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Medical Forum / Diseases and Disorders / Prostate Cancer / July 2005Being told to start Lupron - what do you think?
History is PSA was 18.9 04/20/2002 @ 50 Biopsy 05/07/2002 Gleason Grade (3+3) RRP 06/26/2002 then G7(3+4), T3a with Neg margins PSA <.1 .2 .3 .7 Started Casodex 6/7/03 After 1 month was .8, then .9 .8 .8 .7 .6 .6 .7 then 1.0 in Jan 2005 In April 05 reading was 2.6 In July 05 reading is 3.1 Told on 7/21/05 to start Lupron Question: Isn't it unusual to start Lupron after the prostate has been removed? The doctor also said that we should talk to a radiotherapy doctor for a consultation. How can they do radiotherapy if there is no evidence of a localized/cancerous area to pionpoint? All scans came out negative. Any opinions will help us. Thanks so much. Joanna Hi, Joanna. As you can see by my signature, my pre-op and post op were really close. I had a few extra months of thinking I might be cured, but otherwise my PSA increased at the same rate. The next step for me was External Beam Radiation Treatment (EBRT). After another year or so, it was determined that EBRT wasn't successful so I started on Lupron. When I go refractive, but next step will be chemo. That was the normal sequence of events in medicine during 2000 to 2003, but there were variations. But, to answer your question, no it is not unusual to use Lupron after prostate surgery. Nor is it unusual to use radiotherapy to kill whatever cancer cells might be left in the prostate bed. My question would be, why did they wait so long?  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 PSA .07 .05 .06 .05 non Illegitimi carborundum > History is PSA was 18.9 04/20/2002 @ 50 > Biopsy 05/07/2002 Gleason Grade (3+3) [quoted text clipped - 12 lines] > negative. Any opinions will help us. Thanks so much. > Joanna It seemed that the Casodex was doing it's job there for a while so I guess that is why the doc waited for a time before giving the order for Lupron. Do you think husband, "Chris", should do the radiotherapy as well? All the cat scan & MRI showed (2 mos ago) was some "non-specific" and "unremarkable" cells in the lower right lung but they don't know if this is just a scar left over from a childhood bout with pneumonia or some other illness he may have had years ago. The EBRT would be directed at the prostate bed (pretty sure that's what he meant) & not the lung area.Did you have any bad side effects with either treatment? Thanks again; it's all very helpful info. Joanna Most people have some side effects from EBRT, usually revolving aroung fatigue, diarrhea and urinary track infection symptoms. I drank gallons of water, walked over 100 miles in those 7 weeks, and went to bed 1 hour early each night. I survived with no serious SEs. I cannot advise you of medical procedures. EBRT has the possibility of curing prostate cancer if done soon enough after the RRP. I don't know what its successes are once a PSA goes to 3.1 or after a couple of years. However, Lupron is usually very successful at knocking cancer down for a few years, but it is almost never a cure. 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 PSA .07 .05 .06 .05 non Illegitimi carborundum > It seemed that the Casodex was doing it's job there for a while so I > guess that is why the doc waited for a time before giving the order for [quoted text clipped - 7 lines] > the lung area.Did you have any bad side effects with either treatment? > Thanks again; it's all very helpful info. Joanna > History is PSA was 18.9 04/20/2002 @ 50 Biopsy 05/07/2002 Gleason > Grade (3+3) RRP 06/26/2002 then G7(3+4), T3a with Neg margins PSA <.1 [quoted text clipped - 7 lines] > evidence of a localized/cancerous area to pionpoint? All scans came out > negative. Any opinions will help us. Thanks so much. Joanna Comment: "negative margins" is supposed to mean that the PCa did not escape. Obviously, that evaluation was wrong. I think that any such post-RP statement by the surgeon should be taken with a grain of salt until supported by post-operative experience. No, use of ADT (androgen deprivation therapy) is not unusual when systemic PCa is suspected. And the rising PSA is pretty good evidence that the PCa is indeed systemic, which. BTW, is *not* the same thing as metastatic. The question re: radiotherapy is a good one. I hope that what is contemplated is IMRT. It can be (and was, in my case) set up to irradiate not only the prostate "bed" but the pelvic lymph nodes and the seminal vesicles as well. These are, I understand, the first areas to which PCa will spread once it escapes the gland. IMRT is, like any such RT, a local tx. I hope that the plan is to move to aggressive adjuvant systemic tx. Lupron is probably a good beginning. It would be classed as ADT1 (androgen deprivation therapy, one drug). I recommend discussing ADT2 or ADT3 with the medic. The additional drugs would probably be Casodex and Avodart, but there is a fairly wide menu from which to select. IMO, what