The Gleason 9 (and 10) Crew - Welcome and how ya doin'? (Part 3, continued thread)

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Redwing57
Veteran Member


Date Joined Apr 2013
Total Posts : 2501
   Posted 8/13/2017 6:45 PM (GMT -6)   
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:
Explorer54 12/2017 Newbie Here, Gleason 9+
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
*Spikem 1/8/12
Smokey6 7/2011
*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)
*restofmine 6/2014
*PSA3DOT7 9/2013 (or so)
Barb1 7/2013 (for husband) RIP: 3/10/2016 Gleason 9, T4,N3,M0- concerned about husband...
*yk 6/20/2013
*jetskifisher 5/2013
*Redwing57 4/16/2013 Well fudge, new member, Gleason 9 (5+4)
*Dyank 4/2013 (for husband)
*adjust 2/7/13 (RIP:9/2015)
*Gunner34 1/2013
*Michael_T 9/6/2012
Hotflash 7/2012 New Gleason 9 member. DX in July 2012. Gleason 9 (5+4), mets to iliac, L1, L2, L3 & L4
*greetingz 7/2012
infohound2 5/2012 (for husband)
*wingman63 4/2012
*DebbieMH 4/2012 (for husband)
*Upstate Guy 3/6/12
A Morton 1/2012 The Gleason 9 Crew -- Part 2, continued.
*tooyoung4this 8/15/2011
winmui 7/2011 (for dad)
*Startech 5/2011
bertb 3/2011 (possibly 5+5)
LowRoad 1/2011 New kind of PET imaging and treatment for men with mets
*JCRush 11/10/2010
Resource 8/2010
*devastated1 2/15/2010
*Southern Comfort 2010
*Oncas 1/2009
*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)
quincy17 2007
Stxdave 1st DX 7/1999, RIP: 2/21/2011

