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Medical Forum / Diseases and Disorders / Prostate Cancer / January 2005Switching to Intermittant Hormone Therapy
I have been on Lupron for about a year. The side effects have really affected my QOL. Fatigue, joint pain and hot flashes, not to mention the loss of sexual drive finally let me to decide to terminate HT at least for a while. Had a long talk with my URO. Surprisingly enough, he agreed with my approach. He has been in the PCa business for 30 years and I am impressed by his knowledge and past experience. He said that intermittant HT is becoming more common in recent years since younger men are being diagnosed and treated for PCa and their QOL is important to them mainly for sexual activity, but also to maintain a low fatigue level in order to perform their jobs, etc. There is not a long history of intermittant HT data available as there is for traditional HT, but from what he has seen so far, it looks very promising. Also by stopping at a year instead of the usual 2 yrs or more, I should be able to lenthen the time at which I would become hormone refractive. Sort of like putting the 2nd year :in the Bank" for use later if needed. He will monitor my PSA and Testostreone levels and if necessary I can get a Lupron shot in the future if needed. Since I am almost 70 yrs old, I think this makes alot of sense. He said that when he gets PCa ("every man will get PCa if he lives long enough") he will definitely go the intermittant HT route. I currently have a Viadur inplant which is Lupron in a one year dose, which was inserted in Sept. I will be having it removed 8 months early, but I feel that my QOL will improve enough to let me enjoy life for a while - or until something else takes me out. Would appreciate comments. Has anyone else gone this route?? Thanks George Age - 69 8/12/02 - PSA 3.7 10/13/03 - PSA 4.69 11/11/03 - PSA 4.8 11/18/03 - Biopsy - 10 cores one core-25% of core-Gleason 4+4=8 all other cores benign tissue 12/10/03 - Consult - Oncologist MD 12/16/03 - Consult - Radiation Oncologist Treatment Plan - Northeast Ga Cancer Center HT - started 12/17/03 - Eulixen & Lupron (2nd 4 mo Lupron-4/26) 2/10/04 - Started - Flowmax and Megastrol Radiation - IMRT to begin 3/30/04 - 42 treatments - Completed 6/8/04 8/30/04 - 1 yr Viadur Implant instead of 4mo Lupron You should check out Strum's article in J Urol 161:156A, 1999. It clearly shows that if you add finasteride during intermittent blockade, you get a lower PSA faster, and if you add finasteride during your off time, it significantly lowers the growth rate of your prostate cancer. This approach has also been used very successfully in http://theoncologist.alphamedpress.org/cgi/content/full/6/2/177 Ed Friedman > I have been on Lupron for about a year. The side effects have really > affected my QOL. Fatigue, joint pain and hot flashes, not to mention the [quoted text clipped - 38 lines] > Radiation - IMRT to begin 3/30/04 - 42 treatments - Completed 6/8/04 > 8/30/04 - 1 yr Viadur Implant instead of 4mo Lupron Yes, but the benefit is slim, and there's a price: Androgen ablation with finasteride prevented or delayed the development of prostate tumors in treated men from 24 to 18% -- big whoop -- but correlated with more, higher-grade refractory tumors. From N Engl J Med 2003;349:3:215-24. "Finasteride to prevent prostate cancer?": "finasteride prevents or delays the appearance of prostate cancer, but this possible benefit and a reduced risk of urinary problems must be weighed against sexual side effects and the increased risk of high-grade prostate cancer (Gleason 7-10)." They further state that "physicians can use these results to counsel men regarding the use of finasteride." And the beat goes on. I.P. > You should check out Strum's article in J Urol 161:156A, 1999. It > clearly shows that if you add finasteride during intermittent blockade, [quoted text clipped - 48 lines] > > Radiation - IMRT to begin 3/30/04 - 42 treatments - Completed 6/8/04 > > 8/30/04 - 1 yr Viadur Implant instead of 4mo Lupron > Yes, but the benefit is slim, and there's a price: Androgen ablation with > finasteride prevented or delayed the development of prostate tumors in > treated men from 24 to 18% -- big whoop -- but correlated with more, > higher-grade refractory tumors. First of all, we are talking about someone who already has prostate cancer, not about prevention. If you check out the Strum article you will see that the benefit is significant and not "slim". Secondly, there is considerable debate about the grading in the NEJM you cited. A number of doctors, including Gleason, claim that they erroneously labeled cells as being more aggressive than they really were. Apparently, finasteride changes