Medical Forum / Diseases and Disorders / Prostate Cancer / June 2007
HT one month without
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colophony - 14 Jun 2007 15:40 GMT I had my last shot of Lupron/enantone on the 10th of february 2007. I used one shot every 3 months for nine months. Now doctor says to stop for a while and monitor next PSA tests: wondering: I am still getting hot flushes several time a day with perspiration while during night there is no perspiration.(please note that I live in Rome and temperature it is quite hot now) but this happens also at home with air conditioning. Does it sound familiar to those who had same treatment or am I on different road? Colophony
Alan Meyer - 15 Jun 2007 00:58 GMT > I had my last shot of Lupron/enantone on the 10th of february 2007. I used > one shot every 3 months for nine months. Now doctor says to stop for a while [quoted text clipped - 4 lines] > Does it sound familiar to those who had same treatment or am I on different > road? Colophony I had the same experience. I had only had four months of Lupron, but it took five months after the last Lupron injection for the testosterone to begin to come back and about six months before it returned to normal. How long it takes depends on your physiology, your age, and the length of time you have been on the drug.
I was told by my radiation oncologist that any rise in PSA would take some time _after_ the testosterone level came back to normal. If your PSA rises, it may not happen until August or September. The longer it takes, the better. Best of all would be if it never rises at all.
Good luck.
Alan
I.P. Freely - 15 Jun 2007 02:54 GMT > I had my last shot of Lupron/enantone on the 10th of february 2007. I used > one shot every 3 months for nine months. Now doctor says to stop for a while [quoted text clipped - 4 lines] > Does it sound familiar to those who had same treatment or am I on different > road? Colophony How old are you? What's your current testosterone level? The risk of lingering or even permanent T suppression, thus SEs, was on the minus side of my ADT pros and cons. That risk increases with age, and its trigger is lack of T rebound.
I.P.
colophony - 15 Jun 2007 09:53 GMT I am 62 and on may 12th the testosterone was 0,18. Colophony
>> I had my last shot of Lupron/enantone on the 10th of february 2007. I >> used one shot every 3 months for nine months. Now doctor says to stop for [quoted text clipped - 11 lines] > > I.P. I.P. Freely - 16 Jun 2007 02:58 GMT > I am 62 and on may 12th the testosterone was 0,18. There ya go. Most ADT SEs are actually low T SEs, including hot flashes. assuming your T is measured on the scale on which normal is 8.0 (nmol/L), a study at http://www.ingentaconnect.com/content/bsc/bju/2006/00000097/00000005/art00016 says this: "In all, 20 men were recruited, with a mean (range) age of 70 (55–81) years. Defining a normal TT level as ≥ 8.0 nmol/L, the median time to a normal level was 2.3 years (95% confidence interval (CI), 1.9–4.2). According to that, give it at least a couple of years and you may recover . . . just a little something else our docs fail to tell us, especially when they're pitching intermittent ADT.
Oh, those darn docs.
For much more info, Google male andropause testosterone and related terms.
I.P.
Bob C. - 15 Jun 2007 03:54 GMT > I had my last shot of Lupron/enantone on the 10th of february 2007. > Does it sound familiar to those who had same treatment or am I on different > road? Colophony The first time I went off Lupron was after 12 months and the hot flashes and night sweats diminished, but never went away fully. Then after 24 months back on Lupron, and then going off again, the hot flashes are now minimal as are night sweats. A trigger (hot stuffy room, stress, something like that) might trigger a very mild hot flash but there are no more of these monsters that come out of the blue for no reason at all. The night sweats are gone as long as I have cool fresh air, or a slight breeze from a fan.
Not only are we and our cancers and SE's all different, my experiences when going off Lupron were different the first time from what they are this time. If I look over my shoulder I think I see you somewhere way back there traveling "my" road. Enjoy your off time, and if/when you go back on, this time you know what to expect.
colophony - 15 Jun 2007 10:09 GMT does it mean that hot flashes depend on testosterone's level? the higher level less hot flashes? Please, you have such a big confidence with these SE, clarify to me Colophony
>> I had my last shot of Lupron/enantone on the 10th of february 2007. Does >> it sound familiar to those who had same treatment or am I on different [quoted text clipped - 14 lines] > there traveling "my" road. Enjoy your off time, and if/when you go back > on, this time you know what to expect. Bob C. - 15 Jun 2007 15:10 GMT > does it mean that hot flashes depend on testosterone's level? the higher > level less hot flashes? > Please, you have such a big confidence with these SE, clarify to me > Colophony I believe you are right about the link between "T" and hot flashes and some of the other SE's, but these were just my own personal experiences while going on and off Lupron. I am one of the ones who got pretty major SE's while on Lupron, but then all my life I have been sensitive to the effects of any drug and minimal dosages of a drug, such as aspirin, would do the trick for me. Again, we are all unique, and it sounds like our cancers are too, to some extent.
