Guest guest Posted August 13, 2009 Report Share Posted August 13, 2009 I have been running a non-commercial website - You Are Not Alone Now www.yananow.net for a number of years now. The second section of the site of the site was set up in the belief that there is tremendous value in reading of other people's experiences with prostate cancer and also recognition that it might be helpful men diagnosed with PCa (and their families or partners) find someone to 'talk' to; someone who had dealt with the same issues and problems. Contributors are encouraged to update their stories at least once a year. The current week’s list of new contributors and updates is below – many are from older members as I have been sending out reminders for them to update their stories. NEW STORIES: http://www.yananow.net/Mentors/MikeL.htm MIKE L - although not all young men have aggressive forms of the disease, Mike has, with a PSA of 1,500, GS 9, T4 diagnosis http://www.yananow.net/Mentors/H2.htm WILLIAM H - opted for Proton Beam at Loma after diagnosis in June http://www.yananow.net/Mentors/SandyD.htm SANDY DUFF has chosen EBRT but is concerned about potential side effects http://www.yananow.net/Mentors/C.htm CHARLES COHEN - two years after his surgery he is satisfied with the outcome, using bi-mix and Viagra and catheterization to deal with the side effects http://www.yananow.net/Mentors/HughJ.htm HUGH J - diagnosed in June and chose surgery UPDATES TO EXISTING STORIES http://www.yananow.net/Mentors/DaveM.htm DAVE MARTINEZ after being told he had no PCa a further biopsy was positive and he chose RALP (Robotic Assisted Laparoscopic Prostatectomy) at City of Hope and Dr Kawachi – and like so many others found this to be a positive experience http://www.yananow.net/Mentors/K.htm ANDREW KAYSER - has decided on RALP (Robotic Assisted Laparoscopic Prostatectomy) which is set for August 13 http://www.yananow.net/Mentors/RickS.htm RICK S – details of his recovery from surgery http://www.yananow.net/Mentors/IanM.htm IAN MEEKIN – involved in an EBRT (External Beam Radiation Therapy) trial at Royal Marsden http://www.yananow.net/Mentors/W3.htm DAVID W - coming up for two years since surgery and he reports no side effects http://www.yananow.net/Mentors/JoeT.htm JOE TILLSON - has his RALP (Robotic Assisted Laparoscopic Prostatectomy) in June and has some troublesome continence and ED issues http://www.yananow.net/Mentors/ChuckC.htm CHUCK CAMERON - has a rising PSA after EBRT (External Beam Radiation Therapy) but is waiting for present before commencing ADT (Androgen Deprivation Therapy) http://www.yananow.net/Mentors/A.htm JOSE ALSON – has a bouncing PSA after EBRT (External Beam Radiation Therapy) but no incontinence problems and an improvement in ED http://www.yananow.net/Mentors/DaveA.htm DAVE ARTERBURN coming up to three years after RALP (Robotic Assisted Laparoscopic Prostatectomy) he still has ED issues http://www.yananow.net/Mentors/SaltyC.htm SALTY CLARK no problems after his RALP (Robotic Assisted Laparoscopic Prostatectomy) http://www.yananow.net/Mentors/KipF.htm KIP FOSS diagnosed in June 2006 he chose RALP (Robotic Assisted Laparoscopic Prostatectomy) – still has ED http://www.yananow.net/Mentors/J.htm BRYAN JONES - eighteen months after RALP (Robotic Assisted Laparoscopic Prostatectomy) has no ED problems and only slight leaking http://www.yananow.net/Mentors/BillR2.htm BILL ROBINSONS - chose proton beam and sets out the minor side effects he had http://www.yananow.net/Mentors/S.htm ERIC SONDEEN - while battling the severe side effects of a failed HIFU procedure, he has lost his job but has remained amazingly positive. A wonderful example for all http://www.yananow.net/Mentors/JWB.htm JW BURFORD - had ‘the lot’ to deal with a GS 8 diagnosis – RALP (Robotic Assisted Laparoscopic Prostatectomy), EBRT (External Beam Radiation Therapy) and ADT (Androgen Deprivation Therapy). Has been off Lupron for three months but sees no signs of life as far as ED is concerned http://www.yananow.net/Mentors/HenkvdW.htm HENK VAN SER WILK - Silver member has been on Zoladex after failed surgery and EBRT (External Beam Radiation Therapy) and would like a ‘holiday’ http://www.yananow.net/Mentors/SteveB2.htm STEVE BREYFOGLE – 16 months after his RALP (Robotic Assisted Laparoscopic Prostatectomy) he still has ED but finds Trimix does the trick http://www.yananow.net/Mentors/TimH.htm TIM HILLEN – Silver member still happy with his choice of Brachytherapy and a very low PSA http://www.yananow.net/Mentors/ChrisF.htm CHRIS F - another young man diagnosed with an aggressive form of the disease. He is now on chemotherapy which he says he is tolerating well http://www.yananow.net/Mentors/DougA.htm