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Medical Forum / Diseases and Disorders / Prostate Cancer / May 2005A farewell to Zoladex -- whew!
Hi gang, Just thought I'd step out of the shadows again and crow happily that I have finally said sayonara to Zoladex and all the horrific side effects that the drug has dumped on me. I have been getting those damned shots -- each good for three months -- since February 2004. Was due for another today, but told the urologist who administers them that enough has been too much. I talked last week to the radiation oncologist (who is terrific) and he agreed that the side effects were certainly cause to quit the hormone-deprivation therapy. He said also that I have already had the maximum benefits of the shots. Incidentally, I am 69 years old (unbelievable, no?) and had a PSA of 18 when diagnosed. I had nine weeks of radiation which ended last August. No problem with the radiation, and I think it was the right decision. In earlier posts, I have talked about the way that Zoladex has toyed with the quality of my life, and my woes might be of interest to those forced to consider HT or ADT. Here is a current list that I gave to both doctors for my records: Constant exhaustion. If I still had to work, I don't know how I would get through a day. Weakness like I have never experienced. Often literally too weak to open the cap of a bottle or jar. Almost not enough strength in my legs to carry my body. General aches and pains, as from arthritis. Not enough energy to exercise the aches away! Generally lowered resistance, which is a problem for my longstanding vulnerability to skin afflictions: mainly athlete's foot and jock itch. Loss of short-term memory. Can't remember names and have to search for words. Weight gain, breast development and a "womanly softness." Rare but occasional weepiness. Getting in touch with your feminine side is not all it's cracked up to be. Sexual dysfunction and complete loss of libido. Hot flashes, particularly in the hours just after supper. Depression (and do you wonder?) Also, concern about the drug's effect on osteoporosis and cholesterol. I do have one nice thing to say about Zoladex: I can blame it for everything that's wrong with me. Now that I have ended the shots (which cost $1,900 apiece!!!) I'll have to find some other culprit. Marshall Glad to hear you got the monkey off your back. I note you don't give your PSA, nor do I recall you having given your PSA since you joined our exclusive little club. May I assume ADT knocked your PSA down to <0.1 and it's stayed there ever since? I can partially empathize with the SEs. I've had them all, but apparently not to the same degree. I am still able to walk a lot which helps with the rest.  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 > Hi gang, > [quoted text clipped - 55 lines] > > Marshall >Glad to hear you got the monkey off your back. I note you don't give your >PSA, nor do I recall you having given your PSA since you joined our [quoted text clipped - 4 lines] >not to the same degree. I am still able to walk a lot which helps with the >rest. _______ You must have missed the paragraph that says: " Incidentally, I am 69 years old (unbelievable, no?) and had a PSA of 18 when diagnosed. I had nine weeks of radiation which ended last August. No problem with the radiation, and I think it was the right decision." The therapy did knock it down to .1, which was to be expected. I'll get it tested again in August, and then we'll see. Marshall Yessir! If you said that therapy knocked it down, I sure as hell missed it. Sorry about that. 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 > >Glad to hear you got the monkey off your back. I note you don't give your > >PSA, nor do I recall you having given your PSA since you joined our [quoted text clipped - 17 lines] > > Marshall > I can partially empathize with the SEs. I've had them all, but apparently > not to the same degree. I am still able to walk a lot which helps with > the > rest. Uh, oh . . . you just bumped yourself from the "Minimal ADT SEs" category to the "Significant ADT SEs" category in my ADT SE poll of this newsgroup. Sorry to hear it, but it at least it sounds like yours are much more tolerable than Marshall's. That "Minimal" group is shrinking to near-zero! >> Just thought I'd step out of the shadows again and crow happily that I >> have finally said sayonara to Zoladex and all the horrific side >> effects that the drug has dumped on me. And, Marshall, my hat's off to you for gutting that out to the point of diminishing returns. That alone is a helluva victory you can be proud of, and will let you say at the end, whether it's due to PC or a meteor strike, "Dammit; I did the best I was willing or able to do." That's the way we should all feel about just about everything significant in our lives. I.P. Marshall, To put up with all those side effects, you must be a lot "stronger" than most guys. It must be wonderful to relegate them to the past. Now its time to collect on your investment. Steve U >Hi gang, > >Just thought I'd step out of the shadows again and crow happily that I >have finally said sayonara to Zoladex and all the horrific side >effects that the drug has dumped on me. <snip a diatribe of Marshall's Moans> I suspect you've almost covered the whole spectrum of SE's here! I'm on it, (Lucrin = similar),too and will be 70yrs old come July 11, 2005, when I present for my HDRB. I am scheduled for my last shot of Lucrin, come December 2005. (can't wait for that one). I don't have as many SEs as you but here are some: I constantly suffer from fatigue and have to catnap for an hour or so during the