I have learned other things about my SE's, but these may or may not apply to you. I have learned through hours of pricey neurological testing that my cognitive abilities are very high, but I have acquired something like an attention deficit and will likely not remember something unless I focus on it. Multi-tasking is very difficult and easily results in confusion. It is difficult to complete tasks, it is easy to get lost in thought and deed way beyond the "where did I put my car keys" problems we all have at times. I'm talking about sitting down to make a spreadsheet and an hour into the project, accidentally finding it already built and saved somewhere. The list is longer, but it's not certain which of these attributes are directly or indirectly due to Lupron and "T". Stress and anxiety can have major effects on how the brain works and they say are likely factors in some of this. When you spend minutes trying to remember the word you wanted to use, who can say which of the above caused it. I was amazed at how these tests pulled information from my mind, how much they revealed to the clinical neurologist, and I sat on the edge of the seat of my chair intent on answering questions, doing the task, completing the picture, and so on.
Sorry for rambling on, and this does not answer your question or clarify anything. We all are pretty much aware of the possible SE's including hot flashes, weight gain, muscle loss, night sweats, mood glitches, loss of body hair, high cholesterol, and the list goes on and on. Most of these are visible and fairly obvious. It appears to me that the mental and not so obvious effects of these drugs are largely unknown to most doctors. I think it was kh who mentioned something about losing creative ability and organizational ability, and others have said similar things, and I have seen this in myself. I am pretty sure you will not find that in any text book yet.
I have to ramble again. New thought. I recall, the first time on Lupron, how I could see how my thought process had changed. Maybe it was the first time ever lack of sexual undertones, maybe it was the lack of male aggressiveness, or depression, who knows, but I definitely looked at most things in a different light. Now I am done. I hope this helps a little, rather than hinders!!
colophony - 15 Jun 2007 16:08 GMT thanks Bob for your nice words; eye glasses and car keys hare forgotten by anyone I know with or without lupron: what concerns me are the ED and the hot flashes. For the colesterol I take simestat one pill a day and for gaining weight I should ask my wife to cook smaller portions. Hair loosing it is not a problem for me I could not care less. Let's hope that within 5 or six months I will post a different query because the 2 I mentioned are solved. Colophony
>> does it mean that hot flashes depend on testosterone's level? the higher >> level less hot flashes? [quoted text clipped - 45 lines] > most things in a different light. Now I am done. I hope this helps a > little, rather than hinders!! I.P. Freely - 16 Jun 2007 04:45 GMT > I have acquired > something like an attention deficit and will likely not remember [quoted text clipped - 6 lines] > certain which of these attributes are directly or indirectly due to > Lupron and "T". Oh, it's pretty well understood. Google male andropause testosterone. I just wasn't willing to give all that up for years to gain a few months' extra breathing.
> It appears to me that the mental > and not so obvious effects of these drugs are largely unknown to most > doctors. I think it was kh who mentioned something about losing creative > ability and organizational ability, and others have said similar things, > and I have seen this in myself. I am pretty sure you will not find that > in any text book yet. I've discussed and referenced all that and more several times. It's readily available in extensive peer-reviewed studies and lay literature (e.g. Diamond's "Male Menopause"), in my oncology board-reviewed summaries posted here, and in anecdotal reports of similar SEs in our forum poll since early '05. Perhaps some of you are actually believing Steve Jordan's repeated and unexplained dismissals of Strum's ADT SE discussions and its implications, his oblivious assessment of his own devastating ADT SEs, and his and others' variously-worded accusations that I'm an SE alarmist despite my lengthy lists of acclaimed sources and the horror stories posted in this forum. This is a risk people take when they pay attention to baseless ad hominem rather than extending their research back to the source data I and others have posted here.