DOUG ADAM - 18 years after diagnosis with a GS 10, this Platinum member is enjoying his life and his remission http://www.yananow.net/Mentors/HarvV.htm HARV V - decided on Active Surveillance and has seen a reduction in his PSA since last year http://www.yananow.net/Mentors/PatI.htm PAT INGLESE – has come back to HIFU as his choice but has a question http://www.yananow.net/Mentors/AmadorA.htm AMADOR MONTEJANO - is excited as he has just had his lowest PSA ever – 2.5 http://www.yananow.net/Mentors/TonyS2.htm TONY SAWYER concerned about pancreatic problems with ADT (Androgen Deprivation Therapy) after failed surgery http://www.yananow.net/Mentors/G.htm ERIC GAMBLE another Platinum member, diagnosed 15 years ago with GS9 at age 70: now 85 he is having some pain problems All the best Terry Herbert I have no medical qualifications but I was diagnosed in ‘96: and have learned a bit since then. My sites are at www.yananow.net and www.prostatecancerwatchfulwaiting.co.za Dr “Snuffy” Myers : " As a physician, I am painfully aware that most of the decisions we make with regard to prostate cancer are made with inadequate data " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2009 Report Share Posted September 12, 2009 Terry, I sent the following update just this minute. Thank you for the prompting. I also took the deletion poll/vote. Possibly those choices could be made as part of the sign up procedure and automatically implimented as per the individuals's choosing? I know at least one PCa person has contacted me from my town regarding posting on Yana. Thank you for your service and site. Respectfully, Mick -- Abilene, TX 2009 Sep 12 Update to Yana from Mick: RRP anniversary. PSA was still .01 The Uro put me up to annual visits instead of every 6 months. Will report back after the next visit in May 2010. I am still running. I ran marathon #3 on April 26 in Oklahoma City, Oklahoma as part of the " Memorial Weekend to Remember " . The run was in memory of the lives lost in the Federal Building disaster. I am currently in training for marathon #4 which will be Oct 17, 2009. I am not sure where all this running is going, but it gives me something healthy to do and an activity at which I can at least strive to improve. I might get off the road and take up trail running next training season. I would like to travel a bit. Maybe I could meet other survivors, run and see parts of the country at the same time. Cheers, Mick -- Abilene, TX PS: I have been giving some thought to taking up fishing again too. > > I have been running a non-commercial website - You Are Not Alone Now > www.yananow.net for a number of years now. The second section of the site of > the site was set up in the belief that there is tremendous value in reading > of other people's experiences with prostate cancer and also recognition that > it might be helpful men diagnosed with PCa (and their families or partners) > find someone to 'talk' to; someone who had dealt with the same issues and > problems. Contributors are encouraged to update their stories at least once > a year. The current week's list of new contributors and updates is below > > > > I am running a couple of Mini Polls to get a better focus on what readers > think is important in a story and how long I should keep stories if there is > no update. If you could visit the page and register your votes (six clicks > it should take!!) I'd be grateful. The polls are at > http://www.yananow.net/MiniPoll.htm > > > > > > NEW STORIES > > > > http://www.yananow.net/Mentors/MarkC2.htm MARK CAMPAGNA - unusual > diagnosis with a Gleason Score of 5 - he chose surgery and is concerned > about ED > > http://www.yananow.net/Mentors/J.htm PAUL JOHNSON has gone back on ADT > (Androgen Deprivation Therapy) after failure of salvage radiation therapy > following his failed surgery in 2006 > > http://www.yananow.net/Mentors/L3.htm JOHN LIGHT diagnosed in 2004, > choosing EBRT (External Beam Radiation Therapy) which failed; had ADT > (Androgen Deprivation Therapy) and is now hormone refractory - looking for > help > > http://www.yananow.net/Mentors/SocDoc.htm SOC DOC chose surgery and is > waiting for his first PSA > > http://www.yananow.net/Mentors/K2.htm STEVE KRAMER on the cusp of > Gold Membership, he chose surgery in 2000 which failed, but he has managed > progression with ADT (Androgen Deprivation Therapy) > > http://www.yananow.net/Mentors/MikeC2.htm MIKE C had Brachytherapy - Seed > Implants - in early 20008 and although there are minor urinary problems, he > is happy with his outcome > > http://www.yananow.net/Mentors/JeffD2.htm JEFF DUNAWAY diagnosed in August > is having RALP (Robotic Assisted Laparoscopic