THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2014 SO THERE IS NO UPDATE.
June 2003 (age 55) in the UK during routine check, elevated PSA was found (9.4). In July 2003 biopsy indicated PIN and one area of suspicion, but I was put aside for six months saying that my heart and other ailments will take me first anyway (the butcher making the decision shall remain nameless)… At the end of the six months, PSA was at 64.4 and the biopsy / ProstaScint determined highly aggressive cancer that already spread to the seminal vesicles, but MRI and Bone Scan were negative (Gleason 4 + 5, T3b No M0). Conformal radiation therapy followed at Cromwell Hospital in London, with the maximum of 33 sessions of 2 GY each. I tolerated the treatment reasonably well and am grateful to the specialist performing it. PSA slowly lowered to 4.37 before starting to climb back up in May 2005. Consulted with Prof Horwich at Marsden in the UK. He recommended TAB (Total Androgen Blockade) and gave a statistical prognosis of max three years of life expectancy in October 2005. [There are few things that make me mad these days, but seeing ridiculous prognostications like this is one of them. No one knows how long any of us have got and no one should never try to predict - see The Elephant In The Room.]
Hormone treatment (Zoladex and Flutamide) commenced in November 2005. PSA was lowered to a nadir of 0.05 August 2007. In February 2008 it started to raise again, so at 6.19 in February 2009 Flutamide was deemed "used up" and Bicalumide (Casodex) was introduced instead.
In mid-2009 we moved back home to the USA and settled in Albuquerque, NM. I was fortunate enough to get under the care of Dr Rabinowitz at the UNM Cancer Center. The effectiveness of Casodex only lasted until December 2009. We tried Zoladex alone for six weeks but the PSA shot up to 26.9 by early February 2010. At that time Ketakonozole and Prednisone were introduced. At the next checkup my PSA was back down to 12. However, in a few months, the side effects of the Nizoral were not tolerable, so it was stopped.
I was "coasting" for a while, but the PSA kept rising. In April 2011 came the word of "chemo or bust". Apparently, according to my institute's protocol, that is the only thing allowed after traditional hormone combinations fail. Well, I refused chemo and insisted on a re-staging. Ended up at MD Anderson in Houston. Both CT and Bone Scan were negative, even the original tumor could not be found. I was "declared" having PSA-only disease, that nobody seems to quite understand.
They strongly recommended against chemo considering all my other illnesses (atrial fibrillation, congestive heart failure, type II diabetes, high blood pressure and fairly severe clinical depression) but encouraged Provenge or Abiraterone (Zytiga). After further consultations back home, the Abiraterone (Zytiga) option was selected. Started the new treatment around August 1st, 2011 at PSA 53. At two following controls there were major improvements. Current PSA (December 2011) is 15. No side effects so far.
The worst things are a weight gain of about 40 pounds since starting hormone treatment, the lack of sexual functionality, frequent fatigue and the emotional rollercoaster of always waiting for the next PSA results. However, I still enjoy life on my own way, live at my favorite place on the World, have a wonderful and very supportive wife and daughter, love to travel (at least want to give a workout for the Reaper when he wants to find me…) and marvel at my girl's (25) efforts trying to accomplish her dreams in life. I had a great life, when the end comes, I will have no regrets.
And, of course, I keep hoping for more "miracles"…
Abiraterone (Zytiga) started failing by mid August 2012 and was stopped altogether at the end of September at PSA of 55.9. The so dreaded chemo idea came up again, but I was still fighting it vehemently. Never the less, my insurance would not even consider to pay for the next available hormone treatment unless chemo was tried first. So I did, the mildest and shortest trial run. It was miserable and I refused to continue with it. Altogether my hormone treatment was suspended for about 3 months. Then, to my greatest luck, a new drug was approved well ahead of the expected approval date by the FDA. Xtandi is advertised as causing minimal side effects. While I would not fully agree with that, it again started to reduce my PSA to the latest of 37. But, unfortunately, things are not all well. Even though the different scans do not clearly prove metastasis, I have a lot of pain in the arms, legs, hips, buttocks, etc. and it seems like everything hurts. This may partly be caused by Xtandi itself but I have a lot of co-morbidity factors too that can add to the pain. Never the less my mobility is pitiful and I am forced to use some opiates to function at all. It seems that my depression is getting worst too. On the bright side, my Wife and Daughter are happy that I'm still around and that gives a lot of courage to put up with it all.
God bless you all, keep on fighting.
Laszlo's e-mail address is: lmezny AT yahoo.com (replace "AT" with "@")
NOTE: Laszlo has not updated his story for more than 15 months, so you may not receive any response from him.