Sorry if this conjures up Steve's vendetta again, but, dammit, I'm far more concerned about you folks' welfare than about his ADT-addled sensitivities; he's the forum's problem now, not mine. You folks *must* help me encourage people to do their own extensive ADT research before taking their doctor's or Steve's dismissals of ADT as a necessary, manageable nuisance (no, that's not a quote, but it's an honest summary from the archives) for people whose PC has not returned beyond a doubt.
Yeah, folks, I'm angry. Get over it. Your well-being, health, mental capacity, careers, families, friends, even sanity are at stake in some cases. You can tiptoe around this issue just to keep Jordan quiet, or you can face it head on and prevent a great deal of unnecessary and/or unanticipated misery reported by men told to accept ADT just in case.
If anyone wants to challenge my ADT SE posts over the past 30 months, please do so. Just realize ad hominem does not hold water; meaningful rebuttals must cite sources that outweigh the many I have cited, including Strum, and the ever-increasing newer studies and expert opinions reported right here indicating that ADT is vastly oversold and underexplained by physicians.
I usually rewrite blasts like this before hitting SEND. Screw that. There's too much at stake, and pussyfooting obviously isn't getting the job done.
I.P.
Steve Jordan - 16 Jun 2007 05:23 GMT Mike Freely blathered:
(snip)
>........Perhaps some of you are actually believing > Steve Jordan's repeated and unexplained dismissals of Strum's ADT SE [quoted text clipped - 4 lines] > when they pay attention to baseless ad hominem rather than extending > their research back to the source data I and others have posted here. When the hominem lies, it's my duty to call attention to it. Mike has told at least two lies in the above paragraph. He is shameless.
Freely quite, er, freely lies.
> Sorry if this conjures up Steve's vendetta again, blah blah blech
Don't take Saint Michael's word for anything unless he proves it. He claims to do so, but does not.
(snip balance of screaming tizzy bitch-fit)
Some months ago, he had another tizzy and demanded that somehow a posse be formed to run me off the NG, mainly because I don't agree with his chicken-little squawking. Then he plonked me. Or claimed that he did. Gee, what an unbearable punishment.
Ho Also Hum.
Regards,
Steve J
"His simple word is worthless; and to embellish it with his oath would merely make it picturesque, not valuable." --Mark Twain
Bob C. - 16 Jun 2007 13:48 GMT > > The list is longer, but it's not certain which of these attributes are >> directly or indirectly due to Lupron and "T". > > Oh, it's pretty well understood. Google male andropause testosterone. IP, I guess what I meant to say was that this list of SE's is growing, and tho it is known that specific SE's are from the lack of "T", there are SE's directly from the Lupron as well and as more guys are on the stuff longer, more SE's are being identified.
I
> just wasn't willing to give all that up for years to gain a few months' > extra breathing. It appears that in the earlier stages of PC, and when there might be a chance of a cure for an individual, the hormone therapy route can/may be of benefit. To some. It appears to be a different case once it's progressed to where no cure is possible. It appears that in some cases HR may buy some time, in many cases no. I do not pretend to have any answers, I wish I did.
>> It appears to me that the mental >> and not so obvious effects of these drugs are largely unknown to most >> doctors. I am pretty sure you >> will not find that in any text book yet. > > I've discussed and referenced all that and more several times. and in anecdotal reports of similar SEs in our
> forum poll since early '05. And we all continue to learn. I am surprised at you, I.P., referring to anecdotal reports though! What I learned about hormone therapy in 2001 differs from what one would learn in 2005, and is different from what one would learn today. For example, how long has the term "chemo brain" been in use?
of ADT as a necessary,
> manageable nuisance In the beginning days of my battle with this disease, MY frantic research was confined to reliable sources, i.e. the major medical establishments, and my own doctors, urologist, and oncologist. I stayed away from anecdotal sources, stayed away whenever I could see any conflict of interest, stayed away from every Tom Dick and Harry who knew of this juice or that extract which I should try. I got really pissed more than once when after getting excited about some magic bullet I had found, I then dug deeper and uncovered the BS it was based on, or the financial gain to be made by the owner of this great magic bullet. The educated decisions I made were based on information which was supposed to be reliable. At that point in time.
