Welcome to all Gleason 9 and 10 folks! (Also could be the Grade Group 5
Crew, using the newer terminology.)
This is the least favorite chapter of the club no one wants to join, but we are here to support each other. This roster was begun originally out of curiosity to see how many members here had which Gleason scores. It turned out to be more useful and of interest to many others.
This is now the third thread in this series. (As they become too long the forum software can't handle them).
First thread (September 2013 - August 2014):Gleason 9 Crew - Welcome and how ya doin'?
Second thread (September 2014 - July 2017):The Gleason 9 Crew -- Part 2, continued.
As a reminder, this roster, this "crew", this thread (and the prior two), is only meant to be a gathering place for those facing this aggressive diagnosis. It's not exclusionary, it's not elitist, it's not maudlin. It's meant to be a place where those with similar diagnoses can swap notes, ask questions, vent, and to be understood for the personal concerns even others with lower-risk PCa may not seem to grasp.
Discussions can be held in this thread. Feel free to start your own on the main page too, if you prefer. It may be more effective to hold the discussions here, due to the intended focus. Any time an update is posted this thread goes to the top of the front page again so all see it. In the first thread we mostly interacted within the thread, and it seemed to work ok. Whatever you prefer. This is here as a resource for us all.
It will help those following us if you'd post your story, even a brief version, including:
1) How did you find out,
2) how did you choose your treatment,
3) and how are you doing?The Roster
(Sorted by Gleason score, then by date of diagnosis. The links next to poster's names are to their initial introductory posts, where I could find them.)Gleason 10 Crew:
This risk group is almost identical to the G9 (especially the 5+4), so we'll include our G10 friends here:
microchip 11/2017 Just got pc diagnosed - worried and lost
Charlie1950 2/2017 (for husband) New diagnosis
af1001 1/3/2017 Prostate Cancer and Kidney Transplant and can I stop Casodex
Fatherof6 11/22/2016 Newly diagnosed Gleason 10
farz53 11/2016 (for father) G10, PSA> 100 guys' experience (Advanced PCa)
jack1954 9/2016 Gleason 10 - Further treatment options after first PSA confused
paulofaus 4/2016 My first post, Gleason 10, widespread bone mets, aged 49 at Dx - looking for suggestions.
Boon1 4/21/2016 (posted on: Just found out I have PC, with Gleason 9 - Nervous/Worried)
rockyfords 5/14/2016 Fangorn Forest
john16 4/22/16 Newly diagnosed, Gleason 10/9
maryanddan 2/11/16 (for husband); RIP 7/13/17 I'm married to a 10
WaterUnderTheBridge 2/2016 Intro from a CRPC Stage 4
*gibson00 11/2009 (for father)Gleason 9 Crew:
(The * indicates there's a post below in this thread, or in the first one.)5+4 Group
Nickname, Diagnosis Date, Link to introductory post
carattop (for husband) 10/2017 piggybacked 1st entry on: I have made it almost 5 Years with Gleason 9, I hope you do to.
ThisIsMyRealName (5+3, similar risk to 5+4) 6/2017 Forest For The Trees
Ash K 2/2017 Advice on treatments for G9
Polaris1! 1/2017 Gleason score 9 just found out today
Everton 11/2016 New Member
*Naples 9/2016 Shoulder Pain?
desert bound (for husband) 6/2016 New
Artist Mark 6/5/2016 PSA 3.5 %fPSA 7.6 abnormal DRE Biopsy or wait?
Staying Tuned 5/16/2016 A Real Stunner
aromasde 4/22/2016 Prostate Cancer
RioMedinaBill (and wife Carol, cj1961) 8/12/2015
Teamchris (for husband) 5/2015 PSA trending up on Xtandi
Mr Magoo 1/23/2015
Mike2420 1/6/2015 Next steps? Gleason 9, PSA 26.7
Fnp256 9/4/2014 (for husband)
*PSA3DOT7 9/2013 (or so)
Barb1 7/2013 (for husband) RIP: 3/10/2016 Gleason 9, T4,N3,M0- concerned about husband...
*Redwing57 4/16/2013 Well fudge, new member, Gleason 9 (5+4)
*Dyank 4/2013 (for husband)
*adjust 2/7/13 (RIP:9/2015)
Hotflash 7/2012 New Gleason 9 member. DX in July 2012. Gleason 9 (5+4), mets to iliac, L1, L2, L3 & L4
infohound2 5/2012 (for husband)
*DebbieMH 4/2012 (for husband)
*Upstate Guy 3/6/12
A Morton 1/2012 The Gleason 9 Crew -- Part 2, continued.
winmui 7/2011 (for dad)
bertb 3/2011 (possibly 5+5)
LowRoad 1/2011 New kind of PET imaging and treatment for men with mets
*Southern Comfort 2010
*howard l 2009
Savinjames 5/2008 Newbie pT3b with rising PSA after 7 years. Need advise.
