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Posted 8/17/2015 4:03 AM (GMT 0)
I figure I'm screwed now. "Rock star" "nerve sparing" surgeon didn't get it or spare the nerves. "Rock star" MO slowed it, then stopped the rise,but now it's up in each 2 monthly tests. 0.199 Friday. I think that's the old school trigger for SRT. I was hoping to avoid that and the related hormones. I already have "man-boobs" starting. This whole thing is a pile of cr**p. Lots of dollars spent and no better outcome so far.
Posted 8/17/2015 11:10 AM (GMT 0)
Very sorry to hear that your PSA is rising. Could it be that there is some left over prostate tissue that the surgeon missed?

If you do need to go to SRT, here's best wishes for a cure.
Posted 8/17/2015 11:22 AM (GMT 0)
Sorry to hear about the situation. This disease is complicated and rather unpredictable, frustrating, and infuriating. Every treatment has a range of outcomes, some great, others not so much.

Don't give up, the follow on treatments are generally pretty tolerable and there are quite a few left for you.

All the best for you!

Jerry
Posted 8/17/2015 12:17 PM (GMT 0)
Rigby,

The advantage of the radiation and the hormones at this point is that if they work then in a couple of years the madness stops and you get to gather the ratty fragments of yourself that remain and get on with your life. That was a help to me getting through it all. The hormones were my least favorite part -- the most flavorful ingredient in the three-scoop sh:t sandwich of surgery, radiation and hormones -- but the hormones were temporary, like the radiation, part of the cure -- something to put up with for a few years.

Uncured cancer can be managed -- yours probably better than mine, G7 vs G9 -- but the primary tool is hormone therapy, which I hate. I found the idea of two years of the danmable stuff easier to put up with if it helped me try to avoid the rest-of-your-life "new normal" situation.

Your cancer sounds curable, still, to me. I'd do that if I were you. The radiation isn't bad at all and the hormones don't last forever.

You could talk to Meyers about adding an aromatase inhibitor to your Casodex. Casodex as a primary therapy tends to have a man-boobs problem. But if the Casodex isn't controlling your PSA then there might be other drugs on the horizon if you PSA keeps rising and if that's true why not add the radiation and try to escape from the fun-house altogether?

That's what I would do, anyway.
Posted 8/17/2015 12:42 PM (GMT 0)
Rigby, not much to add, just want to wish you best of luck I this next leg of the journey. Sorry you have to deal with this. We all hate to see it when this cr@p happens.
Posted 8/17/2015 1:24 PM (GMT 0)
Sorry to hear that Rigby. It sucks. Hope whatever treatment you decide on nails it with as few side effects as possible. Hang in there.
Posted 8/17/2015 1:44 PM (GMT 0)
Rigby,
Very sorry to hear that you have had two consecutive rises. This beast can be nasty and elusive. Letting you believe that treatment cured you, only to be faced with a subsequent rise. However, your PSA, although rising, is still quite low and could possible be resolved with SRT. Dont give up just yet.
Posted 8/17/2015 2:08 PM (GMT 0)
yeah, that is a kick in the teeth isn't it?

Sorry you have keep dealing with this. Still, there is some hope that it the SRT and HT will stop the PC.

Hang in there,
Andrew
Posted 8/17/2015 7:31 PM (GMT 0)
Thanks guys. I'm still not over this shock. I'm only on 50mg of Casodex Monday, Wednesday, Friday. That doesn't seem to be a primary treatment in the normal sense. At least I've seen others on 50mg daily. Meyers did put me on daily anastrozole when my breasts started growing. "No side effects" was bull. I don't know if they stopped growing yet - maybe. Nipples still hurt when bumped and I'm not happy being shirtless in the pool even around my family. Nobody has said anything yet. Maybe they figure I'm getting fat.

My free testosterone is more than triple what it was when I first started going to Meyers (37 now). My total T is also almost doubled. DHT is way low of course. PSA dropped from 0.182 to 0.119, then almost doubled to 0.199 in two months. I don't understand why it would reverse trajectory so quickly.

I'll contact Meyers to see what he thinks should be next. He was very down on radiation when I asked him at my last visit. Said I would be stuck where I am with continence issues, and no chance of a natural erection recovering. If it is RT, what kind am I looking for? How do I find a skilled practitioner of the proper type? Moran is nearby but he's brachytherapy. I'm uncomfortable going back to Catalona for reference after his reaction to Meyers' name being brought up. I'm pretty sure he would recommend someone at Northwestern anyway.

My brother is a 9 and had radiation along with Meyers' treatment including zytiga. He's been <0.015 for almost a year so Meyers is discontinuing zytiga. I'm not happy thinking I might have to follow in his footsteps... But like you say, it's survivable. I'm planning to retire at the end of the year but won't be old enough for Medicare. Thought this would be a start to a happy new life but I'm not confident of that now.

Rigby

Post Edited (Rigby) : 8/17/2015 1:42:43 PM (GMT-6)

Posted 8/19/2015 8:42 PM (GMT 0)
So I did some more reading and found a Samadi article from 2012 that said high free T is prostate cancer risk for older men. I don't know if that means risky for men who already have cancer too, or just for those who might get cancer. Mine is about double the top end of the range right now after being on Casodex since March. Maybe that's what's causing my psa rise. Ttotal is almost doubled also, though I don't have a number back from the most recent test yet. Is there a way to mop up the excess without driving it to zero with Lupron or something?
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