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Medical Forum / Diseases and Disorders / Prostate Cancer / March 200751 yr old w*Stage 3 Prostate Cancer
Hello everyone, Back in October of 2006 my father was diagnosed with prostate cancer. On October 27th they went in to remove the prostate. It has been determined that my father has Stage 3 prostate cancer. 51 years old is EXTREMELY young to be fighting this. Most of the treatment he is too young to even be receiving. Anyone else on here have it at such a young age or know of anyone? I can't find much on the internet. I was just told today that if he makes it 2 years then he will have a 50% chance of making it 5 years. I've been in the dark during this whole thing..apparently being 24 isn't old enough to hear it all. I'm trying to find all the information I can. Thank you Wish I did get it at 51 - instead of 46. Had surgery then salvage radiation - latest psa 0.01 and - yes I had Stage 3 cancer also. There are many younger than 51 on this board that are dealing with Prostate Cancer. I am sure you will get all the information you need from the individuals on this board. Learn as much as you can. Stay positive It would be helpful if you could provide the members with other information. psa before surgery current psa brief overview of pathology report - gleason score - positive or negative margins etc. current treatment or meds I wish you, your family and your father the best of health and success. I am unsure of all the information with my father. I do now his PSA was 0.12...off the charts. It is believed he has had this for years and his Dr never caught on. About 10 years ago my father had an enlarged prostate and had surgery to scrape it down. From there on out, every year at his physical he just assumed they were checking his PSA. Its been a rough 2 years. He started with a major heart attack, then stroke and now this. I always wonder how he manages to hold on. He is currently undergoing radiation and hormonal therapy. They say if the therapy works on 2 years then he has a 50% chance at making it to 5 years. Its terrible. They say hes too young for most of the treatment out there. We're left just waiting. He sees an oncologist every Weds after radiation and for some reason this week when he went in they wanted to see him again the next day. Stressful > Wish I did get it at 51 - instead of 46. Had surgery then salvage > radiation - latest psa 0.01 [quoted text clipped - 16 lines] > I wish you, your family and your father the best of health and > success. On Feb 23, 6:33 am, "laleves...@gmail.com" <laleves...@gmail.com> wrote: > I am unsure of all the information with my father. I do now his PSA > was 0.12...off the charts. It is believed he has had this for years [quoted text clipped - 9 lines] > every Weds after radiation and for some reason this week when he went > in they wanted to see him again the next day. Stressful Are you sure it's 0.12 - because 0.12 is a very low psa and the radiation and hormone treatment should bring it down to <0.1. >From the information you have provided, I would say he has a 50% of making it 10 years - possibly more with newer treatments being discovered daily - he might have to worry more about the cardiovascular health. Lets hope the radiation and hormones work. Dave P Sorry...error...PSA was 12.0! extremely high. They said he had it for YEARS > On Feb 23, 6:33 am, "laleves...@gmail.com" <laleves...@gmail.com> > wrote: [quoted text clipped - 25 lines] > > Dave P > Sorry...error...PSA was 12.0! extremely high. They said he had it > for YEARS Mine was 16.0. I definitely had it for a couple of years. During 1998, my PSA was < 4.0 and by the end of 2000, it was 16. Do not get discouraged.  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, 5/05, 10/05, 2/06, 6/06 PSA .07 .05 .06 .09 .08 .132 .145 Casodex added daily 07/06 PSA <0.04 Non Illegitimi Carborundum > Back in October of 2006 my father was diagnosed with prostate cancer. > On October 27th they went in to remove the prostate. It has been > determined that my father has Stage 3 prostate cancer. 