4+5 Group (entries without the type 4 or 5 detail also go here):
Nickname, Diagnosis Date, Link to introductory post
Sid007 (for father) 9/2018 (joined date) Prostate cancer - Gleason score 9(4+5), bone metastasis
MG0351 7/23/2018 New to the big "C" club
formerMarine 2018 comment on Ted M's first post
Ted M 5/26/2018 Gleason 9 is surgery an option?
motpnh (for husband) 5/2018 (No Subject)
Stage-IV 4/2018 Stage IV first day Questions
HappyRick 5/2018 New Guy
CAdogsRus 2/2018 Received go ahead for HT + IMRT + LDR BT
AbsAZ ?/2018 Gleason 9 - Doctor Recommendations for AZ and Southwest U.S.
Balladeer 1/2018 New Member-Newly Diagnosed (2nd opinion said 4+4=8)
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."
APL1881 (for husband) 9/2017 The Gleason 9 (and 10) Crew - Welcome and how ya doin'? (Part 3, continued thread)
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....
GoBucks 5/18/17 Bad news and good news for this newbie G9
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 [url=http://www.healingwell.com/community/default.aspx?f=35&m=3783232]Gleason 5 +4 -- need advice
InThisTogether 10/2016 [url=http://www.healingwell.com/community/default.aspx?f=35&m=3781234]Gleason 9 first post here!
Kristvet86 (for father) 10/2016 [url=http://www.healingwell.com/community/default.aspx?f=35&m=3734475]G9 with multiple mets. PSA 1,7
Sallyyy (for husband) 10/2016 [url=http://www.healingwell.com/community/default.aspx?f=35&m=3722752]PSA over 6000 on diagnosis - looking for advice and hope
married to a 9 (for husband) 8/2016 [url=http://www.healingwell.com/community/default.aspx?f=35&m=3764796]husband G9 dx August 2016 questions
Gene Shue 6/2016 [url=http://www.healingwell.com/community/default.aspx?f=35&m=3710722]Welcome new member Gene Shue
MoodyBlue (for husband) 9/2016 [url=http://www.healingwell.com/community/default.aspx?f=35&m=3710137&p=1]Gleason 9 treatments--proton therapy, surgery and or ADT
Mews2much (wife Jacky for husband Steve) 8/30/2016
schoolpsych 8/2016 [url=http://www.healingwell.com/community/default.aspx?f=35&m=3690509]Yet another new Gleason 9 guy
joeven 7/2016 [url=http://www.healingwell.com/community/default.aspx?f=35&m=3813462]Advanced PC my trip so far
tennis23 7/20/2016
Tekton 5/2016 [url=http://www.healingwell.com/community/default.aspx?f=35&m=3701961&p=1]Can I join the club? crap sad
Easy Ace 5/2016 [url=http://www.healingwell.com/community/default.aspx?f=35&m=3644580&p=1]new to any forum need some one to help me sort all this out gl score 9
Renee12 2/2016 (for her father) [url=http://www.healingwell.com/community/default.aspx?f=35&m=3599940]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
Dodgey 12/2015
kitty19 10/2015 [url=http://www.healingwell.com/community/default.aspx?f=35&m=3666034]New member kitty19
sixpacks 10/2015
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)
CaliJR 9/2015
jegan 9/2015 (for 65 yo family member)
ntzguy 8/2015
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
KenHayes 6/2015
HDHOG 5/2015
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)
Trust7 12/2014
Traveling_guy 11/17/2014
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
NEPOL 10/2014
SophieW 9/25/2014 (for husband)
organic farmer 9/2014
mgc55 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
RandyJoe 8/2014
cspivak 8/2014 (for husband)
jbart62 8/2014 (for husband)
melvin5888 8/18/2014
Squidly24 8/7/14
KenHayes 6/2014
Cosby 4/2014
*ed-bar 3/2014
*Mark0 3/2014
Flyboy316 4/2014
MsGlad 4/14/14 (for father)
Lionhawk 4/2014
DanRF 4/2014 (for uncle)
*Hopefull G9 3/2014 (for husband)
*shaba.doug 3/2014
Gbooth 2/2014
*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)
BTom 11/2013
*BillyBob@388 11/20/2013
*dotson 11/2013 (for father)
*Almost a 10 10/4/2013
Keebler 10/2013 (for husband)
*alephnull 10/2013
hondapapa 9/2013
jcjames 9/2013
Ferb40 8/2013 [url=http://www.healingwell.com/community/default.aspx?f=35&m=3595311&g=3634545#m3634545](not first post, but recent status)
patiently1 8/2013
*Montanan 8/2013 (approximate date) (for husband)
Fossil62 7/2013 (approximate date)
*break60 7/2013
*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
*FMRMONTAIGNE 5/2013
DonJ 4/2013
Skooley 4/2013 (approximate date) (for father)
*CacDaddy 4/2013
*jim_nc1 4/2013
*Appleseed (Nick) 4/2013
musicman21 3/2013
RicktheRock 1/17/2013 [url=http://www.healingwell.com/community/default.aspx?f=35&m=3687249]CRT (Chemo Radiation Therapy)
*nccajun 1/2013
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
Newgrange 12/2012
Carlster 12/2012
*Hawaii3654 11/2012
*pmikey 11/2012
*grandpaof4 10/2012
*Littlenm 10/2012 (for husband) RIP:5/2014
*pepsiguy 8/2012
*myoho (for husband) 7/3/2012
*SteelGuy 7/2/2012
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?
PeterDisAbleard 6/14/2012
*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
*wedge60 11/2011
*yaamba 10/2011
Turner 2 9/2011
*Explorer08 9/2011
john4803 8/2011
*Dave-Rockville,MD 8/2011
irishgrl11 6/2/11
Searchmode 5/2011 (for husband)
*FoxRun 5/2011
*houseboy 5/2011
*casper319 4/2011
Faustman 1/2011
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
*Fairwind 8/2010
*RangerTug 7/2010
Kbota 5/2010
*Jerry L. 11/2009
*Old Sailor 8/2009
*Percy-M2354 6/2009
goodlife 1Q/2009
*Ed C. (Old67) 12/30/2008
*Piano 3/7/2008
Kcragman 3/2008
*Northfoot 1/4/2008
Anniea 3/6/2007
Lydialynn (for husband) fall 2006
*Duke68 10/2006
cfree2004 5/2004
*Putt 4/2004
*zufus 3/2002 RIP:7/13/2015

Post Edited (Redwing57) : 9/7/2018 8:09:18 AM (GMT-6)


InTheShop
Veteran Member


Date Joined Jan 2012
Total Posts : 9398
   Posted 8/14/2017 11:03 AM (GMT -6)   
I am not a G9, but just wanted to thank Redwing for all his work in keeping this thread going and supporting our brothers in the high risk group.

