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Prostate cancer treated with Leuprolide

Posted by donnelson @donnelson, May 25, 2016

I had 43 days of prostate cancer radiation about 5-6 years ago. My PSA becgan to rise in summer of 2014. Suddenly it went from 5 to 20 in 4 months, only to drop a bit the next week. My doctor suggets Leuprolide which is administered every 6 months by a shot. I've read many bad side affects(swelling of feel and legs, visual changes, hot flashes and generally lower testrosterone levels). Have others had this problem? I'm wondering if I should wait a month and have the PSA drawn again?.

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flor | @flor | Jul 17, 2016

COLLEN THANKS FOR YOUR INFORMATION. WE JUST LEARNED THAT OUR SON HAD A HIGH PSA 4.6 HE IS 43 AND HE HAS MEDICATION FOR PROSTATITIS. AFTER THAT HE WILL NEED ANOTHER PSA TO SEE IF THE NUMBER DECREASED.. WE HAVE ALREADY BEEN IN TOUCH WITH MAYO CLINIC DRS. AND WILL TAKE THE DECISION OF HAVING A BIOPSI AS SOON AS POSIBLE AT MAYO.

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3 replies
flor | @flor | Jul 17, 2016

I FORGOT TO SUGGEST TO YOU TO READ THIS BOOK PROSTATE A GUIDE FOR MEN AND THE WOMEN WHO LOVE THEM. BY PATRICK WALSH MD.

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2 replies
flor | @flor | Jul 17, 2016
In reply to @donnelson "Thanks.  Instead of surgery I had 43 days of radiation.  All was well (from 2011 )..." + (show)
@donnelson

Thanks.  Instead of surgery I had 43 days of radiation.  All was well (from 2011 ) until this summer when the psa for some reason went from 8 to 20 to 31.  I met with a medical oncologist yesterday and we decided to do bone and CT scans next week and then regroup.  She said that hot flashes were most bothersome but we could start slowly with lupron and see how that goes. 

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THE ONLY OTHER THING I WOULD TELL YOU TO GO TO MAYO CLINIC ROCHESTER AND HAVE A SECOND OPINION.

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donnelson | @donnelson | Jul 17, 2016
In reply to @flor "I FORGOT TO SUGGEST TO YOU TO READ THIS BOOK PROSTATE A GUIDE FOR MEN AND..." + (show)
@flor

I FORGOT TO SUGGEST TO YOU TO READ THIS BOOK PROSTATE A GUIDE FOR MEN AND THE WOMEN WHO LOVE THEM. BY PATRICK WALSH MD.

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You might also consider "An Introduction to Prostate Cancer", a publication of the Prostate Cancer Foundation. Also from them: "Nutrition, Exercise and Prostate Cancer" and "Report to the Nation on Prostate Cancer: A guide for men and their families" Abbott has a a book called 100 Q&As about Prostate Cancer by Pamela Ellsworth, MD

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JohnWBurns | @johnwburns | Jul 17, 2016
In reply to @donnelson "Thanks.  Instead of surgery I had 43 days of radiation.  All was well (from 2011 )..." + (show)
@donnelson

Thanks.  Instead of surgery I had 43 days of radiation.  All was well (from 2011 ) until this summer when the psa for some reason went from 8 to 20 to 31.  I met with a medical oncologist yesterday and we decided to do bone and CT scans next week and then regroup.  She said that hot flashes were most bothersome but we could start slowly with lupron and see how that goes. 

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I'm a little curious why you specified Mayo Rochester? It is the highest rated, by US News anyway but I have found Mayo AZ to be very good. Good advice in any case. Good for you for being so supportive,

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Paul Dickie | @BuckyFestoon | Jul 18, 2016
In reply to @donnelson "Thanks.  Instead of surgery I had 43 days of radiation.  All was well (from 2011 )..." + (show)
@donnelson

Thanks.  Instead of surgery I had 43 days of radiation.  All was well (from 2011 ) until this summer when the psa for some reason went from 8 to 20 to 31.  I met with a medical oncologist yesterday and we decided to do bone and CT scans next week and then regroup.  She said that hot flashes were most bothersome but we could start slowly with lupron and see how that goes. 

