provided may influence outcome. We evaluated whether (1) receiving intercessory prayer or (2) being certain of receiving intercessory prayer was associated with uncomplicated recovery after coronary artery bypass graft (CABG) surgery. METHODS: Patients at 6 US hospitals were randomly assigned to 1 of 3 groups: 604 received intercessory prayer after being informed that they may or may not receive prayer; 597 did not receive intercessory prayer also after being informed that they may or may not receive prayer; and 601 received intercessory prayer after being informed they would receive prayer. Intercessory prayer was provided for 14 days, starting the night before CABG. The primary outcome was presence of any complication within 30 days of CABG. Secondary outcomes were any major event and mortality. RESULTS: In the 2 groups uncertain about receiving intercessory prayer, complications occurred in 52% (315/604) of patients who received intercessory prayer versus 51% (304/597) of those who did not (relative risk 1.02, 95% CI 0.92-1.15). Complications occurred in 59% (352/601) of patients certain of receiving intercessory prayer compared with the 52% (315/604) of those uncertain of receiving intercessory prayer (relative risk 1.14, 95% CI 1.02-1.28). Major events and 30-day mortality were similar across the 3 groups. CONCLUSIONS: Intercessory prayer itself had no effect on complication- free recovery from CABG, but certainty of receiving intercessory prayer was associated with a higher incidence of complications. PMID: 16569567 > CONCLUSIONS: Intercessory prayer itself had no effect on complication- > free recovery from CABG, but certainty of receiving intercessory > prayer was associated with a higher incidence of complications. If the first two groups were evenly split between getting and not getting prayer, but the third group got prayers from all involved, so they got twice as many prayers. Maybe God just got irritated at all the third-party yammering. After all, isn't praying for someone you don't really know sort of the equivalent of spamming the Deity? (g) Alex > After all, isn't praying for someone you don't really know sort > of the equivalent of spamming the Deity? (g) As is praying for someone you do know. If the Almighty has decided the husband should get PCa, he certainly doesn't want the wife to interfere. However, the evidence shows that He does look favorably on certain, but not all, urologists. (P&E) ROTFL Thanks so much for the morning laugh! Bev > > CONCLUSIONS: Intercessory prayer itself had no effect on complication- > > free recovery from CABG, but certainty of receiving intercessory [quoted text clipped - 7 lines] > > Alex >[[ This message was both posted and mailed: see > the "To," "Cc," and "Newsgroups" headers for details. ]] [quoted text clipped - 18 lines] > >Sy Hi Sy, I will no comment on your decision. I would just like to remind you that this is not a private discussion between you and Beverly. Anyone can read your exchanges, now or any time in the future. And the reader can be a newbie that could be significantly influenced one way or another. I would think it is reasonable to expect from you the explaining of your thought process + facts that lead to your decision - so that a reader (newbie or not) can effectively understand your position and formulate his own view. In fact, if this is not done, what is the point of initiating a debate? Just > >[[ This message was both posted and mailed: see > > the "To," "Cc," and "Newsgroups" headers for details. ]] [quoted text clipped - 39 lines] > > - Show quoted text - Everyone - It is his body and his decision, we all need to remember and respect that. Sy - Best of Luck and good wishes, but you don't need to be such a dick. > There are several men out here who discovered they had PC with low numbers > and only a tiny percentage of positive cores. They sought treatment only to > find that their cancer had already escaped. That'd be me. Average PSA of about 10 for several years, small percentage of one core of 12. Threw everything that radiation oncology had at it. Pd-103 seeds, IMRT, and 8 months of Lupron, drove my PSA to < .1 for 6 months. 2 years later, I had a PSA of 60, a doubling time of months, and it was choking me to death. 6 months of Casodex and Lupron have beaten it back from PSA 60+ to . 