the appearance of all prostate cells and that has to be taken into account when grading cells that have been exposed to it. Ed Friedman I saw the post-finasteride grading debate, and will look further into it if I consider that option. But to me a 6% improvement in risk is easily offset by an increase in the number and severity of high-grade tumors. Just something for us to be aware of. I.P. > > Yes, but the benefit is slim, and there's a price: Androgen ablation with > > finasteride prevented or delayed the development of prostate tumors in [quoted text clipped - 13 lines] > > Ed Friedman > I saw the post-finasteride grading debate, and will look further into it if > I consider that option. But to me a 6% improvement in risk is easily offset > by an increase in the number and severity of high-grade tumors. Just > something for us to be aware of. > > I.P. Again, you are missing the point of the Strum article. Basically, he found that without finasteride, mean PSA velocity was 5.25 ng/ml/year vs. 1.43 ng/ml/year for those with finasteride. That looks like a 367% improvement to me, not the 6% that you are claiming. Ed Friedman You're talking PSA DT (apples) and I'm talking 5- and 10-year survival and/or recurrence (oranges). 1. Is Strum's article about adjuvant therapy (post RP or RT), or monotherapy? 2. ADT affects only the ADPC, protecting our psyches while the AIPC increases in mass and impact on our bodies. 3. ADT 2 and 3 show no survival benefit over ADT1. And on and on. I'm just pointing out that there is no free lunch, and people need to lift the top piece of bread and see what's in a sandwich before eating it. I.P. > > I saw the post-finasteride grading debate, and will look further into it if > > I consider that option. But to me a 6% improvement in risk is easily offset [quoted text clipped - 9 lines] > > Ed Friedman > I have been on Lupron for about a year. The side effects have really > affected my QOL. Fatigue, joint pain and hot flashes, not to mention the [quoted text clipped - 38 lines] > Radiation - IMRT to begin 3/30/04 - 42 treatments - Completed 6/8/04 > 8/30/04 - 1 yr Viadur Implant instead of 4mo Lupron I am with you as afar as the Lupron is concerned. My QOL took a nose dive. Joint pain was one thing but this latest pain reminds me of broken bones. I've been on Lupron for only two four-month doses eight months but I am now going onto the tenth month and the flashes, pains and almost zero sexual drive is still here. The fatigue is getting better...slowly as is the drive. I think there is more to this Lupron than they let on. I go for my sixth month check-up after EBRT next week. I will be emphatic about no more Lupron. Chuck McClellan It irritates me that so many doctors think only of the sexual SEs. The medical field has been on our case for decades to EXERCISE. Well, who wants to exercise when they feel like road kill, especially road kill with arthritis, hot flashes, a broken hip, and the short-term memory of an Alzheimer's patient? I know MANY people whose exercise is among the 2 or 3 most important elements -- often #1 -- of their lives, and that doesn't even include the runners. I had to present my priorities in writing to my doctor to convince him how important my vigor is to me. And it's not just prostate docs; I hear it from yet another active person every month or so that their doctors are clueless about what a petient expects of his/her life; an orthopedic surgeon just asked me today whether I really need my elbow and hand fully functional, as though outpatient tendon surgery was worse than permanent disability and pain. Save it for the couch potatoes, guys. I haven't been the IAD route yet, partly because your case is in my keeper file to remind me of the threat of HT, intermittent or not, including the threat of permanent SEs from IAD. If I were in your diapers, I'd ask myself this question: Do I want to feel like this for the rest of my life? Hint: There's no right answer across the board; it's a personal choice with many criteria. I.P. > I have been on Lupron for about a year. The side effects have really > affected my QOL. Fatigue, joint pain and hot flashes, not to mention the > loss of sexual drive finally let me to decide to terminate HT at least for a > while. snip > Would appreciate comments. Has anyone else gone this route?? > It irritates me that so many doctors think only of the sexual SEs. The > medical field has been on our case for decades to EXERCISE. Well, who wants [quoted text clipped - 20 lines] > I.P. > The lack of proper exercise has also caused problems in maintaining a decent blood sugar level (I've been type II for about 5 yrs). I don't take meds - just diet and exercise and the higher blood sugar during the past months has has added