Gleason 9 - Amazing story

Note: this is an old thread reopened by a new member looking for suggestions for her dad. Scroll down to a recent date before you respond. Or better yet, see the (new) Thread for Jannette in India that Beth (celebrate life) started for her.

I just ran across a G9 with lymph node involvement. Since surgery / HT his PSA has been undetectable. I don't have all the specifics yet. Oh by the way - surgery was in 1994. Yes, he is a 15+ year survivor.


I suggest we hold marathon interviews with this guy and don't let him out of the room until we learn all the secrets.

Post Edited By Moderator (PeterDisAbelard.) : 2/9/2015 8:08:02 AM (GMT-7)

If he won't come join the forum, at least find out what he eats!!

Juliet

10% of the PC patients with bone mets survive ten years or more..10% do not survive a year..It's the nature of the beast we are dealing with...It sure would be nice to know the details..

Hey Dale, this guy might run for president of the zero club.....lol.........Kev

i thought of milken too or andy grove, tho grove was probably a gleason 7 or 8.

ed

I met this gentleman online.  I emailed him, told him about HW, and invited him to join.  He mentioned he tried to join, but finds it difficult to login, etc... Perhaps he will down the road and I will continue to encourage him.  He did say that I can share his story.

These are the facts as I know them currently:

- He had a low PSA, but aggressive PC, going into surgery (less than 2 I think).

- RP in 1994.  It was found to be a Gleason 9 and had lymph node involvement.  PSA after surgery was undetectable. 

- Doesn't need Lupron because Mayo clinic did castration.

- HT: started on what he calls, "triple blockcade": Casodex, Proscar and/or Avodart.  I think he says he is still on these. 

- He mentioned taking D3, resveratrol, Lycopent, genestein, Pomegranate, and quercetin for years.

If it wasn't interesting enough already - He had a twin brother who had G9, but unfortunately passed away 6 years ago.  He told me that his brother was not aggressive enough in his treatment plan.

He is a big proponent of the ultrasenstive PSA test.

If I get more information that is relevant, I will pass it on.

Thanks,

Jerry L.

My father diagnosed Prostate carcinoma in july 2014. Bone sacan was negative , MRI showed tumor in left side of the prostate only and no evidence of exra-capsular extension. PSA was 6.11. Robotic surgery done in August 2014. Post pathology report showe gleason score (4+5)9. PSA done in January showed 5.11. Bone scan showed 3 mets cry cry cry two in ribs, one in L3 vertebrae. Currently on Zolodox 10.8 mg injection and casodex. After 3 months PSA again. very worried have heard Gleason 9 not having good prognosis.in India even no new treatment available. cry. Any comments friends??

Please ask this person his secret... My father suffering from same gleason 9

There is always the bell curve, but it is not chance{ don't guilt me in reverse here as none is intended}that selects. Or another way. The human being has the malleable wiring to operate outside of chance. Life is not a crap shoot! It is a game of sorts, in this paradigm, but the odds are decisively with us, but ya know, that's me…. I suppose the real question is ,why IS there always a bell curve?

There are a lot of stories out these like this. There is no 100% mortality rates on G9 cases. But it's nice to hear from them. My predecessor at UsTOO was a G8 with lymph nodes but that was 1992. He's still around at age 86.

Envious.

Jannette,

Beth (celebrate life) has started a new thread for you. Here's a link you can click:

(new) Thread for Jannette in India

You should also look for comments there.