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Posted 2/21/2013 5:10 AM (GMT 0)
Hi all, this is a repeat post from a newbie that unwittingly hi-jacked another members thread, sorry bro. This is some good news from this newbie:
________________________________________________________
Dx'ed at 52, now age 58. Original PSA 511 Gleason 9
PSA now consistent at 2.5
Therapy from beginning has always been 30mg Lupron and 10 mg Casodex
Besides painful side effects of therapy I am happy and positively fulfilled in my life.
I would like to ask you regular members if such a wonderful and consistent pathology is common. Thanks to all . . . Q17

Moderator post:
Quincy, I just made a minor modification and gave this post a title...tc

Post Edited (quincy17) : 2/22/2013 4:14:04 PM (GMT-7)

Posted 2/21/2013 5:15 AM (GMT 0)
With a starting PSA of 511 and a Gleason 9, these are excellent results so far. Welcome and congratulations, hope it continues to hold this well.

david in sc
Posted 2/21/2013 5:29 AM (GMT 0)
Thank You David, I think that I'm going to like this board!
Posted 2/21/2013 5:56 AM (GMT 0)
Quincy -- you are a miracle like todd and raddad and many others here.  long may you run brother cool !

ed

 

Posted 2/21/2013 6:38 AM (GMT 0)
thanks for the help TC and the support Purgatory. I honestly had no idea whether I was an anomaly or just typical or what. my first onc was very tight lipped and my following ones were not much better. However, when I would go to my PCP or psychologist they would gush over how well I was doing so I did have an idea that I had dodged a major bullet. Thanks for the support guys!
Posted 2/21/2013 7:51 AM (GMT 0)
Quincy you are very welcome. There was a day when you Dx was more common. The pre-PSA screening era had 90% of the diagnoses had PSA's in the hundreds and thousands.

Your PSA of 2.5 is fantastic after 6 years. That has been a great response to standard hormonal therapy.

I've met a lot of guys with PSA diagnosis in the thousands, and mets in lots of bad places. Your PSA of 511 and G9 Dx is a tough one but stay positive and hopeful. You've been on standard HT to date and doing well and the new stuff is working great...

Tony
Posted 2/21/2013 10:39 AM (GMT 0)
Quincy what fantastic news.
You just keep dodging that bullet!
Stay well.
Susan
x
Posted 2/21/2013 11:58 AM (GMT 0)
Quincy, first off, welcome to our little corner of the world.

Wow...you got some fantastic results going there! Congratulations and keep on keepin' on!
Posted 2/21/2013 12:12 PM (GMT 0)
Quincy, thanks for joining us and congratulations on the excellent results. I have been on hormone therapy for nearly 30 months, so I understand what you are experiencing.

As TC stated, your dx has thankfully become far less common, but from time to time an extremely high PSA is found. I was PSA 59 and my gp doc freaked out. My uro took it in stride as he has treated men with PSA in the thousands. I then learned on this forum of others like our friend Todd who was over 3,000 at a much younger age and I realized mine wasn't so bad after all.
Posted 2/21/2013 12:54 PM (GMT 0)
Hi Quincy,
Welcome home. I think you will like this place too.
G-9!!! Wow. Even I am impressed. That takes some doing. As long as the H/T keeps working ride it. Are you getting anything for your bone health.? I am still on lupron and casodex but community keyed provenge last June. I.hope you.stick around. Regards Todd
Posted 2/21/2013 2:19 PM (GMT 0)
Congratulations. My neighbor was a G9, never even had HT, just surgery, and his PSA is undetectable after 9 years. G9 is not a death sentence, just an indication that you have to watch it much closer.
Posted 2/22/2013 1:22 AM (GMT 0)
WOW!!! What a fantastic board. I've been looking for a site like this . . . positive, informative, and caring . . . for 6 years now, the hunt is over. Given the wonderful overflow of messages I do hope you will forgive me for missing some names . . . reach out, I soo agree with you that a G9 is not a death sentence just a rather rude wake-up call. my father and his father both had PC, caught it early, and lived to their 80's so I plan on doing the same, I plan on riding the HT as far as it will take me. Todd,I'm outdoors a lot so a D supplement of 2,000 units seems to test out quite well. I see that you had mets a bit as I did in the ribs. Once more, no death sentence, right? I don't plan on getting thrown off this train so I look forward to a long and productive membership.
JNF, yeah that 511 bent my brain a bit until I did some research and found guys with PSA's similar to Todd's. That really helped put things into perspective. ONCs are very reticent when it comes to prognosis time and I really can't blame them. Thank heaven for a board like this where you can compare and contrast your readings with your mates.
Sephie and Susan, am I right in that you are caretakers? If so, you have my unlimited respect. My wife Connie,is currently not only helping me but she is also helping a friend's wife live through this
situation. IPomise to do as you say, live well and positively in this corner of the world and dodge every bullet that comes my way. thank you again jnf and tc, your words of support are more than welcome . . . they are treasured reminders that I still have plenty to give back to our world so I had better stick around . . . Q17
Posted 2/22/2013 1:27 AM (GMT 0)
Hi Quincy GREAT job kicking it down from 511 - welcome and hope to see you around.
Posted 2/22/2013 1:30 AM (GMT 0)
quincy,