day. I still work, but have become very temperamental and liable to tip the desk over if something bugs me, spit the dummy and go home to bed. This frustrates me as I'm trying to refill the coffers, (from the time out for the RAD), with a few bucks. My existing arthritis and even sources of joint pain from age-old accidents have been exacerbated to the extent I'm on Tramadol to cope with the pain. Suddenly, I've got Cellulitis in my R leg for no apparent reason and am fighting it with oral Antibiotics. I may even have to be hospitalised on a drip to knock it back. Sometimes, my memory goes off a bit as I tend to get ahead of myself, particularly on Drs consultations. But when they remind me it's a SE. I tend to give the "disk" another spin and bleat it out just to prove them wrong. Not completely in touch with my feminine side yet (don't have the figure or the clothes for it LOL), but have wept a for a moment when I get good test results and also at TV soaps where the Loser eventually Wins. On ED, my c(l)ock's been at half past six all the while, but I still enjoy the view of a flagrant young thing with a nice butt, long legs and high heels <eg>. (wonder if I'll be a 71yr old Flasher when the "T" levels return?) Hot flushes, don't know that I've had them, but some weird things happen to the PN in my legs and feet from the Diabetes #2. Depression: Had a big one back in the mid 60's and know the signs. (had more to lose then.) Still take an occasional Valium, but mainly to help thru the night from the broken sleep from pi**ing every 2 hrs. I've asked about a Bone Density test and they say I don't need it yet? Also have Hypertension and Cholesterol issues which are slightly up since the outset of the ADT. Blame is mine for a mis-spent youth, my punishment comes now as ADT, but at least, for me it's FREE! (under a Clinical Trial). The boffins have espoused "You won't die of PCa" and I say "possibly from ADT." -- Reader to complete... -- Please reply to this ng as my email adress is fake: -- Regards -- CC > I've asked about a Bone Density test and they say I don't need it yet? How the hell do they (the boffins?) know that? Are they waiting for pathological fractures such as collapse of one or more vertebrae? Regards, Steve J "'MD' does not mean 'Medical Deity.'" -- Stephen B. Strum, MD "Stephen Jordan" <mycroftscj@earthlink.net> wrote > > How the hell do they (the boffins?) know [that Claence doesn't need a BMD > check]? Are they waiting for > pathological fractures such as collapse of one or more vertebrae? Darn right. The idea is to strengthen bones before they start decaying, rather than try to regain lost ground. I.P. > I've asked about a Bone Density test and they say I don't need it yet? > Also have Hypertension and Cholesterol issues which are slightly up > since the outset of the ADT. My doc has been after me for almost a year to get one. Showed up once and found I need an appointment (was told I didn't). Made an appointment once and something came up. I'm not very good about making medical appointments. But, I am on fosomax just in case. > My doc has been after me for almost a year to get one. Showed up once > and found I need an appointment (was told I didn't). Made an > appointment once and something came up. I'm not very good about making > medical appointments. > > But, I am on fosomax just in case. But is the Fosamax achieving its purpose of reducing bone resorption? The Pyrilinks-D urine test will tell. The QCT (Quantitative Computerized Tomography) BMD test is much more accurate than the DEXA scan. The latter can be corrupted by arthritis and calcium deposits. Regards, Steve J I have no idea if it's working. I know that the drug was issued just in case. Mainly because I'm a "big guy and we might as well start now." I'd be more concerned if I wasn't going to talk to him at the end of this month about IADT. 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 > > My doc has been after me for almost a year to get one. Showed up once > > and found I need an appointment (was told I didn't). Made an [quoted text clipped - 13 lines] > > Steve J On May 21, regarding Fosamax and BMD testing, Steve Kramer replied to me: > I have no idea if it's working. I know that the drug was issued just > in case. Mainly because I'm a "big guy and we might as well start > now." I'd be more concerned if I wasn't going to talk to him at the > end of this month about IADT. Hope it works out. I It's my understanding that IADT should be considered only if the PSA has been "undetectable" for at least a year. I'm to discuss it with my med onc ~October if I continue with UD PSA's. Not to brag (much) but my PSA @ May 16 was <0.01 for the fifth consecutive month. At least the lab didn't screw it up as they did in April. Regards, Steve J > On May 21, regarding Fosamax and BMD testing, Steve Kramer replied to me: > [quoted text clipped - 8 lines] > been "undetectable" for at least a year. I'm to discuss it with my med onc > ~October if I continue with UD PSA's. I've heard two years. My uro said, "a couple of years." Colloquially, a "couple" can sometimes mean a few. In my case, two years will be up during July 2005. My shot this month should carry me through to September 2005. Of course, that's assuming my PSA this month is < 0.1. Marshall, God knows I am definitely not a fan of androgen deprivation "therapy," and my side effects probably were half of yours. However... if you were post-prostatectomy and your PSA was doubling within 10-12 months, and/or PSA 20+, and no detectable tumors... I don't think there's an alternative. Have you considered a different anti-androgen drug? Apparently, they all work