should *not* be done is to try one tx, move to another and another as each tx fails (if they do fail). That is "cookbook medicine." The situation is perilous, and the cancer should be hit with as much force as possible, and as early as possible. One such tx is, where appropriate, is adjuvant chemotherapy along with the ADT. This is fairly new, and I do not know how well it is regarded by the profession in general. I strongly recommend reference to the authoritative website of the Prostate Cancer Research Institute at http://prostate-cancer.org/index.html 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. > Comment: "negative margins" is supposed to mean that the PCa did not escape. Nope. It is simply an observation of a fact (plus or minus the capabilities of the pathologist), namely that no PCa cells were observed at the cut margins (surfaces) of the removed tissue. It obviously and by definition tells us nothing about mets outside the tissue that was removed. There might also be a localised focus that was discrete and fell outside the dissection planes (hence trying blasting the prostate bed). > irradiate not only the prostate "bed" but the pelvic lymph nodes > and the seminal vesicles as well My impression was that most (if not all) RPs take the nearby lymph nodes and the seminal vesicles. Are you saying that they left your seminal vesicles in place? That seems pointless (they are no use to you once the prostate is gone; removing them doesn't take very long) and doubly dangerous (because you lose the pathology information and leave an obvious possible focus in place). SignaturePeter Headland Quoting me: >> Comment: "negative margins" is supposed to mean that the PCa did not >> escape. He replied: > Nope. It is simply an observation of a fact (plus or minus the > capabilities of the pathologist), namely that no PCa cells were observed [quoted text clipped - 3 lines] > fell outside the dissection planes (hence trying blasting the prostate > bed). Well, Pete, with all due respect, how many PCa patients understand that fine distinction? One in a hundred, maybe? One in a thousand? We have both seen many postings on this NG about the patient's relief that the margins were found post-RP to be "negative." My point, which I think I made in the portion of my post that was snipped, is that this evaluation is, well, without value until proven true. No surgeon, I don't care who (s)he is, can "observe" PCa cells until there are millions (billions?) of them in the tissue specimen under study. (snip) > My impression was that most (if not all) RPs take the nearby lymph nodes > and the seminal vesicles. Are you saying that they left your seminal > vesicles in place? That seems pointless (they are no use to you once the > prostate is gone; removing them doesn't take very long) and doubly > dangerous (because you lose the pathology information and leave an > obvious possible focus in place). I was not a RP patient. I was a victim of botched cryosurgery followed by salvage IMRT + adjuvant ADT that, so far, appear to be achieving their purpose. Judging from what I've read, I do not believe that lymph nodes and seminal vesicles are commonly excised along with the prostate. I stand ready to be corrected, though. Regards, Steve J > I do not believe that lymph nodes and seminal vesicles > are commonly excised along with the prostate. >From my extensive reading, I am certain that all (well, at least 99%) surgeons performing RP take some lymph nodes (how many they take varies). Some surgeons even dissect the lymph nodes before proceeding (if they find significant Pca, they abort the operation). The lymph nodes are such a common and important site for early metastases that it would be folly to lose the opportunity to do pathology on them. I don't know for sure whether everyone takes the seminal vesicles. As I said, taking them is a Good Thing, but sadly not all surgeons doing RP do it optimally. PS: "Peter", not "Pete", please. SignaturePeter Headland >>> Comment: "negative margins" is supposed to mean that the PCa did not >>> escape. Note that I took the word "escape" to mean metastases rather than cells that were part of the original cancer in the prostate but were left behind by surgery. > No surgeon, I don't care who (s)he is, can "observe" PCa > cells until there are millions (billions?) of them in the tissue > specimen under study. Are you a pathologist? Ob what do you base this statement? >From the images of tissue samples I have seen, I would say hundreds of cells is enough to be visible, but that small a number could very easily be missed. I think a diligent pathologist (surgeons don't generally do the post-op pathology) should find a cluster of thousands of cancer cells. But you miss the point - the pathologist is looking at a clear and obvious focus of cancer on a slide. They can see the edges of it (OK, the edges are fuzzy). If the edges are well clear of the edge of the sample, that is how they determine the margin was negative. So