Great work!

Andrew
I'll be in the shop.
Age 57, 52 at DX
PSA:
4.2 10/11, 1.9 6/12, 1.2 12/12, 1.0 5/13, .6 11/13,
.7 5/14, .5 10/14, .5 4/15, .3 10/15, .3 4/16, .4 10/16, .4 5/17
G 3+4
Stage T1C
2 out of 14 cores positive
Treatment IGRT - 2/2012
My latest blog post

Faustmann
Veteran Member


Date Joined Nov 2014
Total Posts : 500
   Posted 8/14/2017 4:09 PM (GMT -6)   
Please add me to the G9 roster.
Age 66
Dx 1/2011 at age 60, PSA 6.4 at Dx, G9, LARP 2/11
PSA 1.1 4/11 , Lupron
7 wks EBRT ending 6/11
PSA 0 from 6/11 to 1/13
1/13 End Lupron
6/13 PSA 0.07, 9/13 PSA 2.0
Bone mets L2, ribs, pelvic?
Back on Lupron
1/14 PSA 1.0, 4/14 - 3.9, 8/14 - 9.66
8/18/14 Zytiga+Pred ,Xgeva, Lupron
1/15 PSA 4.2, 4/15 3.88
2/16 5.47 3/16 2.11
Xtandi 3/10/16
4/1/16 0.7
nadir ? 0.46
latest 0.84
Provenge 9/12/16

Redwing57
Veteran Member


Date Joined Apr 2013
Total Posts : 2501
   Posted 8/14/2017 8:41 PM (GMT -6)   
You got it, Faustmann! You're one of the earliest entries there, and you've had just about everything I've heard of. Hoping you continue to do well for a long time.
55@Dx 4/16/13
Bx: 6/12 pos, G9=5+4 (80%, 60%), 4+5 (2@100%, 80%, 10%), PNI+
cT3a (3T mpMRI: Bilateral EPE, NVB+, SV-, LN-)

Pre:
Date PSA fPSA
9/12 4.1 15%
3/13 5.2 12% PCA3=31

Tx:
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

Post Dx:
PSA <0.1 : 8/13 - 5/16;
rising - 0.2-8/16, 0.5-12/16, 0.7-3/17, 0.8-5/17, 0.8-7/17

chrisp1
Regular Member


Date Joined Mar 2016
Total Posts : 52
   Posted 8/15/2017 10:53 AM (GMT -6)   
Redwing,
Please add my husband, too. Dx 12/15 Gl 4+5
Last PSA 7/17 = <.1

We met with his MO at Hopkins last month to go over future treatment as my husband has the PALB2 gene. Dr. A. explained that the typical treatments for recurrence do not work as well for this gene, which somehow works alongside the BRCA2 gene from what the geneticist we also met with explained. They don't know much about the part this gene plays in PCa yet.

What they have found that works well on this mutation, and others related to it, is Olaparib (Lynparza) but it is not yet approved for PCa. They have a phase 2 clinical trial going now, but he is not eligible as ADT is still working, thankfully.

I did ask why my husband wasn't put on Taxotere per CHAARTED and STAMPEDE trials pre-genetic testing when mets were discovered. Apparently, in those studies men with any number and type of mets were included. In the past two years they have looked at results by category and one of the results was that the treatment was ineffective for men with four mets or fewer. I thought that was interesting as I hadn't come across it anywhere in my "vast" research and it was nice to have an explanation.

Chris
DX 66 10/15 PSA 7.8 T1C
Gleason 9 (4+5)
Bone/CT scans NED; PNI one side
RRP 2/16/16 JHU pt3a EPE+, PNI +, SVI- 54 LN-, margins-, LVI ?
5/16 PSA 0.86 6/16 1.39 6/24/16 Bone scan Mets 1 rib 1 L3 spine
7/13/16 PET/PSMA Trial - 3 addl micromets spine skull rib
7//16 Color Doppler 2 pelvic LN
8-9/16 Trelstar Casodex RT SBRT
1/17 PSA <.1 Lupron
3/17 MO JHU – no chemo for now
4/17 PSA <.1

Post Edited (chrisp1) : 8/15/2017 9:57:27 AM (GMT-6)


Redwing57
Veteran Member


Date Joined Apr 2013
Total Posts : 2501
   Posted 8/15/2017 3:05 PM (GMT -6)   
Ok, chrisp1 (crispy one?), you and your husband are on the list. I found what I think is your first post back in June 2016.

