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Medical Forum / Diseases and Disorders / Prostate Cancer / September 2006Can someone(s) tell me what you feel like on Lupron ?
Hello Everyone, I hve been able to stay away from this group for a long time. Now I have decided to come by again I tried to find an answer for my question, but eventually gave up. My doctore, a urologists, would care less that this concerns me. Tonight, this is my third or fourth draft of this post, after searching tfor the answer to this quesiton.. My uruologist has been saying, for two years, that I should take lupron and casodex because my PSA went up from "undetectable" to x, x, x ... I used to keep track, but lost the results most of the time. Now my PSA is 6. ? and he said the removed tumor had a Gleason score of 9. Today, he said I will be dead within five years without treatment, but I still am not convinced enough to take the shot of lupron and become a "castrati." I had lupron before at John Hopkins famous prostate treatment center as I was going to have a radical prostectomy done there. I canceled the day before the operation, after my long search for a doctor who did the new (in the USA) micro-surgery in a minimal invasive operation using remote and tiny instruments. This had been pioneered in Paria by a French doctor. I was ready to go there too, as the hospital had a program for foreigners all set up. This operation seemed (and is) light years better than the bloody one normally done with an incision from belly button to penis. The recovery time is a few days, not months and side effects are much less. So I opted for the change, even though I would be this doctor's first live human patient for this method. Normally he did the old style and told me if he could not finish with the new, he would have to use the old. Well, the lupron shrunk the prostate so small he could not get the remote miniature instruments around it to do the necessary cutting. I came back to consiousness and ended up in the critical care unit for about a week and in all the pain I tried to avoid. I was glad to finally get out and home where I stayed home and my teen daughter helped me the best she could. I was glad that I at least tried to avoid this and eventually got over all the most miserable side effects, went back to work, used the gym, swam while trying to hold my water and eventually felt pretty good. I was good PSA-wise too at "indectible" To make this long story a little shorter, the PSA results starting coming back and have continued until today where I have 6 + something. My original urologist left to go to another teaching hospital and the new one had his needle out ready to stick me with Lupron and casodex. Before he could do this I walk over to the cancer center. There an oncologist said there was no need to be taking anything just for a number. He had bone scans and a CAT scan done, that showed nothing. He continue to say that the PSA score was a number and did not need treatment. He had patients with PSAs in the hundreds (or maybe thousands). This is at the same excellent hospital where the urologist is telling me some completely different and who is now pissed off. Pissed off that I went to see this other guy and stopped taking Casodex that he had managed to slip past be. Now the oncologist is gone, I still have no sign of cancer, but a PSA of 6.something. The urologist is chomping at the bit, but I am suspicious that he is wrong, even if he is a good surgeon. He goes by the book. My internal debate is --- I am now just a month into age 72, my family is very long lived and I expect to live to my mid nineties, I live alone, don't have much T anyway (my family doc is a woman with a sense of humor and she laughed when I said I did not want my T taken away. She said, "you don't have any, anyway." "Your young, get the hormone treatment, you don't want to get bone cancer." I say, I know what I remember feeling during the time when lupron was in my system and killing my "manhood!" and now this urologist wants to make it permanent FOR LIFE. He admits I will have not interest in sex and seems to care less than we care about neutering out pet dog or cat. Heck, I think about sex all the time and wish this guy had been better at helping me with the ED, then he was. I really thought I wanted to live to at least 95 since my mother was 98 and living on her own when taken to a hospital after she just seemed to decide it was time to go. I do not feel it is my time to go and that I am gone without SEX or without life. I have not even given up hope of marrying a younger woman or at least living with one in Latin America or Russia. I know it sounds nuts, but I miss that and had the John Hopkins doc explain how I could still father a child since the sperm is still produced, just not launched. For years I have been treated for major clinical depression and this makes me feel much worse even with the drug for that. Maybe only "escorts" will love me but at least I feel like meeting with one every six months or so :-) I am not dead, go on soft adventures, plan to RV around the USA and to ride my bicycle across the country along. I don't NEED women and SEX, but I NEED TO AT LEAST FEEL ALIVE. Castrated, I did nto feel that way at all. So my only hope is the someone tells me my sex life is not over when this Rx is put into me and I get refills for the rest of my life in order to treat the number 6, not even a cancer tumor. Medical tests, including PSA tests have known to be wrong. How many men are treated and when they die they do not have cancer. Well, this is still a long post and forgive me! Just if you are on Lupron and epect to be on it for life, how do you feel about that life? Thanks George. Do what you want to do. But if I were you I'd take Eligaard (Lupron) before your cancer, and the only mark of PCa is measured by PSA, develops into mets. The name of the game is delay, delay, delay. I am 59 been