to the fatigue level. When I went to see my primary Dr to see about getting meds to help lower my sugar he looked at my midsection which has the swollen Lupron look and said "take off some of that weight and you'll be OK. I'm still at the 200 lbs that I have kept for the last 5 years - the Lupron has "shifted it". Needless to say My medical records have been pulled from his office and sent to a Dr my URO recommended. GP's and Family Practice Docs might be good for a nose cold or a splinter, but other than that - THEY SUCK. Neither he nor his partner had any knowledge of the side effects of the Radiation treatments I took, which were pretty nasty by the time I finished them. My URO had to prescribe some meds to get it sorted out. Exacerbation of pre-existing Type II diabetes is one of the expected SEs of ADT. The prescribed intervention is heightened exercise and dietary weight control. I.P. > The lack of proper exercise has also caused problems in maintaining a > decent blood sugar level (I've been type II for about 5 yrs). I don't take [quoted text clipped - 10 lines] > the time I finished them. My URO had to prescribe some meds to get it sorted > out. I don't know that docs ignore other SEs. Mine told me that sexual was one, but that's going to occur in everyone. Mine told me there might be others. Each time I visit, he thoroughly quizzes me. I think it's a matter of not dwelling on those that may not occur. And, let me tell you, exercise is the best cure for those aches and pains of which you speak. I have a hell of a time, sometimes, taking the first step out of the house, but once I've gone half a mile, I'm really happy I did it. Furthermore, the Alzheimer's-like description is far from the actual effect, at least in my case.  SignatureProstate Cancer Survivor (so far), not a doctor PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3bN0M0 PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron (1 mo) 07/21/2003 @ 48 PSA .07 .05 .06 Lupron (4 mo) 8/03 (48), 12/03, 4/04 (49), 09/04 (50) non Illegitimi carborundum > It irritates me that so many doctors think only of the sexual SEs. The > medical field has been on our case for decades to EXERCISE. Well, who wants [quoted text clipped - 27 lines] > snip > > Would appreciate comments. Has anyone else gone this route?? I'd rather know what serious SEs are highly likely, somewhat likely, or quite possible, so I can be part of the decision. My vote is meaningless if I don't know the facts, and my QOL depends on the outcome. Putting less research into our PC treatment than we put into buying a car, or asking the salesman which car we should buy, is pretty lame, IMO. BTW . . . do you know how effective the HT is in bottoming out your T? I.P. > I don't know that docs ignore other SEs. Mine told me that sexual was one, > but that's going to occur in everyone. Mine told me there might be others. [quoted text clipped - 7 lines] > Furthermore, the Alzheimer's-like description is far from the actual effect, > at least in my case. I see you point. I certainly would want to know quite a bit about what the treatment, any treatment, is expected to do. I would also want to know quite a bit about what serious SEs are possible. I personally would now research for myself all those other SEs that are possible. There are, I suppose, varying opinions as to where along the continuum the patient assumes the responsibility. SignatureProstate Cancer Survivor (so far), not a doctor PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3bN0M0 PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron (1 mo) 07/21/2003 @ 48 PSA .07 .05 .06 Lupron (4 mo) 8/03 (48), 12/03, 4/04 (49), 09/04 (50) non Illegitimi carborundum > I'd rather know what serious SEs are highly likely, somewhat likely, or > quite possible, so I can be part of the decision. My vote is meaningless if [quoted text clipped - 23 lines] > effect, > > at least in my case. My opinion is that any time I assume a doctor is telling me everything a layman could/should understand about his problem, I'm getting what I deserve. 1. Doctors are swamped. The orthopedic surgeon I consulted yesterday for an elbow problem saw me less than four minutes on our first visit. From that he recommended surgery and was gone. 2. Doctors swore an oath to keep our hearts beating for as long as possible, SEs be damned. 