The Gleason 9 Crew - Welcome and how ya doin'?

I am the youngest boy out of five boys in my family. My father and his two brothers all had PCa so we knew we needed to annual get our PSA tested My next to oldest brother was the first to be diagnosed 11 years ago with G7, he had a RRP and has been clean since. i had been watching my PSA rising fairy fast from an annual test. (My Internist should have sent me for biopsies two years ago) so we scheduled the next yearly test and something told me to also get a six month test. I went in at the end of December and gave them my blood and found out that my PSA changed from 3.7 to 5.3 in six months. I got an appt at my cancer center and the PA found a tumor on my lower left apex during her DRE exam. The UO asked if I wanted to be biopsied and that he was available so we went in an assumed the fetal position and counted to twelve snaps. Stood up and was bleeding like I was having a period. seven days later, the world came crashing down. I was a G8 possible a G9 (5+3) and they thought the cancer was outside the capsule. The U.O. encouraged me to sign up for a trial study with Provenge and I did three of their treatments and then had my RRP. Pathology came back worse, G9 5+4 in many locations, extra cappular extension, seminal vesicle involvement, and yes one lymph node. The world collapsed around me. Went home to recover knowing that most likely I was going to have to immediately start HDT and IGRT/IMRT as soon as I got my my first post op PSa test. Fortunately, I was given a couple of non-detecable readings, until December 2012 where we saw the needle begin to move which trigger the HDT in January and the IMRT/IGRT that finished at the end of May. Forgot to mention that i went in during the middle of December for a surgery for the penile prosthetic because as i was told, there would be too much scar tissue to do the implant after radiation.

I am worn out, with no Vitamin T. My testosterone level is at a whopping 3 and the radiation has totally wiped me out. Did I say, I hate this darn cancer?

Just an up date from Gl 9.
This time last year started salvage radiation , PSA was 33 after surgery in May. No mets seen on scans., one lymph node. Where did PSA come from ?
This week for a second time the 3 month PSA was undetectable.
We see this as good news.
18 months of lupron so far without too much negative effects.
Not yet sure i how much longer on lupron, 2 or 3 years ? Any thoughts?
Bone density scan showed some osteopenia, but not yet on fosamax or prolia, I wonder that he should be.
He feels great and has been strong through out.

Is 3 months my post surgery, I m o.k back to most my daily routine.

Just pickup my PSA result yesterday.  Radiologist/Oncologist gave me an open date apptmt if I need to consult him.

3 mos PSA <0.1

How did I find out ;

On 1st July 2010 I went to my Doctor because of urinary frequency and because periodically I would momentarily be short of breath. Until then I would rarely need to see a doctor and had only been in hospital for ankle surgery due to an accident. Dre abnormal, Blood taken for PSA, result was 200. I was urgently referred to a urologist, who confirmed abnormal Dre, blood taken and the PSA had risen to 254 in 6 days. A biopsy was scheduled for 15th and the result was 50% G 4+5, 40% G 4+4, and 1 core from 12 negative. This really didn't mean much at the time and the urologist didn't give much explanation nor did I know what to ask anyway.

Treatment :

I was started on Cosudex and the 15 days later given my first hormone injection (Zoldadex). I wasn't given any other option, just told this was the treatment. I didn't have much time to think much or research about my PC because I was referred at the same time to a cardiologist for my shortness of breath, after numerous tests and an angiogram in day surgery was told I needed a double bypass and a new valve, and I wasn't going home. I remember telling the guys at work when I was leaving work at lunch time to drive myself to hospital "see you tomorrow" famous last words, didn't see them until 6 weeks later. Everyone told me don't worry about your PC it won't kill you, your heart will ! Tell that to the 30% of PC sufferers who have aggressive/advanced/metastized PC and see their reaction, but at the time I was none the wiser and just accepted what I had been told. It wasn't until December 2010 after getting over my heart surgery, finished cardiac rehabilitation and had settled in back at work did I start to take an interest in PC and my situation. I quickly came to the conclusion my PC was not quiet like it had been portrayed to me.
My PSA continued to drop until April 2011 when it reached 3.2 and I had become castrate resistant and my PSA then started to steadily rise, last week it was 14.
Scans taken in April 2011 and when compared to July 2010 showed an increase in the cancer in my pelvis, legs, ribs and spine, scans taken early in December 2011 showed further increases.
I decided to be proactive and try to join the Prevail trial of MDV3100, I qualified and started the trial in December. Except for a small increase in my pelvis in July 2013, the cancer stabilised and there was no advancement over 18 months, scans taken last week show no change to the July scans. This was fantastic.

How am I doing ;

I am very fortunate, I am still able to work full time, and I am really not in much pain, just some pain in my lower back and periodic day long headaches. But the HT pays a heavy toll on you, both physically and mentally. The SE are horrific and other people really don't understand what you are going through. I find the constant recurring hot flushes, the fatigue, memory loss, loss of body strength, depression, loss of sexual function all contribute to a terrible strain on my marriage of 41 years, my wife really doesn't understand me and what I am going through. I am a different person now, I have become withdrawn, moody, emotional and would love the return of the intimacy we once enjoyed.
At night I sit down and before long I am asleep, we go to the movies...I rarely see more than the first half, my wife just doesn't understand.
I am retiring next August, we have bought a caravan and intend to do some extended travel of our fantastic country.

I wish my fellow suffers all the best.

Hang in there, Greetingz! I wish I could be there to help you through it. In the meantime, here's the best thing I can share: The sound of wind through harp strings--it sounds like angels singing. I recorded it this weekend, and have been looping it to destress during a recent anxiety attack.

https://soundcloud.com/harperhendee/sudden-insight-windsong-on

--Harper