THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2017 SO THERE IS NO UPDATE.
Let me start by saying I'm very much alive and kicking and I've had a history of elevated PSA results since 1994 and, other than a positive biopsy in July 2006, have had no treatment. My PSA as of my last test was 32.19 in July 2011, and I intend to continue doing nothing unless and until I decide it's imperative I do so.
My PSA history is as follows [Dates are shown in US format i.e. Month/Day - thus for example 11/4 is not Eleventh of April but November 4]:
08/15/1995 - 3.8
03/26/1998 - 5.6
11/04/1999 - 6.9
02/15/2001 - 7.4
02/22/2005 - 8.8
07/31/2006 - 11.1
08/16/2006 - 11.6
01/07/2008 - 14.57
06/15/2009 - 15.9
11/05/2010 - 18.76
05/26/2011 - 34.8
07/20/2011 - 32.19
My concerns based on my research: PSADTPSAV>3.4 = 6x hazard ratio
My Gleason score upon diagnosis was 3+3, comprising one out of 13 cores submitted - or 5% of the tissue submitted. This was subsequently upgraded to 3+4 by acknowledged expert readings (Jon Epstein @ Johns Hopkins, as well as Zelefsky at Memorial Sloan Kettering Cancer Center in NYC and others at M.D. Anderson Cancer Center in Houston).
Things were going along smoothly from 1994-2010, with a PSADT (PSA Doubling Time) of 4-6 years. Then in May of 2011 my PSA doubled in 7 months from 18 to 34.8.
Let me tell you what happened to me and how it felt. About a month or two prior to going in for the May 2011 PSA test I began to feel a strange and extremely intense sensation (can't call it pain but it was certainly nearly as intense) whenever I urinated, defecated, or had an orgasm. This sensation was centered deep inside my body, between my scrotum and perineum area, obviously right at the prostate. This feeling persisted and grew more pronounced for 3 or 4 weeks until one day it sort of exploded. The immediate end result of all this was, the sensation mostly disappeared and I no longer had any ejaculate upon orgasm, other than one or two drops of clear, non-semen-like liquid - most likely closer to water than anything else.
What am I going to do? Nothing for now. I'm 62 and am far from being convinced this will kill me before anything else.
Let's see what happens from here on in.
My PSA rose much more precipitously (on Sept 7, 2012 it hit 105.7). Then I met with Oncologist (Memorial Sloan-Kettering doc in NYC) on Oct 26, 2012 and my PSA was recorded as 152.0 (rising about 28 points in a month). Lymph node biopsy (abdomen) on Nov 29, 2012 was positive. Bone scan showed suspicious spot on rib where I feel some minor pain. Doc says my PCa not CURABLE but is TREATABLE. Got my first PCa treatment ever on December 6, 2012 - starting Casodex daily 50 mg plus receiving an initial double shot (240 mg) of Degarelix. Going tomorrow January 3rd for next (2nd) Degarelix shot and we will check PSA level after first month of ADT2. Also scheduled for bone density scan a month from now. Feel pretty good... will update more when I have something to say... the ADT2 treatment was chosen for me by doc.... I think it's the only reasonable approach given the situation... I want to see the PSA knocked way back down.. let's see what happens next couple months. Regards to all.
UPDATE: PSA dropped from 152 to 12.29 in 28 days. Not bad. See what happens next month. Doc may switch me from Degarelix to Lupron so I can have injection every 3 months instead of every 28 days.
Degarelix and Casodex doing good job, bringing PSA down from 152 to 12.28 (30 days); 4.32 (60 days); & 2.67 (90 days). I hope to see it go undetectable (< .05), or at least not go back up.
I went on 3 month Lupron with Casodex from monthly Degarelix shots & Casodex April 2013. PSA eventually dropped to .2 for 3 consecutive months. Not undetectable but not bad. Stayed on Lupron & Casodex for 6 months then went off everything for 6 months holiday as a test, and for better quality of life (QOL). PSA went up each month immediately .3, .5, 1.8, 6.2, 16.3 essentially tripling every month, so went back on 3 month Lupron & Casodex again starting April 2014. See what happens next. Wish I could lose the fat and get my muscle tone back!! Anyone have successful experience with doing so?
I had 3 serial increases in PSA in February 2015 while on Lupron and Casodex. After 2 years and 3 months ADT2 consisting of Lupron/Casodex no longer worked. Dr switched me to Zytiga with Prednisone plus the Lupron shots. Zytiga immediately brought PSA down to undetectable 0.0 for the first time ever since my PSA was originally elevated in 1994. (My PSA has been as high as 192 in December 2012 which we brought down to a steady .1 with monthly injections of Degarelix in the abdomen, before switching to Lupron after 5 months). Zytiga is 1000 mg a day and Prednisone is required to lessen side effects. Going for my next 22.5 mg Lupron shot this Friday June 5th. on a personal note, I find a glass of wine and a good cigar to be very relaxing in the evening. I'm also on Ambien to help me sleep through the bone and muscle pain (and many random points of pain I presume to be lymph nodes) that was constantly waking me up at night. Hang in there!
Stopped Zytiga September 2015 which worked for a few months then PSA went up 3x consecutively. Fractured a rib at a tumor location in October by coughing. Fractured a vertebra at T6 lesion also coughing in January 2016.
Switched to Xtandi January 2016 which worked for about 4 months. However had to have vertebroplasty to glue vertebra back together and just finishing 10 radiations to kill that T6 tumor. Xtandi is stopped and chemo is next in a few weeks.
Had to start using walker 2 weeks ago because legs too weak due to spinal cord compression caused by T6 tumor mass. Might get better in a few weeks. Feel surprisingly OK. Still working.
That's it. Best of luck to all.
Pierre's e-mail address is: perrymclellan AT hotmail.com (replace "AT" with "@")
NOTE: Pierre has not updated his story for more than 15 months, so you may not receive any response from him.
