Medical Forum / Diseases and Disorders / Prostate Cancer / April 2008
ADT immediate side effects.......
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skeptic - 09 Mar 2008 00:01 GMT As I stated in another post, I have relented and have stopped dealying the inevitable and am following my doctors advice to go on the standard casodex/lupron 1-2 punch to my pca cells. My question is: I have an important vacation out of the country (planned a long time ago) .coming up about exactly 10 days after the lupron shot (preceded by 10 days of casodex)...if I follow his advice to start immediately. My numbers are not good and I don't disagree with him. I am overly anxious by nature and always assume the worst (I wish i wasn't but i always see the cup as half empty, not half full) and am ...shall we say...highly anxious about "suffering" the SE of ADT for the first time...in another country (okay, it's the caribbean, but it's not the same as being home). For those who have had ADT2....have the SE kicked in immediately or was there a delay of several weeks befoe you felt anything different? As we know, we have heard many varying results from members of this group on ADT, so I know there is no one standard reaction, but I need to hear some anecdotal experiences so I can decide what to postpone...if anything. Thanks.
Heather - 09 Mar 2008 01:38 GMT Hi Skeptic......for what it is worth, Ron (my husband) went on Casodex and then Zoladex and the side effects didn't really kick in for SEVEN MONTHS!!
Granted, I believe it is usually 3 months, but don't worry about it. I pay no attention to IP who goes on about the *dreaded side effects* for the simple reason that if there is no other choice, then what??
Ron knows that he may have to go back on it if his PSA rises above 2.0, and he accepts that. He does see the glass as half full, I suppose. But not going back on it would be rather stupid, imo.
Please stop worrying yourself to death and just follow what your doctor suggests. You may be like Steve K and have minimal SE's. I have a theory on why, but he would smack me for that one, LOL!!
All the best and I envy you your Caribbean holiday......it is *blizzarding* AGAIN here in Toronto.....30 cm today (foot?....hate metric).
Heather
> As I stated in another post, I have relented and have stopped dealying > the inevitable and am following my doctors advice to go on the [quoted text clipped - 16 lines] > postpone...if anything. > Thanks. skeptic - 09 Mar 2008 04:08 GMT > Hi Skeptic......for what it is worth, Ron (my husband) went on Casodex > and then Zoladex and the side effects didn't really kick in for SEVEN [quoted text clipped - 40 lines] > > - Show quoted text - "30 cm today (foot?....hate metric)."
Heather just divide by 2.54 and you will have the equivalent in inches, which is almost exactly 12". Blah to that snow! Thanks for responding....7 months without side effects is very encouraging.
I.P. Freely - 09 Mar 2008 06:20 GMT > pay no attention to IP who goes on about the *dreaded side effects* That's criminally inexcusable and irresponsible advice, considering that I merely parrot the mainstream literature.
I.P.
Heather - 09 Mar 2008 07:04 GMT >> pay no attention to IP who goes on about the *dreaded side effects* > > That's criminally inexcusable and irresponsible advice, considering > that I merely parrot the mainstream literature.<<< I figured you would come out acussin' and afightin, lol. *Criminally irresponsible"...I think not!!
You missed one very important word......the word "eye" or "I". I said EYE pay no attention to you for 2 or 3 reasons.
One being you have no first hand knowledge of ADT's side effects. And all the studies in the world aren't worth an ounce of goose pee compared to a real life experience. Another is that Ron had no choice but to go on it due to a soaring PSA. The alternative was not very appealing.
So let's agree to disagree. As Steve K said, and I have also said, you scare the hell out of newbies with your anti-ADT horror stories. Steve seems to do rather well on it, as do several others. And as I said above, when there is no other choice, just suck it up, OK??
Wife of one who has BTDT.
I.P. Freely - 09 Mar 2008 07:40 GMT >>> pay no attention to IP who goes on about the *dreaded side effects* >> That's criminally inexcusable and irresponsible advice, considering [quoted text clipped - 17 lines] > > Wife of one who has BTDT. Oops. So sorry, and I apologize. I had forgotten you're the one who actually believes one man's outcome predicts more about the next guy's outcome than do all the statistics in the world.
But don't you think that quirk is relevant to someone you're advising, just in the off case he might think 100,000 anecdotes mean more than, you know ... ONE?
I.P.
Steve Kramer - 09 Mar 2008 13:40 GMT > Oops. So sorry, and I apologize. I had forgotten you're the one who > actually believes one man's outcome predicts more about the next guy's [quoted text clipped - 3 lines] > just in the off case he might think 100,000 anecdotes mean more than, you > know ... ONE? Not in defense of Heather, but to remind the newbies....
> Virtually every man who undergoes treatment involving current ADT meds > will experience some issues that they have never dealt with in their [quoted text clipped - 5 lines] > they will be or how easily they can be mitigated by other medications or > activities. It should be noted that Heather's Ron was one who chose to chance death rather than continue with ADT.
ron - 09 Mar 2008 14:09 GMT On Mar 9, 6:40 am, "Steve Kramer" <skra...@cinci.rr.com> wrote...snip...
> It should be noted that Heather's Ron was one who chose to chance death > rather than continue with ADT. No one needs to chance death rather than continue with ADT. There are different AA and LHRH agonist analogues, each differing slightly in chemical structure from the next, that may offer different SE profiles for a given patient. There are also LHRH antagonists that an oncologist might choose to try. Estrogen and its derivatives are available. They have a long track record of proven success with an extremely different SE profile. Finally there is low dose ketoconazole.
Options abound, one can choose an androgen deprivation therapy with tolerable SEs if they desire continued treatment to lower testosterone...ron
Steve Kramer - 09 Mar 2008 21:16 GMT On Mar 9, 6:40 am, "Steve Kramer" <skra...@cinci.rr.com> wrote...snip...
> It should be noted that Heather's Ron was one who chose to chance death > rather than continue with ADT. No one needs to chance death rather than continue with ADT. There are different AA and LHRH agonist analogues, each differing slightly in chemical structure from the next, that may offer different SE profiles for a given patient. There are also LHRH antagonists that an oncologist might choose to try. Estrogen and its derivatives are available. They have a long track record of proven success with an extremely different SE profile. Finally there is low dose ketoconazole.
Options abound, one can choose an androgen deprivation therapy with tolerable SEs if they desire continued treatment to lower testosterone...ron
==> As always, a sound, rational voice. Thanks, ron.
Heather - 09 Mar 2008 22:19 GMT Thanks, ron......I am keeping this for our Toronto oncologist. There is another ADT name that he had the first time and I don't think it is available in the US. I will have to find the name of it again. Perhaps that is why he went longer than most before the side effects hit. The oncologist out here in Brampton switched him over to Zoladex.....worth a thought or two, I think.
Btw....while looking for the name of the above ADT shot, I cam across this article on reducing hot flashes and spinal fractures. The drug is called "toremifene citrate" and the writeup is here..... http://www.canada.com/topics/bodyandhealth/story.html?id=11dcd5f2-726c-41e6-b638 -82af0e683906&k=25044
Can't find the name, but am amazed at the huge increase in Canadian articles and research on prostate cancer in 5 years.
Steve, can you remember the very first shot Ron had?? I think it may have started with a "C"..
Heather On Mar 9, 6:40 am, "Steve Kramer" <skra...@cinci.rr.com> wrote...snip...
> It should be noted that Heather's Ron was one who chose to chance > death > rather than continue with ADT. No one needs to chance death rather than continue with ADT. There are different AA and LHRH agonist analogues, each differing slightly in chemical structure from the next, that may offer different SE profiles for a given patient. There are also LHRH antagonists that an oncologist might choose to try. Estrogen and its derivatives are available. They have a long track record of proven success with an extremely different SE profile. Finally there is low dose ketoconazole.