only Eligard (Lupron) for four years. I am undetectable for the first time in five years. AND, I can still get it up! Not like is was, but very functional. My Medical Oncologists says that I am not typical though. Good luck. GD > Hello Everyone, > I hve been able to stay away from this group for a long time. [quoted text clipped - 98 lines] > > Thanks George. > My original urologist left to go to another teaching hospital > and the new one had his needle out ready to stick me with > Lupron and casodex. > This is at the same excellent hospital where the urologist is > telling me some completely different and who is now pissed off. > Pissed off that I went to see this other guy and stopped taking > Casodex that he had managed to slip past be. If a doctor is pissed off because you went for a second opinion, I'd drop him like a hot potato. A doctor with that attitude is not worth the paper his medical license is printed on. > For years I have been treated for major clinical depression and this > makes me feel much worse even with the drug for that. I just posted a reply to LIMEY about the side effects of LUPRON. Pay very close attention to the portion about depression and suicide. Point blank, here's the deal. Your prostate cancer has escaped. You have a choice - do nothing and be dead (a slow horrible, painful death) in five years, as your doctor suggested, or get on the Lupron and give yourself another 5-10 years of a good healthy life and hope that something else takes you from this world. Then you can watch that daughter graduate, walk her down the aisle and play with the grandchildren. Life is good! Bev > Hello Everyone, > I hve been able to stay away from this group for a long time. [quoted text clipped - 10 lines] > dead within five years without treatment, but I still am not convinced > enough to take the shot of lupron and become a "castrati." <SNIP> > My internal debate is --- I am now just a month into age 72, my family > is very long lived and I expect to live to my mid nineties, I live > alone, don't have much T anyway (my family doc is a woman with a sense > of humor and she laughed when I said I did not want my T taken away. > She said, "you don't have any, anyway." "Your young, get the hormone > treatment, you don't want to get bone cancer." <SNIP> > Well, this is still a long post and forgive me! Just if you are on > Lupron and epect to be on it for life, how do you feel about that life? > > Thanks George. > Point blank, here's the deal. Your prostate cancer has escaped. You have a > choice - do nothing and be dead (a slow horrible, painful death) in five > years, as your doctor suggested, or get on the Lupron and give yourself > another 5-10 years of a good healthy life and hope that something else > takes you from this world. Then you can watch that daughter graduate, walk > her down the aisle and play with the grandchildren. Life is good! Now, dang it, Beveley . . . you KNOW the average life extension provided by ADT runs more like 7 or 8 months, not 5-10 years, and that for many, maybe most, ADT pts the extra sack time required to deal with the ADT-induced fatigue can eat up more than those 7-8 months if the pt is on ADT for years. I must caution people one more time to do their own research, or at least demand references when they base any decisions on "facts" from individuals. Certainly ADT is our first line of defense once we have mets, but do not expect it to add more than a year to your life span, and expect it to extract a price ranging from depression/chronic fatigue/emotional turmoil at the easy end to a side effect slate so bad you say the hell with ADT regardless of its benefits at the extreme -- but not truly rare -- end of the spectrum. Fortunately, most men can try it out and find out first-hand what their personal responses will be with little -- but non-zero -- risk of irreversible SEs. I.P. IP, it's a shame you didn't know Berky. It's a shame you don't know some of the other guys who used to post out here but are still hanging in there. Why don't you take the time to explain this to several of our guys who have been on ADT for a few years who are hoping that something better comes along. But in the meantime they are living very normal lives, going to work everyday, and then spending weekends playing with the grandchildren. You don't like ADT; you don't like radiation. I can understand your frustration with SE because you were left with one of the worst SE's from RP. Quality of life is different for everyone. If my husband was in your wet suit he would have made sure he was fish bait by now. Of course there are SE's from ADT. There are SE's from aspirin! With luck most men can take ADT for years and keep the cancer at bay for quite a while. A 6 is not 600! But an untreated 6 will become 600 a whole lot faster without ADT! Bev > > Point blank, here's the deal. Your prostate cancer has escaped. You have a > > choice - do nothing and be dead (a slow horrible, painful death) in five [quoted text clipped - 23 lines] > > I.P. > IP, it's a shame you didn't know Berky. It's a shame you don't know some of > the other guys who used to post out here but are still hanging in there. Why > don't you take the time to explain this to several of our guys who have been > on ADT for a few years who are hoping that something better comes along. > you were left with one of the worst SE's from RP. Quality of life is > different for everyone. This has absolutely nothing to do with your figure for the life extension provided by ADT nor with Slug's question. > You don't like ADT; you don't like radiation. Like, schmlike. We're trying to discuss FACTS here, and you keep throwing out emotional nonsense represented as facts. "Like" has ZIP to do with any of this. Telling someone he can extend his life by 5-10 years with ADT is criminally irresponsible BS, and would be warrant litigation if you were a doctor. > With luck most men can take ADT for years