3. According to urologists, books, and books written by urologists, many -- up to 95% -- of urologists don't inform their patients, mayber don't even know, of some of the severe and highly likely ADT SEs, such as osteoporosis and its attendant hip and spine fractures. I.P. () > I see you point. I certainly would want to know quite a bit about what the > treatment, any treatment, is expected to do. I would also want to know [quoted text clipped - 3 lines] > There are, I suppose, varying opinions as to where along the continuum the > patient assumes the responsibility. I.P...I thought the first tenet of their oath was "do no harm"...Ron Nope. Ask Google. I.P. > I.P...I thought the first tenet of their oath was "do no harm"...Ron Hippocrates gave the charge, "Primum non nocere - First, do no harm," to his medical students almost 2,500 years ago. To this day, budding physicians start out on their medical careers holding up their right hand, swearing allegiance to the legendary Hippocratic oath. I realize that this phrase is not in the Hippocratic oath, but perhaps you're missing my point. Many doctors are more concerned with things other than what you attributed ("Doctors swore an oath to keep our hearts beating for as long as possible, SEs be damned")...Ron So why do many of the books and personal experiences discussed in this forum criticize doctors and major clinical trials for valuing survival time over SEs? I.P. > Hippocrates gave the charge, "Primum non nocere - First, do no > harm," to his medical students almost 2,500 years ago. To this day, [quoted text clipped - 5 lines] > other than what you attributed ("Doctors swore an oath to keep our > hearts beating for as long as possible, SEs be damned")...Ron > So why do many of the books and personal experiences discussed in this forum > criticize doctors and major clinical trials for valuing survival time over > SEs? I'd say because the normal western-cultured male (I hope that captures almost all of us) values, or at least thinks he values quantity over quality of life. Rarely does someone say their priorities are not 1) Life with incontinence & impotence coming in at #2 and #3 (either alternatingly or tied). All other SEs generally come below those. That list is almost inviolate except for 1) those who have experienced the SEs and changed their list in retrospect; 2) those who have watched another die from PCa; or 3) those who never considered they had much of a life in the first place. SignatureProstate Cancer Survivor (so far), not a doctor PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3bN0M0 PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron (1 mo) 07/21/2003 @ 48 PSA .07 .05 .06 Lupron (4 mo) 8/03 (48), 12/03, 4/04 (49), 09/04 (50) non Illegitimi carborundum I'd add a fourth group to those who'd place those three priorities way below many of the other QOL factors. My fourth group would be the opposite of your third group: 4) people with an extremely high QOL which SEs would immediately and dramatically alter. In my case, and that of many fellow adrenaline junkies, our ability to play is #1. Included are many mountain and rock climbers, sky divers, hang gliders, racers, etc. whose obsessions are inherently risky, plus those whose adrenaline trigger may not be risky but who would still choose their obsession over a few extra months -- maybe -- of heartbeat years down the road. Any one of many of the common ADT SEs would cut our QOL by way more than 50% (we long ago gave up trying to explain our adrenaline addiction to non-believers). In addition, the common SEs of depression and extreme irritability make not only our lives but those of our spouses miserable. Many of us in that group value several years of high QOL to several years of low QOL PLUS, MAYBE, a few extra months of . . . ta da . . . low QOL. I meet none of the three criteria for changing the priority list, but the more I read, the more I feel that early adjuvant ADT blows. I.P. > > So why do many of the books and personal experiences discussed in this > forum [quoted text clipped - 11 lines] > die from PCa; or 3) those who never considered they had much of a life in > the first place. What oath? The same one that says do no abortions? take no pay? SignatureProstate Cancer Survivor (so far), not a doctor PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3bN0M0 PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron (1 mo) 07/21/2003 @ 48 PSA .07 .05 .06 Lupron (4 mo) 8/03 (48), 12/03, 4/04 (49), 09/04 (50) non Illegitimi carborundum > I.P...I thought the first tenet of their oath was "do no harm"...Ron > I have been on Lupron for about a year. The side effects have really > affected my QOL. Fatigue, joint pain and hot flashes, not to mention the > loss of sexual drive finally let me to decide to terminate HT at least for a I have joint pain. It started about month 5-6 on the Lupron. The pain is in my toes and right fingers. The hot flashes don't bother me. What is surprising is how much fatigue I have. Also, there're been periods of disorientation. Not overt confusion but when I'm doing detail work, software debugging, financials, I've made mistakes. "How