6 The medical oncologist expects further falls as does the radiation oncologist. Very likely no treatment would have helped me. It was already loose and poised to kill me. I have the long term side effects of radiation, although they are very mild. These include occasionally getting up at night to pee, weaker than normal stream (can't write my name in wet concrete), when I have to go, I really have to go, softer erections not that I care being on Lupron. I figure I've caught up to Steve Kramer and we're both watching the clock, hoping that someone develops a silver bullet. I thought it might be Provenge but perhaps not. This sounds like a curse unless the sense is, "everyone needs a little luck when they deal with cancer." > I truly wish you luck. You're going to need it. It's Sy's decision to go WW. I went for an aggressive, high tech solution and lost that roll of the dice. I'd have been better off doing nothing until the mets surfaced and then going for a shot of Lupron, maybe, who knows. -kh <SNIP> > I went for an aggressive, high tech > solution and lost that roll of the dice. I'd have been better off > doing nothing until the mets surfaced and then going for a shot of > Lupron, maybe, who knows. > > -kh Hi kh, If androgen-dependent cells in time turn androgen-independent, why not kill them before they turn? It seems that this process happens with accumulated cell mutations even before diagnosis and is one of the reasons why advanced PCa is more resistant to treatments. Leaving the cancer to become metastatic (an more resistant to treatment) and then treat it is not something supported by the medical literature in any malignancy. The presence of androgen-independent stem cells in the prostate gland at birth is the main reason androgen deprivation is not considered curative for prostate cancer. In simple words, prostate epithelium is made up of three different types of cells. The largest portion is made of secretory epithelial cells. There are also basal epithelial cells and endocrine-paracrine cells. Not much is known about the endocrine- paracrine cells, their function and androgen sensitivity. The normal secretory epithelial cells are sensitive to androgens while the basal cells do not require androgens to grow and can survive without it. Basal cells are believed to be the stem cells of the prostate or cells that generate secretory epithelial cells. Bruchovsky and others believes that androgen independence is related to a shift in the ratio of androgen-dependent cells to androgen- independent stem cells in the tumor load. This, as mutations accumulate and dedifferentiation proceeds to an endpoint. This would explain why very advanced PCa is already androgen-independent at diagnosis and does not respond to hormonal suppression. The important question is: is the natural history of untreated PCa endpoint progression androgen independence? Arnold and Issacs describe the relationship between cell of origin for prostate cancer and androgen responsiveness. "Based on stem cell organization, it is possible for prostate cancer to have three distinct cells of origin: "The first alternative is that the prostate cancer is monoclonally derived from an androgen-independent stem cell. Even if the cell of origin is an androgen-independent stem cell, it is still possible for the resulting cancer to be responsive to androgen ablation. The malignant stem cell could retain the ability to progress down the hierarchical pathway, giving rise to larger subsets of androgen- sensitive amplifying and even larger numbers of androgen-dependent transit malignant cells. Such a heterogeneous cancer composed of these three cell types would respond to androgen ablation with the elimination of the largest subset of cancer cells (i.e. the androgen dependent malignant transit cells) and a reduction in the growth rate of the next largest subset of cancer cells (i.e. the androgen- sensitive malignant amplifying cells). Such a response would not be curative because neither the malignant androgen-independent stem cell nor the androgen-sensitive malignant amplifying cells would be eliminated." "A second alternative is that the original prostate cancer is monoclonally derived from an androgen-sensitive amplifying basal cell. If this occurs, the cancer would again be androgen responsive because it is composed of androgen-sensitive malignant amplifying cells that retain the ability of differentiating into androgen-dependent transit cell progeny. Again, owing to clonal expansion, the major type of cancer cells present would be the androgen-dependent malignant transit cells. Such a heterogeneous cancer would be responsive to androgen ablation because of the elimination of the major subset of malignant transit cells; however, the cancer would not be cured by such therapy