The gene comment is interesting. I looked up my DNA thing (did it by ancestry.com), and find there are a lot of SNPs associated with that PALB2 gene. Do you know any specific rs numbers for it?

I think genetics will be a hugely productive area of research for cancers in general. We seem to be at only the beginning stages of knowledge about it. I went to a presentation by a Genetic Counselor - that's actually a real job now!
55@Dx 4/16/13
Bx: 6/12 pos, G9=5+4 (80%, 60%), 4+5 (2@100%, 80%, 10%), PNI+
cT3a (3T mpMRI: Bilateral EPE, NVB+, SV-, LN-)

Pre:
Date PSA fPSA
9/12 4.1 15%
3/13 5.2 12% PCA3=31

Tx:
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

Post Dx:
PSA <0.1 : 8/13 - 5/16;
rising - 0.2-8/16, 0.5-12/16, 0.7-3/17, 0.8-5/17, 0.8-7/17

chrisp1
Regular Member


Date Joined Mar 2016
Total Posts : 52
   Posted 8/15/2017 6:29 PM (GMT -6)   
Redwing,
I guess you could say I'm a crispy one! I've been burned a few times, as have most of us, I'd guess. Every time I tried to use Chrisp as a user name it was taken but chrisp1 seems to work well.

My eyes glaze over and my thought wander when you start getting too scientific. I couldn't even guess at how single nucleotide polymorphism impacts gene performance or the research assn number. I had to google them to have a clue what you were asking. I still don't have a clue, but that's okay. Now I have something else to research and try to understand.

My husband was sent the Color genetics test that determined the PALB2 mutation. At Dr. A.'s recommendation we drove an extra morning during rush hour traffic from DC to Baltimore to meet with a geneticist and an MO involved in genetic research. It wasn't overly informative. The PALB2 gene is mainly associated with high risk of breast cancer, as well as ovarian and possibly pancreatic cancers. I wonder if it is involved with my brother-in-law's recent kidney cancer dx. They still don't know much how it affects PCa.

In any case, the main focus seemed to be to persuade us to get my 91 year old mother-in-law to take a spit test to prove the gene came through her side of the family. Theoretically, the gene could have come from my husband's father since we get half of our genes from each parent. And "prostate cancer is really so common in men" that the fact my MIL's father, grandfather, one brother and other male relatives died of it, could be just a coincidence. Her other brother also had it but got caught early. My husband, at 66 at dx, is the youngest so far to have it. He is the oldest grandchild so his uncles' sons may still be too young to have it show up. Most were at least 70 and closer to 80 upon dx.

Additionally, my husband's father's side is male dominated with multiple brothers and one sister in most generations, so they can't know for sure if breast cancer would have shown up. My husband pointed out there is no history of breast cancer on either side of his family, and absolutely no history of PCa in any of the males on his father's side. It would seem, if PCa is so common, that at least one of the males through the three generations we could trace would have had it somewhere along the line.

They also stressed our son and daughter should be tested but I think both have decided not to at this point. Despite the GINA law, they each have concerns. Both are being closely monitored anyway due to my history of OVCa and my husband's PCa. They have tightened monitoring on our daughter even more since the PCa dx.

Thanks for adding us. If I ever figure out the SNP thing, I'll let you know.
Chris
DX 66 10/15 PSA 7.8 T1C
Gleason 9 (4+5)
Bone/CT scans NED; PNI one side
RRP 2/16/16 JHU pt3a EPE+, PNI +, SVI- 54 LN-, margins-, LVI ?
5/16 PSA 0.86 6/16 1.39 6/24/16 Bone scan Mets 1 rib 1 L3 spine
7/13/16 PET/PSMA Trial - 3 addl micromets spine skull rib
7//16 Color Doppler 2 pelvic LN
8-9/16 Trelstar Casodex RT SBRT
1/17 PSA <.1 Lupron
3/17 MO JHU – no chemo for now
4/17 PSA <.1

cspivak
Regular Member


Date Joined Aug 2014
Total Posts : 207
   Posted 8/15/2017 6:40 PM (GMT -6)   
Redwing,