Options abound, one can choose an androgen deprivation therapy with tolerable SEs if they desire continued treatment to lower testosterone...ron
Steve Kramer - 09 Mar 2008 22:42 GMT > Steve, can you remember the very first shot Ron had?? I think it may > have started with a "C".. Casodex and Superfect in October 2004.
Heather - 09 Mar 2008 23:27 GMT >> Steve, can you remember the very first shot Ron had?? I think it may >> have started with a "C".. > > Casodex and Superfect in October 2004. Ah.....thanks, my very dependable statistician. I was sort of close, grin. I shall do some hunting around on the internet and I will ask Dr. Loblaw if it is still in favour.
HF
ron - 09 Mar 2008 23:56 GMT Heather...If you like, you can google many of these terms (like "LHRH agonist"< etc,) and get some information in preparation for your meeting. In the case of trans-dermal estrogen, one of the experts/ users lives up in your neck of the woods (Dalhousie). See Richard Wassersug's article, "Transdermal Estradiol versus LH-RH Agonists for Androgen Deprivation Therapy: Benefits and Risks." It is very well written and can be found at
http://www.ppml-info.org/TDE.pdf
Richard provides an e-mail address at the end of the article and usually makes himself available to assist others. Hope this helps...ron
I.P. Freely - 09 Mar 2008 22:31 GMT > On Mar 9, 6:40 am, "Steve Kramer" <skra...@cinci.rr.com> > wrote...snip... [quoted text clipped - 14 lines] > tolerable SEs if they desire continued treatment to lower > testosterone...ron It's not necessarily a question of need; it involves personal criteria, conflicting data, arguing experts, outright choice, and the fact that much of the SE profile is driven not by the drug but by the testosterone deprivation itself. Why else would would a renown oncologist with advanced PC discontinue his ADT, publicly attesting as he sat in a panel at a PC symposium that his SEs were worse than his met symptoms now and in the foreseeable future? He was not "chancing" death; he was knowledgeably choosing an earlier death as better than his ADT SEs, fully knowing the adjunct and alternative treatment options at his disposal.
ADT has virtually nothing to do with "chancing" death; it merely -- we hope -- delays it. i.e.,it ADDS some SEs in the HOPE that it may extend the inevitable. It all falls back to the same personal tradeoff between unimpaired QOL for several years vs impaired QOL for several years + several months. To artificially quantify the tradeoff based on huge-scale statistics for the post-treatment patient w/low PSA, let's call it 100 months of high QOL life vs 107 months of impaired-QOL life. IMO, that's a legitimate, very personal dilemma, not a no-brainer in either direction.
I.P.
Heather - 09 Mar 2008 18:38 GMT See below...
> Not in defense of Heather, but to remind the newbies.... Thank you.....that was my point. I get tired of IP's scare tactics.
>> Virtually every man who undergoes treatment involving current ADT >> meds will experience some issues that they have never dealt with in [quoted text clipped - 9 lines] > It should be noted that Heather's Ron was one who chose to chance > death rather than continue with ADT.<<<<< -----------------------
Not quite, Steve. He didn't "choose to chance death"......he chose to come off the HT because he had rather severe side effects. I would say he chose to enjoy life more. He literally couldn't walk 20 feet without resting.
He and the doctor agree that if his PSA hits 2.0, he will go back on just Zoladex for a while. He was on 3 meds before and that was too much. Dr. Loblaw took him off Megace and Casodex immediately.....took 3 months for the Zoladex shot to mellow out.
The old guy is now out with the snowblower. Mind you, the neighbours are amazing!! We come out and find that they have banded together and shovelled us out.
Cheers.....Nanook of the North
Steve Kramer - 09 Mar 2008 21:34 GMT > See below...
>> It should be noted that Heather's Ron was one who chose to chance death >> rather than continue with ADT.<<<<< [quoted text clipped - 4 lines] > chose to enjoy life more. He literally couldn't walk 20 feet without > resting. Perhaps I should clarify. He took a chance on quantity of life to hopefully enhance his quality of life. I would, and if necessary will, make the same decision when/if the time comes. Once again, I think, you, Ron, IP and I agree.
Though ron has raised an interesting side-debate. What's Ron think about trying alternatives?
Heather - 09 Mar 2008 22:19 GMT >> See below... > [quoted text clipped - 10 lines] > hopefully enhance his quality of life. I would, and if necessary > will, make >the same decision when/if the time comes. <<< I understood what you meant.
> Though ron has raised an interesting side-debate. What's Ron think > about trying alternatives?<<<< --------------------
It hasn't come up frankly. But his PSA is up a tad as I told you privately. He feels much better now that his testosterone level is normal.
I think it was Alan Meyer who suggested Ron try estrogen and I did ask Dr. Loblaw in the past year. He is not in favour of it due to side effects vs effectiveness, IIRC.
We didn't see him this visit, which suggests to me that he is not too worried as of now. We were supposed to go to a lecture he was giving a month ago, but of course had a 30 cm snowfall and Andrew said it took him an hour just to get out of the underground parking lot!!
I just pray Ron's May PSA stays stable. He is still below 1.0, and the allowable limit seems to be 2.0 and above.
But when the time comes, I will ask Andrew about the things ron suggested. I have kept a copy.
Cheers....Heather
I.P. Freely - 09 Mar 2008 22:43 GMT > I get tired of IP's scare tactics.
> [my husband] didn't "choose to chance death"......he chose to > come off the HT because he had rather severe side effects. I would say > he chose to enjoy life more. He literally couldn't walk 20 feet without > resting.
> The old guy is now out with the snowblower. Given that Heather's "old guy" and I concur, I don't comprehend what Heather's beef is.
OH, YES ... now that I think of it, I DO. It's because I agree with the evidence that socialized medicine is a crock. Apparently because of that, she's saying her husband's severe SEs prove I'm a scaremonger.
Perfectly clear.
I.P.
BH - 09 Mar 2008 20:45 GMT Skeptic, my side effects - from Casodex alone - came on gradually. The first was hot flashes, which started at least several weeks into the treatment, as best I remember. They were annoying, but managable. They wouldn't have been much of a bother to a vacation. The other, worse ones for me, didn't hit until much later. Based on my experience, I'd say don't worry about the side effects interferring with your trip. But, again, I was on Casodex, only. I have no knowledge of what the combination might have done.
Like Ron, I decided to quit taking the Casodex because the cumulative side effects were cutting into my quality of life too much. My doc says I'm the "champion" of Casodex side effects, in his experience. But, that's just my experience. Some, like Steve Kramer, can stay on it for extended periods and be OK. I sincerely hope your experience is much closer to Steve's than mine, Skeptic. But, there's only one way to know - try it. You can always quit.
>It should be noted that Heather's Ron was one who chose to chance death >rather than continue with ADT. As to Steve's comment about Ron being "one who chose to chance death rather than continue with ADT", that's just nonsensical, emotional-stirring rhetoric that is about on par with I. P.'s characterization of Heather's comments as being "criminal".
I am not "chancing death" by not continuing ADT! I think we are all going to die sometime. I chance death when I get in my car and drive to Safeway, not by stopping Casodex. I concede that stopping ADT **may** contribute to my dying earlier than if I had stayed on it; but, there are some who might question that, too. And, as has been correctly stated here many times, statistics doesn't mean much to an individual's actual experience. I made the choice to be able to enjoy my life - whatever the duration - rather than feel like crap all the time. And, I'm happy with that decision, thank you.
"criminal" "chose to chance death" What is going on out there? How about leaving the sensational, inflamatory remarks to our would-be presidential candidates (who are better at that, anyway) and sticking a bit closer to reality in this group?
Best regards to all. Enjoy your vacation, Skeptic!