With the passage of time, I can see the shift in what is believed by my own doctors. Well, they maybe were not right before in viewing ADT as "a necessary, manageable nuisance", but they may not be right now either.
> Yeah, folks, I'm angry. Me too I.P., me too, but not at the educated and well intentioned posters on this site. Until something is proven beyond any doubt, educated men will come up with differing ideas and being 180 out of sync with the majority does not make one wrong. If we were all of the same opinion, now that would suck. Unless that one opinion was based on absolute fact and was 100% correct for all. What I get angry about is constantly hearing about all the great advances being made, even for prostate cancer, and then look at the reality of it and see us still relying on ADT, a treatment that's been around longer than I have. A tweak here and there in dosage, timing, I am not impressed with all this progress made so far.
What I have learned myself, is that ADT for Advanced PCa can delay the onset of cancer related symptoms, can delay the progression of the disease, but does not change the time to death. I believe you can live with the SE's of the ADT for 3X amount of time and then the SE's of advanced cancer for X amount of time, or you can live with a higher quality of life for X(?) amount of time (no ADT) and then the SE's of disease for a possibly much longer percentage of what lifetime remains. The day of judgment probably did not change much if any, it's just what you yourself will go through to get there.
I greatly value the differing opinions expressed here and hate to see anyone leave the group for any reason. This is one of the few tools we have at our disposal, easy to access for information, for opinions, for help, for venting, whatever. Thanks for blasting away!!!!
I.P. Freely - 17 Jun 2007 04:50 GMT > as more guys are on the > stuff longer, more SE's are being identified. Could be, but I haven't seen any new ones mentioned since I dug into it 30 months ago.
> It appears that in the earlier stages of PC, and when there might be a > chance of a cure for an individual, the hormone therapy route can/may be > of benefit. Yup; those few months, plus more recent studies hinting -- and that's all those two did . . . hint -- that in special cases certain specified individuals may average an extra 13 months.
>>> It appears to me that the mental >>> and not so obvious effects of these drugs are largely unknown to >>> most doctors. I am pretty sure you >>> will not find that in any text book yet. I don't know about medical text books, but it's in all the the other sources I mentioned and then some. Our doctors need to get their heads out of the text books they read 10 or 30 years ago and keep up with current knowledge, trends, and concerns. They can't prescribe something based on a trend, concern, or even a couple of peer-reviewed studies, but neither can they conscientiously (or even legally, I'd guess) just tell some guy fresh out of an RP with zero PSA, "Take these shots for a couple of years in case they might cure you. If they bother you, we'll fix you right up with other meds."
> I am surprised at you, I.P., referring to anecdotal reports though! It's all some folks hang their hats on, and in this case it reinforces what appears to be reality, so I see no harm. And I still believe valid anecdotes are often valuable as proof of negative absolutes.
> What I learned about hormone therapy in 2001 > differs from what one would learn in 2005, and is different from what > one would learn today. For example, how long has the term "chemo brain" > been in use? I haven't heard that specific term, but the mental effects of andropause, whether caused by chemical, surgical, or natural T cessation, have been recognized and discussed for years and expressly likened to early stage Alzheimer's by the OHSU in their studies, cited here.
> MY frantic research was confined to reliable sources, i.e. the major medical > establishments, and my own doctors, urologist, and oncologist. I stayed [quoted text clipped - 6 lines] > educated decisions I made were based on information which was supposed > to be reliable. Same here, as evidenced by the sources I've listed so many times.
> I.P. wrote >> Yeah, folks, I'm angry.
> Me too I.P., me too, but not at the educated and well intentioned > posters on this site. Same here. I was initially angry at the *posters* of baseless ad hominem, but soon recognized that their behavior is *their* problem, not mine, and now fret only over its impact on the forum, not its messengers, be they patients here or brand-name oncologists "out there". My anger is at the ever-more flagrant and frequent impact of their dismissal of the therapeutic index of ADT on non-recurrent PC pts. I'm also disappointed by the forum's silent tolerance, thus encouragement, of ad hominem. It must confuse, mislead, and/or drive off some, maybe many, newbies. We can't do squat about BobandCarole other then get them tossed off their ISPs, but we should be able to have some influence on our departures from rationale, relevant, impersonal discourse. Even when I so blatantly labeled Steve years ago, I explained very clearly why it was accurate and why his behavior made the accusation and its specific wording necessary, and cited sources proving same.