51 years old > is EXTREMELY young to be fighting this. My Brother has it at 47 and the specialists say it is too late to operate even though he went to the Dr. as soon as he noticed symptoms. In August last year he was told the mean survival time for people in his condition is 2-3 years but the last bone scan, a couple of weeks ago, showed it has spread to femur, ribs, spine and skull - faster than they thought it would. The next specialist appointment is in two weeks in which we'll apparently be discussing targeted radiotherapy and chemotherapy; I'm almost too frightened to ask about prognosis but we need to know :'-(. Kevin On February 21, Kevin Weller replied to Lalevesque: > My Brother has it at 47 and the specialists say it is too late to > operate even though he went to the Dr. as soon as he noticed symptoms. And what, exactly, is the specialty of these "specialists?" Urology, I'll bet. All they know is surgery. > In August last year he was told the mean survival time for people in > his condition is 2-3 years but the last bone scan, a couple of weeks [quoted text clipped - 3 lines] > chemotherapy; I'm almost too frightened to ask about prognosis but we > need to know :'-(. If the "specialists" are urologists aka surgeons, the patient should move on to a real live cancer specialist, an oncologist. Preferably a medical, not radiation, oncologist. The details are not reported, so it is impossible to judge the situation. I recommend consulting: 1. The premier prostate cancer (PCa) text, _A Primer on Prostate Cancer_ 2nd ed. by medical oncologist and PCa specialist Stephen B. Strum, MD and PCa warrior Donna Pogliano. It is widely available, and is a lifesaver. 2. The website of the objective and authoritative Prostate Cancer Research Institute (PCRI) at: http://prostate-cancer.org/index.html ...and searching on "Newly Diagnosed." 3. Meeting the folks at the local chapter of the support group UsToo! International. Personal contact with brothers and sisters is invaluable. The website, including local contacts, is: http://www.ustoo.com/ Good luck. Regards, Steve J "'MD' does not mean 'Medical Deity.'" -- Stephen B. Strum, MD > And what, exactly, is the specialty of these "specialists?" Urology, > I'll bet. > > All they know is surgery. Correct, but... > If the "specialists" are urologists aka surgeons, the patient should > move on to a real live cancer specialist, an oncologist. Preferably a > medical, not radiation, oncologist. We've been fighting to move to an oncologist for some time (NHS in the UK) and I'm pleased to say that battle has finally been won and the next appointment is with an oncologist. If we are going to discuss chemo and radiotherapy I assume she is a clinical oncologist (she is the only oncologist working in this primary care trust which covers a wide area and she only works part time there...). > I recommend consulting: > > 1. The premier prostate cancer (PCa) text, _A Primer on Prostate Cancer_ I've had that pretty much since I first posted on here. > 2. The web site of the objective and authoritative Prostate Cancer > Research Institute (PCRI) at: > > http://prostate-cancer.org/index.html > ....and searching on "Newly Diagnosed." ..and I've been using this site too as well as the UK equivalents. > 3. Meeting the folks at the local chapter of the support group UsToo! > International. There is no local chapter, the nearest one is quite some distance away. Kevin > ... > We've been fighting to move to an oncologist for some time (NHS in the UK) [quoted text clipped - 4 lines] > she only works part time there...). > ... Kevin, It sounds like your brother is very likely to die of the disease, however the switch to an oncologist rather than a urologist is positive. I presume your brother is already on hormone therapy. If it has failed (i.e., the cancer has become hormone refractory), he should discuss options with the oncologist including: 1. Increasing the hormone therapy. "Triple ADT" involves an LHRH agonist like Zoladex, an anti-androgen like Casodex, and a 5-alpha reductase inhibitor like dutasteride. Some men get more benefit from all three than from just one. 2. Trying second line hormone therapy. This could involve estradiol, estrogen patches, ketoconazole, or other drugs. A recent study (http://tinyurl.com/2x5y5r) claims this can work after first line hormone therapy fails. 3. Chemotherapy. 4. A combination of the above. 5. Clinical trials of experimental drugs. None of the above are currently promising any cures, but they might add months or years to your brother's life. If all else fails, good palliative care is important. Some men suffer horrible pain for months or years before they die. Others have their pain properly controlled with drugs and sometimes with radiation. Incredibly, some doctors worry about having their patients get addicted to morphine - as if addiction matters to a terminally ill patient. Finally, please get your own PSA tested. There is some genetic component to many cancers, probably including prostate cancer. Don't wait for symptoms. If the NHS says they don't do PSA testing insist on it, or pay for it privately if you have to. And keep getting tested every year. Best of luck. Alan