they are not searching for tiny clusters of cells, they are following the edge of larger clusters. That said, your point is a fair one - it only takes a single cell to remain and start multiplying to give recurrence (though starting with one cell you would likely die of other causes long before it became an issue). A new focus could have started up at or beyond the dissection plane and that focus could be too small to be detected. And there could be metastases elsewhere. > how many PCa patients understand that fine distinction I would expect any competent urologist to explain that negative margins are no guarantee of a cure (I know, there are a lot of incompetent ones out there); I accept that some patients are too distracted or ignorant to understand what they are told, but not 99%. > this evaluation [negative margins] is, well, without value Ample research shows that this evaluation is absolutely not "without value" - negative margins are a good indicator of success (obviously nowhere near 100%; nothing is). I was very relieved to hear those words in my case, even though I know all the caveats. You might as well say that PSA is without value in predicting cancer because in and of itself it is not absolute proof that cancer does or does not exist, but any sensible man would rather have PSA 1.0 than PSA 10.0. It's all about probabilities - I suppose a 3-legged horse might win a race, but I sure wouldn't bet on it. FWIW, positive margins are by no means a guarantee of recurrence - it has been suggested that the trauma around the dissection plane sometimes wipes out cancer that extended a short distance beyond the dissection plane. SignaturePeter Headland Quoting me: >>>> Comment: "negative margins" is supposed to mean that the PCa did >>>> not escape. He replied: > Note that I took the word "escape" to mean metastases rather than cells > that were part of the original cancer in the prostate but were left > behind by surgery. Well, I reckon we've got to define our terms. To me, "escape" connotes cells leaving the gland, not necessarily cells leaving the gland and then establishing a metastasis site. The former can result in systemic disease, which is not the same thing as metastatic disease. That, if it happens, comes later. Oh well, no harm done. >> No surgeon, I don't care who (s)he is, can "observe" PCa cells until >> there are millions (billions?) of them in the tissue specimen under >> study. > Are you a pathologist? Ob what do you base this statement? Note that I specified *surgeon* not the pathologist. Reason: the surgeon has the burden of deciding where to make his incision and his decision is doubtless based upon experience and appearance. The path can only work with what he's handed. And the surgeon might leave behind enough PCa cells to produce systemic disease, later. This, judging by what I have read here, seems to happen with some regularity, though I do not have stats on the point. Or, of course, there could already be systemic disease when the surgery is performed. Avoiding this is where the staging tests become so important. I refer to tests that uros often ignore -- if they are aware of them. (ka-snip) > That said, your point is a fair one - it only takes a single cell to > remain and start multiplying to give recurrence (though starting with > one cell you would likely die of other causes long before it became an > issue). A new focus could have started up at or beyond the dissection > plane and that focus could be too small to be detected. And there could > be metastases elsewhere. I don't see cause for disagreement. >> how many PCa patients understand that fine distinction > I would expect any competent urologist to explain that negative margins > are no guarantee of a cure (I know, there are a lot of incompetent ones [quoted text clipped - 7 lines] > nowhere near 100%; nothing is). I was very relieved to hear those words > in my case, even though I know all the caveats. To complete my sentence with that portion that was snipped, *until proven true.* That time comes when maybe five years +/- have passed without relapse. What I was told was that five clean years meant that I was *probably* cured; ten years meant that I could be pretty sure -- but even then it's not guaranteed. In short, like it or not, we're in this for the long haul. (snip) > FWIW, positive margins are by no means a guarantee of recurrence - it > has been suggested that the trauma around the dissection plane sometimes > wipes out cancer that extended a short distance beyond the dissection > plane. Wellll, maybe so, but I'd be very worried upon hearing the words "positive margins" applied to me. That would be the time to consult a med onc. Regards, Steve J PS: I meant no offense when I referred to Peter as "Pete." "The true aim of medicine is not to make men virtuous; it is to safeguard and rescue them from the consequences of their vices. The physician does not preach repentance; he offers absolution." -- H.L. Mencken My surgeons/oncologists