Prostatectomy) on Sept 14. > > http://www.yananow.net/Mentors/SportyJ.htm SPORTY JERALDS very happy with > the outcome of his RALP (Robotic Assisted Laparoscopic Prostatectomy) > earlier this year > > http://www.yananow.net/Mentors/RichL2.htm RICH LONGTIN was considering > brachytherapy with adjuvant ADT - seems to have had some curious advice > along the way > > http://www.yananow.net/Mentors/Mc.htm DAVID MCGEE comes in as a > Silver member after taking the Active Surveillance option five years ago > > http://www.yananow.net/Mentors/RickC.htm RICK COLE newly diagnosed and > undecided > > > > UPDATED STORIES > > > > http://www.yananow.net/Mentors/I.htm GARY I half way through his 42 > IMRT (Intensity Modulated Radiation Therapy) treatments he's very happy with > his choice > > http://www.yananow.net/Mentors/MelP.htm MEL PANTHERSFAN - first post > treatment PSA is 1.8 and, like virtually most proton beam men, he is very > happy with his choice and his experience > > http://www.yananow.net/Mentors/LenA.htm LEN AIREY - developed a stricture > after surgery which was resolved after some cyberspace exchanges - so far so > good and his detectable PSA of 0.04 is stable > > http://www.yananow.net/Mentors/M2.htm DAVID M his extraordinary saga > continues with another negative biopsy after the disagreements on the first > and second > > http://www.yananow.net/Mentors/KenM.htm KEN MCWILLIAMS- eighteen months > after RALP (Robotic Assisted Laparoscopic Surgery) he has no more ED > problems and PSA is undetectable > > http://www.yananow.net/Mentors/RobinH.htm ROBIN H - the youngest member - > 34 at diagnosis - reports in 12 months after RALP - all going well thanks to > Viagra > > http://www.yananow.net/Mentors/DonG.htm DON GREGGS - Platinum member > diagnosed in 1991 and choosing surgery which failed is to have radiation > following positive bone scan > > http://www.yananow.net/Mentors/E.htm ROBERT ELLIS - another member, > diagnosed with T4 disease only last year has passed on > > http://www.yananow.net/Mentors/H.htm TIMOTHY HOTUJEC - Silver > member who chose surgery as primary treatment, which failed and is now > concerned about possible metastasis > > http://www.yananow.net/Mentors/JimJ.htm JIM JAUCHEM Silver member who chose > surgery and whose PSA eight years later is undetectable and who has no > problems > > http://www.yananow.net/Mentors/V2.htm JOHN VONHOF chose EBRT (External > Beam Radiation Therapy) and ADT (Androgen Deprivation Therapy) now has > gynecomastia > > http://www.yananow.net/Mentors/J.htm PETER JACKSON Silver member is > back on ADT3 in view of rising PSA > > http://www.yananow.net/Mentors/KentW.htm KENT WILLIAMS has decided to go > for proton beam at Loma , despite not getting insurance approval > > http://www.yananow.net/Mentors/RichB2.htm RICH BROWN - has just completed a > year from RALP (Robotic Assisted Laparoscopic Prostatectomy) - some slight > incontinence and ED problems > > http://www.yananow.net/Mentors/AlanC.htm ALAN CHARLTON - was told earlier > this year that his original PSA was not 1,500 as he had been told, but > 2,100. Has had a rollercoaster ride with his PSA numbers since his last > update in May last year > > http://www.yananow.net/Mentors/PatP.htm PAT PRIESTLEY had a really bad > problems with shedding brachytherapy seeds - a TURP (Transurethral Resection > of the Prostate) helped in the end > > http://www.yananow.net/Mentors/BenP.htm BEN PARRETT has had his seed > implants and will review progress next month > > http://www.yananow.net/Mentors/ChrisM.htm CHRIS MERROW has had a number of > problems, some prostate related, some not, which have added up to an unhappy > year > > http://www.yananow.net/Mentors/AlA.htm AL AL a little over a year after > RALP (Robotic Assisted Laparoscopic Prostatectomy) is happy with the outcome > > http://www.yananow.net/Mentors/C.htm GARY C chose Active Surveillance > and his latest biopsy did not find any adenocarcinoma - just a deal of PIN > (Prostatic Intraepithelial Neoplasia) > > http://www.yananow.net/Mentors/TomC.htm TOM C had brachytherapy in April > last year and all's well > > > > > > > > All the best > > > > Terry Herbert > > I have no medical qualifications but I was diagnosed in '96: and have > learned a bit since then. > > My sites are at <http://www.yananow.net/> www.yananow.net and > <http://www.prostatecancerwatchfulwaiting.co.za/> > www.prostatecancerwatchfulwaiting.co.za > > Dr " Snuffy " Myers : " As a physician, I am painfully aware that most > of the decisions we make with regard to prostate cancer are made with > inadequate data " > Quote Link to comment Share on other sites More sharing options...
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