Sorry for the tardy reply and thanks for your response Alan. > It sounds like your brother is very likely to die of the disease, however > the switch to an oncologist rather than a urologist is positive. Sadly I am sure you are correct, the cancer seems to be particularly aggressive and the last bone scan shows what someone described as hotspots that had been speckled on all over with a paint brush. My Brother's latest PSA is 366 despite the Casodex and Zoladex. The move to an oncologist is definitely a step in the right direction though and the more interaction we have with her and her team the more convinced I become that the urologist we were seeing and his team were completely out of their depth. It's a pity he was too arrogant to realise that himself. > he should discuss options > with the oncologist including: [quoted text clipped - 14 lines] > > 4. A combination of the above. They have all been tabled by the oncologist for our next meeting in a couple of weeks. My Brother is concerned about quality of life issues if he goes down the chemo route and a local hospice cancer specialist said during a meeting yesterday that he's not sure how beneficial it will be. > If all else fails, good palliative care is important. Some men suffer > horrible pain for months or years before they die. This seems to be cyclic at the moment with my Brother having better days and bad days. I was in Spain last week during one of his bad periods and one of my other Brothers was trying to get some pain relief for him. It turned out to be a fruitless uphill struggle. > some doctors worry about having their patients get > addicted to morphine - as if addiction matters to a terminally ill > patient. The local GP is particularly loathe to prescribe a morphine-based drug (or do anything much if the truth be told) with the result that my Brother was left writhing in agony for parts of last week. (I started a long rant here about medical staff like the GP wringing their hands and whining that they don't know what to do but not wanting to prescribe the pain relief that is so desperately needed but decided it was pointless so deleted it. My frustration with these so-called experts who are supposed to act in our interests is at an all-time high. Harold Shipman, may he rot in hell if there is one, has a lot more to answer for than the deaths he personally caused). It was this inability/unwillingness of the GP to act that prompted the meeting with the hospice specialist yesterday as the GP will listen to him. A fax should have been sent to the GP yesterday evening recommending the prescription of Oramorph to help with the pain; I really hope it does. > Finally, please get your own PSA tested. Thanks for the thought, I've done that and ensured my other Brothers have also been tested. My understanding is we all need to be regularly tested. Kevin Hello: I know this is distressing, but even now your father has some options for at least possibly slowing the beast down. If he has not already done so, he should be discussing this with an oncologist. I believe the next steps after a surgery with (I'm assuming) positive margins and a T3 tumor include radiation and/or hormonal treatments, but your father should hear that from the onc, not me. A lot of the hospital web sites have good patient information that you can read. There are several other sites on the web, such as http://www.prostate-cancer.org or http://www.ustoo.com -- there are many others, including government sites such as the National Cancer Institute. Hospitals often sponsor support groups, online or face-to- face. Others have mentioned the Strum book; another book cited a lot is The Prostate Book by Perter Scardino. Believe it or not, there is a "Prostate Cancer for Dummies" book that several people on this newsgroup have recommended. There is plenty of stuff to read. Your father was probably just trying to protect you. I know it was very tough to tell my teenage sons about my own cancer. I hope you can give him a hug; he needs it. All the best, charlie Here's a reading list for UK guys: Dorothy Baldwin Understanding Male Sexual Health Hippocrine, 1993 ISBN 0781801281 A book for the general public which deals with male sexuality, sexual problems and treatment for medical problems. Dr Ian Banks Cancer (Men) - Haynes Owners Workshop Manual Haynes Publishing, 2004 ISBN 1844251586 Written by a doctor, the Haynes Cancer manual is an optimistic book, featuring hints and tips for a healthy lifestyle, as well as easy to understand information on all cancers affecting men. Michael Korda Man to Man: Surviving Prostate Cancer Time Warner, 1998 ISBN 0751522929 Written by