wanted me on HT (Zoladex) right after a successful surgery (PSA 8.7, Gleason 8, T3c, no mets, got it all, PSA now unmeasurable ) "just in case". The rationale is that HT may kill any remaining escaped PC cells roaming around my body looking for a happy home, and the sooner we start, the better the PC cell kill rate. I.P. > History is PSA was 18.9 04/20/2002 @ 50 > Biopsy 05/07/2002 Gleason Grade (3+3) [quoted text clipped - 12 lines] > negative. Any opinions will help us. Thanks so much. > Joanna > My surgeons/oncologists wanted me on HT (Zoladex) > right after a successful surgery I thought that recent studies showed no benefit to this approach? SignaturePeter Headland Hi Peter...At current follow-up times, Moul finds early HT to be of benefit after RP failure, only in high-risk cases (PSADT<12 months or GS>7). It will be interesting to see if the benefit extends to lower risk men as the follow-up time increases...Best wishes and good health, Ron The Journal of Urology: Volume 171(3) March 2004 pp 1141-1147 Early Versus Delayed Hormonal Therapy for Prostate Specific Antigen Only Recurrence of Prostate Cancer After Radical Prostatectomy MOUL, JUDD W.* ; WU, HONGYU; SUN, LEON; McLEOD, DAVID G.; AMLING, CHRISTOPHER=A7; DONAHUE, TIMOTHY; KUSUDA, LEO; SEXTON, WADE; O'REILLY, KEITH; HERNANDEZ, JAVIER=A5; CHUNG, ANDREW; SODERDAHL, DOUGLAS Purpose: Hormonal therapy (HT) is the current mainstay of systemic treatment for prostate specific antigen (PSA) only recurrence (PSAR), however, there is virtually no published literature comparing HT to observation in the clinical setting. The goal of this study was to examine the Department of Defense Center for Prostate Disease Research observational database to compare clinical outcomes in men who experienced PSAR after radical prostatectomy by early versus delayed use of HT and by a risk stratified approach. Materials and Methods: Of 5,382 men in the database who underwent primary radical prostatectomy (RP), 4,967 patients were treated in the PSA-era between 1988 and December 2002. Of those patients 1,352 men who had PSAR (PSA after surgery greater than 0.2 ng/ml) and had postoperative followup greater than 6 months were used as the study cohort. These patients were further divided into an early HT group in which patients (355) received HT after PSA only recurrence but before clinical metastasis and a late HT group for patients (997) who received no HT before clinical metastasis or by current followup. The primary end point was the development of clinical metastases. Of the 1,352 patients with PSAR clinical metastases developed in 103 (7.6%). Patients were also stratified by surgical Gleason sum, PSA doubling time and timing of recurrence. Univariate and multivariate Cox proportional hazard models were used to evaluate the effect of early and late HT on clinical outcome. Results: Early HT was associated with delayed clinical metastasis in patients with a pathological Gleason sum greater than 7 or PSA doubling time of 12 months or less (Hazards ratio = 2.12, p = 0.01). However, in the overall cohort early HT did not impact clinical metastases. Race, age at RP and PSA at diagnosis had no effect on metastasis-free survival (p >0.05). Conclusions: The retrospective observational multicenter database analysis demonstrated that early HT administered for PSAR after prior RP was an independent predictor of delayed clinical metastases only for high-risk cases at the current followup. Further study with longer followup and randomized trials are needed to address this important issue. > Hi Peter...At current follow-up times, Moul finds early > HT to be of benefit after RP failure Yes, but IP did not have RP failure at the time when his doctors were advocating a preemptive strike. I though that studies showed that starting HT when PSA is <0.1 and not rising post RP does not improve survival compared with waiting until PSA starts rising? In fact ISTR that even if PSA is <0.1 but rising there is still no advantage to rushing to HT? I admit it seems counter-intuitive that adjuvant HT would not be beneficial. After all, why would it not kill off metastatic cells? But maybe the mechanism by which PCa becomes hormone refractory is triggered by the HT itself, so early HT kills some cells, but also starts the final steps of the dance earlier, leading to the same survival rate? SignaturePeter Headland That's the biggest single reason I refused: it may provide a few extra months of heartbeat (hence an obligation for those who took the Hippocratic Oath), but exacts a high price. I.P. >> My surgeons/oncologists wanted me on HT (Zoladex) >> right after a successful surgery > > I thought that recent studies showed no benefit to this approach? "I. P. Freely" <fuhgheddaboutit@noway.nohow> wrote... > My surgeons/oncologists wanted me on HT (Zoladex) right after a successful > surgery (PSA 8.7, Gleason 8, T3c, no mets, got it all, PSA now [quoted text clipped - 3 lines] > > I.P. I'm on Zoladex, to avoid cancer