Burney RP in 1995 (age 52) RT in 2000 ADT (Casodex) 10/06 - 8/07 Latest PSA - 0.18
burney dot huff at mindspring dot com
Steve Kramer - 09 Mar 2008 22:35 GMT > As to Steve's comment about Ron being "one who chose to chance death > rather than continue with ADT", that's just nonsensical, > emotional-stirring rhetoric that is about on par with I. P.'s > characterization of Heather's comments as being "criminal". I hoped I had clarified that. I'll take it further (with apologies for its length).
I and most (probably all) people who take ADT after surgery or radiation do so for the purpose of extending our lives or extending that time between salvation radiation and chemotherapy or for some other quantity of life purpose.
Some of us have been lucky to be not as effected by the side effects of ADT. Some have been hit rather hard with ADT and cannot or will not accept its side effects. You (and maybe someday me) will not allow ADT to further infringe on the quality of the remaining balance of your lives. That is one tough decision and for those of you who have stopped ADT due to the quality of your lives and/or the lives of your loved ones, I salute you!
Having so many of us who have faired well under ADT, I cannot understand the penchant for telling people that they really ought to consider not trying it at all. To that end, I last week composed a passage on which I.P. and I agree. Each time that, in my humble opinion, he goes above and beyond that which I think he should in "advising people of the side effects of ADT" I will simply counter with the passage that he and I agree with. I think our battles over the subject will cease.
I am extremely sorry about the phrase "choosing death" who whatever it was I said. I meant only the choosing of quality over risk of quantity and I always intend to be sincerely complimentary when doing so. I place bravery as one of the highest traits to which one can aspire and that decision surely qualifies. At best, my decisions so far have been to take a stand, retreat, take a stand, retreat... I hope when I have quantity and quality to choose from, I will be as brave as you. Even when one swears to not let the bastard grind him down, sometimes he must avert his attention and efforts in another direction in the interest of his family and love ones.
I.P. Freely - 10 Mar 2008 02:24 GMT > Having so many of us who have faired well under ADT, The poll of this group revealed very few in that category, and most of those classified as "fairing fairly well" SEs that many people would call "awful", "horrible", or "devastating".
> I cannot understand the > penchant for telling people that they really ought to consider not trying it > at all. I think it is reprehensible to conceal from naive people the fact that any tx, including ADT or a heart transplant or an aspirin, is a matter of pros and cons we should assess, instead of a medical mandate. It would be *literally* criminal if a doctor did that with something serious.
> I am extremely sorry about the phrase "choosing death" who whatever it was I
> said. I meant only the choosing of quality over risk of quantity and I > always intend to be sincerely complimentary when doing so. I place bravery > as one of the highest traits to which one can aspire and that decision > surely qualifies. Yet you say nothing when Heather repeatedly -- EVEN THOUGH HER HUSBAND DID EXACTLY THAT -- attributes it to cowardice? I don't get it.
> Even when one swears to not let > the bastard grind him down, sometimes he must avert his attention and > efforts in another direction in the interest of his family and love ones. A major part of why I rejected ADT and why I am actively and formally promoting a "Death With Dignity" law in my state. I am not doing my part if I let this disease make her life any worse than it has to.
I.P.
Steve Kramer - 10 Mar 2008 09:52 GMT > The poll of this group revealed very few in that category, and most of > those classified as "fairing fairly well" SEs that many people would call > "awful", "horrible", or "devastating". I suppose you could say that most, maybe even all, consider the SEs awful, given the difference between normal and what we live with today. To you, the personally uninitiated, they are certainly awful. No libido, fatigue, breasts, shrinkage, joint pain, hair loss to the body, emotions, and on and on. But, we are fairing fairly well despite the awful SEs. We work, have fun with grandchildren, and manage to live otherwise normal lives. I suspect those in your horrible category are the ones who stop ADT, knowing they will go on it again. I suspect those in your devastating category are those extremely few people who cannot ever attempt it again. You will note, however, that a huge majority of people stay with ADT or go back on it when their PSA dictates.
> I think it is reprehensible to conceal from naive people the fact that any > tx, including ADT or a heart transplant or an aspirin, is a matter of pros > and cons we should assess, instead of a medical mandate. It would be > *literally* criminal if a doctor did that with something serious. You cannot be serious. First, I've never done that. Second, doctors do it all the time.
> > I am extremely sorry about the phrase "choosing death" who whatever it > was I [quoted text clipped - 5 lines] > Yet you say nothing when Heather repeatedly -- EVEN THOUGH HER HUSBAND DID > EXACTLY THAT -- attributes it to cowardice? I don't get it. What!?
Okay, let's say she did. I defended her when you purposely readacted from her quote. I defended you when she told you to leave. I suspect she believes her husband chose to stop ADT out of bravery and that you fear ADT out of cowardice. But, to be honest with you. I don't read much of Heather's prose when she gets off the topic of cancer; anymore than I read all of your prose when attacking her or Jordan or Jordan's when he's attacking you. And, I fully expect that most of the readers haven't gotten this far in my discussion with you.
In any case, don't hold me accountable to what anyone else says.
I.P. Freely - 11 Mar 2008 02:02 GMT > We work, have > fun with grandchildren, and manage to live otherwise normal lives. Many do not, so I must presume that's an editorial "we". As such, I think it would be more informative if it were identified as such.
> I suspect those in your devastating category are > those extremely few people who cannot ever attempt it again. My "devastated" category includes way more than just those who abandon it altogether.
> I.P. wrote >> I think it is reprehensible to conceal from naive people the fact that any [quoted text clipped - 4 lines] > You cannot be serious. First, I've never done that. Second, doctors do it > all the time. I -- and the law, and the Patient's Bill of Rights, and the courts -- am deadly serious. Fortunes swap hands over doctors and drug makers who do not warn of SEs (Google it). Do you think the drug manufacturers pay as much as or more for publicizing their medicines' SEs as they do for for advertising the medicines themselves out of the goodness of their hearts? Do you think those rapid-speech SE warnings with every radio ad for meds are there, at huge expense, for OUR benefit? Think you fill out that loooong med hx questionnaire at the doc's office ONLY because it helps him/her treat you?
>> Yet you say nothing when Heather repeatedly -- EVEN THOUGH HER HUSBAND DID >> EXACTLY THAT -- attributes it to cowardice? I don't get it. [quoted text clipped - 4 lines] > out of cowardice. > Okay, let's say she did. We don't have to. She has posted it explicitly way too often, including once or twice in this thread.
> I don't read much of > Heather's prose when she gets off the topic of cancer; anymore than I read > all of your prose when attacking her or Jordan or Jordan's when he's > attacking you. That explains why your comments on same are so off base. If you read my prose, you'd know I don't attack people. That's the difference between debate and ad hominem (aka personal attacks). Debaters -- including myself -- rebut and/or comment on the *written message*, not the messenger; ad hominem is a personal attack on the messenger. I think you'd have a hard time finding 3 or 4 personal attacks from me in my 20,000+ internet postings over the last decade or more. We've seen Steve and Heather level dozens of them just in this forum.
> In any case, don't hold me accountable to what anyone else says. Then please stop holding me accountable for personal attacks I *didn't* make, as you so forcefully, wrongly, and repeatedly did on June 19-21 '07.
I.P.
Steve Kramer - 11 Mar 2008 09:31 GMT Well, you convinced me. You will argue with your undertaker.
I'm done with it.
>> We work, have fun with grandchildren, and manage to live otherwise >> normal lives. > > Many do not, << Balance redacted >>
I.P. Freely - 10 Mar 2008 02:30 GMT > Having so many of us who have faired well under ADT, The poll of this group revealed very few in that category, and most of those classified as "fairing fairly well" admitted to SEs that many people would call "awful", "horrible", or "devastating".