a patient, this is a personal account of prostate cancer and its treatment and includes information about how the author dealt with incontinence and impotence. Paul Lange MD and Christine Adamec Prostate cancer for dummies Wiley Publishing, 2003 ISBN 0764519743 One of the popular 'for dummies' series, this book is written by an American prostate cancer surgeon and a medical writer. Has information on treatment choices and side effects. Some of the information, for example on finding a doctor and making your way through the health care system, will not be relevant for UK readers. Sheldon Marks Prostate and Cancer: A Family Guide to Diagnosis, Treatment and Survival Da Capo Press, 2003 ISBN 0738208396 Looks at coping with your emotions, dealing with changes to your lifestyle and treatments. R Persad, J Smith, K Jefferson and B Patel Prostate Cancer: A Comprehensive Guide for Patients TFM Publishing Ltd, 2002 ISBN 1903378109 This book has information on the causes, prevention and treatment of prostate cancer. Includes information on diet and complementary therapies. Robert H Phillips Coping with Prostate Cancer Avery Publishing Group, 1994 ISBN 0895295644 This book considers issues such as coping with emotions, interacting with other people and changes to your lifestyle. There is also an overview of prostate cancer, with a description of the prostate gland and information on how prostate cancer is diagnosed. Dr Peter Scardino The Prostate Book: An Owner's Manual Michael Joseph Ltd, 2005 ISBN 0718146948 Written by a specialist in America, this book provides information about all aspects of prostate cancer, including prevention, treatment and self help tips. Val Speechley and Maxine Rosenfield Cancer at your fingertips (3rd edition) Class Publishing, March 2001 ISBN 1859590365 Paperback edition £14.99 Facts about cancer and cancer treatments set out in question and answer form. Includes information on diet, exercise, sex and relationships, holidays, employment and money matters. Jeffrey Tobias, Kay Eaton and Gary Lineker Living with Cancer Bloomsbury, 2001 ISBN 0747554102 Follows the BBC TV series of the same name. Covers treatment, side effects and different types of cancer, including cancer of the prostate. David Wynn Living with prostate cancer Blueberry Books, 2003 ISBN 095442090X This book is one man's very personal account of his own experiences with prostate cancer. It is only available by mail order from: 257, Oxford Road, Macclesfield, Cheshire, SK11 8JY, price £5.95 plus postage and packing. Phone: 01625 431182 or 07976 693 641 and a few online resources: There is also a bottomless mine of information available on the internet. However, be warned that not all sites pass out genuine information. Wikipedia can be a valuable source - sometimes, but by it's very nature, being written by Joe public - I wouldn't rely on it for anything regarding my health and you shouldn't either. Some of the best internet sites: http://www.cancerhelp.org.uk/ http://www.cancerindex.org/clinks3b.htm - has many links to other cancer information sites http://www.prostate-cancer.org.uk/ http://prostate.cancerupdates.org:80/ There is also a PCa 'Mailing List' that you can join - it's almost like the No 1 Usenet site, except you get individual emails - it can get pretty overloading - but information is freedom! To join the list - go to: http://ppml.acor.org/ Best regards. Hughie > Hello: > [quoted text clipped - 23 lines] > > charlie > Hello everyone, > [quoted text clipped - 10 lines] > > Thank you As others have said, 51 is young, but not extremely young. A number of men have been diagnosed in their late forties and one, if I remember correctly, was 39. If his PSA is currently undetectable, i.e., below the threshold for detection by whatever test he's getting, then he's in good shape. Unless he's already known to have failed treatment and become metastatic, it's extremely likely that he'll be here 5 years from now, and might well be here 35 years from now. Best of luck. Alan > Hello everyone, > [quoted text clipped - 8 lines] > whole thing..apparently being 24 isn't old enough to hear it all. I'm > trying to find all the information I can. "I'm your huckleberry," as Doc Holiday said to Reno.... Yes! I was 46 when I began my journey. AND, I was Stage T3c. AND, that was more than SIX years ago. AND, I didn't make it two years before recurrence (a misnomer, btw). AND, finally, my PSA is less than 4/100ths of a nanogram right now, which means I have a good shot at 60! Ergo, your father has a good shot at 64. My father was diagnosed at 42 and lasted 8 years without modern radiation, hormone therapy and chemotherapy. Out of more than 700 people who have posted on this newsgroup in the last five years or so, 114 were 51-years-old or less. One was only 37! At least one has died. Your father has advanced cancer. He will not be cured unless and until science provides a cure (est. Year 2015). He will likely undergo radiation sometime in the future, then hormone therapy, as the cancer re-emerges. He will suffer some side effects. But, he has a really good shot at living long enough to see a cure. If you find out his PSA at Dx and now, his Gleason Score (e.g., 3+4=7), and his actual Stage (e.g., T3c), we will likely have further comments. 