herefishy2001 12/2007 (old 1998 forum name was herefishy)
Stxdave 1st DX 7/1999, RIP: 2/21/20114+5 Group
(entries without the type 4 or 5 detail also go here):
Nickname, Diagnosis Date, Link to introductory post
AbsAZ ?/2017 Gleason 9 - Doctor Recommendations for AZ and Southwest U.S.
runningscared 12/2017 Newly diagnosed, scheduled for radical but might have some metastasis, should i cancel surgery
december21 12/2017 Incontinence After Catheter Removal
Adagio 10/2017 New Member, just given my options
BigMak 11/2017 Age 54 Gleason of 9. Psa 27
BOB 46 11/2017 Choosing initial therapy for high-risk PCa
AintGotTimeForThis 9/2017 piggybacked on: "I have made it almost 5 Years with Gleason 9, I hope you do to."
Jim_54 8/2017 First Lupron shot tomorrow looking for advice
lama48, 2017, www.healingwell.com/community/default.aspx?f=35&m=3880667
LOML, 7/2017, posting for husband, Some hope and some good news please
NewHere123 6/2017 (for husband TempFlightRestriction, both posted on this thread) Advice on Next Steps
34mopar 6/14/2017 Starting Hormone Therapy Today for radiation
redhtz (for husband) 5/30/2017 Our journey begins....
akai 5/5/2017 The Gleason 9 Crew -- Part 2, continued.
Philco 5/2017 (no subject)
noggin2u2 4/2017 piggybacked on: ADT and SRT Journey
nyc lawyer 4/17/2017 1st post on another's thread "Decision has been made"
Bird8 4/2017 (for husband) Metastatic Prostate Cancer
jmc, 4/2017, posting for dad, New member, JMC, posting for father, Gleason 9, recent RP.
fqfqfq 2/2017 Should I complain to my urology doctor?
Sidekick 3/2017 New Member Newly Diagnosed
WifeofPie (for husband) 2/2/2017 Husband Diagnosed G9 2 days ago
Skypilot56 1/2017 Gleason 9 survival?
Hope45 1/2017 Just found out I have PC, with Gleason 9 - Nervous/Worried
Dogdays 1/2017 GS 9 and overwhelmed
75Tiger 12/19/2016 IMRT versus 3-D Conformal radiation
Naples 12/16 New member, Gleason 9 post-op, node positive, on ADT with RT to follow, wants advice
RealisticOptimist 11/2016 New member: Hi-ya
Annie88 (for husband) 11/2016 Chemo before RP? Anyone?
Dmc695 10/2016 (for father) Suggestions for next step?
Jantvet (for 60 yo father) 10/2016 Are these symtpoms/reactions normal? Gl9 Stage 4
RichardNY 10/2016 Gleason 5 +4 -- need advice
InThisTogether 10/2016 Gleason 9 first post here!
Kristvet86 (for father) 10/2016 G9 with multiple mets. PSA 1,7
Sallyyy (for husband) 10/2016 PSA over 6000 on diagnosis - looking for advice and hope
married to a 9 (for husband) 8/2016 husband G9 dx August 2016 questions
Gene Shue 6/2016 Welcome new member Gene Shue
MoodyBlue (for husband) 9/2016 Gleason 9 treatments--proton therapy, surgery and or ADT
Mews2much (wife Jacky for husband Steve) 8/30/2016
schoolpsych 8/2016 Yet another new Gleason 9 guy
joeven 7/2016 Advanced PC my trip so far
Tekton 5/2016 Can I join the club? crap
Easy Ace 5/2016 new to any forum need some one to help me sort all this out gl score 9
Renee12 2/2016 (for her father) High Gleason, Low PSA - not having surgery
Kathy77 12/2015 (for her father) [url=https://www.healingwell.com/community/post.aspx?f=35&r=r&m=3957967]Gleason 9
chrisp1 12/2015 (for husband) [url=http://www.healingwell.com/community/default.aspx?f=35&m=3646151]Looking for Guidance
4myhubby 12/2015 (for husband) [url=http://www.healingwell.com/community/default.aspx?f=35&m=3779095]Advanced prostate cancer stage 4 w bone mets psa 1200 age 55
kitty19 10/2015 [url=http://www.healingwell.com/community/default.aspx?f=35&m=3666034]New member kitty19
Whattheheck 9/2015 [url=http://www.healingwell.com/community/default.aspx?f=35&m=3182035&p=8]The Gleason 9 Crew -- Part 2, continued (page 8)
PNWcarol 9/2015 (for husband) [url=http://www.healingwell.com/community/default.aspx?f=35&m=3796934]Is anyone here with advanced PC? Stage IV-D2 (aka M1C)
jegan 9/2015 (for 65 yo family member)
Bob656 7/2015 [url=http://www.healingwell.com/community/default.aspx?f=35&m=3612772]Best length of Lupron Treatment for Advanced Cancer
jenora 7/2015 [url=http://www.healingwell.com/community/default.aspx?f=35&m=3722181]n protocol re; Trelstar, Casodex, Prolia
Whentheworldstops 7/2015 (for husband)
Bob656 6/2/15 [url=http://www.healingwell.com/community/default.aspx?f=35&m=3612772]Best length of Lupron Treatment for Advanced Cancer
Terryo 6/2015(?) [url=http://www.healingwell.com/community/default.aspx?f=35&m=3182035&p=5]Another newbee to this forum.. .sigh
angsty 5/2015 (for husband)
Larry E. 4/15/2015 [url=http://www.healingwell.com/community/default.aspx?f=35&m=3646135]Should go to MD Anderson now?