because the androgen-sensitive amplifying cells would not be eliminated." "A third alternative is that the original cancer is monoclonally derived from an androgen-dependent transit (glandular) cell. If this occurs, the cancer would initially be highly androgen responsive to androgen ablation. If no further malignant progression occurred, the cancer theoretically could be cured by such therapy; however, even if this third possibility occurs and the initial prostate cancer is homogeneously composed of androgen-dependent cancer cells, as these cells undergo sufficient cellular proliferation to produce clinically detectable prostate cancer (i.e. more than 39 population doublings), a series of mechanisms would eventually lead to the heterogeneous development of malignant clones of androgen-sensitive or androgen- insensitive prostate cancer cells, or both." "Development of androgen-independent prostate cancer cells: As subpopulations of malignant prostate epithelial cells begin to grow independent of androgen, basic genetic changes likely occur in the cancer cell genome. The tumor cells become increasingly genetically unstable, developing clones that can proliferate without the requirement for androgenic stimulation (Isaacs et al. 1982, Wake et al. 1982). Once these androgen-independent clones develop, they have a growth advantage following androgen ablation over all other newly developed tumor clones that retain androgen dependence. "Other genetic changes may contribute to the progression to androgen independence. The frequency of expression of the apoptosis inhibitor, bcl-2, has been correlated with the progression from androgen dependence to the androgen independent metastatic phenotype (Furuya et al. 1996). If cells over-express bcl-2 and are thereby protected from apoptotic stimuli, their resistance to androgen depletion is augmented, along with their ability to progress towards hormone- refractory tumors (Raffo et al. 1995)." RalphV www.pcainaz.org/phpbb Source: J T Arnold1 and J T Isaacs Mechanisms involved in the progression of androgen-independent prostate cancers: it is not only the cancer cell's fault. Endocrine-Related Cancer (2002) 9 61-73 > Hi kh, Thanks RalphV, I read it twice but don't know what to make of the information. 6 months on Lupron and I'm feeling great (other than a mild case of all the side effects). What's disturbing is that both the radiation oncologist and the medical oncologist are keeping me on a short leash, "come back soon, hear". These are "names", heavy hitters, the A-Team, so I don't know how to take it. Rad says, 2 to 10 years but no one knows, if you need a blast of more rad, we can do it. Med says, you should be good for a long time and when the time runs out, I have heavier meds than Lupron, experimental stuff, even. 10 years puts me at 70. I gotta send Steve K my stats but essentially I clocked a PSA .6 (point six) about two months ago and the curve is still descending.... I hope. I'll go for another PSA in a week. I'm walking and exercising and about once a week I try to, you know, er-ee er-ee er-ee, and manage a barely stuffable weiner. It's a little better on Vitamin-V but nothing to write home about. -kh > Thanks RalphV, I read it twice but don't know what to make of the > information. [quoted text clipped - 19 lines] > > -kh Hi kh, The intent was to counter your statement; " I'd have been better off doing nothing until the mets surfaced and then going for a shot of Lupron, maybe, who knows." I thought you had done what needed to be done and wanted to tell you that leaving treatment for a rainy day doesn't seem to make much sense. You are doing well now and have many good years ahead of you. Be well and enjoy! RalphV www.pcainaz.org/phpbb > I gotta send Steve K my stats but essentially I clocked a PSA .6 > (point six) about two months ago and the curve is still descending.... Wow! From 60 to .06 in three months. Did I get it wrong? That's one hell of a drop!  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 10/11/07 Non Illegitimi Carborundum > "kh" <tch...