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, 5/05, 10/05, 2/06, 6/06 PSA .07 .05 .06 .09 .08 .132 .145 Casodex added daily 07/06 PSA <0.04 Non Illegitimi Carborundum Dear All, On Feb 21, 4:09�pm, "laleves...@gmail.com" <laleves...@gmail.com> wrote: > Hello everyone, > [quoted text clipped - 4 lines] > too young to even be receiving. Anyone else on here have it at such a > young age or know of anyone? I can't find much on the internet Unfortunately, this illness strikes young people as well. Look at the website Faith-Love-Win-Help (flwh.org), and you will see the new face of PC. A young, vital, handsome, smiling person with several young children. See it and weep. The above site is run by a David Emerson, who was diagnosed with advanced PC at age 42 (he is now 44). It had already spread to his bones. . . and who would have thought of PC? At his age? Anyway, he's a very good person who posts frequently in another PC group, so I recommend that people look at his website. He is always positive and seems to be doing well on chemo. I will tell you why I admire Dave Emerson (from a distance). He did something I thought was brave. There was a man in the yahoo PC group a few months ago, who I'll call JPM, who started posting a lot. This is how he described himself: "I am 58 years old, PSA 7.4, diagnosed 8-9-06 Gleason 5+4=9, hasn't gone into the bone yet, has spread to lungs & bladder. Taking Casodex & hormone shots. I am convinced that the Lord Jesus Christ (GOD) will heal me as a testimony to his love 2 Chronicles 20" Now JPM appeared to be in a complete fog about his illness. He thought the doc had operated on his prostate through his penis (or bladder). Whatever. Well, Dave is a religious guy, but he went where none other feared to tread. Nobody wanted to mess with a terminally ill person. Except Dave. One day he wrote JPM a message and basically laid down the law. He said (very loosely): "You need to get a life, JPM. Literally. Get off your duff and go to the doctor. You can't rely on eating veggies to make you well. And sitting around waiting for a miracle is not the right thing to do -- and most likely it won't work. If Jesus is going to heal you, he needs a cooperative patient, doesn't he? Then he gave JPM some more specific advice. Well, I thought Dave did the right thing, and I hope JPM is doing better because of it. Best to you all. Leah > Dear All, > [quoted text clipped - 13 lines] > of PC. A young, vital, handsome, smiling person with several young > children. See it and weep. http://www.flhw.org/ his blog is off this webpage > The above site is run by a David Emerson, who was diagnosed with > advanced PC at age 42 (he is now 44). It had already spread to his > bones. . . and who would have thought of PC? At his age? From a different website... "David Emerson and Mary live in Kansas - USA. He was 42 when he was diagnosed on February 18, 2005. His initial PSA was 219.0 ng/ml his Gleason Score was 4+4+8 and he was staged T4. His choice of treatment was ADT (Androgen Deprivation Therapy) - Hormone. Here is his story: Now, 19 months later I am or have become hormone refractory. My Oncologist wants me to start Ketaconazole (1200mg daily and hydrocortisone at 20mg daily). I will continue to take a Lupron injections. " Then there's his blog, which is too long for me to wade through. J >Hello everyone, > [quoted text clipped - 10 lines] > >Thank you I found it extremely difficult to talk to my children (22, 24) about my having been diagnosed with PCa at age 56. Not that I didn't want to talk to them, but it was very hard to keep my composure with them. And my medical outlook was better then it sounds like your fathers is. He would most likely like to be with you even if not talking about it. On Feb 21, 4:09 pm, "laleves...@gmail.com" <laleves...