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From: Jim Mulcahy on 24 Jul 2008 05:57 Hi, All I've been reading this group for a while and thought it was time to jump in. Born 1943, currently almost 65 5/2000 Diagnosed on routine annual bloodwork PSA 23 Negative DRE 8/2000 Open prostatectomy. Path report T2a, Gleason 9 Over two years undetectable PSA, total ED, significant urinary incontinence 2003 rising PSA, underwent 38 pelvic radiation treatments 2005 rapidly rising PSA, up to 22, clean bone scans began Lupron. Stayed on Lupron 11 months and went off, undetectable PSA 2007 rising PSA, up to 7.87 went on Lupron 8 months, PSA down to 0.04 Went off Lupron May 2008. Am starting to feel good. I've never been sick from the cancer but the treatments, especially Lupron have been terrible. Through it all, I've worked two full time jobs, will retire from one at end of year. Scans still clean. I'm excited to hear about abiraterone Thanks for listening, Jim
From: Alan Meyer on 24 Jul 2008 11:38 "Jim Mulcahy" <mulcahyj(a)citlink.net> wrote in message news:imYhk.673$7g.326(a)fe127.usenetserver.com... > Hi, All > > I've been reading this group for a while and thought it was time to jump > in. > > Born 1943, currently almost 65 > > 5/2000 Diagnosed on routine annual bloodwork PSA 23 Negative DRE > 8/2000 Open prostatectomy. Path report T2a, Gleason 9 > Over two years undetectable PSA, total ED, significant urinary > incontinence > 2003 rising PSA, underwent 38 pelvic radiation treatments > 2005 rapidly rising PSA, up to 22, clean bone scans began Lupron. > Stayed on Lupron 11 months and went off, undetectable PSA > 2007 rising PSA, up to 7.87 went on Lupron 8 months, PSA down to 0.04 > Went off Lupron May 2008. Am starting to feel good. > > I've never been sick from the cancer but the treatments, especially Lupron > have been terrible. > > Through it all, I've worked two full time jobs, will retire from one at > end of year. Scans still clean. > > I'm excited to hear about abiraterone > > Thanks for listening, > Jim Jim, I don't know if this is a good idea or not, you need to check with a medical oncologist to get a professional opinion, but there are other drugs besides Lupron that could benefit you. Some that come to mind are Casodex, Avodart, and estradiol (estrogen). Lupron (or a similar drug like Eligard) is thought to be the most potent of the lot, and is the one that is usually prescribed. However your response to hormone therapy has been pretty good, so maybe one of the less potent drugs will do the job for you with fewer side effects. They might not completely do the job, but on the other hand, they might significantly prolong the off periods, allowing you to get the Lupron less frequently. I'm no doctor and am not competent to say whether this is a good idea or not, but I suggest you ask your doctor about it. If your doctor is a urologist, he might not be the right guy to answer this question. Urologists are specialists in urinary tract disorders and, especially, surgical remedies. They don't always follow all of the drug literature. So if you can get a consultation with a medical oncologist who does a lot of prostate cancer work, you might get more expert advice. Best of luck. Alan
From: Steve Jordan on 24 Jul 2008 12:32 On July 24, Jim Mulcahy wrote: (snip) > I've never been sick from the cancer but the treatments, especially > Lupron have been terrible. It looks as if Jim might be one of the patients whose medic either knows nothing or cares nothing about the side effects (SEs) of treatment (tx). I'm glad to say that I fired a such a medic. From the authoritative website of the Prostate Cancer Research Institute (PCRI), here are links to two excellent essays on the SEs of androgen deprivation therapy (ADT, aka TIP) and the means of dealing with them: http://www.prostate-cancer.org/education/andind/Guess_TestosteroneSideEffects.html or http://tinyurl.com/2ymb8f and http://www.prostate-cancer.org/education/sidefx/Strum_ADS.html or http://tinyurl.com/g6fzp If I may be permitted a comment, I'll have to say that, as a Gleason 9 PCa patient, I am disgusted when I see such patients subjected to curative-intent surgery or other local txs. Such txs, as I learned and as Jim is learning, are unlikely to succeed. Now is the time for a true cancer specialist, a medical oncologist, preferably one who is trained in tx of PCa. Some are listed via this portal on the PCRI site: http://www.prostate-cancer.org/resource/find-a-physician.html > Through it all, I've worked two full time jobs, will retire from one at > end of year. Scans still clean. If the reference is to CT and bone scans, they are known to be too crude to be of much help in staging. There are other tests which are better -- and are rarely used by uros. The alphabet soup is: CGA, CEA, PAP, NSE, etc. In addition to exploration of the PCRI site, I most heartily recommend _A Primer on Prostate Cancer_ 2nd ed., subtitled "The Empowered Patient's Guide" by medical oncologist and PCa specialist Stephen B. Strum, MD and PCa warrior Donna Pogliano. It is available from the PCRI website and the like, as well as Amazon (30+ five-star reviews), Barnes & Noble, and bookstores. A lifesaver, as I very well know. > I'm excited to hear about abiraterone Let's hope it's not another flash-in-the-pan like so many others that initially looked good. See my 7/23 post on the "abiraterone..." thread. Good luck. Regards, Steve J "I believe it is a mistake for many urologists to be involved in the endocrine therapy of prostate cancer. Let me state why. Urologists are surgeons and many times surgeons rush to a treatment without really understanding what they are doing." --Stephen B. Strum, MD Medical Oncologist PCa Specialist