Try snpedia. (I did not have much luck, but then I was looking for brca1/2 - which at least at the time was claimed by a company...)
Dx 8/14, age 58, PSA 29, G9 (4+5), 11/12 cores, 3 bone mets
Lupron started 9/14, Xgeva 10/14, stop Xgeva 12/14
10/14 PSA 2.0, 12/14 1.1, 6/15 6.87, 6/15 Provenge,9/15 0.8
9/15 osteonecrosis, 6 wk iv antibiotics
1/16 PSA 4.8, 3/16 2, 2/16 spot RT hip
10/16 on Xtandi, 12/16 IMRT
5/17 PSA 8.6, 6/17 PSA 13, 6/17 lymph node biopsy MSI-H, off Xtandi
6/17 Keytruda(pembrolizumab), 7/17 PSA undetectable

Bird8
Regular Member


Date Joined Apr 2017
Total Posts : 26
   Posted 8/15/2017 10:13 PM (GMT -6)   
Redwing,

I'm not sure where my husband would fall on this list...maybe G10? He never had biopsy of prostate, Dx'd via surgical biopsy of lymph node from his neck. I would like to be added, if possible, we appreciate the support and feedback given by the amazing warriors and caregivers here in this forum.

Nikki
DH 44 dx 04/2017
PSA:718 extensive mets bones and nodes
04/2017 Casodex, Lupron
05/2017 Docetaxel, Prolia, Neulasta
PSA: 4/21/17-718, 5/18/17-86.59, 5/26/17-19.53, 6/19/17-2.71, 7/6/17-1.16, 7/17/17-1.68, 7/28/17-.78

Redwing57
Veteran Member


Date Joined Apr 2013
Total Posts : 2501
   Posted 8/16/2017 2:15 PM (GMT -6)   
Sorry to hear of the tough situation with your husband, Bird8. Being metastatic already when diagnosed does limit the options unfortunately. There are still a variety of treatments, and I'll refer you to our forum's perhaps brightest beacon of hope, Todd1963. He was widely metastatic at diagnosis over 10 years ago, and has an undetectable PSA today! There is great hope.

I'll add you to the G9 4+5 group, though without a biopsy we're really guessing. It doesn't matter a whole lot, since that G score is largely meant to assess how likely a given case may be to recur. As one already metastatic, that recurrence idea changes its meaning quite a bit. I think Todd was a Gleason 7, so just the presence of metastasis doesn't really indicate a G score.
55@Dx 4/16/13
Bx: 6/12 pos, G9=5+4 (80%, 60%), 4+5 (2@100%, 80%, 10%), PNI+
cT3a (3T mpMRI: Bilateral EPE, NVB+, SV-, LN-)

Pre:
Date PSA fPSA
9/12 4.1 15%
3/13 5.2 12% PCA3=31

Tx:
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

Post Dx:
PSA <0.1 : 8/13 - 5/16;
rising - 0.2-8/16, 0.5-12/16, 0.7-3/17, 0.8-5/17, 0.8-7/17

Bird8
Regular Member


Date Joined Apr 2017
Total Posts : 26
   Posted 8/16/2017 2:52 PM (GMT -6)   
Thank you Redwing!
DH 44 dx 04/2017
PSA:718 extensive mets bones and nodes
04/2017 Casodex, Lupron
05/2017 Docetaxel, Prolia, Neulasta
PSA: 4/21/17-718, 5/18/17-86.59, 5/26/17-19.53, 6/19/17-2.71, 7/6/17-1.16, 7/17/17-1.68, 7/28/17-.78

Dogdays
Regular Member


Date Joined Jan 2017
Total Posts : 200
   Posted 8/23/2017 6:27 AM (GMT -6)   
Just an update. Finally things have moved along and I'm hoping it all works. Had the seeds planted, had the simulation done for radiation and I've started SBRT. 5 days, 5 treatments. It'll be done by Friday. I have appointments scheduled with the RO and MO in early October for blood draw and PSA check and another one of those wonderful shots. I'll still have another year at least of ADT. Fingers crossed.
Always forward..
Age at Dx. 63
PSA 1/08 1.4, 12/16 12.17, 4/17 3.8, 7/17 1.05
GS 9 (4+5)
CT Scan and bone scan 1/17 both negative
2/2/17 prostate MRI.
2/27/17 pelvic bone biopsy done. No mets
3/7/17 Started HT. Degarelix, 4/17 lupron (1-2 years)
7/7/17 Brachy (Zelefsky MSK) + fiducial markers
8/21/17 scheduled for SHARP (SBRT) at MSK