and keep the cancer at bay > for quite a while. A PC pt can also eat marshmallows for many years with PC, but THAT DOESN'T MEAN THEY HELPED HIM LIVE ANY LONGER! > I can understand your frustration with SE My biggest frustration with SEs is people spreading BS about them to people trying to make vital decisions. > Of course there are SE's from ADT. Yes, and the thread initiator asks us to describe the ones we experience, not make up life extension benefits. I.P. >> Point blank, here's the deal. Your prostate cancer has escaped. You >> have a [quoted text clipped - 23 lines] > out first-hand what their personal responses will be with little -- but > non-zero -- risk of irreversible SEs. I think the issue here is when ADT is begun. There seems to be some difference of opinion in the medical community about when to begin it. Also, it can depend on the previous history of the disease and its seriousness. It can be recommended any time from the first clear increase in PSA to when there is clear evidence of metastasis. Scardino, for example, recommends that it be begun before the appearence of bone metastases, but otherwise delayed until there is some clear evidence something is happening, i.e., acceleration in the PSA doubling time. Since there isn't a well established starting point from which to make comparisons, it is hard to qunatify how effective the therapy is. Also, it is important to realize that the statistics give a median time before the treatment fails. That means that half of men have failure before than time and half have failure after it. There can be considerable variation in just how long it will be effective for any given man. I.P. makes a good point that it is worth balancing the possible side effects of HT against the benefits. Unfortunately, there is also considerable variation in how serious the side effects can be. The upshot of all this is that each man has to make the decision himself with the help of his doctors, and no one single answer works for everyone. > I.P. There are two theories about the efficacy of Lupron. One theory is that it works as well as it works, no matter when you take it. If you have a hormone sensitive cancer (most do), there is no reason to take Lupron until the cancer is becoming dangerous. The other theory is that, the more cancer cells you have in your body, the more dangerous the cancer is. It is better to try to arrest it while the cancer is small and limited than to wait until it is spread throughout the body. I'm not sure that anyone knows which of those theories is true, or if all men and all cancers are the same with respect to this issue. I was only on Lupron for about 6 months. My recollection of it is that I remembered wanting sex and felt nostalgic about that memory, but didn't want it while under the influence of the drug. I could look at a woman and wonder what it was that used to get me excited. However, if I tried to have sex, I found not only that I could do it but that, after making the effort, I got into it and enjoyed it. Perhaps, as they say, the most important sexual organ is not between your legs, but between your ears. Finally, although I am a man who always noticed women and wanted sex, I would give it up if it significantly extended my life to do so. There are a hundred things that make life worth living. Sex is a big one, but it's only one. Take it away and, for me at least, there are still 99 left. Alan George, I understand your dilemma and your will to live into your 90s. That said, you should measure your PSA doubling time (PSADT) as it has significant implications in patient survival. Freedland SJ et at Johns Hopkins at the last ASCO meeting reported that they examined the records of 379 patients who experienced biochemical failure after having undergone radical prostatectomy between 1982 and 2000. On the basis of the PSA doubling time, they determined the correlation between the rapidity of biochemical recurrence and mortality (prostate cancer-specific mortality and all-cause mortality). Seventy-six patients died over a median of 7 years; the majority of deaths occurred in men with PSA doubling times of 3-9 months. The investigators found that a cutoff of less than 15 months encompassed 94% of all prostate cancer-specific deaths and 75% of all-cause deaths. Prostate cancer progressed most rapidly in men with PSA doubling times of less than 3 months, though these men comprised only a small subset (20%) of all prostate cancer-specific deaths. At the same ASCO meeting, Hussain M et al reported preliminary results from the SWOG 9346 clinical trial in which the men that had the best response (PSA nadir-wise) after intermittent androgen deprivation had the most survival benefit. See abstract below: 1: J Clin Oncol. 2006 Aug 20;24(24):3984-90. Absolute prostate-specific antigen value after androgen deprivation is a strong independent predictor of survival in new metastatic prostate cancer: data from Southwest Oncology Group Trial 9346 (INT-0162). Hussain M, Tangen CM, Higano C, Schelhammer PF, Faulkner J, Crawford ED, Wilding G, Akdas A, Small EJ, Donnelly B, MacVicar G, Raghavan D; Southwest Oncology Group Trial 9346 (INT-0162). University of Michigan, Ann Arbor, MI, USA. PURPOSE: To establish whether absolute prostate-specific antigen (PSA) value after androgen deprivation (AD) is prognostic in metastatic (D2) prostate cancer (PCa). PATIENTS AND METHODS: D2 PCa patients with baseline PSA of at least 5 ng/mL received 7 months induction AD. Patients achieving PSA of 4.0 ng/mL or less on months 6 and 7 are randomly assigned to continuous versus intermittent AD on month 8. Eligibility for this analysis required a prestudy PSA with at least two subsequent PSAs and that patients be registered at least 1 year before analysis date. Survival was defined as time to death after 7 months of AD. Associations were evaluated by proportional hazards regression models. RESULTS: One thousand one hundred