could I have done that?" That kind of mistake. > Would appreciate comments. Has anyone else gone this route?? > Thanks I don't know about the "banking a year". I'm going to see the doc tomorrow for the 3rd four month shot. Do I beg off and bank it or do I take the shot hoping that it surpresses any stray cancer cells? > > I have been on Lupron for about a year. The side effects have really > > affected my QOL. Fatigue, joint pain and hot flashes, not to mention the [quoted text clipped - 17 lines] > Do I beg off and bank it or do I take the shot hoping that it > surpresses any stray cancer cells? It can also screw up your short term memory. To what extent the side effects will go away after stopping Lupron is also a variable from one person to another. Intermittant hormone therapy sounds attractive, but perhaps should be considered by those with less aggressive tumor cells( Gleason 7 or less) Logically,the high Gleasons would be more likely to advance in the interim, don't you think? > Intermittant hormone therapy sounds attractive, but perhaps should be > considered by those with less aggressive tumor cells( Gleason 7 or less) > Logically,the high Gleasons would be more likely to advance in the > interim, don't you think? In Olfart's case, he was put HT as an adjunct to radiation. It's possible that he doesn't need it at all. It's possible that all of his cancer was obliterated by the radiation. The HT is being used as a sort of "just in case" therapy - just in case some cancer cells were weakened by radiation but need a little extra nudge to finish them off, or just in case some cells wandering around his blood stream can be discouraged from attaching to tissue and metastasizing. If I were in Olfart's situation (well, actually, I am in that situation - having had adjuvant HT with my radiation, though I had Gleason 7 not 8) I would (and did) get off HT. So far my PSA seems to be controlled (.8 at 6 months, .6 at 9 months). I don't plan to go back on HT unless it becomes clear that my PSA is rising again. If that happens (I'll get my 12 month checkup next week) then I'll still use HT with some concern for minimizing the total hormone effect. But, as we always say, I'm not a doctor and not an expert on all this. My opinion is based only on my own reactions to HT, and my layman's reading of the medical literature. Alan > Intermittant hormone therapy sounds attractive, but perhaps should be > considered by those with less aggressive tumor cells( Gleason 7 or less) > Logically,the high Gleasons would be more likely to advance in the > interim, don't you think? Could be, but I guess I am on intermittent, as I have been off of hormone therapy since early 2001 and am going to restart next month. My Gleason was a 4+5=9. It has taken all of this time for my PSA to rise to just 11.4 as of 11/01/2004. Will have a test in Feb and then restart hormone therapy. This few years of drug "holiday" have been worth everything to me. Dale P I can't believe people with half a life to begin with CHOOSE to destroy their lives with wreckreational drugs. I.P. > Will have a test in Feb and then restart hormone therapy. > This few years of drug "holiday" have been worth everything to me. > I can't believe people with half a life to begin with CHOOSE to destroy > their lives with wreckreational drugs. [quoted text clipped - 3 lines] > > Will have a test in Feb and then restart hormone therapy. > > This few years of drug "holiday" have been worth everything to me. How true. The doctors really push for hormone therapy for recurring prostate cancer because it is the only treatment that has a proven track record. . Even though it seems that the extension of life is usually a matter of months. One urologist (who I highly respect) said "what are a few side effects compared to cancer?". Well, he is not the one with the side effects, and he did respect my decision to stop HT in 2001. I am very unhappy (depressed) about going back on HT, but do agree that I should be doing something to slow this cancer for awhile. I am hoping for about six months to one year of HT, then another holiday. It is a very hard decision to make, as most people are ready to jump at any treatment that seems to be helping. Dale P Intermittant hormone therapy sounds attractive, but perhaps should be considered by those with less aggressive tumor cells( Gleason 7 or less) Logically,the high Gleasons would be more likely to advance in the interim, don't you think? Intermittant hormone therapy sounds attractive, but perhaps should be considered by those with less aggressive tumor cells( Gleason 7 or less) Logically,the high Gleasons would be more likely to advance in the interim, don't you think? |
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