BillyBob@388
Veteran Member


Date Joined Mar 2014
Total Posts : 3239
   Posted 8/23/2017 10:48 AM (GMT -6)   
Hello fellow high risk folks and/or their significant others! No new news, just checking in to say I'm just hanging in there awaiting my 9/26 test to see if I have ticked up some more or not. Other than that, no big changes, still hoping to put off further treatment as long as possible- actually forever would be nice. So far, as a G9, SV+, focal margin +, surgery only(I think that last- surgery ONLY- is somewhat unusual for my category, but not sure), have done about as good as I could have ever hoped for. When I got my path results I was sort of expecting a treatment suggestion within a few months, or for sure a year as I progressed, but so far(3.5 yrs) so good. I wish the same for all of us! So hang in there Brothers!
PSA 10.9 ~112013
Bx on 112013 at age ~65yrs, with 5 of 12 pos with one G9(5+4), 1 PNI, T2B.
RALP with lymph nodes at Vanderbilt 021914. (nodes clear, SV+, G9 down graded to 4+5, cut wide, but 1 tiny foci right at the edge of margin ) Pros. 106.7 gms!
At 15 months, not wearing a pad most days, mostly dry
PSA <.01 on 6/14 and all until 9/15 = .01, still .01 9/16, .02 on 3/17,6/17

BillyBob@388
Veteran Member


Date Joined Mar 2014
Total Posts : 3239
   Posted 8/23/2017 10:52 AM (GMT -6)   
Dogdays said...
Just an update. Finally things have moved along and I'm hoping it all works. Had the seeds planted, had the simulation done for radiation and I've started SBRT. 5 days, 5 treatments. It'll be done by Friday. I have appointments scheduled with the RO and MO in early October for blood draw and PSA check and another one of those wonderful shots. I'll still have another year at least of ADT. Fingers crossed.
Always forward..


Kill those PCa cells, Dogdays, every last one of them! Better yet may they all commit mass suicide! Fingers crossed with you, Bro!

Dogdays
Regular Member


Date Joined Jan 2017
Total Posts : 200
   Posted 8/23/2017 4:14 PM (GMT -6)   
Like you said BillyBob, mass suicide of those buggers would be great for all of us. Hoping your 9/26 test gets you that < back. Keeping them crossed for you too.

Update::::SBRT is finished. Now I wait on the new numbers in October. in the meantime....i'm gonna kick back and relax for a bit
Age at Dx. 63
PSA 1/08 1.4, 12/16 12.17, 4/17 3.8, 7/17 1.05
GS 9 (4+5)
CT Scan and bone scan 1/17 both negative
2/2/17 prostate MRI.
2/27/17 pelvic bone biopsy done. No mets
3/7/17 Started HT. Degarelix, 4/17 lupron (1-2 years)
7/7/17 Brachy (Zelefsky MSK)
8/25/17 SHARP (SBRT) finished at MSK

Post Edited (Dogdays) : 8/25/2017 2:38:26 PM (GMT-6)


jannnett
Regular Member


Date Joined Jan 2015
Total Posts : 125
   Posted 9/8/2017 3:24 PM (GMT -6)   
PSA is continuously rising and has reached 27. Patient is asymptomatic with good health. Doctor advised for bone scan and advised if there are bony mets at some particular site radiation therapy will be given and will start some estrogen treatment. At high PSA 27 i have no idea of how distant disease might have spread.Very depressed sad
Diagnosed prostate cancer 2014
Bone scan clear
Initial PSA 8
Radical prostactomy august 2014
PSA after 3 months 5.0
Bone scan showed one met in rib and one at lower back.
Started hormone therapy zolodox and casodex january 2015
PSA jan 2016 0.4ng/ml
stopped casodex
Bone scan showed lesion at sacral ala and lower rib
PSA april 2016 4.5
started taxotere
PSA after 3rd cycle 1.5
PSA after 6th cycle 0.6
PSA after 21 days of 8th cycle 0.4
After one month PSA 2.8
Started Abritrone acetate
PSA after 3 months 5.9
Zolodox changed to Firmagon
PSA after 3 months 15
started Antiandrogen Cyprotene acetate
PSA after 15days 18
PSA after one month (07/09/2017) 27

