Paul, you have been dealt a difficult hand. It sounds like you have been fighting hard, and I hope you have ongoing success. With the advanced types, the Gleason 9/10, it takes just about
everything available to go after it. Your case sounds like it's still hormone sensitive, so that's a plus. There are hormonal therapies that have helped many, sometimes for a rather long time.
I've added you to our G9 Crew roster on the "The Gleason 9 Crew -- Part 2, continued.
" thread. It includes G10 too, and you'll find several there. Not many, and the G9 folks (particularly the 5+4 versions) are almost the same for treatment options and so on. You can find some forum names that you might reach out to with specific questions. There are links to many of the guys' first forum posts, and if you click on the name by the post you often will find an email address.
A couple of notables on our forum are Todd1963, diagnosed with widespread mets over 10 years ago and doing well. He is a beacon of hope! Another is Tall Allen, who regularly has helpful links, and is helpful if you're looking for any specifics.
Stay with us, we're here to help any way we can. This forum is one of the very few places you'll find with people who can so much relate to what you're facing. Ask, vent, whatever, that's why we're here.
Bx: 6/12 pos, G9=5+4 (80%, 60%), 4+5 (2@100%, 80%, 10%), PNI+
cT3a (3T mpMRI: Bilateral EPE, NVB+, SV-, LN-)
Date PSA fPSA
9/12 4.1 15%
3/13 5.2 12% PCA3=31
IGRT by IMRT, 44 done 8/28/13: 50.4 Gy pelvic nodes, 79.2 Gy prostate
ADT2 3 yrs: Lupron/Casodex, ended 3/16
PSA <0.1 : 8/13 - 5/16;
rising - 0.2-8/16, 0.5-12/16, 0.7-3/17, 0.8-5/17, TBD-7/17