thirty four of 1,345 eligible patients achieved a PSA of 4 ng/mL or less. At end of induction, 965 patients maintained PSA of 4 or less and 604 had a PSA of 0.2 ng/mL or less. After controlling for prognostic factors, patients with a PSA of 4 or less to more than 0.2 ng/mL had less than one third the risk of death (ROD) as those with a PSA of more than 4 ng/mL (P <.001). Patients with PSA of 0.2 ng/mL or less had less than one fifth the ROD as patients with a PSA of more than 4 ng/mL (P < .001) and had significantly better survival than those with PSA of more than 0.2 to 4 ng/mL or less (P < .001). Median survival was 13 months for patients with a PSA of more than 4 ng/mL, 44 months for patients with PSA of more than 0.2 to 4 ng/mL or less, and 75 months for patients with PSA of 0.2 ng/mL or less. CONCLUSION: A PSA of 4 ng/mL or less after 7 months of AD is a strong predictor of survival. This data should be used to tailor future trial design for D2 prostate cancer. PMID: 16921051 [PubMed - in process] Given your will to survive into your 90s, you might consider a course of intermittent deprivation before your cancer volume increases to a less responsive stage. Best, RalphV www.azustoo.org > Hello Everyone, > I hve been able to stay away from this group for a long time. [quoted text clipped - 98 lines] > > Thanks George. Hi Ralph...If a patient was strongly adverse to trying traditional ADTn, or suffered debilitating SEs, might transdermal estrogen therapy, as practiced by Drs. Beer or Ockrim, be something to consider? Just wondering what you think...Best wishes and good health, ron Hi Ron, Beer and Ockrim both seem to be using E2 patches in people that are progressing while at castrate levels of testosterone. On the other hand, we both know folks that have avoided LHRH agonist suppression's hash SEs by switching to transdermal estradiol with androgen-dependent disease. This being done with relatively good results. The advantages are many including control of BMD, mental acuity, no hot flushes, and in general improved QOL. Gynecomastia is a problem as well as the potential risk of vascular events. In men that I know, compliance is an issue with adhesion (mostly in hot weather) and depending on the product there is the issue of an even estradiol transfer during use time. Not all patches are created equal. For some there is Estrogel, but that has it own use problems. In advanced disease there is the potential activation of growth by estrogen receptors expressed in PCa cells. In some cases (that I am aware of) aromatase inhibitors such as Arimidex have slowed down progression. It seems that ER-B is the bad guy here and is known to be expressed in androgen-independent disease. Ockrim has used high levels of estradiol in androgen-independent PCa seemingly without this activation and maybe taking advantage of the biphasic nature of the hormone. In summary, I do believe that estradiol is an option for those that experience extreme side effects with LHRH agonists and have good cardiovascular systems. As mentioned above, compliance can be problematic for those that are not on top of their disease at all times, but all in all I have seen it work for several of my friends that had problems with LHRH agonists. Best regards to you and family, RalphV www.azustoo.org > Hi Ralph...If a patient was strongly adverse to trying traditional > ADTn, or suffered debilitating SEs, might transdermal estrogen therapy, > as practiced by Drs. Beer or Ockrim, be something to consider? Just > wondering what you think...Best wishes and good health, ron >One thousand one hundred thirty four of 1,345 eligible patients >achieved a PSA of 4 ng/mL or less. At end of induction, 965 patients [quoted text clipped - 11 lines] >strong predictor of survival. This data should be used >to tailor future trial design for D2 prostate cancer. HELP!!!!! Many thanks to you Ralph (and to all here) who post up stats for us all but I'm hoping one day someone will devise a rapidly appraisable version of reports like the above - of course it would have to be in pictures with lots of red and green and perhaps a splash of blue and yellow - I don't think I quite have the Excel skills (Leonard?). I can't have been the only one who became discouraged by the opening "One thousand one hundred thirty four of 1,345.....". Surely whoever compiled the report might have had the wit to give us instead 1134/1345? - or better, 84% of 1345 or even better still a nice 3-D block colour-filled almost to the top. For the most part we don't even need to see figures to distinguish between the good/better/best. Lupron has considerable side-effects. Some tolerate it just fine and are on it for years. Others can't handle it and stop. I presume your surgery had to be within the last few years, if it was done with the da Vinci robotic surgical system? I don't know the details about when your PSA recurred, or how fast it rose, but if your prostate had gleason 9, I'm guessing the PSA came back fairly soon and rose quickly.. in which case, even if the bone scan and CT are clear, there's a high probability the cancer is not local anymore. But.. we can't be sure. It might not hurt to talk to a radiation oncologist. Again, I don't know the details of your recurrence, but just talking and collecting information is never a bad idea. By the way, accurate gleason grading can be tricky following lupron. Not to inject doubt here.. but are you sure about the 9? (don't get me wrong, based on what you've told us already, it's acting like a 9) ..just curious as to what your biopsy showed? Another consideration if you don't want to resume lupron is high-dose casodex. Tends to be better tolerated, but does have some different side-effects like breast tenderness/enlargement. Also, this regimen may be cost-prohibitive. If the breast symptoms are severe, they can usually be effectively eliminated with some low- intensity radiation therapy. === http://www.DrYew.com