pT3 Club

Haven't seen any post from this club in a while, thought I'd get it going.

We need to be looking for any updates, celebrations, thoughts, etc...

I'm celebrating my last firmagon shot after 18mo of ADT. YES!

Mike

Congrats on finishing your 18 months. Hope you are done with ADT, at least for a long time.

And, speaking of things that take time, don't get discouraged if it takes a while to recover from the hormones. Six months to a year is pretty typical. It may be a bit quicker for a youngster like you but it'll keep you waiting. Usually, about the time you get discouraged and decide your mojo is never coming back it starts to sneak up behind you and you suddenly realize that you got to feeling better while you weren't paying attention.

Update & Question:
It's been 10 mo since last Firmagon shot, man has it been super blessing not to get those monthly injections!

Latest T=156, slowly getting up there, feeling better for sure.

Q: My health insurance now has local clinics that I can go to for basic things; check ups, Rx, Labs, for all with no additional fees (that's nice since we have 3m ded.)
I had them draw blood for latest PSA & T, they only read down to <0.1 (which I am thankfully) as opposed to ultra sensitive.
This is free, it will cost me out of pocket to go elsewhere to continue ultra sensitive test.
With my pathology, should I pay the extra or is the free lab ok for me?
Mike

Excellent news!

I have two sRT sessions to go and have been on Lupron since August 2016. Still deciding how much longer to stay on Hormones.

Best wishes to you!

Bobby Mac

Andrew, BMac, Aleph,
Thanks guys for responding!

BMac - You and I had almost identical pathology. Seems like 18 mo of ADT (that's how long I did) is the recommendation these days. With a coupe pos nodes, you may want to consider that.

I was very fortunate in that side effects were not bad at all, mostly some hot flashes, and joint pain. Stay active with regular exercise for sure.

Always comforting to hear from others with similar pathology. RALP Oct. 2015, PSA 10 weeks post-surgery 0.05. Started Zoladex 11 weeks post-surgery Dec 2015. Pathology: Gleason 8, SV+, tertiary gleason pattern 5 component, tumor quantitation approx. 30%, resection margins negative for tumor, bladder neck margin negative for tumor. Stage: T3bNX.
Began SRT 64gy Feb. 2016 - April 2016.
Will receive next Zoladex injection next week. Expected ADT duration 18 months.
RO was going to allow me to discontinue ADT this month but agreed to continuation at my request. (my request was due to TA comments and recent study he shared).

10 years since Dx.......8 years since SRT.........test result a couple of days ago: <.008. Ask me if I'm happy

My PSA became measurable again two years ago (five years after SRT) but stayed at low levels -- .04, .05. Two months ago it jumped to .23 -- still very low but a big increase from .04 six months earlier. My uro suggested he would want to start me on Casodex probably when I see him next in April or at least by the time it hits 0.5.

Now I've just had my first appointment with a medical oncologist at Dana Farber and he doesn't agree. He doesn't see an advantage to starting ADT early vs waiting until PSA is higher -- 10 or so, at least in the absence of a rapid doubling time. Even though my PSA has doubled more than 2x in the past 6 months, he thinks the total of 5 doublings since my SRT is closer to the long-term trend. If he is right I am still some years away from ADT instead of the months away that I was hearing from my uro. I'll feel more assured if my next PSA test in March doesn't show a big increase.

In the meantime I will keep my scheduled appointments with my RO and uro to thank them and tell them I'm moving my care to Dana Farber for the next phase, now that the goal has shifted from attempt at cure to long-term management.