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Medical Forum / Diseases and Disorders / Prostate Cancer / January 2007Safe way to pull the plug on ADT
Hello All, I debating removing myself from the clinical trial I've taken part of since May of 06. A Lupron shot every three months along with a daily regimen of Casodex. The hot flash SEs kicked in immediately, not too bad though. The joint problem SEs kicked in in November. No doubt about it, its a pain in the joint. The weight gain was steady. My glucose level has risen. Its this last SE that has me concerned for diabedies. I'm not sure I like the idea of treating the symptoms of my SEs and continuing on the ADT regimen. Rather, I now feel pulling the plug on the ADT is the wiser decision. I'm scheduled for my next Lupron injection in February. Can I stop the Casodex now or is there a recommended reduction while some Lupron is still in my body? Thanks, WhiteSoxFan (Go Bears) > Hello All, > [quoted text clipped - 14 lines] > > WhiteSoxFan (Go Bears) Hi WSF......your story is much like my husbands. So for what it is worth and saying up front that this is *anecdotal* to satisfy some on here, he quit HT at the same time as you are thinking of doing so, **on his doctor's advice and guidance**. He stopped the Casodex just before Xmas a year ago and the next shot of Zoladex was due at the first of February, 2006. He didn't turn blue or have any appendages drop off, so it is quite safe to do so. (VBG) He had also taken him off Megace for the hot flashes as that drug causes a lot of weight gain. I got the feeling from what Dr. L. said that Casodex caused more of his SE's than the shot. But his SE's were quite bad. He is now on intermittent therapy and we just watch his T and PSA levels. He is due to see the oncologist mid-March. Hope this helps. But do check with your doctor if you would feel better about it. Cheers.....Heather > Hello All, > [quoted text clipped - 13 lines] > > WhiteSoxFan (Go Bears) Sox, I'm sure you can discontinue the Casodex. It is commonly discontinued after just a few weeks anyway. However, before you do anything, I think you should call the clinical trials doctor and talk it over with him. You want to do this for yourself so that he can give you any medical advice. You also owe it to him to explain what you plan to do and why. If you are convinced that the treatment is hurting you, you have a perfect right to quit. But I think it is fair to give him an opportunity to interview you and to do any medical examination that might help him wrap up your participation in the trial in a way that doesn't result in all of the data gathered from you just going down the drain. At any rate, that's my thinking about this. Alan All good points Alan. I intend to make myself available to all parts of the study including sampling and questionaires for the duration of the study, if they want. I've notified the Onc that is treating me during the trial as to my intentions in order to seek his advice and to let SWOG know too. WhiteSoxFan Without knowing anymore, just consider this: Prepare yourself for a rise in PSA. After after being on ADT since May 8, 2004, they only reason that I do not stop is that it is very likely that my PSA would rise from undetectable to something that I would not want to see. Delay, Delay, Delay..... > Hello All, > [quoted text clipped - 13 lines] > > WhiteSoxFan (Go Bears) > Without knowing anymore, just consider this: > [quoted text clipped - 3 lines] > stop is that it is very likely that my PSA would rise from undetectable to > something that I would not want to see. Delay, Delay, Delay..... MAS, If ADT has brought your PSA down very low, you might want to consider some alternative strategies. One is intermittent ADT, where you stop ADT, wait for the PSA to rise to some threshold, then start up again. Another alternative is to reduce the ADT. If you are taking both Lupron and Casodex, eliminate one or the other, or perhaps switch to dutasteride (Avodart) which _may_ have fewer side effects and still hold the PSA low. I'm not qualified to say whether these are viable strategies or whether they're applicable to your case, but you may want to discuss them with your oncologist and seek his opinion. If you are getting ADT from a doctor who is not a real specialist, i.e., an oncologist specializing in the medical treatment of prostate cancer, you might want to get a referral to a specialist in order to consult him on these questions. My impression is that many urologists and radiation oncologists prescribe ADT for their patients, but they're not knowledgeable about it and haven't kept up with research on these issues. Alan > Hello All, > [quoted text clipped - 9 lines] > injection in February. Can I stop the Casodex now or is there a > recommended reduction while some Lupron is still in my body? *Tough* question, very personal, and raises several questions. 1. Why are you on ADT . . . just in case or trying to suppress existing mets? 2. Do you trust your clinical trial adviser to give you an honest answer if you ask her, "Should I quit"?, or would she be biased towards keeping her study fully stocked with patients? 3. Weight gain still requires calories in > calories out. Is the study worth the extra effort and discipline required for weigh control? 4. How much help do meds and exercise provide for the joint pain? 5. What are the extra risks of those meds? 6. What do you want and expect from the ADT? 7. Would weight control stop the diabetes, or do the meds themselves directly exacerbate the diabetes? 