http://www.SanDiegoRoboticProstatectomy.com *IMPORTANT* Any comments by me are for general informational purposes only, and should never be used to diagnose or recommend treatments for any condition without face-to-face consultation with a qualified health-care provider. Thank you. === > Hello Everyone, > I hve been able to stay away from this group for a long time. [quoted text clipped - 98 lines] > > Thanks George. > micro-surgery in a minimal invasive > operation using remote and tiny instruments. I believe you mean laparoscopic surgery. > This operation seemed (and is) light years better than the bloody one > normally done with an incision from belly button to penis. The recovery > time is a few days, not months and side effects are much less. This is not true. There is no clear evidence that side effects are any different between open and laparoscopic surgery. The recovery from the open operation does not take months. Your treatment was clearly botched. > Before he could do this I walk over to the cancer center. There an > oncologist said there was no need to be taking anything just for a > number. He had bone scans and a CAT scan done, that showed nothing. Seems like a sensible fellow. You need to get out and find another good oncologist (one who specialises in PCa).  SignaturePeter Headland It seems that in all the replies to your question that no one has actually told of the actual experience of being on Lupron for a long term. In prior posts you can probably find my history of a first ever PSA test at age 67 in 1997 with the result of a PSA of 45. Six biopsy samples were 6's and 7's with one 8. Surgery March 5, 1997l. Bone scan clear and lymph nodes clear. After being undectable for three years my PSA rose to 1.6, after one Lupropn shot (my choice) in one month it was 0.8 and the doctor added Casodex. One month later <0.1. Three years on Casodex and Lupron and PSA went to 0.6. Stopped Casodex and one month later <0.1 where it has remained. My next appointment is in October. My doctor has had a patient on Lupron for more than 12 years. What is it like? Libido is gone, body hair mostly gone, some weight gain (to 185 from 160), hot flashes which are not all that bad, a substantial loss of strength, but I still swim a half mile or walk two miles indoors six days a week. A forty-pound bag of water softener salt is heavier than it used to be. I have been retired for 16 years, go out to lunch daily one-on-one with numerous friends. My wife and I travel--in fact next week leave for a two-week river boat trip in Russia. We have been to Europe some years two or three times. We especially like Switzerland--six visits there. We have been to 26 Elderhostels--don't do hiking trips any more. So what is it like? I am 78 years old, have a devoted wife, children, grand children, and great-grandchildren. Life is worth living and I hope that I am around for a long time to come. Dick Winters Find some more info about classes and pharmacotherapeutical treatment of cancer and related medical conditions of neoplasms: <a href="http://drugs-about.com/icd/c00-d48.html">Cancer Diseases - Drugs-about.com - ICD-10</a> > searching tfor the answer to this quesiton.. My uruologist has been > saying, for two years, that I should take lupron and casodex because my [quoted text clipped - 3 lines] > dead within five years without treatment, but I still am not convinced > enough to take the shot of lupron and become a "castrati." It is important to remember that your PSA was 2.0 during January 2005. That means a doubling time of, maybe a year? If so, might be 8.0 by January 2007, 16.0 by 2008. And was it Gleason 9???? I thought it was 8. Not that there is much difference if you're not treating it. > Heck, I think about sex all the time and wish this guy had been better > at helping me with the ED, then he was. There is a difference between thinking about sex all the time and unable to perform and not thinking about sex at all. If you cannot have sex or have no one with whom to have sex, hormone treatment at leasts gets it off your mind. > Well, this is still a long post and forgive me! Just if you are on > Lupron and epect to be on it for life, how do you feel about that life? It sounds like you have two major goals. Live until you are 95 and feel alive until you are 95. One thing is certain: I you leave the cancer untreated, you'll not live to 95. So, you're going to have to compromise. I'm a virtual eunuch myself, but I don't feel that I am in a position to tell you what you want in life. I'm 20 years your junior (52 on the 28th). I still work. I have a wife. I have children and grandchildren. And, frankly, I have little chance at making it to 72. And, if you don't believe in God or life everlasting, the gulf between us is too large to cross. However, I can tell you that I feel alive. I work 40, 50 and sometimes 60 hours a week. I enjoy my job tremendously and almost look at retirement in 2011 (or sooner) with sadness. I walk multiple miles almost everyday. I was in a hardware store today, selecting lumber for my next home project. I golf. I have people over to watch the Bengals on my plasma. I delight in seeing my grandchildren and get down on the ground to play with them. And, after my next two grandchildren are born (this month), my wife and I will light out on an unplanned two-week driving vacation to northeastern U.S. I miss the memory of sexual climax. I have a hard time losing weight. Maybe, just maybe, my muscles are a tad weaker than they otherwise would be. But, I am alive and a feel alive. SignaturePSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05, 2/06, 6/06 PSA .07 .05 .06 .09 .08 .132 .145 Casodex added daily 07/06 Non Illegitimi Carborundum > ... > There is a difference between thinking about sex all the time and unable to perform and [quoted text clipped - 23 lines] > maybe, my muscles are a tad weaker than they otherwise would be. But, I am alive and a > feel alive. This is a very good posting Steve. Prostate cancer, failed primary therapy, and hormone therapy are all things that it is easy to get depressed about. But you've shown that there is a lot to love about life and a lot of living to do even in the face of all that. Very well said. Alan I asked the forum in 2004 what HT (ADT) did to them. The responses were summarized in the thread titled "HT SE Survey Results" beginning on Dec 22, 2004. If you have problems using Google Groups to find that thread, ask us. It's easy. I.P. > Hello Everyone, ... > Well, this is still a long post and forgive me! Just if you are on > Lupron and epect to be on it for life, how do you feel about that life? > > Thanks George. They gave me 2 four month lupron shots. The first few months wasn't bad and I even managed to have erections and emissions. I wouldn't want to be on lupron long term and not be able to be with a woman. The problem was in the 5th or 6th month. I had incredible fatigue, was thirsty, pee'ing all the time. My fasting blood sugar hit 300 and my triglycerides went whack-o too. The joint pain didn't bother me. Neither did the hot flashes. I had both but that was minor compared to the outa control blood sugar. For me, this wasn't a matter of "tolerating" the Lupron or "sucking it up and toughing it out". A 300 blood sugar is dangerous. Not because it can cause long term injury such as kidney failure, blindness, and so forth but because a 300 means that your brain isn't working. You're in a sugar fog all the time. I'm amazed that I was able to drive. At the worse, I wasn't able to do any detail work, like type on the keyboard. Before taking Lupron, I'd advise having a full up blood chemistry, Testosterone, sugars, all the metabolics, cell counts, everything. And get another done every two months at a minimum. Then plot them on graph paper so you can see the trends. If your chemistries stay within your normal range, then great. You can handle the rest of it, joint pain, hot flashes, those are easy. -kh Did the doc attribute the blood sugar levels to Lupron? Did the problem go away when the Lupron left your system? Are you off the Lupron? What did they do for your blood sugar? Bev > They gave me 2 four month lupron shots. The first few months wasn't > bad and I even managed to have erections and emissions. I wouldn't [quoted text clipped - 26 lines] > > -kh I have been on Lupron since March '06. It, and the Casodex, failed after two months and I started chemo August 23. The Lupron, which I will stay on gave me hot flashes which are very tolerable and that is about it. Blood is okay, no joint pain, sex is a memory - a good one, but with the advanced degree of my disease Lupron is what keeps me alive. I haven't been depressed and have been doing exactly as I want to do, with a couple of adjustments on occasion. I coach, work full time, and officate football on Friday night. I am T4N2M1 which is only a little worse than at diagnosis. My Geason was 9 so I am not sure what you are really fighting. I had to come to grips with the SE's of all this and prolonging my wonderful life or ignoring it and shortening it. I chose to be as aggressive as possible, but as I have found and you have heard, we all have to make our own choices. For me Lupron is a help, but my highly androgen independent cancer, didn't respond well to it. Hope this helps and good luck with your decision. Duke DX 3/17 - Gleason 9/PSA 44/Bone mets and lymph glands TX 3/17 - Lupron+Casodex 50mg PSA - 4/17 3 - 5/3 5 5/23 7.5 6/12 13.8 (stoppped Casodex) 7/3 - 22 8/12 44 TX - 7/12 HDK + HC Stoppped 8/17 TX 8/23 -Began Chemo in Ascent III Trial - weekly Taxotere + high dose Vit D + steroid (chemo for three weeks and off a week) Bone CT scan on 8/19 showed ehavy lypmph invovment in pelvis/abdomen+more ribs+more sacrum. Chest and brain clear. > I have been on Lupron since March '06. It, and the Casodex, failed > after two months and I started chemo August 23. Best of luck Duke. I hope the chemo does a serious job on the cancer for you. Alan Casodex added daily 07/06 Non Illegitimi Carborundum > DX 3/17 - Gleason 9/PSA 44/Bone mets and lymph glands > TX 3/17 - Lupron+Casodex 50mg [quoted text clipped - 5 lines] > Bone CT scan on 8/19 showed ehavy lypmph invovment in > pelvis/abdomen+more ribs+more sacrum. Chest and brain clear. Sure has been an interesting six months for you Duke. I hope you find something soon to stave it off. SignaturePSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05, 2/06, 6/06 PSA .07 .05 .06 .09 .08 .132 .145 > Did the doc attribute the blood sugar levels to Lupron? No. I asked the Uro, Rad, and primary doc the same question. Each said that Lupron does not cause the high sugar. My primary doc did pull out his PDR and did not find elevated sugars mentioned in his edition. I did find a vague reference in mine and also on the web. > Did the problem go away when the Lupron left your system? Yes. But it's a long story. > Are you off the Lupron? What did they do for your blood sugar? In January 05 or so, towards the end of the 2nd 4 month Lupron shot, my primary doc sent me to "diabetes school". He had put me on 1 850 glucophage/day. The nurses at the school took our sugars and A1c, I clocked an 11, which is very high. I was also in a diabetic fog during that period. The drill at diabetes school is like boot camp. First, break the nubie. The nurses told us that diabetes is incurable but can be managed. They told the scare stories of loss of limbs, blindness, organ failure, but we could manage our sugars if we tested regularly, ate right, got exercise, and if necessary, took the meds. If needed, insulin injections but the needles were very thin and didn't hurt. They drilled that into us, over and over. I was singled out for special indoctrination because my numbers were so bad. Due to medical privacy concerns, they did not say what each person clocked but I am certain that my 300 fasting