spreading. Bij various scans with active infusion we know there is a lot of cancer in my body. Such research is expensive. Might it be possible your specialist doesn't want to take the risk and put you on Zoladex? It could be a lot safer, and cheaper, than going throug research... Douwe > "I. P. Freely" <fuhgheddaboutit@noway.nohow> wrote... >> My surgeons/oncologists wanted me on HT (Zoladex) right after a [quoted text clipped - 13 lines] > put you on Zoladex? It could be a lot safer, and cheaper, than going > throug research... The primary reason(s) they want me on ADT are: 1. I had a Gleason 8 cancer with seminal vesicle involvement and a PSAV > 2 per year, rendering my prognosis pretty dismal despite negative surgical margins, no lymph node invovement, and 0.006 post-op PSA. They want to maximize my survival. 2. ADT operates on a percentage/decimation basis, so the lower the PC cell population, the greater the odds of eradicating any remaining stray cells. PC population should be at its lowest the sooner we start. 3. They took an oath to maximize my heartbeat at almost any cost. 4. I doubt they'd find PC cells while my PSA is unmeasurable even with the supersensitive tests. Repeated contrast CTs and bone scans are still negative, and will continue for years. Thus there's no target for RT, so ADT would be the preemptive adjuvant treatment of choice until a met -- i.e., a target -- shows up on some scan. I.P. ... > 1. I had a Gleason 8 cancer with seminal vesicle involvement and a PSAV > 2 > per year, rendering my prognosis pretty dismal despite negative surgical > margins, no lymph node invovement, and 0.006 post-op PSA. They want to > maximize my survival. ... I.P., One advantage of the approach you've taken is that, in spite of the poor odds, it's possible that you really are cured by the surgery. If so, it would be senseless to take ADT. But if you take ADT without a PSA rise, you won't have any way to know if the surgery worked. Your PSA could stay low, probably for years, just due to Lupron. If you wait for a significant PSA rise and then take the Lupron, at least you'll know it's doing something for you and all the side effects aren't for nothing. I won't pretend to try to balance the total advantages and disadvantages of taking or not taking ADT. That's something only you can do for yourself - as you have done. Alan > History is PSA was 18.9 04/20/2002 @ 50 > Biopsy 05/07/2002 Gleason Grade (3+3) [quoted text clipped - 12 lines] > negative. Any opinions will help us. Thanks so much. > Joanna Joanna, I am not an expert, just another patient like most of us in this group. As I understand it, it is standard practice to use Lupron after a "PSA failure" after surgery. What your doctor is recommending is what almost all doctors recommend. The Casodex was an alternative to Lupron which often has fewer side effects, but may not be as strong working against the cancer. The main possibilities for continued treatment are more hormone therapy, radiation, or both. If radiation is advised, adjuvant (at the same time) hormone therapy is often given to try to hit the cancer with two treatments at once. I think your doctor is probably giving you good advice. If it were me, I think I'd take the Lupron and also see the radiation oncologist. If the doctor your husband is seeing now is a surgeon, you might want to switch to a "medical oncologist" who specialized in prostate cancer, if you can find one. The surgeon has done what surgery can do. A medical oncologist may be more up on the kinds of issues that Stephen Jordan raised in his reply. Don't lose heart in all of this. The situation is serious, but not yet terminal. Radiation might be a good option or might not. But even if it's not, hormone therapy might conceivably work for some years, and new treatments are being tested even now and might be available by the time the hormone therapy stops being useful. Best of luck. Alan Alan- As I understand it, Casodex stops the adrenal glands from producing testosterone and Lupron (or Zoladex) stops the testicles from producing it. The adrenal glands produce about 10% of the total testosterone and the testicles, the other 90%. -Gordy > > History is PSA was 18.9 04/20/2002 @ 50 > > Biopsy 05/07/2002 Gleason Grade (3+3) [quoted text clipped - 49 lines] > > Alan Chris says he is almost positive he doesn't want to do the EBRT but WILL go talk to the radiation specialist to see what he has to say. So there is a chance he'll change his mind. Also, his doctor IS the surgeon who did the RP so we'll probably have to find an oncologist rather soon. We just happen to be moving within the next couple months from Chgo (his doc was at Northwestern Mem. Hosp.) and going to the Northwest Indiana area (Chesterton specifically) so if anyone knows of anyone (good oncologists) in that area that they can recommend that would be great. Joanna > Chris says he is almost positive he doesn't want to do the EBRT To be blunt, Lupron is just a delaying tactic. RT offers at