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In August of 2011 I had a PSA of over 25,000 (you read that right), I was jaundiced and in renal failure. I went to Mayo Rochester and am alive today because of their expertise. Specifically Dr. Kwon. As far as i know the Mayo Clinic Rochester is the only place in the U.S. where you can get the C-11 Choline PET scan (Google it) which is to my understanding the best diagnostic tool yet developed for the early detection and staging of prostate cancer. BTW I 've done it all. Leuprolide for 2+ years, Taxotere chemo, double nephrostomy for 8 months, 2 surgeries and monthly visits to Mayo for 2-1/2 years (fortunately I live just over an hour away). My PSA has been undetectable and my C-11 Choline PET scans clear for 3+ years now. IMHO there isn't anywhere else to go. All other Dr's I saw prior to going to Mayo evaluated my condition and determined all I needed was palliative care until the cancer killed me. Dr. Kwon always took a curative approach with a curative attitude and that is why I am here today.

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JohnWBurns | @johnwburns | Jul 18, 2016
In reply to @donnelson "Thanks.  Instead of surgery I had 43 days of radiation.  All was well (from 2011 )..." + (show)
@donnelson

Thanks.  Instead of surgery I had 43 days of radiation.  All was well (from 2011 ) until this summer when the psa for some reason went from 8 to 20 to 31.  I met with a medical oncologist yesterday and we decided to do bone and CT scans next week and then regroup.  She said that hot flashes were most bothersome but we could start slowly with lupron and see how that goes. 

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Thanks for weighing in with that and glad to hear that you made it back from the edge. I know about Dr Kwon's work because I've had prostate cancer, a recurrence, and may be looking at another recurrence after salvage radiation. The breakthroughs in imaging are game changers for treatment of advanced prostate cancer and Dr Kwon is on the leading edge. As far as I know its not being used yet for initial diagnosis in someone without a history of prostate cancer but I could be wrong. Its used only in advanced cased like yours. That said, you confirm what I've heard about Rochester, about the best available, but Mayo Arizona is great too. They will have a Choline C11 PET scanner in 2011. Here's one of the talks by Dr Kwon available on youtube.


Thanks again and best of luck.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 18, 2016
In reply to @donnelson "Thanks.  Instead of surgery I had 43 days of radiation.  All was well (from 2011 )..." + (show)
@donnelson

Thanks.  Instead of surgery I had 43 days of radiation.  All was well (from 2011 ) until this summer when the psa for some reason went from 8 to 20 to 31.  I met with a medical oncologist yesterday and we decided to do bone and CT scans next week and then regroup.  She said that hot flashes were most bothersome but we could start slowly with lupron and see how that goes. 

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Great video. Besides being informative and an incredible innovator, Dr. Kwon has a healthy sense of humor. I don't like they way health professionals talk about "patient failed" on treatment though. I know what he means but it makes it sound like the patient didn't try hard enough rather than that the treatment failed the patient.

Here's more information about Choline C-11 PET scan http://mayocl.in/2a3sy8U

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 18, 2016
In reply to @flor "COLLEN THANKS FOR YOUR INFORMATION. WE JUST LEARNED THAT OUR SON HAD A HIGH PSA 4.6..." + (show)
@flor

COLLEN THANKS FOR YOUR INFORMATION. WE JUST LEARNED THAT OUR SON HAD A HIGH PSA 4.6 HE IS 43 AND HE HAS MEDICATION FOR PROSTATITIS. AFTER THAT HE WILL NEED ANOTHER PSA TO SEE IF THE NUMBER DECREASED.. WE HAVE ALREADY BEEN IN TOUCH WITH MAYO CLINIC DRS. AND WILL TAKE THE DECISION OF HAVING A BIOPSI AS SOON AS POSIBLE AT MAYO.

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Flor, Sorry to hear about your son. I'm glad to hear that you have been in touch with Mayo Clinic doctors. I wish him and your family all the best. Was your husband treated at Mayo as well?

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JohnWBurns | @johnwburns | Jul 18, 2016
In reply to @flor "COLLEN THANKS FOR YOUR INFORMATION. WE JUST LEARNED THAT OUR SON HAD A HIGH PSA 4.6..." + (show)
@flor

COLLEN THANKS FOR YOUR INFORMATION. WE JUST LEARNED THAT OUR SON HAD A HIGH PSA 4.6 HE IS 43 AND HE HAS MEDICATION FOR PROSTATITIS. AFTER THAT HE WILL NEED ANOTHER PSA TO SEE IF THE NUMBER DECREASED.. WE HAVE ALREADY BEEN IN TOUCH WITH MAYO CLINIC DRS. AND WILL TAKE THE DECISION OF HAVING A BIOPSI AS SOON AS POSIBLE AT MAYO.

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I wish your son, and you, well too. He has age on his side in that the cause of the PSA rise is likely to be non-cancerous. You're getting him treated at the right place and he is lucky that he has such a supportive family. It'll work out.

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