@gmail.com> wrote: > Hello everyone, > [quoted text clipped - 10 lines] > > Thank you I was diagnosed at 50 with prostate cancer, I was lucky and caught it early. My suggestion to you and your dad is to go to one of the top institutions in the country, such as John Hopkins in Baltimore, or Sloan Kettering in NY, I'm sure there are others, but get the best of the best. It's his life you are talking about and you want the top people in their field to treat him so that you get the best odds in beating it. I did, and I am cancer free after six years. D.K. > My suggestion to you and your dad is to go to one of the top > institutions in the country, such as John Hopkins in Baltimore, or > Sloan Kettering in NY, I'm sure there are others, but get the best of > the best. It's his life you are talking about and you want the top > people in their field to treat him so that you get the best odds in > beating it. I did, and I am cancer free after six years. The flip side of that coin is that if we have to travel 2,000 miles to see our doc, we're not going to see him often, and could thus receive lesser care overall. Most U.S. citizens live within a decent commute of excellent big-city cancer care without feeling compelled to book a flight to Timbuktoo to be serviced by some dude who wrote a cancer book. I've visited my docs maybe 10-12 times altogether, partly because I can drive there in three hours on cruise control. And, guess what . . . my guy was trained at and did post-doc work at S-K 3,000 miles away, he and my whole onc team wrote an excellent PC book, and the city (Seattle) is a hotbed of PC treatment, research, and drug development. Baltimore, Schmaltimore. Only if I *knew* Baltimore could have prevented my need for pads would I guess I might have gotten better care there (my uro says I'm in his one-percent club in that regard, but that I'm also in his one-percent club in physical activity, which triggers most of my leakage). Convenience matters, IMO. Bopping over to my docs with the wife and dogs for a chat or a specialty consult, catching a great meal, doing a little shopping, and getting back home before suppertime is quite conducive to keeping my followup care on my docs' minds. And if and when I need adjuvant RT, I'd infinitely prefer swinging by my highly regarded local RT clinic 10 minutes away for a quick zap before work to sitting around Schmaltimore for five weeks. Like everything else in this club, treatment center choice has tradeoffs. I.P. > dothet...@hotmail.com wrote: > > My suggestion to you and your dad is to go to one of the top [quoted text clipped - 31 lines] > > I.P. I think you misinterpeted what I was saying. I said to seek out the best of the best, there are many other places besides NY and Baltimore much closer than 2000 miles. You are satisfied with your outcome( I think?) and convenience, and as long as you are satisfied, that is your choice. You are correct, there are many decisions and tradeoffs to be made in seeking treatment. My surgeon was trained by Walsh and had done thousands of the operation I was contemplating, versus my Urologist who had done a hundred or so. My choice was a no-brainer for me. I was trying to inform the original poster that there are choices, that was all. DK > I was trying to inform the original poster that there are choices, > that was all. Same here. I.P. > It has been determined that my father has Stage 3 prostate cancer. > 51 years old is EXTREMELY young to be fighting this...... > Anyone else on here have it at such a young age or know of anyone? There is a young widow in my square dance club whose husband died at age 55 from such an aggressive prostate cancer. > > It has been determined that my father has Stage 3 prostate cancer. > > 51 years old is EXTREMELY young to be fighting this...... > > Anyone else on here have it at such a young age or know of anyone? > > There is a young widow in my square dance club whose husband > died at age 55 from such an aggressive prostate cancer. _http://health.groups.yahoo.com/subscribe/advancedprostatecancer_ (http://health.groups.yahoo.com/subscribe/advancedprostatecancer) Our nonprofit, Malecare, has started a new online support group, "Advanced Prostate Cancer " which we hope will be a dynamic supplement to groups not specifically directed to advanced survivors. Male and female, gay and straight, are all welcome. The group will focus entirely on issues generated by men diagnosed with advanced or recurrent/reoccurring prostate cancer. Moderated by Joel who's story begins with: Dx 8-01, Gleason 4+3, lap RP 10-01, T2bN0Mx 12-05 - PSA to 87.7 with doubling time of >4 months 1-06- ADT2 1-07 IADT Please subscribe at: _http://health.groups.yahoo.com/subscribe/advancedprostatecancer_ (http://health.groups.yahoo.com/subscribe/advancedprostatecancer) |
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