> Until something is proven beyond any doubt, > educated men will come up with differing ideas and being 180 out of sync > with the majority does not make one wrong. No, but denying all the studies, constantly thumping a specific PC reference as the gold standard while contradicting it, flatly and repeatedly refusing to discuss *why* they contradict their own gold standard, and employing ad hominem despite their demonstrated education and (usually) good intentions.
> I am not impressed with all this progress made so far. My onc gave me a timetable for anticipated fruition of ongoing studies in three specific new PC technologies, including immunology, nanotechnology, and one or two others. Their horizons are imminent, ranging from 2 to 7 years IIRC (posted here last year). He wallows in this stuff and is a close personal friend of and professional associate with some of the cutting edge names in prostate oncology, such as the Dendreon (think Provenge) CEO.
> What I have learned myself, is that ADT for Advanced PCa can delay the > onset of cancer related symptoms, can delay the progression of the > disease, but does not change the time to death. I recall mean TTD extension figures more like 6-8 months -- 13 in certain scenarios -- but with a very broad standard deviation and a significant risk of high QOL price.
> I greatly value the differing opinions expressed here and hate to see > anyone leave the group for any reason. This is one of the few tools we > have at our disposal, easy to access for information, for opinions, for > help, for venting, whatever. Thanks for blasting away!!!! I'm dismayed it came to that, but we've seen too many cases of ill-advised-patient ADT horror stories and oncologists ranting about same to ignore the lack of open open dialog on ADT's pros and cons. I believe we would all benefit if Steve would a) tell us why he so strongly denies the limited efficacy and applicability and the significant potential for additional cascade of SEs (Google them) of the anti-ADT-SE drugs Strum lists, b) explain how being forced to sleep away half his waking hours and behaving like a child are successful management of SEs, and c) quit polluting our forum with his baseless attacks on the messenger. But that's not likely until and unless (if then) more of you ask him to replace the ad hominem with supported facts and cancer-related opinions, as he is so capable of when not blinded by anger.
It's apparently that, or live with and encourage his stupid vendetta. I've solved the vendetta issue in my world; but its presence denigrates the forum and harms ADT victims (i.e., those who accept ADT without researching it and suffer unnecessary consequences).
I.P.
Steve Jordan - 17 Jun 2007 05:24 GMT On June 16, Mike Freely wrote:
(ka-snippity)
> I believe we would all benefit if Steve would .....and so on, blah blah blah. As if he has a direct line into my daily life and thought.
BTW, he actually appropriated the term "ad hominem" from me some time ago. Not that I begrudge him a bit of education. He needs it.
Pitiful, actually. The poor fellow seems to believe that he's The Source of All Wisdom. And anyone who has a viewpoint divergent from his is guaranteed to be attacked.
But he's an easy target. I don't spend a lot of time on him; just enough to fulfill my entertainment quota.
Regards,
Steve J
"His simple word is worthless; and to embellish it with his oath would merely make it picturesque, not valuable." --Mark Twain
kh - 16 Jun 2007 11:42 GMT > .... I think it was kh who mentioned something about losing creative > ability and organizational ability, and others have said similar things, > and I have seen this in myself. I am pretty sure you will not find that > in any text book yet. I did have all the side effects but what bothered me most was the fogginess in the head. I work as a software engineer, on code. I don't "do meetings". I'm a guy who builds the stuff that makes machines work.
I could not follow long logic chains about the 3rd month on Lupron. By the 5th month, I noticed that I was struggling to type my password. It wasn't that I couldn't remember it (which was also a problem), it was that the unconscious, automatic, coordination was failing. I should be able to rip these letters and numbers off because I do this a dozen times a day. My fingers were fumbling.
Driving became weird too. I'm a very "clear" and alert driver. Always aware of the flow of traffic around me, the sound of my tires, engine speed, thumbs locked on the steering wheel.
About the time I noticed the problems with my password, I was feeling "disconnected" from my car. Driving became more difficult.
Hot flashes? So what. Just get where it's cool. Joint pain, that was a problem but a little pain killer goes a long way. The blood sugar and the triglycerides were a real concern but I have a baseline blood panel and will handle those as they come up. I'm also 25 pound lighter now so that should help.