and A1c of 11 was the worst in the class or very close to it. The class, about a dozen was a racially mixed older group, mostly way overweight and out of shape. My weight to height ratio is not great but I'm a power lifter, one-arm push-up type. When asked how I felt about having diabetes, I mentioned that I was being treated for prostate cancer, was just coming off Lupron, and that I didn't think I had diabetes so much as a reaction to the Lupron and the castrate T levels. Wrong thing to say. The nurses immediately pegged me as being in denial and made an effort to educate me. "Diabetes cannot be cured. It must be managed. Oh, and your one a day 850 glucophage is a sub-theraputic dose. You should speak to your doc about doubling or tripling it. 2,500 might work for you." True to form, I didn't push back but listened to the classes, paid attention, all along thinking, everyone else here LOOKS like they have diabetes, I don't, are they going to be surprised in 3 months when the Lupron flushes out of my system and my blood sugars drop to normal. The format of the school is two classes, then a 3 month break, then another couple classes to see how folks are managing. When we resumed class 3 months later, my fasting blood sugars had fallen to the 130-140 range and I clocked an A1c of 7. This is still above normal but a whole lot better than 280, 310 and A1c of 11. The nurses were astonished. I was disappointed that my numbers weren't lower. I had increased the glucophage to 1300 a day. This was 4 months after the end of the Lupron. I used to drink 1 or 2 32 ounce Pepsi's a day. I switched to diet soda, water, green tea. I cut way back on the carbs, rice, potatoes, pasta and had doubled the fresh greens, protein, eggs, meat. I copied my annual blood chemistries going back 5 years and ploted them against my quarterly chemistries since the PCa diagnosis. My triglycerides had risen to 800 at the peak of the Lupon. My historic Triglycerides are in the 190-200 range. Triglycerides and sugar go sky high, in parallel at "about" the 5th month of Lupron. One note on the data, the simultaneous peak is not definite. It looks that way on the graph but that is an artifact of having all those tests done on the same day and nothing for 6 months earlier or 3 months later. The Triglycerides may have peaked at 1,000 a month earlier than the sugar. I can't tell because I don't have the data. However, it is obvious that Lupron wacks blood sugar and triglycerides. Both graphs fall back in parallel. I have more datapoints after that for fasting sugars because the nurses gave me a glucometer. This is a year later than the last diabetes class. My last A1c was 6.4. My last lab blood sugar was 89. I see numbers like 105 and 110 on my home meter. I don't make too many checks these days. My triglycerides are back down to 190. I'm pretty certain that Lupron is big trouble for blood sugar. I needed to do something about my diet anyway. I wish that the docs were more alert to this and did monthly blood panels while on Lupron. I could make some noise with them about this but it's probably better that I tell USENET this story. If anyone is going on Lupron, get a full-up blood chemistry first with monthly or at least every other month followups. Know your T going in. -kh I'm so glad this is now under control. Diabetes is not something you want to have. My doc is very aware that certain meds can cause sufficient change in the body chemistry and as a result can trigger diabetes. I am the only non-diabetic on my mother's side and my father was one of only a few in his family who was not diabetic (all are type 2 diabetics). My husband's family is also riddled with diabetes so I will keep your info stored just in case... Yes, all those horror stories about diabetes are quite true. They do try very hard to scare folks because most don't take diabetes very seriously. They pop a pill or inject and then eat whatever they please. It sounds as though you have the diet under control. Good luck and thank you for bringing this up. Bev > > Did the doc attribute the blood sugar levels to Lupron? > [quoted text clipped - 106 lines] > > -kh >> Did the doc attribute the blood sugar levels to Lupron? > > No. I asked the Uro, Rad, and primary doc the same question. Each > said that Lupron does not cause the high sugar. My primary doc did > pull out his PDR and did not find elevated sugars mentioned in his > edition. I did find a vague reference in mine and also on the web. My GOD what are these idiot doctors (NOT!) reading? Diabetes is one of the common, well-documented ADT SEs. The PDR isn't going to mention it because it's not the DRUG that causes the diabetes; it's the drug's intended EFFECT -- andropause -- that causes or exacerbates diabetes in many pts. I.P. Hello Everyone, Thank you to all for your interesting replies. I was away for awhile and my good computer is currently in the Dell Hospital after repeated attempts to revive the thing, while it remained at home, did not work. Now, I want to find out who are the top medical professionals treating prostate cancer now. Last week I had a bone scan that was omitted from my last tests. I might not hear anything about it for awhile, as the urologists wants another PSA score in mid October before seeing me again. I presume nothing suspect was shown on the bone scan, if I was not notified of such. However, I've learned that you never know, when dealing with people looking at hundreds of thousands of reports. The treatments seem almost primitive - as far as I can see - surgery or radiation with a few options within those - radiation, or hormone treatment if the first attempt to remove the cancer with surgery fails - and hormone treatments or chemo for any other cases. Maybe that does not bring out the best people to study the disease, but with the high death rates among men who die at younger ages than expected, I hope there are some good people working in the area