least some chance of a cure. SignaturePeter Headland > > Chris says he is almost positive he doesn't want to do the EBRT > > To be blunt, Lupron is just a delaying tactic. RT offers at least some > chance of a cure. That's pretty direct, Peter, but I tend to agree with you. After my prostate surgery and a couple of follow-up checks my PSA was recorded at 0.2. I was elated because it had been 28.4 prior to the surgery but my doctor didn't quite share my enthusiasm. Three months later PSA had risen to 0.4. Still pretty good by my standards but my urologist recommended Lupron then. PSA dropped a bit, then started to rise again. Similar result following a second shot of Lupron, after which radiation was recommended. That took PSA down below the ability of the tests to show anything, where it's been for about three years. Now my urologist is starting to evince some happiness. Ken Bland Chippy, I've considered this a few minutes before writing and I just don't know how to say it tactfully. EBRT gives Chris a small chance at a cure. Hormone Therapy (unless a cure comes down the pike soon) gives Chris longer life, but no cure. 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 PSA .07 .05 .06 .05 non Illegitimi carborundum > Chris says he is almost positive he doesn't want to do the EBRT but > WILL go talk to the radiation specialist to see what he has to say. So [quoted text clipped - 6 lines] > would be great. > Joanna I appreciate your directness Steve. That puts it plainly enough. We found out (from the doctor's nurse)that Chris is not supposed to stop taking the Casodex but start getting the Luron shots in addition to the Casodex (which I didn't realize), Also, does the shot hurt and do you start feeling the effects (like fatigue) right away? Turns out the radiation doc who was recommended to us is out of the country til Sept 2nd (figures with our luck) and now we don't know if it's urgent enough to go see his substitue or wait til the original guy comes back. Chris' doctor is so busy in his practice, he doesn't hardly have time to return calls when he's supposed to in order for us to ask these simple questions of him! That's why I'm asking you. It's very frustrating. How long do you get Lupron? How long is radiation applied normally? (Number of applications per week, how many weeks?) Joanna > I appreciate your directness Steve. That puts it plainly enough. We > found out (from the doctor's nurse)that Chris is not supposed to stop [quoted text clipped - 10 lines] > (Number of applications per week, how many weeks?) > Joanna Joanna, The Lupron injection itself isn't too big a deal. It's a shot in the buttocks. The site will be a little sore for a few days, but on the scale of things involved in cancer, this is really nothing at all. For the first two weeks or so after the injection there is actually a bit of testosterone flare, i.e., more testosterone than before. That's one reason they need to continue the Casodex - to keep the flare from feeding the cancer. Then the effects gradually set in. Side effects vary from individual to individual. I kept in good shape before and during treatment with Lupron and radiation. I also tried to get an extra hour of sleep each night. Perhaps as a result of all that, I experienced no tiredness. However my athletic capacity definitely declined. I went from being able to run 4 miles at a moderate pace down to just being able to jog one mile slowly. I also experienced hot flashes like women get in menopause. They were annoying. They often woke me up at night but I'd go right back to sleep. I had my Lupron over the winter. In the summer they are easier to deal with if you've got air conditioning. But you may already know all about them. There are sexual side effects of Lupron. For the first two weeks, it's actually a positive influence. But after that, sex drive fades away to nothing. Surprisingly, I was still able to have sex by forcing myself to get involved - and once we got started, pleasure and desire returned. But it took an effort to get started. One other side effect I had started about three months after the end of my Lupron treatment. I started to get joint pain in my fingers. Medication was useless but I discovered that exercise could, and did, completely solve the problem. If it were me, I think I'd see the substitute rad onc now and at least learn about the options. I fear that when the other doctor gets back on Sept 2 he'll have a full load of appointments for quite a while. If you all decide to get radiation treatment, the actual treatment isn't administered by the doctors anyway. The docs plan it, map it out, and decide the dosages and treatment angles (which are probably pretty standard at the practice among all the rad oncs there), and then the radiation technicians administer the xrays. I don't think you've told us how old your husband is. Age may be a significant factor in all this. If he's young enough that the cancer is most likely to kill him, then aggressive treatment is