Lupron is a deal with the devil but with a PSA doubling time of (what was it Steve?) 3 months and a PSA of 60, with the tumor strangling my air and blood flow, I had to make that deal.
-kh
Lud - 17 Jun 2007 14:19 GMT HI Bob
I am in the same boat of SEs that you have - drugs seem to affect me more than normal and smallest doses are to much. Being on treatment for over 8 years now, I have been through several cycles as follows: 2 years ADT with Zoladex, 1 year off, 1 year of HDC (high dose Casodex = 150 mg), 2 years ADT with Zoladex + IMRT radiation, 1 year TDE (transdermal estradiol patches 100mcg x 6), 1 year partially off and 3 cycles of Taxotere and now LDK + HC (low dose Ketoconazole 200 mg x 3 with Hydrocortisone 20 mg + 10 mg).
My worst side effects were from the Zoladex Txs - in the sequence that encountered them:
1- Before starting Zoladex I had been on a vegan diet for 3 months and felt really great - 3 months after starting Zoladex, I was totally depressed and feeling very suicidal. I dug out that hole buy having some protein every 2 hours ( I tried several anti-depressants and they only made me groggy.
2- Luckily I did not have any major hot flashes - I believe they are caused by declining estradiol levels but not everyone is susceptible.
3- Mental impairment was a major problem for me - short term memory, ability to multi-task or keep track of more than 1 idea were all gone over time. Only years later I found how to manage these to some degree by using a 50 mcg estradiol patch, having more protein and higher fat diet.
4- Emotional and psychological impairment also kicks in and seems to be affected by diet - but after 18 months I found it totally down, crying, fear etc. Estrogen patches do help.
5- Bone loss starts with the estradiol decline, I was on Fosamax for 4.5 years and then on Zometa - it kept the bone density from declining.
6- Muscle tone loss - turned soft from lack of testosterone - exercise would have helped but the mental will was not there.
6- The side effects became worse after 18 months and at 2 years of treatment, I felt like a vegetable - I existed but was not able to do much - I was so desperate that I had to stop Zoladex.
7- Must comment on the sexual SEs - yes libido was totally gone but with manual stimulation and greater effort it was still possible to have an orgasm, dry of course and not the sensation.
8- HDC had minimal side effects, only problem was that PSA control did not last long. Looking back, my testosterone was high normal range, my serum estradiol level was above men's high range and my DHT was way above normal range despite being on Proscar and probably the cause of PSA failure.
7- Estradiol patch therapy was a JOY - most debilitating SEs of Zoladex were not there and I could out-argue my wife for the first time. The emotional and mental changes due to the high testosterone and zero testosterone were very interesting - I found I was thinking and feeling differently than as a man or a eunuch. It was not a bad experience. Unfortunately it did nothing for HRPC control.
8- Must add the SEs from the Keto Tx- 3 weeks on and the SEs are more tolerable than Zoladex, it remains to be seen how it progresses. Great news is that it is working against HRPC.
Over the years I have asked many patients about their side effects and found that very few men admitted to having mental and emotional problems from ADT, yet their wifes all said they had some. I hope men would come forward to tell about their SEs and more importantly that we all work at finding ways to counter these side effects. I hope this helps someone.
Lud
> I believe you are right about the link between "T" and hot flashes and > some of the other SE's, but these were just my own personal experiences [quoted text clipped - 40 lines] > most things in a different light. Now I am done. I hope this helps a > little, rather than hinders!! Bob C. - 17 Jun 2007 15:53 GMT > HI Bob > > I am in the same boat of SEs that you have - drugs seem to affect me Lud, thanks for a very detailed and analytical account of your trip down this road with the rest of us here. Yes, hearing from you does help. A lot. You have gone through numerous treatments and it is very helpful to see how another person is fighting his battle, to see his progression of treatments, and to hear the effects of each. We do not have some gold standard of detailed, itemized treatments to pursue depending on where we are with our cancers.