@yahoo.com> wrote in message > [quoted text clipped - 3 lines] > Wow! From 60 to .06 in three months. Did I get it wrong? That's one hell > of a drop! PSA 60 and change down to 0.6 (zero-point-six) at just over 4 months. Both docs are "pleased" and "optimistic" but are very cautious. This thing almost killed me when my PSA passed 30 on the upswing. Get this, last year when my PSA climbed above 10, the tumor was visible on an enhanced CAT scan but no one knew what it was. Once it started, it was going FAST. So much for the idea of an indolent disease. RalphV, when I say "maybe, who knows", I mean, I literally don't know. Going in for treatment, the docs and I were optimistic. We figured we caught it early enough and it was a coin flip between surgery and rad, great odds either way. It didn't turn out that way. I figure they gave it their best shot, 97 Pd-103 seeds, 25 days of IMRT, and 8 months of Lupron. Pre treatment the "guesses" from the Rad doc and the Uro were that the thing would kill me in 8 to 12 years, so let's hit it now, my choice, slash or burn. 3 years after treatment, a tumor had my windpipe and an artery in a vise grip and it was literally choking the life out of me. When I walked up 1 flight of stairs, I'd go into oxygen debt. I'm doing much, much better now. I'm moving forward, getting active in my hobbies, gardening, walking, etc. -kh >> "kh" <tch...@yahoo.com> wrote in message >> [quoted text clipped - 35 lines] > > -kh I've been asked here recently what am I doing different that causes me to be less than 0.1 for so long under ADT after having presented with aggressive cancer. I listed a few. I also just found that exercise can help fight cancer directly (no big surprise there). You are one who wards off ADT-induced fatigue with exercise and activity. And you now have sub 0.1 PSA after aggressive cancer. Very interesting. BTW, where do you stand on water consumption, pepper, and Vitamin D? 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 10/11/07 Non Illegitimi Carborundum > I've been asked here recently what am I doing different that causes me to be > less than 0.1 for so long under ADT after having presented with aggressive [quoted text clipped - 3 lines] > You are one who wards off ADT-induced fatigue with exercise and activity. > And you now have sub 0.1 PSA after aggressive cancer. 0.6, Zero Point six, 6/10's of a something per something, I'm just hoping I can follow in your footsteps and will go undetectable. The docs have said that if that happens, MAYBE, they'll let me go off the Lupron for a while. I'm hoping for a silver bullet. I figure if it's not Provenge, there will be some other silver bullet in 5 years or so. I've been doing weights, I've built a landing in front of my house using paving stones. I dug out the area, hauled 1,800 lbs of rock, gravel and sand up a flight of stairs. The stones are 12.5 pounds or 9 pounds. I also walk a mile or so every day. I'll work on it for an hour and then collapse for an hour. It took me about 2 months to finish. > Very interesting. > > BTW, where do you stand on water consumption, pepper, and Vitamin D? I drink 3 cups of coffee to start out the day, then switch to unsweetened green tea, about a quart of dilute tea. I take a couple calcium pills, a multi-vitamin, folic acid, B12, I was hitting the red pepper hard 6 months after the radiation but stopped last year, no reason. I know I'm taking too much caffeine but I'm working a full day. I've got all the Lupron side effects and some days are worse than others. About one day a week, I feel almost normal. -kh >> And you now have sub 0.1 PSA after aggressive cancer. > > 0.6, Zero Point six, 6/10's of a something per something, That was supposed to be 1.0... fat fingers. 6/10s of a nanogram. Since a nanogram is 1/millionth of a gram, I guess you're at six ten millionths of a gram of PSA in two liters of blood. >I figure I've caught up to Steve Kramer and we're both watching the >clock, hoping that someone develops a silver bullet. I thought it >might be Provenge but perhaps not. Best of luck to both of you - I'm keeping my fingers crossed too. BTW, kh, I need you to be back up to scratch, I miss your lurid tales of sexual derring-do. > Best of luck to both of you - I'm keeping my fingers crossed too. This disease is the mind shaker and usually nothing bothers me. > BTW, kh, I need you to be back up to scratch, I miss your lurid tales > of sexual derring-do. I do too but I've been on Lupron for 6 months. I can still imagine getting, er, turgid and with effort can manage a better-than-stuffable but the "need" is gone. One of my docs has mentioned the possibility of going off Lupron at some point in the future. -kh >> BTW, kh, I need you to be back up to scratch, I miss your lurid tales >> of sexual derring-do. > > I do too but I've been on Lupron for 6 months. I can still imagine > getting, er, turgid and with effort can manage a better-than-stuffable > but the "need" is gone. Ha! That's exactly what I recently experienced. I was proof-reading a friend's book. When I got to the lurid