8. Do the hot flashes warrant meds? 9. Are they worth their SEs, if any? 10. You are being treated to prevent osteoporosis, right? Any SEs from THAT med? I.P. I've interspersed my answers with each question. WSF > *Tough* question, very personal, and raises several questions. > 1. Why are you on ADT . . . just in case or trying to suppress existing > mets? -----------I qualified in a clinical trial because I had an RP, had a <0.1 PSA after the RP with no mets or positive nodes and have an aggressive Gleason. The trial is comparing ADT to ADT plus chemo. They want to see if ADT or ADT plus chemo before a rise in PSA after RP is helpful. I was selected into the ADT only arm. > 2. Do you trust your clinical trial adviser to give you an honest answer > if you ask her, "Should I quit"?, or would she be biased towards keeping > her study fully stocked with patients? --------- That's like choosing RP or seeds. Ultimately they say "its your decision" which in my mind means "we don't really know what's best". > 3. Weight gain still requires calories in > calories out. Is the study > worth the extra effort and discipline required for weigh control? --------- The extra 10 pounds I've put on is not an issue. > 4. How much help do meds and exercise provide for the joint pain? --------- Also not the overriding issue. > 5. What are the extra risks of those meds? --------- I don't know. > 6. What do you want and expect from the ADT? --------- My PSA was already at <0.1. The ADT zeros out my T. I've read studies that state T feeds PCa. I've read studies that state that T helps to rid PCa. Eventually, the body manufactures T in other places. I truly believe our bodies are so adaptable that they can play both sides of the street. > 7. Would weight control stop the diabetes, or do the meds themselves > directly exacerbate the diabetes? -----------Yes and yes. > 8. Do the hot flashes warrant meds? -------- No > 9. Are they worth their SEs, if any? -------- If its ADT you're talking about here, than no. > 10. You are being treated to prevent osteoporosis, right? --------- No, only monitored. >Any SEs from THAT med? I have seemly dozens of choices on how to fight PCa. My oncologist seems to be locked into the pharmacuticals method of treatment. That's to be expected, I don't fault him for that. I however, want to take the fight in an integrated direction. No one knows if a two year regimen of ADT with or without chemo before PSA rises works. Thats why they are trialing it. I'm no longer willing to be part of that trial for 2 years. WSF >> *Tough* question, very personal, and raises several questions. >> 1. Why are you on ADT . . . just in case or trying to suppress existing >> mets? > -----------I qualified in a clinical trial because I had an RP I *qualify* for ADT, RT, noni juice, and voodoo, but that doesn't mean I will or must chose any of them. The real question you must answer for yourself is whether ADT's benefits are worth the SEs you experience. The question is extremely complex because some of the SEs can be mitigated or even eliminated with further meds (usually with their own SEs), and the benefits are pure guesswork because their statistics are all over the map, averaging 6-8 months plus or minus *wide* ranges. It took me months of intensive research to choose my poison with negative margins, no mets, and Gleason 8. >> 2. Do you trust your clinical trial adviser to give you an honest answer? > they say "its your decision" which in my mind means "we don't really > know what's best". I agree with that, but they should provide you with plenty of pros and cons and statistics for your consideration. They sound forthright about it, although surely they must have *some* bias towards keeping their trial populated. > --------- The extra 10 pounds I've put on is not an issue. Even 10 pounds can exacerbate borderline Type II diabetes. I'd want to know more about that effect vs the direct effect of ADT chemicals on diabetes. >> 4. joint pain? > --------- Also not the overriding issue. >> 5. What are the extra risks of those meds? > --------- I don't know. >> 8. Do the hot flashes warrant meds? > -------- No Sort of sounds to me that your primary objection might be the accumulation of multiple moderate SEs rather than one major one. I wonder, therefore, if by treating each one you might reduce the overall SE to an acceptable level. Again, a very personal call. Maybe you'd be one of the relatively few people who gain years of life extension with ADT. >> 6. What do you want and expect from the ADT? > --------- My PSA was already at <0.1. The ADT zeros out my T. I've read > studies that state T feeds PCa. I've read studies that state that T > helps to rid PCa. Eventually, the body manufactures T in other places. What I'm really asking in #6 is what outcome, in terms of cure or life extension, you expect from ADT. The details are secondary. For me, given that I feel great, have no indication that I'm not cured, and see minimal benefit in the literature from pre-emptive ADT, the QOL hit of ADT was my primary concern. >> 7. Would weight control stop the diabetes, or do the meds themselves >> directly exacerbate the diabetes? > -----------Yes and yes. The second "yes" surprises me. Can you or anyone else support that link? All I've seen so far is that the diabetes exacerbation seems due to the weight gain, which implies the meds do not cause it directly. >> 10. You are being treated to prevent osteoporosis, right? > --------- No, only monitored. I suppose that may be good enough, as long as they jump right in with the bone-preserving meds the minute they see bone loss. It's usually significant before two years on ADT, and not easily reversible. > I have seemly dozens of choices on how to fight PCa. > I however, want to take the fight in an integrated direction. I'm at the same point you are -- post RP and against ADT *for me* -- but am aware of only a couple of choices, not dozens: ADT, RT, or conceivably chemo. Those are potentially serious stuff, not warranted with "zero" PSA by any studies I've seen unless one's *ONLY* criterion is absolutely maximum duration of heartbeat *and* one does not believe the studies that imply ADT may accelerate and intensify recurrence. > No one knows if a two year regimen > of ADT with . . . before PSA rises works. Actually, they do know, with one exception I'm aware of, depending on what you mean by "works". If "works" = *cure*, only one trial says it can, and only under special circumstances. The general consensus is that ADT can not cure PC, merely delays it at best. > I'm no longer willing to be part of that trial for 2 years. The one trial that said ADT might cure PC relied on many years of ADT, and I have no idea how sound that trial was. When I researched ADT < two years ago, even 2 years on ADT was not proved to help; the shortest time frame then was 26 months, and much of their extra time above ground, if any, was spent in sleep due to the ADT-induced fatigue. The only way we'll know if ADT was right or wrong for us is a) if we avoid ADT and die of something else or b) accept ADT and still succumb to PC, and we (hope we) won't know the outcome any time soon. I.P. |
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