I hope you indeed like our board and corner of the world. We have several men here that had very high PSA starting numbers and Gleason 8/9 like yourself. Most of them have been holding on pretty well, so that should give you some encouragement.

While I am only a Gleason 7 with a starting PSA of 16, I quickly failed both surgery and radiation, and as of December had a fast rising PSA of 40. Sometimes Gleason 7's can be very unpredictable and volatile.

David
Posted 2/22/2013 2:23 AM (GMT 0)
Yeah, purgatory, it all depends on the aggressiveness of the carcinoma, a 7 is oftentimes worse than a 9 because of that. My belief is in the positivity with which you attack the tumor and, indeed, life itself. and thX for the encouraging words Buddy!
Posted 2/22/2013 2:32 AM (GMT 0)
yep, my oncologist has said, that even though gleason 8/9 are bad news, they often run a predictable course, where by some gleason 7's can be very aggressive and hard to control
Posted 2/22/2013 7:31 AM (GMT 0)
Great news Quincy! 511 down to 2.5 is a real good move, I am a G7 and have never reached a zero, my PSA has floated all over the place for the last 5/12 years, maybe one day will have to start HT who knows, keep up the good work, and welcolme to HW.

Regards Mal.
Posted 2/22/2013 7:36 AM (GMT 0)
Thx for the encouraging words Buddy. This site has totally floored me especially when compared to the myriad other sites I've visited. I love the way it is almost free of negative posts and the usual ubiquitous bickering found in other cancer sites. See you around the board . . . Q17
Posted 2/22/2013 8:01 AM (GMT 0)
To Maldaga,
As an HT 6 year vet I would avoid it as long as my onc would let me. It has some seriously negative side effects such as: almost total chemical castration. Severe musco-skeletal pain. Extreme fatigue. Lowered pain threshold Loss of stamina. Complete loss of body hair except facial and head. Hot flashes similar to menopausal symptoms. Penile shrinkage up to 70%. etc.
Of course, the alternative is much worse, lol. I have learned to live with it but the pain is the worst of the lot. I am on a very high Rx'ed dosage of both Oxycodone IR and Fentora. There is also depression to deal with for which I've been Rxed Cymbalta and the anti-psychotic Abilify. With these to contend with I would make sure that there was no other choice. Please feel free to contact me about this subject . . . Q17
Posted 2/22/2013 8:25 AM (GMT 0)
Hiya Maldugs, I wrote you a reply but addressed it to Maldaga. I believe it's the one before this one. My bad . . . Q17
Posted 2/22/2013 11:53 AM (GMT 0)
Hi Q17,

“Sephie and Susan, am I right in that you are caretakers? “

A caretaker no, I see myself more as a very lucky lady who has been blessed with a beautiful man to share her life with – and he just happens to have PCa.

Nice to have you with us.

Susan
x
Posted 2/22/2013 2:57 PM (GMT 0)
Susan, you sound like my wife. Your husband and I are very fortunate men, The PCa has only brought us closer together. Your positive outlook can do nothing but help.
_________________________________________________________Dx'ed 03/08/07 PSA 511 Gleason 9. age 52
current levels PSA 2.5. age 58
Outlook positive, happy, and head over heels in love
Posted 2/22/2013 3:03 PM (GMT 0)
Quincy,

Welcome to our non exclusive Fraternity.

This is the kind of good news this forum needs more of and do not ever be afraid to post more. We have so many great G9 guys in here who are fighting the valiant fight against this beast and success stories just help with their determination to never give up.

One of my favorite all time TV shows is Quincy M.E.

Terry

 

Posted 2/22/2013 3:26 PM (GMT 0)
Welcome from another G9. I am very glad you found us and decided to join. Its very comforting to see positive results such as yours. We welcome all those dealing with PCa; Those that want to help, those that need help. And that can change by the day.
Posted 2/22/2013 3:43 PM (GMT 0)
Since other GS9s are popping in to say hello -- howdy!

Welcome to the forum.
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