You have been fighting this battle for a year plus longer than I have. I guess that I am now at a new category of crossroad. The past decisions made at the RRP, EBRT, ADT, crossroads were (right or wrong) based on percentages, the odds, what's the standard (of the day), a balance between known SE's versus possible gains. Now all of a sudden the crossroads seems to have choices based on enie-meenie-minie-moe. There are still some "standard" things to try next, but there is new stuff too, two different promising Immunotherapy trials, another drug in in Phase III that's supposed to be far more effective that Casodex, and a pile of others that have not caught my interest. Yet. And the clock is ticking.
My onc does not feel that going back on Lupron and adding Casodex will do anything for me, but says it's worth a try and then we can go to Keto if/when. If I am gong to try to get accepted into any kind of trials, it's best to figure it out now rather than after going back on something. I have been off Lupron for---?----good memory here----quite a few months now. Long enough to enjoy new found energy!!! And to have a familiar thought process returning.
Your comment about feeling and thinking differently while living with low T sure rung a bell. No, it was not a bad experience, but it sure was a different one. It was like having stepped into someone else's life and seeing almost everything through different eyes.
Anyway, thanks for your account.
I.P. Freely - 17 Jun 2007 21:41 GMT > 5- Bone loss starts with the estradiol decline, I was on Fosamax for > 4.5 years and then on Zometa - it kept the bone density from > declining. That's great that you were able to take Fosamax, considering that something like half the population at our age cannot take Fosamax or most other bone density preservers due to its interference with GERD or even lesser gastrointestinal problems.
> 6- Muscle tone loss - turned soft from lack of testosterone - exercise > would have helped but the mental will was not there. > > 6- The side effects became worse after 18 months and at 2 years of > treatment, I felt like a vegetable - I existed but was not able to do > much - I was so desperate that I had to stop Zoladex. Don't feel alone in that decision; it's not rare even among men with advanced mets. An acclaimed oncologist said from his seat on an international oncology panel discussion that his ADT SEs were so severe he had abandoned his ADT because its SEs were worse than what he faced from his PC mets. Some others in this forum also did that. It's a decision each man must face after his initial treatment fails, a choice very few others are qualified to question.
> 7- Estradiol patch therapy was a JOY - I could out-argue my wife for > the first time. Then they're missing a *huge* market for the stuff. ;-) Of course, the rest of the market has to consider who controls (most of) their sex life.
> Over the years I have asked many patients about their side effects and > found that very few men admitted to having mental and emotional > problems from ADT, yet their wifes all said they had some. I hope men > would come forward to tell about their SEs and more importantly that > we all work at finding ways to counter these side effects. I hope this > helps someone. Science and the FDA have a greater medical impact on countering the SEs, but starting right now we patients can have an impact on their burden, beginning with open discussion of them among ourselves and an outcry to our physicians to do the same. Every time I see yet another patient describe his unexpected SE nightmare here or read from yet another oncologist or study that physicians are downplaying or even ignoring ADT SEs, my neck hair bristles because this situation could be significantly improved with more open dialog, especially if that dialog didn't trigger personal attacks on the messenger. OTOH, those attacks *do* serve one positive end: they demonstrate all too clearly the mental and emotional deterioration many men encounter with ADT, as shown by OHSU's study thereof (Google such terms as OHSU androgen hormone prostate early Alzheimer's for many relevant discussions).
I.P.
PCAinAZ@gmail.com - 15 Jun 2007 16:45 GMT Hi Colophony, The origin of hot flushes remains unknown. Some experts believe that a decline in hormone concentrations (both in men and women) might cause alterations in brain neurotransmitters and instability in the hypothalamic thermoregulatory setpoint. This seems to be a possibility as many men who have undergone hormone suppression and recover normal levels of testosterone notice a cessation of symptoms. Testosterone recovery is a variable issue. Depends mostly on the suppression time, age of the patient and pre-suppression testosterone levels.
Hope that you recover nicely during this off-cycle period. Wish you the very best outcome!
RalphV pcainaz.org/phpbb
> I had my last shot of Lupron/enantone on the 10th of february 2007. I used > one shot every 3 months for nine months. Now doctor says to stop for a while [quoted text clipped - 4 lines] > Does it sound familiar to those who had same treatment or am I on different > road? Colophony Steve Kramer - 15 Jun 2007 23:28 GMT > RalphV > pcainaz.org/phpbb Ralph,
I see you here from time to time providing great insight into our disease and helping people out. I tend to forget that you have the disease yourself and your case is inspiring as well -- Since 1992?
