Posted 9/1/2018 8:07 AM (GMT -6)
I started this thread to help the new guys that come along. I was encouraged to do so by Yooper, a great guy who helped me in a huge way when I was diagnosed, but who isn’t around as much, he’s gone on I assume, to enjoy life without PC. I figure it’s time for an update. Even if it’s not all great news, I expect to be here in 15 years updating my story. All I write in this post has been said before, so apologies to the members, but again, this is for new guys, so I am summarizing here for continuity.
So as is documented in my signature, my PSA began a slow but VERY steady and clear rising trend, exactly 2 years after surgery. At .06, I was advised by an RO at Cleveland Clinic that with most recent studies showing earlier is better, it was time to treat. At .068, I was advised the same by Michael Zelefsky, an RO at MSKCC, who is well regarded to say the least. My surgeon/Uro, was advising me to wait till .2, then do scans. Interestingly he ultimately changed his tune, saying, “medically I still feel .2 is the number , but I treat the whole person, not just the disease, and the stress of doing nothing and going from PSA to PSA for another year or two won’t help your health, so I agreevits a good idea to act now”
So at .08, I pulled the trigger. RO said he thinks 80% chance it’s in the prostate bed. So I’m hoping and praying that this time, I get what the odds say I’ll get. He also said that he thinks ADT will give me, in my case, a 5-10% improvement in the odds. (The MSKCC Nomogram says 15-20%.)
11 days ago, I had my first of 6 monthly shots of Firmagon. The first dose is a triple dose, and it was two shots in the stomach.i was a train wreck for 3 days after the shot. Surgery guys may remember the inability to get out of bed the first few days, unless you rolled onto your side and pushed yourself up with your arms. That’s what it was like. I was also very lethargic, and ran a fever for a day or two.
But on day four I started to feel better, and by day five I was back to myself. Now, at day Eleven i actually feel great, no side effects whatsoever (although I’m sure they are coming), I’m doing weight training 3-4 days a week, crunches every day.
My simulation is set for September 12th, and so I assume I’ll start SRT around end September. My next Firmagon shot is September 24th. Not looking forward to that, but if I get the cure, this will all be worth it, needless to say.
It’s funny how much of this parallels my experience when initially diagnosed. When PSA started going up, I was devastated. Ultimately I adjusted. But when it was time to make a decision, I was all over the place, reading study after study, thinking, and overthinking. And rethinking. Totally stressed and depressed
But just like primary treatment, once I made a final final decision, I felt at peace.
I’ll update occasionally, if/when important stuff comes up.