From: len on 24 Jul 2008 13:56 On Jul 24, 11:32 am, Steve Jordan <mycrofts...(a)cox.net> wrote: > On July 24, Jim Mulcahy wrote: > > (snip) > > > I've never been sick from the cancer but the treatments, especially > > Lupron have been terrible. > > It looks as if Jim might be one of the patients whose medic either knows > nothing or cares nothing about the side effects (SEs) of treatment (tx). > I'm glad to say that I fired a such a medic. > > From the authoritative website of the Prostate Cancer Research > Institute (PCRI), here are links to two excellent essays on the SEs of > androgen deprivation therapy (ADT, aka TIP) and the means of dealing > with them: > > http://www.prostate-cancer.org/education/andind/Guess_TestosteroneSid... > orhttp://tinyurl.com/2ymb8f > > and > > http://www.prostate-cancer.org/education/sidefx/Strum_ADS.html > orhttp://tinyurl.com/g6fzp > > If I may be permitted a comment, I'll have to say that, as a Gleason 9 > PCa patient, I am disgusted when I see such patients subjected to > curative-intent surgery or other local txs. Such txs, as I learned and > as Jim is learning, are unlikely to succeed. For once, I have to say that I think Steve has a point.. With a PSA of 23, if the original biopsy showed a Gleason of 9, attempting to cure the cancer would be questionable. It might be appropriate as a 'Hail Mary' stab at a cure for a relatively young man, provided he fully understood the low odds of success. But for a man in his sixties, it would seem questionable. Unfotunately, the original message doesn't actually say what the biopsy showed, only that the post-surgical pathology report indicated T2a---cancer on one side---and Gleason 9. I certainly don't claim to be an expert on HT, but I doubt whether the correct response is to choose Strum as the final word on the subject. It seems to me that there is considerable disagreement among oncologists about how to proceed in aggressive cases, and while Strum's opinion is worth considering, if I were in that situation, I would seek as many opinions from reliable sources as I could find about when to begin HT and how to go about it. > > Now is the time for a true cancer specialist, a medical oncologist, > preferably one who is trained in tx of PCa. Some are listed via this > portal on the PCRI site:http://www.prostate-cancer.org/resource/find-a-physician.html > > > Through it all, I've worked two full time jobs, will retire from one at > > end of year. Scans still clean. > > If the reference is to CT and bone scans, they are known to be too crude > to be of much help in staging. There are other tests which are better -- > and are rarely used by uros. The alphabet soup is: CGA, CEA, PAP, NSE, etc. > > In addition to exploration of the PCRI site, I most heartily recommend > _A Primer on Prostate Cancer_ 2nd ed., subtitled "The Empowered > Patient's Guide" by medical oncologist and PCa specialist Stephen B. > Strum, MD and PCa warrior Donna Pogliano. It is available from the PCRI > website and the like, as well as Amazon (30+ five-star reviews), Barnes > & Noble, and bookstores. A lifesaver, as I very well know. > > > I'm excited to hear about abiraterone > > Let's hope it's not another flash-in-the-pan like so many others that > initially looked good. See my 7/23 post on the "abiraterone..." thread. > > Good luck. > > Regards, > > Steve J > > "I believe it is a mistake for many urologists to be > involved in the endocrine therapy of prostate cancer. Let me state why. > Urologists are surgeons and many times surgeons rush to a treatment without > really understanding what they are doing." > > --Stephen B. Strum, MD > Medical Oncologist > PCa Specialist
From: Steve Jordan on 24 Jul 2008 14:40
On July 24, len replied to me, in part: (snip) > I certainly don't claim to be an expert on HT, but I doubt whether the > correct response is to choose Strum as the final word on the subject. > It seems to me that > there is considerable disagreement among oncologists about how to > proceed in aggressive cases, and while Strum's opinion is worth > considering, if I were in that > situation, I would seek as many opinions from reliable sources as I > could find about when to begin HT and how to go about it. I recommend that len learn what Strum actually has to say on the subject of tx of PCa. A good start would be to read the book I recommended. I make this recommendation because it seems to me that there is an unwarranted presumption here that Strum, and by extension other med oncs, always recommend "HT" (ADT). That is far from true. What is true is that med oncs all too often see patients whose prior medics have failed them and who are then in desperate straits. If a new patient takes the "HT" presumption as truth, he might very well fail to receive the attentions of an actual *cancer specialist*. And finally, neither Strum nor Walsh nor I nor len are the final authorities. The patient's job is to study, learn and take charge of his case. No one can do that for him. Regards, Steve J "As a physician, I am painfully aware that most of the decisions we make with regard to prostate cancer are made with inadequate data." -- Charles L. "Snuffy" Myers, MD Medical oncologist. PCa survivor. |