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Medical Forum / Diseases and Disorders / Prostate Cancer / November 2007Your experience with ADT
Guys: As I get closer to qualifying for a clinical trial (either chemo & ADH or just ADH ...link to study = http://tinyurl.com/34cev5 ). I wonder how the hormone therapy is going to effect my quality of life (and work). I realize that clinical studies and any medical treatment usually comes with a myriad of potential side effects and those side effects vary by individual. Nonetheless I am curious what side effects you had/have and what you found most effective to mitigating the side effects? I have read publications from PCRI on preventing and treating side effects but I am curious what your personal experience is. Thanks in advance for sharing. Have a Happy Thanksgiving. CURRENT AGE = 51, Overall good health (need to lose weight). 6/03 - PSA 2.0, 6/04 - PSA 2.5, 8/05 - PSA 4.2, 11/05 - PSA 5.89 BIOPSY 8/16/05, T2A, 3+5 = 8 RP @ MSKCC 12/13/05 PATHOLOGY GLEASON 3+5=8 TERTIARY 4, SEMINAL & LYMPH - NEG EXTRACAPSULAR EXTENSION TO MARGIN POSITIVE MARGIN - RIGHT APEX PSA POST RP 1/26/06 = 0.5, 2/1/06 = 0.55 PSA on 3/27/06 = 0.95 START SRT ON 3/27/06 FINISHED SRT 5/19/06 06-20-06 - PSA 0.24 07-08-06 - PSA 0.15 09-14-06 - PSA 0.10 12-19-06 - PSA 0.08 02-07-07 - PSA 0.09 08-17-07 - PSA 0.31 10/02/07 - PSA 0.48 11/05/07 - PSA 0.61 > Guys: > [quoted text clipped - 43 lines] >frequent urination problems, NO sex, frequent diarrhea, over-all feeling >like crap. I am hoping that my Intermittent Therapy last for years. >> I have been on ADT for 1-1/2 years. PSA has been less than 0.1, >> testosterone between 14 and 25. Stopped ADT on 11/01/2007 and going on [quoted text clipped - 5 lines] >> diarrhea, over-all feeling like crap. I am hoping that my Intermittent >> Therapy last for years. Thanks, Bob, and congrats ... you just got added to my poll results, too. While I realize my poll is not scientific or statistically meaningful, it is still scary as hell. I have nothing but admiration for a man who can go through that before it becomes fun compared to his PC symptoms. I.P. > > Guys: > [quoted text clipped - 45 lines] > > - Show quoted text - Bob thanks for sharing. I sorry to hear of your ordeal. I hope intermittant therapy is kinder to you. All the best. Hope you have a nice Thanksgiving. > As I get closer to qualifying for a clinical trial (either chemo & > ADH or just ADH ...link to study = http://tinyurl.com/34cev5 ). I [quoted text clipped - 9 lines] > effects > but I am curious what your personal experience is. I think it is a serious mistake to focus on the side effects in making your decision. Once on ADT, you can go off ADT if it gets to bad. I have no chemo experience yet, so I'll just address my ADT experience. Hot flashes - Had 'em early on. But, for some reason, I do not anymore. Sometimes, I find myself soaked with sweat if I've wrapped myself up in my comfortable, but not often. Joint disorders - Are listed and I have my share of them, but I cannot blame them on ADT since I also have some arthritis. Testicle shrinking - is listed, but I think mine started with prostate removal. Weakness - Without a doubt. But, I still do very well. I work 40 hours a week in an active job and I help my son and sons-in-law with heavy work sometimes. I notice it more when ascending steps. Breast development - I didn't have this until adding Casodex. It's minimal, but somewhat painful. Decreased sex drive - Let's say no sex drive Weight gain - I gained 30 pounds at and after starting ADT. To combat these and other side effects I work 40 hours a week in an active job. I walk 3-5 miles a day, 3-5 days a week, but somewhat less in the winter. I sleep eight hours every night and generally the same hours every night. I drink a lot of water. I used to drink about 2 liters, but have water by my desk at work, in a cooler in my truck, and at my house; so I am well beyond 2 liters, I think.  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 PSAD 0.19 years EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 PSAD .056 years Lupron 07/03 (1 mo) 8/03 and every 4 months there after PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.4 years Casodex added daily 07/06 PSA <0.04, <0.05, <0.04, <0.04 10/11/07 Non Illegitimi Carborundum > I think it is a serious mistake to focus on the side effects in making your > decision. Thats your prerogative, but I presume you're aware that the PCRI's Scholz says “The biggest difference between adjuvant treatments is QOL, not survival; choose by SEs.” I.P. > > I think it is a serious mistake to focus on the side effects in making your > > decision. [quoted text clipped - 4 lines] > > I.P. The hormonal arm of this study is full blockade.... Lupron every 3 weeks for 10 times and Casodex orally for 30 days. The other arm is Lupron every 3 mo's for 18mo's & Casodex for 30 days. I wasn't going to get another opinion but I think I'll go back to the med onc at Hopkins before I make the plunge. I suspect unless I go decide to do something radical (like nothing) I'll have to deal with ADT sooner or later especially with my PSADT of <4mo. - Dom >> I think it is a serious mistake to focus on the side effects in making >> your decision. > > Thats your prerogative, but I presume you're aware that the PCRI's Scholz > says “The biggest difference between adjuvant treatments is QOL, not > survival; choose by SEs.” I don't know Scholz and was not aware of his statement. However, in that his statement is directed toward multiple options with the same outcome, then, yes, SEs becomes the tie-breaker. The question on the floor, however, is deciding between treatment or no treatment. To that, Kramer says, "The biggest difference between treatment and non treatment is survival and while some SEs will always present themselves, QOL cannot be rated until the individual experiences the SEs for himself." You can quote me if you like. And, while we're on the subject, I would have to say that the side effects of the stuff has caused me to have, in some respects, the best quality I've had in my life. With my water intake, walking, and sleep patterns, necessitated by SEs, I am enjoying my life more than ever. One might even say I am healthier than I have ever been; other than, of course, the fact that I'm dying. 