more desirable. If he's old enough that he's likely to die one way or another around the same time, then aggressive treatment may be less desirable. Unfortunately, there's no way to know how long he'll live without aggressive treatment, and how long aggressive treatment will prolong life. It's a crap shoot. Some men, like "Justin Case" who posted above, roll a lucky seven and come out scott free. Others get all the treatments and die anyway. Doctors, of course, believe in their treatments and usually advise them. Some may also have mercenary concerns that cause them to advise more treatment than will work. So second opinions are useful. A good medical oncologist specializing in prostate cancer might be the best source of unbiased advice. Best of luck. Alan > we don't know if it's urgent enough > to go see his substitue I am not a doctor, but... With those PSA numbers, it's definitely urgent enough. Move forward as quickly as you can. Don't be afraid to see 2 or 3 more specialists if that's what you need to feel you have all the information you want. SignaturePeter Headland I'll answer in your text: > Also, does the shot hurt and do you > start feeling the effects (like fatigue) right away? The actual shot, for me, is usually painless. By painless, I mean I feel it, but it doesn't hurt. Sometimes, I don't even feel it -- I have to wait for the nurse to tell me she's finished. Once, it was ever so slightly painful, but nothing to be concerned about. Only once did I have pain in the butt after the shot was administered. I noticed on the way out the driveway that my butt was sore. It remained sore for a few days. Otherwise, I experienced no soreness any other time. The first effect is hyper-sexual energy, but with him on Casodex, that may not happen. I experienced hot flashes within the first few weeks, but not any more. I don't feel like I am fatigued, but I walk a lot and I'm very actively employed. My non-cognitive memory has been effected and it is worse today than it was last year. But, it's not something that has adversely affected my home or business life. >Turns out the > radiation doc who was recommended to us is out of the country til Sept [quoted text clipped - 3 lines] > return calls when he's supposed to in order for us to ask these simple > questions of him! I think you need a new doctor. I don't mean to imply that there should be a 1:1 ratio of doctors to patients, but the doctor should not have so many that he cannot talk to them. This is a very serious (read fatal) disease if not treated right and some of the cures carry some side effects too serious to wonder if your doctor is going to be available. As far as switching to another rad doc, I'd defer to Dr. C. Paul Williams. I hope he sees this and answers. I'm thinking that the radiation is largely a computer-driven treatment and there might not be a tremendous difference between a doc an his sub. > That's why I'm asking you. That's what we are here for. Don't feel like you ever have asked too many questions. > How > long do you get Lupron? You get Lupron until it doesn't work anymore. I think I've seen conjectures, but I don't recall them. I'd estimate between 2 and 8 years is an average. > How long is radiation applied normally? Normally, 5 times a week for 6, 7 or 8 weeks. But that varies depending on the cancer and the doctor(s). Hi Gordy..... Zoladex et al stops the production of testosterone.....but Casodex prevents the testosterone from attaching as described below.... Souce is...... http://www.cancerbacup.org.uk/Treatments/Hormonaltherapies/Individualhormonalthe rapies/Bicalutamide#8817 /quote...... Most prostate cancers need supplies of the male hormone testosterone to grow. Testosterone is produced by the testes and adrenal glands. On the surface of the prostate cancer cells are proteins called receptors. Bicalutamide has a structure similar to the male sex hormone testosterone. It works by blocking and preventing testosterone from attaching (binding) to the receptors on the surface of the prostate cancer cells. Without testosterone, the cancer cells either grow more slowly, or stop growing altogether. The cancer may shrink in size. /unquote...... Heather > Alan- > [quoted text clipped - 58 lines] > > > > Alan Heather- OTOH, from AstraZeneca's website www.casodex.com: "The basis of such therapy is called Combination Therapy. Despite surgical or medical castration reducing the supply of testosterone from the testes, approximately 5% of testosterone originates from the adrenal glands and this continues to stimulate a prostate tumour. 'Casodex' a non-steroidal anti-androgen inhibits the effect of this adrenally supplied testosterone." -Gordy Thanks, Gord..... Obviously it works both ways. I understood it to be what I said, but your explanation just adds to the benefits. It definitely works in a different manner than Zoladex or Lupron. Cheers...Heather > Heather- > [quoted text clipped - 8 lines] > > -Gordy
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