differently from each other, and one may cause side effects in some people that others don't. Also... there seems to be some buzz around "periodic" or "intermittant" dosing of Casodex (without Lupron), which could be as effective (or more so), but with fewer reported side effects. Ken Schuster > Marshall, God knows I am definitely not a fan of androgen deprivation > "therapy," and my side effects probably were half of yours. However... [quoted text clipped - 6 lines] > Casodex (without Lupron), which could be as effective (or more so), but > with fewer reported side effects. It's not just the ADTdrugs, per se, that cause the SEs; it's primarily the T deprivation (the objective of all PC ADT), ultimately compounded by SEs from other drugs often required to mitigate the T deprivation SEs. Support for that statement includes the list of effects that occur when our T fails naturally. Changing ADT drugs may help or exacerbate some SEs, but isn't likely to vanish them, because you still have no T. The Casodex buzz goes both ways, and even if Casodex monotherapy were legal in the U.S., I wouldn't pursue it until its buzz swung much more positive. I.P. Marshall... by the way... just before I was about to start that ****ing Lupron and Casodex poison again, I was scheduled for radiation to my breasts, to reduce or prevent enlargement and tenderness. I wasn't told there was such a thing the first two times I had to take that crap. Now I'm in New England with a new doctor. Apparently, that's normal routine here. Also... (regarding Clarence's post here) my doc had me get a bone density scan, and ordered a complete blood panel for pre-medication reference... something else my previous docs never mentioned. Speaking of side effects... A few minutes ago, I read a "news" article that black cohosh is supposed to reduce hot flashes. I took it in powdered capsule form, liquid concentrate in juice and even under my tongue... nothing! (Your results may vary, of course.) Ken Schuster > Marshall... by the way... just before I was about to start that ****ing > Lupron and Casodex poison again, I was scheduled for radiation to my [quoted text clipped - 4 lines] > density scan, and ordered a complete blood panel for pre-medication > reference... something else my previous docs never mentioned. Is it any wonder I harp about SEs? > Speaking of side effects... A few minutes ago, I read a "news" article > that black cohosh is supposed to reduce hot flashes. Speaking of which . . . have you Googled black cohosh in authoritative websites that don't sell the stuff? One such reference is at nccam.nih.gov/news/pastmeetings/blackcohosh_mtngsumm.pdf , and a quick glance doesn't look too bad but does raise many questions. I.P. >Marshall... by the way... just before I was about to start that ****ing >Lupron and Casodex poison again, I was scheduled for radiation to my [quoted text clipped - 11 lines] > >Ken Schuster Just to set the record straight, as a pre-qualification to get into the Clinical Trial, I had Bloodwork involving several tests, numerous X-Rays, including Spinal to interpret any Bone irregularities in the discs, plus a CT scan and a Full Body Bone scan. The latter showed up "black spots" in various places, which were all at DJD/Osteo-Arthritis sites, (even an impacted wisdom tooth which hasn't moved for 5 years.) (no Mets were reported.) At NO time, did I have a BMD scan/test, as the prime marker for this would've been the Spinal X-Ray. The Professor (Rad oncologist) concluded that I was NOT a candidate for Osteo-porosis, ergo, no BMD test, and no need for Bisphosphonates (Zometa). My GP (PCP) also said it was too early to be looking at a BMD test. They both agreed the ADT would exacerbate the OA pain and possibly extend to the older sites, but just recommended a stronger Pain-killer, (Tramadol/Ultram) or equivalent. I will be asking the question again on my next Evaluation on July 04, 2005. -- Reader to complete... -- Please reply to this ng as my email adress is fake: -- Regards -- CC > Just to set the record straight, as a pre-qualification to get into the > Clinical Trial, I had Bloodwork involving several tests, numerous [quoted text clipped - 15 lines] > I will be asking the question again on my next Evaluation on July 04, > 2005. Osteoporosis and/or osteopenia is a well-known SE of ADT. How the onc could have made the flat assertion that CC is "not a candidate" for the condition -- especially as he (apparently) did so *before* CC started ADT -- simply doesn't make sense to me. How could he know that? On May 17, there was an extensive discussion of BMD tests posted on P2P. I think CC reads that site, and recommend that he check it out. I hope that CC gets a better response at the evaluation on July 4. Happy Independence Day, BTW. Should I send a copy of "Yankee Doodle?" :-) Regards, Steve J <snip> >Osteoporosis and/or osteopenia is a well-known SE of ADT. How the onc could >have made the flat assertion that CC is "not a candidate" for the [quoted text clipped - 3 lines] >On May 17, there was an extensive discussion of BMD tests posted on P2P. I >think CC reads that site, and recommend that he check it out. Have posted up there 5 mins ago (they may not like my Format as I'm not a "Team Player" lol.) See if a reply is forthcoming... >I hope that CC gets a better response at the evaluation on July 4. Happy >Independence Day, BTW. Should I send a copy of "Yankee Doodle?" :-) Pass! July 11th is my 70th birthday, my admission for setup for HDRB! What a blast :-(( -- Reader to complete... -- Please reply to this ng as my email adress is fake: -- Regards -- CC |
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