But, I don't think you have talke about it here for almost two years.
How are things going for you?
 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 (06/12/2007) Non Illegitimi Carborundum
Bob C. - 16 Jun 2007 12:33 GMT > Steve, congrat's on your latest numbers!!!
PCAinAZ@gmail.com - 16 Jun 2007 16:48 GMT Hello Steve, You are correct. I was part of the group of survivors that started this NG in the mid 90s. Dr. Brad Hennenfent was part of that effort. My prostate cancer trip started in 1992. In April 1992, I was like most of my male contemporaries, totally oblivious of prostate cancer or its significance. I had just experienced an episode of frequent nocturnal urination, which I attributed to an infection. Then out of the blue, I was tested for PSA and scheduled for a biopsy when this result came back abnormally high (13.6 ng/ml).
The 6-core biopsy came back positive. All cores were positive. The positive diagnostic result hit me hard as all these events developed rapidly and I was dreadfully unprepared to deal with the disease. Had a radical prostatectomy and was told that much of the tumor was left behind. My hospital stay was 23 days for this surgery. Was told that statistically I had 3 to 4 years left to live. Depressed as I was by such news I decided to study and learn as much as I could. I felt I could not afford to be depressed and my survival ticket depended on learning about the disease and being involved in the advocacy movement that was starting at that time. Do not ask me how or why I am still here. If I had to explain it, I would give credit to debulking the tumor with the RRP and then immediate hormone suppression with the orchiectomy. After seeing many men die, I recognize that I have been lucky. This is anecdotal, but it is all I have to go by.
I do believe that getting involved in helping others survive has helped me survive. PCa advocacy has driven me hard. I have some of the SEs all males dread but, I am trying to avoid a PCa death. To me the ultimate PCa SE is death from the disease. I do all I can to avoid that!
Thanks to venues like this and many others men have a better opportunity to be more informed of the PCa risk. Still we see many men who go out of the way not to be informed. It is sad, but it is a reality. As my physical limitations demand I am now more involved locally in Arizona. We started a website and bulletin board with the purpose of increasing networking among the Arizona USTOO support groups. Progress has been slow, but we continue to persevere as long as we can.
Here is a short medical history:
Dx: 5/92 at age 58, PSA 13.6 ng/ml(first PSA ever), Gleason 5 (3,2), 6 out of 6 positive biopsy cores, T2c, DRE +, Neg. Bone scan, Neg. CT scan, Neg. bladder pyelogram, Neg. chest x-ray,
Tx: RP 6/92, Gleason 6 (4,2), T4, Bilateral SV +, positive margins, tumor attached to rectum wall, Bilateral orchiectomy 9/92, PSA <0.2 ng/ ml since 9/92;PSA 9/05, <0.03 ng/ml, DPC assay; PSA 3/06, <0.1 ng/ml, Abbott; Last PSA 3/07, <0.1 ng/ml, Bayer assay.
...and that Steve is an update of my PCa trip. As you can see I have experienced an UD PSA since 1992. For that I am grateful. Wish you and all participants here the very best of health.
RalphV pcainaz.org/phpbb
> <PCAi...@gmail.com> wrote in message > [quoted text clipped - 10 lines] > > But, I don't think you have talke about it here for almost two years.
> How are things going for you? > [quoted text clipped - 10 lines] > PSA <0.04, <0.05, <0.04 (06/12/2007) > Non Illegitimi Carborundum Steve Jordan - 16 Jun 2007 18:57 GMT On June 16, Ralph Valle wrote:
A brief history of his struggle with our disease.
It is an inspiration to us all.
Most certainly to me and to the myriad brothers he has helped and continues to help every day.
Regards,
Steve J
"Never -- never -- never give up! Never go gently. There will be plenty of gentle after we die, so until then, fight! Control the rhythms and tempo of the dance, even when you have to let the PCa dancing bear lead for awhile -- even when you have to wear the lead suit as you dance -- never let the bear set the rhythm and tempo of your dance with life -- when the bear finally takes control, it will be a very hollow feeling for him, because I will be gone -- dancing in a better place." --E. B. (Burns) Mixon, PCa survivor, June 14, 2005 on The Prostate Problems Mailing List Thank you, Burns. Live long and prosper.
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