Redwing57
Veteran Member


Date Joined Apr 2013
Total Posts : 2501
   Posted 9/8/2017 7:38 PM (GMT -6)   
Hey jannnett - you mentioned being advised for him to get a bone scan. Do you know what type they plan to do?
55@Dx 4/16/13
Bx: 6/12 pos, G9=5+4 (80%, 60%), 4+5 (2@100%, 80%, 10%), PNI+
cT3a (3T mpMRI: Bilateral EPE, NVB+, SV-, LN-)

Pre:
Date PSA fPSA
9/12 4.1 15%
3/13 5.2 12% PCA3=31

Tx:
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;
steadying? - 0.2-8/16, 0.5-12/16, 0.7-3/17, 0.8-5/17, 0.8-7/17

BillyBob@388
Veteran Member


Date Joined Mar 2014
Total Posts : 3239
   Posted 9/9/2017 11:02 AM (GMT -6)   
jannnett said...
PSA is continuously rising and has reached 27. Patient is asymptomatic with good health. Doctor advised for bone scan and advised if there are bony mets at some particular site radiation therapy will be given and will start some estrogen treatment. At high PSA 27 i have no idea of how distant disease might have spread.Very depressed sad
Diagnosed prostate cancer 2014
Bone scan clear
Initial PSA 8
Radical prostactomy august 2014
PSA after 3 months 5.0
Bone scan showed one met in rib and one at lower back.
Started hormone therapy zolodox and casodex january 2015
PSA jan 2016 0.4ng/ml
stopped casodex
Bone scan showed lesion at sacral ala and lower rib
PSA april 2016 4.5
started taxotere
PSA after 3rd cycle 1.5
PSA after 6th cycle 0.6
PSA after 21 days of 8th cycle 0.4
After one month PSA 2.8
Started Abritrone acetate
PSA after 3 months 5.9
Zolodox changed to Firmagon
PSA after 3 months 15
started Antiandrogen Cyprotene acetate
PSA after 15days 18
PSA after one month (07/09/2017) 27


Janet,
So sorry to hear of your struggle, and I pray that his treatment will lead to better results!
PSA 10.9 ~112013
Bx on 112013 at age ~65yrs, with 5 of 12 pos with one G9(5+4), 1 PNI, T2B.
RALP with lymph nodes at Vanderbilt 021914. (nodes clear, SV+, G9 down graded to 4+5, cut wide, but 1 tiny foci right at the edge of margin ) Pros. 106.7 gms!
At 15 months, not wearing a pad most days, mostly dry
PSA <.01 on 6/14 and all until 9/15 = .01, still .01 9/16, .02 on 3/17,6/17

jannnett
Regular Member


Date Joined Jan 2015
Total Posts : 125
   Posted 9/17/2017 12:25 PM (GMT -6)   
Bone scan showed bone met on illeo sacral joint anteriorly as well as posteriorly.it was previous lesion but it has occupied more area. Radiotherapy scheduled next week , but radio oncologist said its only pallative care, HonVan (fosfestrol) started... sad
Diagnosed prostate cancer 2014
Bone scan clear
Initial PSA 8
Radical prostactomy august 2014
PSA after 3 months 5.0
Bone scan showed one met in rib and one at lower back.
Started hormone therapy zolodox and casodex january 2015
PSA jan 2016 0.4ng/ml
stopped casodex
Bone scan showed lesion at sacral ala and lower rib
PSA april 2016 4.5
started taxotere
PSA after 3rd cycle 1.5
PSA after 6th cycle 0.6
PSA after 21 days of 8th cycle 0.4
After one month PSA 2.8
Started Abritrone acetate
PSA after 3 months 5.9
Zolodox changed to Firmagon
PSA after 3 months 15
started Antiandrogen Cyprotene acetate
PSA after 15days 18
PSA after one month (07/09/2017) 27

Redwing57
Veteran Member


Date Joined Apr 2013
Total Posts : 2501
   Posted 9/18/2017 6:20 AM (GMT -6)   
Thanks for the update, jannnett. Guys here have had good results from "zapping" bone mets like that to reduce any pain or symptoms they may be creating.