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 PSAD 0.19 years EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 PSAD .056 years Lupron 07/03 (1 mo) 8/03 and every 4 months there after PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.4 years Casodex added daily 07/06 PSA <0.04, <0.05, <0.04, <0.04 10/11/07 Non Illegitimi Carborundum he If not taken out of context, I would say only that he and I disagree. Except, that maybe we do not. If he is saying that where there are multiple treatments from which to choose, > I don't know Scholz and was not aware of his statement. He's co-founder and Executive Director of the Prostate Cancer Research Institute and a co-author of the Androgen Deprivation Syndrome treatise generally attributed to Strum. We've discussed his statement several times; his “The biggest difference between adjuvant treatments is QOL, not survival; choose by SEs.” strikes me as pretty profound professional advice. > The biggest difference between [ADT] treatment and non treatment is survival My research and the vast majority of the research I've seen cited in this forum disagree with that, especially since ADT is not regarded as curative. > QOL cannot be rated until the individual experiences the SEs for himself That depends on one's criteria. Dom says his very active lifestyle is vital to him, and Scholz, I believe it was, said that ADT is virtually guaranteed to devastate active lifestyles. In my book, and apparently in Dom's, the rest of the SE list are just secondary, smaller, turds in the punchbowl, affecting only a small part of the QOL "rating". (Obviously, a lot depends on one's interpretation of the word "active".) I.P. > “The biggest difference between adjuvant treatments is QOL, not survival; > choose by SEs.” strikes me as pretty profound professional advice. As I read it, I concur (and have concurred) with his statement that when deciding between adjuvant treatments, especially once a cure is out of the question, SEs become very important decision criteria. > My research and the vast majority of the research I've seen cited in this > forum disagree with that, especially since ADT is not regarded as > curative. I'm sure you would agree that Scholz's statement above does not support your contention -- not that his is accurate or yours inaccurate. >> QOL cannot be rated until the individual experiences the SEs for himself > [quoted text clipped - 4 lines] > punchbowl, affecting only a small part of the QOL "rating". (Obviously, a > lot depends on one's interpretation of the word "active".) I'd say your/his whole argument depends on the definition of "active". I would say that if it is not passive, it is active, at least to some degree. I consider myself active, and ADT has not deveastated my lifestyle. Ergo, his theory is disproven. But, if active means hyper-active, like mountain climbing, professional or semi professional sports, or maybe even the Appalachean Trail, then he would be correct based on my experience and the experience of most of those who attend this NG. If you agree with these concepts, then Dominic's decisions may be more on in line with deciding whether he wants to be active for several more years or hyper active for a few years. 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 PSAD 0.19 years EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 PSAD .056 years Lupron 07/03 (1 mo) 8/03 and every 4 months there after PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.4 years Casodex added daily 07/06 PSA <0.04, <0.05, <0.04, <0.04 10/11/07 Non Illegitimi Carborundum >I'd say your/his whole argument depends on the definition of "active". I >would say that if it is not passive, it is active, at least to some degree. [quoted text clipped - 3 lines] >Appalachean Trail, then he would be correct based on my experience and the >experience of most of those who attend this NG. "Active" is certainly a subjective term. To me, being "active" simply means that I want to feel like doing whatever it is that I want to do. I have no desire to climb mountains, but I do want to be able to do yard/garden work, walk, participate in activities with my family, etc. When I realized that the SEs of ADT were impairing my ability to do those things I made the decision to quit taking it. As I've stated before, why take something that "may" make me live longer if I'm not going to feel like doing the things I want to do for the entire time? But, like every other decision we've made in treating PCa, every one of us needs to make our own decisions about ADT and QOL, hopefully with the knowledge and support of our families. Happy Thanksgiving to all! Burney RP in 1995 (age 52) RT in 2000 ADT (Casodex) 10/06 - 8/07 burney dot huff at mindspring dot com > "Active" is certainly a subjective term. To me, being "active" simply > means that I want to feel like doing whatever it is that I want to do. > I have no desire to climb mountains, but I do want to be able to do > yard/garden work, walk, participate in activities with my family, etc. > When I realized that the SEs of ADT were impairing my ability to do > those things I made the decision to quit taking it. Excellent definition... and, so far as I'm concerned, decision. It's a simple equation: Where F = Family and L = Life or an extension of life, then F > L. I hope all of you enjoy time with your family tomorrow (at least all you 'mericans) and enjoy a bountiful feast reminiscent of our forefathers. As for me, my wife's recent knee replacement will ground us. But, there will be other Thanksgivings. 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 PSAD 0.19 years EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 PSAD .056 years Lupron 07/03 (1 mo) 8/03 and every 4 months there after PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.4 years Casodex added daily 07/06 PSA <0.04, <0.05, <0.04, <0.04 10/11/07 Non Illegitimi Carborundum >I hope all of you enjoy time with your family tomorrow (at least all you >'mericans) and enjoy a bountiful feast reminiscent of our forefathers. Thanks, Steve. I hope you have a great holiday with your wife, too. I'd say being grounded at home with the wife is a pretty good thing! I read in my local paper this morning about three soldiers from Ft. Lewis, WA, who were killed in Iraq yesterday. They reportedly were handing out gifts and soccer balls to local children when they were killed by a suicide bomber. While we enjoy our holiday tomorrow, let's keep in mind all the good, young people in our military who might have a thanksgiving meal under rough circumstances - and be grateful for them. Burney |
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