> I cannot understand the > penchant for telling people that they really ought to consider not trying it > at all. I think it is reprehensible to conceal from naive people the fact that any tax, including ADT or a heart transplant or an aspirin, is a matter of pros and cons we should assess, instead of a medical mandate. It would be *literally* criminal if a doctor did that with something serious.
> I am extremely sorry about the phrase "choosing death" who whatever it was I
> said. I meant only the choosing of quality over risk of quantity and I > always intend to be sincerely complimentary when doing so. I place bravery > as one of the highest traits to which one can aspire and that decision > surely qualifies. Yet you say nothing when Heather repeatedly -- EVEN THOUGH HER HUSBAND DID EXACTLY THAT -- attributes my ADT rejection to cowardice? I don't get it.
> Even when one swears to not let > the bastard grind him down, sometimes he must avert his attention and > efforts in another direction in the interest of his family and love ones. A major part of why I rejected ADT and why I am actively and formally promoting a "Death With Dignity" law in my state. I am not doing my part if I let this disease make her life any worse than it has to.
I.P.
I.P. Freely - 10 Mar 2008 02:36 GMT > Having so many of us who have faired well under ADT, The poll of this group revealed very few in that category, and most of those classified as "fairing fairly well" admitted to SEs that many people would call "awful", "horrible", or "devastating".
> I cannot understand the > penchant for telling people that they really ought to consider not trying it > at all. I think it is reprehensible to conceal from naive people the fact that any tx, including ADT or a heart transplant or an aspirin, is a matter of pros and cons we should assess, instead of a medical mandate. It would be *literally* criminal if a doctor did that with something serious.
> I am extremely sorry about the phrase "choosing death" who whatever it was I
> said. I meant only the choosing of quality over risk of quantity and I > always intend to be sincerely complimentary when doing so. I place bravery > as one of the highest traits to which one can aspire and that decision > surely qualifies. Yet you say nothing when Heather repeatedly -- EVEN THOUGH HER HUSBAND DID EXACTLY THAT -- attributes my ADT rejection to cowardice? I don't get it.
> Even when one swears to not let > the bastard grind him down, sometimes he must avert his attention and > efforts in another direction in the interest of his family and love ones. A major part of why I rejected ADT and why I am actively and formally promoting a "Death With Dignity" law in my state. I am not doing my part if I let this disease make her life any worse than it has to.
I.P.
I.P. Freely - 10 Mar 2008 00:01 GMT > don't worry about the side effects interferring > with your trip. If I gave medical advice, I'd say, "Ask your med onc whether a few more weeks w/o ADT is likely to impact your life as much as taking a major overseas trip when new on ADT." If I gave medical advice, I'd say, "Given how slow everybody says this disease is, and given that I'll be away from my home, my doctors, my insurer, and a medical infrastructure that takes PC seriously, it would take several big, burly, renown med oncs to persuade me to go overseas with a gutful of new drugs whose near-term undesired effects WILL be much more noticeable than its near-term desired effects."
But since I don't give medical advice, I guess you're on your own. Much depends on the length of your trip, on how soon the literature says SEs may kick in (when mine kicked in tells you only that some SEs CAN start quickly, and we already know that.)
For full disclosure, however, I should add that I schedule even major surgeries and SRT around my windsurfing season, because I'm biased towards enjoying what I *DO* have rather than worrying about what I *might* lose. A doc once told me to avoid the sun because it might give me skin cancer ... days before I was leaving for Maui during its windiest summer in decades.
That was 19 years and 9 months ago, and although the knuckle osteoarthritis caused by 35 straight days of extreme wind never completely abated, that skin cancer hasn't materialized.
But ya know what studies say may have caused my urgently life-threatening colon cancer? Glassman will love this: Whole grains. Cereal and bread. The government makes manufacturers add so much folate to our cereal and breads that my whole grain foods pegged my folic acid intake at several times the max safe dosage.
So if I gave medical advice, I'd add, "I'd rather double(?) my odds of a great vacation than increment by one the third decimal point of my 10-year-survival odds."
I.P.
Steve Kramer - 09 Mar 2008 13:25 GMT > One being you have no first hand knowledge of ADT's side effects. And all > the studies in the world aren't worth an ounce of goose pee compared to a > real life experience. Assuming of course that goose pee doesn't end up being the cure we're all looking for.
I.P. Freely - 09 Mar 2008 23:18 GMT >> One being you have no first hand knowledge of ADT's side effects. And all >> the studies in the world aren't worth an ounce of goose pee compared to a >> real life experience. That's one of the two or three dumbest, most potentially dangerous, most irresponsible statements I've seen in my three years here. I'll be very disappointed in this group if that obviously asinine statement is not soundly refuted.
I.P.
Steve Kramer - 09 Mar 2008 13:22 GMT >> pay no attention to IP who goes on about the *dreaded side effects* > > That's criminally inexcusable and irresponsible advice, considering that I > merely parrot the mainstream literature. I agree that it would be inexcusable, if that is what she said. I'm not so sure of the "criminally" adverb. As it is, it is inexcusable that you redacted the "I" in your quotation of her.
I.P. Freely - 09 Mar 2008 17:45 GMT >>> pay no attention to IP who goes on about the *dreaded side effects* >> That's criminally inexcusable and irresponsible advice, considering that I [quoted text clipped - 3 lines] > sure of the "criminally" adverb. As it is, it is inexcusable that you > redacted the "I" in your quotation of her. Literally, of course, "criminal" MAY be inaccurate; it was used to emphasize degree, not as legal advice.
As for redacting the "I" being inexcusable, I disagree, as it does not change her message: "pay no attention to IP who goes on about the *dreaded side effects*". She's telling someone asking about SEs, once again, that the literature based on scores of thousands of cases has less predictive value than the ONE INDIVIDUAL she happens to be married to. Every person in this forum should be in her fade about spreading total, harmful, dangerous, stupid BS like that. Anything less is inexcusable.
I.P.
Heather - 09 Mar 2008 18:43 GMT >>>> pay no attention to IP who goes on about the *dreaded side effects* >>> That's criminally inexcusable and irresponsible advice, considering [quoted text clipped - 13 lines] > less predictive value than the ONE INDIVIDUAL she happens to be > married to.<<<<< BS, IP!! I stated that EYE pay no attention to you and your scare stories....I never suggested that everyone follow my example (even tho it might not be a bad idea, evil grin).
He asked for ANECDOTAL evidence as to how soon the SE's hit and I answered with Ron's experience....and gave 7 months for the ONLY individual I have ever been married to, and gave a round figure of 3 months which others have reported as their time zone, so to speak.
So stop playing with my words and stfu, OK?? Frankly, I think you are scared sh*tless of ADT and it sure colours your view of it.
Now go away.....I am tired of you twisting my words to suit your diatribes. I was merely commenting on the different lengths of time it takes for SE's to hit, which I am sure you have seen many times on this news group.
HF
Steve Kramer - 09 Mar 2008 21:28 GMT > Now go away..... One inexcusable act does not make him a troll or anything else that we should reserve for expulsion.
Heather - 09 Mar 2008 21:55 GMT >> Now go away..... > > One inexcusable act does not make him a troll or anything else that we > should reserve for expulsion. No.....I just meant to stay out of MY face. He can go twist other people's statements.
I.P. Freely - 09 Mar 2008 23:18 GMT >> One inexcusable act does not make him a troll or anything else that we >> should reserve for expulsion. > > No.....I just meant to stay out of MY face. I guess "stfu" has a different translation in Canada than in the USA.