sex, I couldn't wait to get through it and get back to the plot. :-) 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 10/11/07 Non Illegitimi Carborundum > I do too but I've been on Lupron for 6 months. I can still imagine > getting, er, turgid and with effort can manage a better-than-stuffable > but the "need" is gone. [quoted text clipped - 3 lines] > > -kh KH, it has been interesting watching how your interests and topics of conversation have changed this past year or so. Pre-Lupron kh and on-Lupron kh are two entirely different people. Your earlier vivid imagination was obvious, but now the "need is gone," as you say. It makes a difference, I know the feeling well. You say that you may be able to get off the Lupron at some point in the future. I have gone off twice now, and am currently off but will be going back on in another couple weeks or so. I was one for a year, off for a year, and then back on for two years. The first off period was nice, but I was impatient for the side effects to subside. Some went away eventually, some did not. This time off now, most of the side effects have gone away. The first time off I never did get rid of the hot flashes and still had some number of them most every day, with or without a major trigger. This time off Lupron, the hot flashes are GONE. And the "need" is back, as is a more appropriate energy level and desire to do things. The first time off Lupron I was not able to lose any of the weight I had gained. This time I have lost some 17 pounds just this summer, without trying. And I have body hair again!! One thing I did notice, was that the side effects did not seem as troublesome when going back on it the second time. This may just be due to knowing what to expect though, because they were all there. If you do take a vacation from the stuff, enjoy whatever reprieve from SE's you may get. Good luck to you. > One thing I did notice, was that the side effects did not seem as > troublesome when going back on it the second time. This may just be due > to knowing what to expect though, because they were all there. I noticed that too. I have all the side effects but they seem milder. I'm doing the Steve Kramer therapy, getting as much exercise as possible, eating healthy. That's not in the sense of a health nut but the other night, I cooked a 10 ounce NY strip steak. I had half for dinner, then saved the rest for lunch the next day. So far, I've managed to keep my weight down but I am losing muscle mass. The Lupron-fog is barely noticeable this time. I'm coping by keeping notes and to-do lists. The most noticeable side effect is the missing "fire". It's not just the fading libido. It's getting up to rip into the day. The whole Conan-the-barbarian, lets go to the park and play pick-up ball, then jack up the car and check the exhaust system, that's almost gone. It's really easy to just lay around and watch the news shows on the tube. I fight that by working my legs as much as possible. Even mild isometrics help, since I can do that while working. > If you do take a vacation from the stuff, enjoy whatever reprieve from > SE's you may get. Good luck to you. Thanks, same to you. My hope is to hang on long enough for the silver bullet. -kh - I'm not going down without a fight. >> One thing I did notice, was that the side effects did not seem as >> troublesome when going back on it the second time. This may just be due [quoted text clipped - 21 lines] > It's really easy to just lay around and watch the news shows on the > tube. I hope many PC pts considering preemptive (non-recurrent) ADT, especially those with physically active lives, will closely consider your experience, as it is apparently common. I.P. > I'm doing the Steve Kramer therapy, getting as much exercise as > possible, eating healthy. That's not in the sense of a health nut but > the other night, I cooked a 10 ounce NY strip steak. I had half for > dinner, then saved the rest for lunch the next day. LOL!! the "Steve Kramer therapy". You're going to get my a.s sued! :-) I did not mean to convey the idea that I eat healthy. Today, it was breakfast sandwiches at White Castle, a No. 3 at Burger King, and a 4-way at a Greek restaurant. The only think I do healthy is walk after dinner to try to push the crap out of my body faster than I stuffed it in. > Thanks, same to you. My hope is to hang on long enough for the silver > bullet. > > -kh - I'm not going down without a fight. Absolutely. If you give up, you're trading a silver bullet for a copper jacketed one. 