sixpacks 3/18/2015 [url=http://www.healingwell.com/community/default.aspx?f=35&m=3520791]time lapse between ebrt and HT
super max 3/2015 (upgrade to G9 from G6 DX in 8/13)
kathy77 3/2015 (for father)
tonka toy 12/12/2014 (for husband)
spouse21 12/2014 (for husband)
pzhope 11/2014 (for father)
PavelNovak (for father) 10/2014 [url=http://www.healingwell.com/community/default.aspx?f=35&m=3202500]Is my father's treatment correct? PC stage IV, PSA 700
SophieW 9/25/2014 (for husband)
organic farmer 9/2014
jannnett 8/2014 (for father) [url=http://www.healingwell.com/community/default.aspx?f=35&m=3520345]No sleep after 3rd shot of hormone therapy
cspivak 8/2014 (for husband)
jbart62 8/2014 (for husband)
MsGlad 4/14/14 (for father)
DanRF 4/2014 (for uncle)
*Hopefull G9 3/2014 (for husband)
*redheadskier 1/30/2014 (Lisa, for husband Frank)
*L.D. (was Paluxy Kid) 1/2014
genny7766 1/2014 (for husband Mike) [url=http://www.healingwell.com/community/post.aspx?f=35&r=r&m=3839774]Another Gleason 9 - with bone mets now
Jennyy 12/26/2013 (for father)
*French_Traveller 12/2013 (for husband)
*dotson 11/2013 (for father)
*Almost a 10 10/4/2013
Keebler 10/2013 (for husband)
Ferb40 8/2013 [url=http://www.healingwell.com/community/default.aspx?f=35&m=3595311&g=3634545#m3634545](not first post, but recent status)
*Montanan 8/2013 (approximate date) (for husband)
Fossil62 7/2013 (approximate date)
*NJ Jon 7/2013
Boreal Photography 5/2013 [url=http://www.healingwell.com/community/default.aspx?f=35&m=3182035&g=3813519#m3813519]Page 6 entry on G9 Crew thread, also [url=http://www.healingwell.com/community/default.aspx?f=35&m=3813543]By Way of an Introduction
Skooley 4/2013 (approximate date) (for father)
*Appleseed (Nick) 4/2013
RicktheRock 1/17/2013 [url=http://www.healingwell.com/community/default.aspx?f=35&m=3687249]CRT (Chemo Radiation Therapy)
fuunit 2013 (for father) [url=http://www.healingwell.com/community/profile.aspx?f=35&m=3649620&p=240462]docetaxel and carboplatin (Father RIP 2/24/2017)
*Nomar Lupron 4 Me 1/15/2013 [older user names: LupronJim, T1cN0M1b-in-FL] (RIP 4/6/2017)
Nick77 12/2012 (for father) [url=http://www.healingwell.com/community/default.aspx?f=35&m=3602566]PSA 519 ...CHEMO for the first time
*Littlenm 10/2012 (for husband) RIP:5/2014
*myoho (for husband) 7/3/2012
Anniesea (for husband) 6/2012 [url=http://www.healingwell.com/community/default.aspx?f=35&m=3742560]GL 9-diag 8/12 RAD-Lupron ~now 8/16-bone mets-NOW?
*Here we go 5/2012 (for husband)
wsbostiii 4/2012 (approx.)
BJs DIL (for father in law) DX:1/2012 RIP:9/13/2013
vet2 DX:12/09/2011 RIP:1/19/2013
Turner 2 9/2011
Searchmode 5/2011 (for husband)
Berdoo/Arkansas (dx date unclear, 2010?)
celebrate life 11/2010 (for husband Gary) RIP:7/29/2017
*Barry's Daughter (for father) 10/2010
mr bill 9/2010
*Jerry L. 11/2009
*Old Sailor 8/2009
*Ed C. (Old67) 12/30/2008
Lydialynn (for husband) fall 2006
*zufus 3/2002 RIP:7/13/2015
Post Edited By Moderator (PeterDisAbelard.) : 3/3/2018 6:26:50 AM (GMT-7)