Sorry, Heather, but as long and as often as you tell newbies that Uncle Joe's outcome is more predictive than VA statistics, and I see any sign the newbie may accept that BS, I reserve the right to correct you. And every time I'm the only one to do so, my regard for this group drops a notch. THAT'S far more inexcusable and far more relevant than someone's paranoid, invalid assumption of why I dropped the "I".
I can't comprehend how so many of this group worry more about punctuation, phrasing, one's political bent, the meaning of "I", etc. than about a newbie being told -- by a member whose husband chose QOL and an earlier death over his extreme SEs -- that she considers my vetted ADT SE research as invalid scaremongering.
I.P.
Chopper - 01 Apr 2008 16:39 GMT [[ This message was both posted and mailed: see the "To," "Cc," and "Newsgroups" headers for details. ]]
Heather, I was just in the "neighborhood" and though I'd stop by as I'm sure I've been missed.
In this particular case I think I.P. is right on the mark with his comments.
Regarding your comment "to stay out of MY face":
Calm down. Take a deep breath. You are in front of a computer screen. No "one" is in YOUR face. Those are photons and pixels nothing else.
Do you hear people talking to you through your dental fillings?
Sy
> >> Now go away..... > > [quoted text clipped - 3 lines] > No.....I just meant to stay out of MY face. He can go twist other > people's statements. Heather - 01 Apr 2008 19:16 GMT > [[ This message was both posted and mailed: see > the "To," "Cc," and "Newsgroups" headers for details. ]] > > Heather, I was just in the "neighborhood" and though I'd stop by as > I'm > sure I've been missed. Nope, wrong!! You aren't all that important in the scheme of things, contrary to what your inflated ego thinks......
How's Hicksville, NY?? Oh, I guess I won't see your answer.
Bye bye......PLONK!!
Steve Kramer - 09 Mar 2008 21:23 GMT > As for redacting the "I" being inexcusable, I disagree, as it does not > change her message: "pay no attention to IP who goes on about the *dreaded > side effects*". I do not agree. However, if that was your thought at the time, then why did you redact the "I"? To save on server space?
I.P. Freely - 09 Mar 2008 22:49 GMT > why did you redact the "I"? I am sick and tired of people quoting paragraphs and even pages when their post refers only to a sentence or even a phrase. I thus try to parse down to the relevant minimum. Usually have, usually will. No attempt at all to distort Heather's meaning -- a despicable practice I do not employ or tolerate -- as I explained above.
I.P.
Steve Kramer - 09 Mar 2008 23:28 GMT >> why did you redact the "I"? > > a despicable practice Okay, on that we agree. :-)
Steve Kramer - 09 Mar 2008 12:56 GMT > Please stop worrying yourself to death and just follow what your doctor > suggests. You may be like Steve K and have minimal SE's. I have a theory > on why, but he would smack me for that one, LOL!! Nonsense! I almost never strike a woman. :-)
> ......it is *blizzarding* AGAIN here in Toronto.....30 cm today > (foot?....hate metric). Yeah, that's about right. It started over Curtis, went through us, then over pmoore11 (hmmmm, haven't heard from him in awhile), and right on through to you, Doug49, FredK, Greg Louis, khildebrandt, Norman, and Fr. Moschos. Speaking of which, have you heard from Stavros lately?
 Signature PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA <.1 <.1 <.1 .27 .37 .75 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
Heather - 09 Mar 2008 18:46 GMT Hi Puss......I just heard from Fr. Moschos and he has a new email address. I will write him today. He is now with my ISP and his notification was in my junk mail......these anti-spam measures can be dangerous!!
Cheers....Heather
>> Please stop worrying yourself to death and just follow what your >> doctor suggests. You may be like Steve K and have minimal SE's. I [quoted text clipped - 10 lines] > Norman, and Fr. Moschos. Speaking of which, have you heard from > Stavros lately? Gourd Dancer - 09 Mar 2008 04:36 GMT Penis envy...ADT SE's envy.....
No big deal.
Gourd Dancer
> As I stated in another post, I have relented and have stopped dealying > the inevitable and am following my doctors advice to go on the [quoted text clipped - 16 lines] > postpone...if anything. > Thanks. Alan Meyer - 09 Mar 2008 19:09 GMT Back to skeptic's original question:
> For those who have had ADT2....have the SE kicked in immediately or > was there a delay of several weeks befoe you felt anything different? My experience was that the side effects of Lupron were pretty nice for the first couple of weeks. There was a testosterone flare during that period. It might be just the thing for your Caribbean vacation.
After that time, the testosterone began to wane. It was probably about 4-6 weeks after the injection that I got my first hot flash.
In my own case, I never had a side effect that required any medical attention. The worst effects I had were after about 6 months I began to get gradually increasing stiffness and pain in my finger joints. Medical help (my doctor gave me anti-inflammatories) did no good at all. I was able to resolve the problem myself with exercise.
I did have much lowered energy. I don't know whether that was due to the drop in testosterone, or to the radiation that I was getting concurrently with the ADT. I suspect a lot of it was due to the ADT. But there too, exercise was the key antidote.
So my advice is, go on the vacation. Have a good time. The drugs are going to put your cancer into remission for some time and, since you've started early, possibly for a long time.
Stop worrying. All of us have only so much time on earth anyway. Let's make the most of it and not spend it wracked by anxiety.
Alan
Clarence Crow - 09 Mar 2008 19:23 GMT <snip>
>As we know, we have heard many varying results from members of this >group on ADT, so I know there is no one standard reaction, but I need >to hear some anecdotal experiences so I can decide what to >postpone...if anything. I read all the Heather/IP sh.t-fight and urgers' comments in the thread so far.
You are right, everyone is different.
Statistics are not worth a 'knob of goat-sh.t' if you don't fit the middle of the probability curve.
I don't...but then I'm a stupid Aussie who still has a house and is not faced with electing some other idiot as President.
I'd send y'awl a food parcel, but the sub-prime fiasco and other world shattering events have depleted my stocks :(
-Please reply to group as my email addr is fake!
-Regards CC
Steve Kramer - 09 Mar 2008 21:55 GMT > I read all the Heather/IP sh.t-fight and urgers' comments in the > thread so far.
> Statistics are not worth a 'knob of goat-sh.t' if you don't fit the > middle of the probability curve. [quoted text clipped - 4 lines] > I'd send y'awl a food parcel, but the sub-prime fiasco and other world > shattering events have depleted my stocks :( Oh, how I like Australians. Don't agree with you on at least one count, but I sure as hell like your unabashed way of saying what you think.
I.P. Freely - 09 Mar 2008 22:54 GMT > Statistics are not worth a 'knob of goat-sh.t' if you don't fit the > middle of the probability curve. I totally agree.
Now ... how do we objectively, actively determine whether we fit some probability curve?
I.P.
Steve Jordan - 09 Mar 2008 23:46 GMT I'm gonna toss a grenade or two, having watched the flamewar for a few days.
(1) I note with a smile that the Great Critic of Ad Hominem argument is using that very tactic.
(2) I note with a shrug that he persists in failure to prove his claims of thousands -- or is it tens of thousands? -- of ADT horror stories. Not a scintilla of evidence, not a hint of a clinical study. He probably, as is his record, expects one who disagrees to do the heavy lifting of research, not realizing that that is not the way it works. It's the burden of him who makes an assertion to document it.
Frex: The rooster's crow causes the sunrise. Now, it's my duty to prove it.
(3) I note with disgust that he alleges that some famous PCa medic announced that he stopped ADT because he just couldn't stand the SEs, but as usual he can't/won't identify who that is, when and where it happened, and where supportive evidence can be found.
(4) And I note with a yawn that he still claims to have documented his allegations, notwithstanding that it is clear that he has not. Where is the evidence? Where is the proof? Where?
Well, I've indulged my impatience, for which I apologize to almost everyone. I'll now leave the subject.