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 10/11/07 Non Illegitimi Carborundum > LOL!! the "Steve Kramer therapy". You're going to get my a.s sued! :-) > > I did not mean to convey the idea that I eat healthy. Today, it was > breakfast sandwiches at White Castle, a No. 3 at Burger King, and a 4-way at > a Greek restaurant. The only think I do healthy is walk after dinner to try > to push the crap out of my body faster than I stuffed it in. That's actually not so bad. If you don't eat the bread or get the large fries, and pass on the sugary drinks, it's "Atkins". I get the small order of fries these days. I eat them one at a time, daintily. Greek food is VERY healthy. Greens, peppers, tomatoes, onions, olives, eggplant, a little feta cheese and vinegar for flavor. As for exercise, I force myself to walk and climb stairs. I'm doing as much yardwork as I can. My arms and legs are getting "thin", but not that you'd notice. A few years ago, I was a lumberer, a knuckle dragger. I look more normal and less like a powerlifter. And yes, some elegant, classy women do have secret fantasies about hairy, grunting, cavemen types. > Absolutely. If you give up, you're trading a silver bullet for a copper > jacketed one. I ain't giving up. -kh getting more sleep these days. > Choosing to postpone treatment tends to send shivers up the spines of most > us out here. [quoted text clipped - 8 lines] > I truly wish you luck. You're going to need it. > Bev Bev, I guess I am in the minority, because I have chosen to postpone surgery, radiation, etc., in favor of active surveillance (AS). Thus far, my spine is not shivering. (g) I certainly understand why any man told he has cancer in his body would want it removed. That was my initial reaction as well. But I don't think it is unreasonable to evaluate other options, including deferring active treatment. I also understand that Sy's style can piss people off. But suggesting that AS is a choice that would be opposed by the vast majority of men in this NG could discourage participation by some guys who have elected AS. (I'm not endorsing Sy's decision. His numbers would seem to make AS quite risky. But he says he is acting on the advice of competent medical professionals, so I won't second-guess him.) Like most people, my decision was shaped both by the information and advice available to me and by my life experience and emotional reactions. I have consulted with two groups of docs who specialize in prostate cancer and who have full access to my medical records. I've read every book, article and website I can get my hands on, have participated in "live" support groups and this NG, and have talked to many men with PCa in their history. I have three family members who had cancer. One suffered a horrible death despite the best treatment available in this country and Europe.The second is now cancer-free, but he had to undergo two corrective surgeries because of medical errors by a nationally-known PCa surgeon, and his QOL is permanently affected. A third died WITH (not of) cancer, at 99. I've tried to balance the real risk that my cancer will eventually proliferate against the real risks that immediate active treatment will turn out to have been unnecessary, may be accompanied by serious side effects, or may be supplanted by newer, less intrusive but equally effective treatments. In the two years since I was diagnosed, minor changes in diet, plus supplements, kept my PSA lower than it was when I was diagnosed. Adding Proscar six months or so ago halved it again. I get quarterly PSA and other tests, and semi-annual color doppler ultrasounds, to check the status of the disease. Thus far, one day at a time, I'm comfortable with my choice of AS. But I am ready to change that decision when/if my cancer shows signs of becoming less indolent. Whether that happens is a matter of luck. So in that sense you are right -- we are all going to need luck! Good health, Alex [[ This message was both posted and mailed: see the "To," "Cc," and "Newsgroups" headers for details. ]] Alex, Thanks for your comments and for spreading some sanity around. Yes I can be abrasive but there's an expression "beware the wrath of a patient man". I have gotten reactions to my personal decision that are so "over the top", so unthinking and so intolerant that I am amazed that this group is called "alt.support.cancer.prostate" and not "alt.myopia.cancer.prostate" Sy > > Choosing to postpone treatment tends to send shivers up the spines of most > > us out here. [quoted text clipped - 60 lines] > > |
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