of treatment. My wife died of another cancer - leiomyosarcoma - not studied much because it is rare. Then I was not too surprised to find out there were no doctors studying this cancer specifically. There the treatment was cut and burn, nothing else, until inevitably you die. I just now am reading Lance Armstrong's account of his treatment for testicular cancer and was impressed when some experts in this cancer seemed to come out of the woodwork when they heard that he had the disease. If he had not already been well known at that time, would they have been found? Besides my own problem, I wondered whether or not we saw the right people for my wife's disease. I did try to find other doctors or hospitals, but had no luck, even through the group of women suffering from the same cancer. Nobody is going to be calling me up to tell me of this great doctor or hospital, so I will research that myself. I want to start with this group since you all have a strong interest in the subject and might have names for me. This is for treatment AFTER the surgery has done all it was going to do. I do not want quacks, but am still not satisfied that treating test results with hormones is the most scientific approach to medical treatment. What I am looking for is some sane treatment that works and does so without causing other problems, or at least mitigating those problems or side effects. If the choice is dying from bone cancer soon, rather than some other unknow cause later, I might decide to opt for the preemptive strike of hormone treatment. I do want to know that I am under the care of a doctor and hospital where the treatment is the best. My motto, I thought, was go first class, in these matters, but now I wonder if I was fooled into thinking that I was going first class when in reality settling for what was available. In the meantime, my diet and exercise routine are going so far off lately, that I might not have to worry about cancer as much as some other lovely diseases, besides prostate cancer. Thank you again for your contributions so far. They certainly will be taken into account, no matter what I decide to do. Any ideas on how to find those doctors or hospitals will be appreciated. Slug > Hello Everyone, > I hve been able to stay away from this group for a long time. [quoted text clipped - 18 lines] > Paria by a French doctor. I was ready to go there too, as the hospital > had a program for foreigners all set up. > Last week I had a bone scan that was omitted from my last tests. I > might not hear anything about it for awhile Call the radiology clinic and inform them you'd like to come by and pick up your CT report. They'll have it ready within minutes to hours. It'll be on a CD you can pop into your computer and read, so if your computer is dead, ask them to print you a hard copy of the radiologist's report. Read it and you'll PROBABLY know (it's in medspeak . . . but you can get the gist) what the results were. They can't refuse; your medical records belong to YOU. > What I am looking for is some sane treatment that works and > does so without causing other problems, or at least mitigating those > problems or side effects. If several recent cases described right here in the last couple of days (e.g., Califchief, today, under "Update") are any indication, it's up to YOU to research, analyze, choose among, pretreat and treat your SEs. There's been a LOT posted about SEs here since about January '05, but that's about to drop significantly because this group hasn't the backbone to face them head on (I'm tired of sugarcoating the problem, folks, and, yes, I AM getting angry this time, partly because of case after case after case of SE bad dreams and nightmares in our tiny little sample JUST THIS WEEK). Read every post involving SEs over the past 20 months for heads-ups, then follow their leads to studies and books to define your own version of SE reality. Keep in mind that two people here grossly understate SEs' threats by saying it's "minor" or "manageable", while I overstate it in the sense that I state what CAN happen, quote the odds and impacts of it, and explain that the drugs that MAY manage SEs have their own SEs, which may require further drugs, etc. GOOGLE THOSE DRUGS and draw your own conclusions, but just this month Consumer Reports warns us against a very common one, Zoloft (and its medical kin). > If the choice is dying from bone cancer soon, rather than some other > unknow cause later, I might decide to opt for the preemptive strike of > hormone treatment. HT, aka ADT, will not cure your cancer. It will alleviate met symptoms for a while, will extend your life for a while (average = 6-8 months; range = weeks to years), and WILL induce some SEs. Their impact on your QOL can range from fairly light (unless you're athletic) to so damned bad you yank out the ADT drug needle, stick it in the DOCTOR, and walk out the door to go it on your own. Anyone who tells you otherwise is lying to you, according to extensive studies, panel discussions among internationally known oncologists, and some members of this forum. > I do want to know that I am under the care of a > doctor and hospital where the treatment is the best. My motto, I > thought, was go first class, in these matters, but now I wonder if I > was fooled into thinking that I was going first class when in reality > settling for what was available. I interviewed several uro oncs before finding one I trusted based on extensive reading about PC and specific hospitals and even individual docs. Then I consulted a rad oncs and a med onc for a reality check before choosing my initial tx. Got treated with excellent medical results, but because my Gleason was an 8, we assume I'll see PC again. Thus we considered preemptive ADT, triggering hundreds of hours more research into its benefits and SEs. That research led me to a fairly easy choice FOR MY CASE. I.P. |
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