Regards,
Steve J
I.P. Freely - 10 Mar 2008 03:00 GMT > (1) I note with a smile that the Great Critic of Ad Hominem argument is > using that very tactic. Where? (You're welcome to search back for a year or two if you can't find an example in this thread.)
> (2) I note with a shrug that he persists in failure to prove his claims > of thousands -- or is it tens of thousands? -- of ADT horror stories. > Not a scintilla of evidence Strum. Walsh. Harvard. Stolz. Scardino. Lange. et cetera et cetera et cetera Every one of the many studies I referenced when I brought this subject up three years ago. It's real easy. Your guru says the odds of some of the SEs run in the range of 0.6 to 0.9. His partner Stolz puts the odds of one of its worst SEs at virtually 1.0. Multiply any of those odds by the number of people on ADT. Now tell us that ADT SEs are not very numerous and often very serious.
> (3) I note with disgust that he alleges that some famous PCa medic > announced that he stopped ADT because he just couldn't stand the SEs, > but as usual he can't/won't identify who that is, when and where it > happened, and where supportive evidence can be found. I'm not going to to dig up the man's name, the date, the symposium, and the weather ever time you demand it. Once or twice was enough.
I.P.
skeptic - 10 Mar 2008 03:14 GMT Thank you to the very few that actually answered my question. The rest of the arguing I could do without. I will be careful what I post in the future...if anything.
I.P. Freely - 10 Mar 2008 04:46 GMT > Thank you to the very few that actually answered my question. > The rest of the arguing I could do without. > I will be careful what I post in the future...if anything. Skep, almost everyone here contributed to your answer, as you shall see.
Arguing is unavoidable in a serious topic so replete with conflicting data and conflicting professional opinions. If this stuff were cut and dried, we'd just publish a FAQ, offer a list of homilies like "You'll be fine" and "Just ask your doctor", and go home. Since it's not, it's in the debates that questioners learn, because only there can they see all the many facts, opinions, rationale, pros, cons, benefits and side effects which are a necessary -- but insufficient -- requirement for making informed decisions. The other necessary part is his own list of prioritized treatment outcome criteria. There are 2432902008176640000 ways to prioritize the 20 or so potential SEs of ADT, so very few men would prioritize them in the same order. Compound that by their uncertainty, their individual mitigation possibilities, the bull so many physicians and patients feed us about them, the emotions involved, and the different personalities involved, and you are unlikely to get a calm discussion of any length about ADT.
Heck, if you had come here before the winter of '04-'05, when I was forced to make an ADT choice and found virtually no frank discussion of it here, you'd have found ... ta daaaa ... virtually no frank discussion of it here. Most people here still have a hard time doing so, as you can see. They want to just tiptoe through the tulips in the interest of peaceful coexistence, even when newbies ask for honest information. Even our most adamant ADT SE dismisser has to be pressed hard to admit that just ONE of his SEs is having to spend fully half his life in bed ... and that's NOT having sex.
Thus when I see people presenting ADT predictions significantly departing from the literature, from the ADT SE poll of this forum, from my own exhaustive ADT analysis approved by this forum and by a teaching hospital oncology board, and from their written description of their own SEs, I speak up.
Then everybody chimes in with their opinions, and the newbie gets covered in the ensuing debris. If you need neater answers, you'll need a neater cancer. Unfortunately, many of those kill us MUCH more quickly.
As you now see, only those more worried about me than about your dilemma failed to contribute to YOUR answer to your question. I emphasize "YOUR" because we can't answer your question for you.
I.P.
Just - 10 Mar 2008 14:32 GMT >Then everybody chimes in with their opinions, and the newbie gets >covered in the ensuing debris. If you need neater answers, you'll need a [quoted text clipped - 5 lines] > >I.P. Hi I.P.!
I may not agree with you sometimes, but I always like your logic.
You are a great contributor to this forum. Thanks for your effort.
Just
I.P. Freely - 11 Mar 2008 03:22 GMT > Hi I.P.! > > I may not agree with you sometimes If we always agreed, one of us would be superfluous and a waste of perfectly good air.
> but I always like your logic. THEN HOW COULD YOU VOTE ... Oh, never mind. ;-)
> You are a great contributor to this forum. Uh, oh; One of us is wasting oxygen again. ;-)
> Thanks for your effort. I appreciate that. And in light of the criticism it sometimes garners, it took some backbone to say so out loud.
I.P.
safire - 21 Mar 2008 21:10 GMT > I'm gonna toss a grenade or two, having watched the flamewar for a few > days. > > (1) I note with a smile that the Great Critic of Ad Hominem argument is > using that very tactic. This of course is about "IP Freely", who with his fellow war criminal friends killed thousands of innocent Vietnamese women and children in the My Lai massacre exactly 40 years ago and got away with it. No Nuernberg trial for Freely. But his god did punish him with lots of evil diseases and treatments with terrible side effects imposed on him by doctors that hate his guts. Justice after all.
> (2) I note with a shrug that he persists in failure to prove his claims > of thousands -- or is it tens of thousands? -- of ADT horror stories. > Not a scintilla of evidence, not a hint of a clinical study. He > probably, as is his record, expects one who disagrees to do the heavy > lifting of research, not realizing that that is not the way it works. > It's the burden of him who makes an assertion to document it. Which is why his doctors have marked him an obnoxious patient.
> Frex: The rooster's crow causes the sunrise. Now, it's my duty to prove it. > [quoted text clipped - 6 lines] > allegations, notwithstanding that it is clear that he has not. Where is > the evidence? Where is the proof? Where? Freely doesn't know the difference between fact and fiction. Maybe it's his old age. Incontinent and incompetent.
> Well, I've indulged my impatience, for which I apologize to almost > everyone. I'll now leave the subject. > > Regards, > > Steve J doofy - 21 Mar 2008 21:46 GMT >> I'm gonna toss a grenade or two, having watched the flamewar for a few >> days. [quoted text clipped - 8 lines] > diseases and treatments with terrible side effects imposed on him by > doctors that hate his guts. Justice after all. Yeah, ok, plonk.
Heather - 21 Mar 2008 22:09 GMT Good.....didn't take long for his true colours to come out, eh? (Yes, Steve....I realize that sentence is a dead Canadian giveaway, grin).
FWIW.....that d*ckhead is a Brit......and does try to get a few of the guys going. I don't think he even has Pca, but is just a troll.
Carry on "Doofy", but damn, please use a real first name, so long as it is NOT Ron or Steve......we have a *plethora* of them.
Cheers from the Great White North.......Heather
>>> I'm gonna toss a grenade or two, having watched the flamewar for a >>> few days. [quoted text clipped - 10 lines] > > Yeah, ok, plonk. doofy - 21 Mar 2008 22:21 GMT > Carry on "Doofy", but damn, please use a real first name, so long as it > is NOT Ron or Steve......we have a *plethora* of them. Ok, Dwight it is. Or Duh-wite, thus Duh.
Heather - 21 Mar 2008 22:57 GMT >> Carry on "Doofy", but damn, please use a real first name, so long as >> it is NOT Ron or Steve......we have a *plethora* of them. > > Ok, Dwight it is. Or Duh-wite, thus Duh. Ahhhh, thank you Duh-wite. Vastly superior to doofy. (G) Actually one of the idjits on the antivirus ng is called "Duh-Wayne", so I think I will call you by your proper name, Dwight.
Cheers.....Heather
doofy - 21 Mar 2008 23:02 GMT >>> Carry on "Doofy", but damn, please use a real first name, so long as >>> it is NOT Ron or Steve......we have a *plethora* of them. [quoted text clipped - 5 lines] > > Cheers.....Heather s'okay. People always get it wrong in person. I got called Dwayte the other day. That was a new one. I guess they changed directions in the middle of the name.
Steve Kramer - 22 Mar 2008 03:03 GMT >> Carry on "Doofy", but damn, please use a real first name, so long as it >> is NOT Ron or Steve......we have a *plethora* of them. > > Ok, Dwight it is. Or Duh-wite, thus Duh. I'm sure Mr. Fitzmaurice wouldn't mind.
rosbif - 22 Mar 2008 09:43 GMT >FWIW.....that d*ckhead is a Brit ....that explains it....
Heather - 22 Mar 2008 18:03 GMT >>FWIW.....that d*ckhead is a Brit > > ....that explains it.... Whoops.....didn't mean to include you, LOL. And I was just rechecking his headers from a while back because he changed his munged return address a tad!! He also managed to take out the "originating NNTP number", so methinks this rude, offensive jerk is nothing but pure TROLL!!
He has alluded to speaking German and an Asian language, so one could safely assume he is a) a liar, or b) one of the above and not English, or c) trying to throw people off the track.
But he ain't worth the effort, Sir Rosbif!! Btw, his time zone is GMT +1 hour.
Cheers from Canada......Heather
Gourd Dancer - 22 Mar 2008 19:27 GMT Heather, my dear... :)
"He has alluded to speaking German and an Asian language..." He/she was not able to understand the German language response from me, nor was he/she able to undertstand the Mandrin language and Japanese language response from my son. So, a liar with an ISP in Germany makes him/her an ex-pat from somewhere. Maybe, in the vernacular of a redneck, he/she be kick'd from home.
So quiet not to have to read what he/she writes.
Cheers from Texas.
GD
>>>FWIW.....that d*ckhead is a Brit >> [quoted text clipped - 15 lines] > > Cheers from Canada......Heather Heather - 22 Mar 2008 19:50 GMT Thank you, my dear......8-))
I find that those who thoroughly munge their headers are usually trolls.....and I do recall you surprising me with an answer in German (which I did understand a bit of, thanks to a year of it way back when, lol). Didn't realize you tried Mandarin or Japanese. Goodonya. I had an uncle that spoke Mandarin and Cantonese.....son of church missionaries.
As you say, he is probably an ex-pat......but I still get a gut hunch re the UK.....who knows why!! Probably a wimpy little nerd in real life.....they get *real brave* with a pseudonym.
Glad to hear you are doing well, btw. And assume that your son is faring well in far off lands.
Take care.....Heather (and Ron, of course)
> Heather, my dear... :) > [quoted text clipped - 31 lines] >> >> Cheers from Canada......Heather rosbif - 22 Mar 2008 19:52 GMT >>>FWIW.....that d*ckhead is a Brit >> >> ....that explains it.... > >Whoops.....didn't mean to include you, LOL. Heheh....no sweat Heather, as an all-round misanthrope and generally unpatriotic brit I was beginning to see your point!....:-)
>And I was just rechecking >his headers from a while back because he changed his munged return >address a tad!! He also managed to take out the "originating NNTP >number", so methinks this rude, offensive jerk is nothing but pure >TROLL!! I never doubted it, but I'm impressed by your internet sleuthing - I don't know how to do that.
>He has alluded to speaking German and an Asian language, so one could >safely assume he is >a) a liar, or >b) one of the above and not English, or >c) trying to throw people off the track. yep, liar works for me.
>But he ain't worth the effort, Sir Rosbif!! Btw, his time zone is GMT >+1 hour. Can he cheat with that too? I notice when I sort my posts by date (I'm using forte agent with a long-retention news server), I get 3 or 4 of Alan Meyer's posts at the top apparently posted from the year 2014. I thought that might have been something to do with Alan's calendar being temporarily incorrectly set at some point. Unless.......no.....it couldn't be.......
>Cheers from Canada......Heather Cheers from a cold, wet Sussex.....r
Steve Kramer - 21 Mar 2008 22:12 GMT >>> I'm gonna toss a grenade or two, having watched the flamewar for a few >>> days. [quoted text clipped - 10 lines] > > Yeah, ok, plonk.. Holy cow!!! 2 hours and 15 minutes!! An ASCP record!
DominicM - 10 Mar 2008 01:18 GMT > As I stated in another post, I have relented and have stopped dealying > the inevitable and am following my doctors advice to go on the [quoted text clipped - 16 lines] > postpone...if anything. > Thanks. Skeptic.....understand your concern. I just started chemo and ADT. Two years my family went to Cancun for our annual spring break and I stayed home to have salvage radiation. We decided to go back to Cancun before I decided my lastest treatment. Despite my risk of infection after chemo and need to limit sun exposure etc I am not going to be trapped by this disease. As the other guys have said it takes a while for ADT SE's to kick in if they do. It'll be 3 weeks ago this Tues that I started Docataxel, Eligard (Lupron) and Casodex and the minor SE's I had were the week after were chemo related. You should be fine.
Go enjoy your trip.
Lud - 10 Mar 2008 21:37 GMT > As I stated in another post, I have relented and have stopped dealying > the inevitable and am following my doctors advice to go on the [quoted text clipped - 16 lines] > postpone...if anything. > Thanks. When you start Casodex, it is not known to have side effects - it just prevents the testosterone from reaching the prostate cells (including the cancer) so your blood testosterone will rise and so will the blocking hormone (SHBG). After the Lupron shot, your testosterone will rise for 10 -14 days and then fall to castrate level at one month after the injection. It took 3 months to feel the side effects. As I was on a vegan diet at the time, it was devastating to my QOL - increased protein intake solved that problem. The side effects became more of a problem after a year and really bad after 18 months.
After 6 years of ADT with various agents - on and off, trying to counter the SEs, I prepared an information sheet with countermeasures that helped. Anyone wishing to get a copy in PDF format, please drop me a personal email.
Hope this helps. Lud
Steve Jordan - 10 Mar 2008 22:17 GMT On March 10, Lud responded to "skeptic":
> When you start Casodex, it is not known to have side effects I think Lud is a bit optimistic. Checking Casodex (bicalutimide) on www.rxlist.com will show a long list of SEs. Unfortunately, the SEs are related to combined Casodex and LHRH agonist (eg Lupron).
Checking http://www.drugs.com/casodex.html does present a list of SEs that appear related only to Casodex.
> .......... - it just > prevents the testosterone from reaching the prostate cells (including > the cancer) so your blood testosterone will rise and so will the > blocking hormone (SHBG). After the Lupron shot, your testosterone will > rise for 10 -14 days and then fall to castrate level at one month > after the injection. This is "clinical flare" and can be extremely dangerous, as the increased T will enrich the nourishment of existing PCa cells, with adverse effects that need not be explained.
It will be prevented by knowledgeable medics by use of Casodex for up to two weeks prior to beginning the LHRH agonist. See http://prostate-cancer.org/education/andeprv/Clinical_Flare.html which begins, "Clinical flare is a drug-induced bodily response that can cause such symptoms as bone pain, compression of a nerve root, spinal cord compression, or blockage of one or both ureters. It is often painful and always dangerous."
Searching the PCRI site for "clinical flare" will produce 15 hits.
(snip)
> After 6 years of ADT with various agents - on and off, trying to > counter the SEs, I prepared an information sheet with countermeasures > that helped. Anyone wishing to get a copy in PDF format, please drop > me a personal email. Or one can refer to the medical information available via my post on this group three hours ago, entitled, "Androgen Deprivation Syndrome."
HTH.
Regards,
Steve J
BH - 11 Mar 2008 00:04 GMT >On March 10, Lud responded to "skeptic": > [quoted text clipped - 3 lines] >www.rxlist.com will show a long list of SEs. Unfortunately, the SEs are >related to combined Casodex and LHRH agonist (eg Lupron). If Lud meant that there are no immediate side effects from Casodex, my experience would support that. If he really means there are no known side effects, my experience would definitely contradict that. For me, taking Casodex alone, the side effects became very damaging to my quality of life over a period of 6 - 10 months. As someone else said, they sneak up on you. I didn't realize how bad it really was until after I stopped taking Casodex and started feeling better - again over a few months.
As Steve J. pointed out, the published side effects are only for Casodex (bicalutamide) when combined with another drug. But, my experience is that no other drugs are necessary for Casodex to have plenty of side effects all by itself. But, all of us are different and can expect our side effects to be different, both in nature and severity. The only way to know is to try it. If it works and the side effects are tolerable, fine. If the side effects are not tolerable, one can always quit taking it.
Burney
Steve Jordan - 11 Mar 2008 00:16 GMT On March 10, BH replied to me:
> As Steve J. pointed out, the published side effects are only for > Casodex (bicalutamide) when combined with another drug. But, my > experience is that no other drugs are necessary for Casodex to have > plenty of side effects all by itself. Perhaps Burney overlooked the paragraph in my post.
Regards,
Steve J
Steve Jordan - 11 Mar 2008 00:20 GMT Correction.
I wrote:
> On March 10, BH replied to me: > [quoted text clipped - 4 lines] > > Perhaps Burney overlooked the paragraph in my post. I should have written: Perhaps Burney overlooked the NEXT paragraph in my post.
Steve J
BH - 11 Mar 2008 19:19 GMT >Correction.
>I wrote: > [quoted text clipped - 11 lines] > >Steve J No, Steve, I noticed. I placed my response after your post and addressed it to Lud in an attempt to indicate that I had seen it and was giving my experience in support. Obviously that didn't come accross on a different monitor being read by someone else - probably with a clearer mind. (I still have a fuzzy mind and memory problems. I don't know if that is a SE still hanging on or just my age - or both.) I should have just put my response after Lud's and commented that I had seen your post. I apologize for the confusion. RP in 1995 (age 52) RT in 2000 ADT (Casodex) 10/06 - 8/07 Latest PSA - 0.18
burney dot huff at mindspring dot com
Lud - 11 Mar 2008 15:02 GMT On Mar 10, 5:17 pm, Steve Jordan <mycrofts...@cox.net> wrote:...
> I think Lud is a bit optimistic. Checking Casodex (bicalutimide) onwww.rxlist.comwill show a long list of SEs. Unfortunately, the SEs are > related to combined Casodex and LHRH agonist (eg Lupron). > > Checkinghttp://www.drugs.com/casodex.htmldoes present a list of SEs > that appear related only to Casodex. ..........
> Regards, > > Steve J You are right Steve about the long list of SEs noted . Correcting my statement, I should have said that in the support groups I have not heard of anyone taking 50 mg Casodex have any SEs. I have taken Casodex 50 mg for 3 years and 150 mg for 2 years - it was only the 150 mg dose that produced breast pain and growth, mitigated by Dostinex. Casodex is used more often than the other anti-androgens as it produces less SEs. Lud
I.P. Freely - 11 Mar 2008 18:17 GMT > I have not > heard of anyone taking 50 mg Casodex have any SEs. I have taken > Casodex 50 mg for 3 years and 150 mg for 2 years - it was only the 150 > mg dose that produced breast pain and growth My vague recollection from three years ago is that 150 was the minimum dosage shown by studies to be effective. Although Google may clear that up, it quickly found claims that 150 mg is not as effective as castration and claims (by its manufacturer) that it *is* as effective as castration.
That's why I often refer people to Google rather than just citing a study or two in response to questions; that way they can do their own cherry picking, eliminate some studies inapplicable to their case, and/or maybe find some pertinent middle ground to plant their own seeds in.
I.P.
BH - 11 Mar 2008 19:23 GMT >On Mar 10, 5:17 pm, Steve Jordan <mycrofts...@cox.net> wrote:... >> I think Lud is a bit optimistic. Checking Casodex (bicalutimide) onwww.rxlist.comwill show a long list of SEs. Unfortunately, the SEs are [quoted text clipped - 16 lines] >produces less SEs. >Lud I'm thinking my experience is unusual, Lud, but 50 mg of Casodex, alone, really did me in with SEs. I took it for just over 10 months, then stopped because of the SEs.
Burney RP in 1995 (age 52) RT in 2000 ADT (Casodex) 10/06 - 8/07 Latest PSA - 0.18
burney dot huff at mindspring dot com
Lud - 13 Mar 2008 02:21 GMT > >On Mar 10, 5:17 pm, Steve Jordan <mycrofts...@cox.net> wrote:... > >> I think Lud is a bit optimistic. Checking Casodex (bicalutimide) onwww.rxlist.comwillshow a long list of SEs. Unfortunately, the SEs are [quoted text clipped - 28 lines] > > burney dot huff at mindspring dot com I am confused, Burney - you note that you were on androgen deprivation but you list only Casodex as a med - is this all the meds you had?
Androgen deprivation refers to suppressing the production of testosterone by Zoladex or Lupron or castration. If you were on Casodex alone, then it is called androgen blockade.
The studies for using Casodex alone were done using 150 mg dose. I know one person on this regime - he started this in 1998 (before the studies were published as he was a psychiatrist and contacted the investigators doing the study) and I knew that it was working for him for 3 years then I lost touch.
My second therapy was using Casodex 150 mg alone with Proscar (no Zoladex) was for 1 year only (Mar 02 to Mar 03) later adding on Zoladex. My experience was all positive except for breast pain and growth (female puberty) despite radiation to the breast prior to starting (radiation ineffectiveness has been noted by many patients). It reduced my PSA for just over 6 months and after nadir my PSA started to rise very slowly. At nadir, my blood tests indicated that my testosterone level was at the top of the reference range (RR), my DHT was above the RR (despite Proscar which did reduce my DHT by 60% but still ended up way high), my estradiol level was above men's high RR. Looking back on the readings several years later, I felt that the very high DHT probably overwhelmed the Casodex blockade.
Years later, news came out that Casodex at 150 mg caused other health problems and the studies were terminated.
Hot flashes occur when estrogen levels fall - with Casodex estrogen levels rise - I don't understand - there must have been other interactions occurring.
Lud
It
BH - 13 Mar 2008 17:56 GMT >> >On Mar 10, 5:17 pm, Steve Jordan <mycrofts...@cox.net> wrote:... >> >> I think Lud is a bit optimistic. Checking Casodex (bicalutimide) onwww.rxlist.comwillshow a long list of SEs. Unfortunately, the SEs are [quoted text clipped - 31 lines] >I am confused, Burney - you note that you were on androgen deprivation >but you list only Casodex as a med - is this all the meds you had? Yes, that's the only med I was on.
>Androgen deprivation refers to suppressing the production of >testosterone by Zoladex or Lupron or castration. If you were on >Casodex alone, then it is called androgen blockade. I was under the impression that the term Androgen Deprivation came from depriving the cancer cells of testosterone, and whether that was caused by preventing the production of testosterone or blocking the absorption of testosterone (or both), it was all "androgen deprivation". If I have been wrong and I should be using the term "blockage", then I'll stand corrected and use the other term. But, is it a distinction without a difference?
>Hot flashes occur when estrogen levels fall - with Casodex estrogen >levels rise - I don't understand - there must have been other >interactions occurring. You may be right about some other interaction occuring, but I don't know what that might have been. l just know hot flashes was one of the first side effects I noticed. They were really annoying for a couple of months, then seemed to decrease in frequency and severity.
A problem is that side effects of Casodex are usually listed only when it is used in combination with something like Lupron. Steve Jordan provided a link, above, to a site tha
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