The doctor saying, "...it's only palliative..." can sound worrisome or defeatist, but it's not necessarily so.

"Palliative care" is meant to reduce symptoms, keep one comfortable, but it's not intended to be curative. Once prostate cancer has gone metastatic to the bones it's generally no longer considered curable so almost anything done is a form of palliative care. Hormonal treatments and so on can slow it down overall, often for a very long time, with the intent of slowing development of further mets. But radiating specific bone metastases is generally done as a palliative measure.

There is discussion about the effectiveness of treating isolated metastases when the metastatic state is first detected. So, if around 4 or less metastases are found, it's considered "oligometastatic", and some studies indicate treating those first mets may slow the disease. Others say that once the mets appear that it signals a changed capability of the disease, and taking out the first few observable mets won't matter in the overall course of the disease from that point. I tend to favor the latter, but I don't think it's "settled science" yet.

This is only a supposition, but perhaps the doctor was just saying that the radiation was not meant to be curative, but to stop a particular metastasis from causing problems.
55@Dx 4/16/13
Bx: 6/12 pos, G9=5+4 (80%, 60%), 4+5 (2@100%, 80%, 10%), PNI+
cT3a (3T mpMRI: Bilateral EPE, NVB+, SV-, LN-)

Pre:
Date PSA fPSA
9/12 4.1 15%
3/13 5.2 12% PCA3=31

Tx:
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;
steadying? - 0.2-8/16, 0.5-12/16, 0.7-3/17, 0.8-5/17, 0.8-7/17

prostate begone
Regular Member


Date Joined Sep 2017
Total Posts : 45
   Posted 9/24/2017 2:01 PM (GMT -6)   
You can add me to the Gleason 9 gang (4+5).
62 yrs
PSA: 2/4/15: 3.5;
1/21/16: 3.8
2/13/17: 5.1
3/27/17: 5.45
3/27/17: 5.5
4/17/17: 2 of 16 pos., 15 and 4 percent. GS 8.
Bone Scan clear.
Robotic RP May 24, 2017, NYU Hospital, Samir Taneja M.D.
Margins clear, SV and LN negative, Focal EPE, GS 4+5
Prostate 44.6 grams, tumor 5% of prostate
1 pad a day after about 3 weeks. ED near total.
7/26/17 PSA <.01
9/7/17 .01

Redwing57
Veteran Member


Date Joined Apr 2013
Total Posts : 2501
   Posted 9/24/2017 2:18 PM (GMT -6)   
Hey nyc lawyer - You're on the roster. Welcome, and as usual we're glad you found us but sorry you need to be here. Your G9 case was a surprise on pathology, and probably a bit of a shock. We have some others here who had that happen too. It's not common, but it does happen.

Now the hard, slow, patience-testing follow up. Your occasional PSA tests will let you watch for trends. Try not to obsess about it, but just watch it. It's a marathon run at a snail's pace!
55@Dx 4/16/13
Bx: 6/12 pos, G9=5+4 (80%, 60%), 4+5 (2@100%, 80%, 10%), PNI+
cT3a (3T mpMRI: Bilateral EPE, NVB+, SV-, LN-)

Pre:
Date PSA fPSA
9/12 4.1 15%
3/13 5.2 12% PCA3=31

Tx:
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;
steadying? - 0.2-8/16, 0.5-12/16, 0.7-3/17, 0.8-5/17, 0.8-7/17

Faustmann
Veteran Member


Date Joined Nov 2014
Total Posts : 500
   Posted 9/28/2017 1:57 PM (GMT -6)   
I decided to put my G9 update in this thread. My PSA is increasing at an increased rate. From 1.0 twelve weeks ago to 1.25 four weeks ago to 1.60 . I have been on Zytiga, then Xtandi for a combined 37 months. My onco says chemo is next but I intend to check with MDA to see if they have something that would benefit me. My last trip there was in May 2014. My last scans were in the summer of 2014. No pain or symptoms, just the usual SE's from six years of ADT. Oh, onco did change my xgeva injection from 4 weeks to 8 weeks.
October marks 7 years since my PSA red flag. Keep fighting friends!
Age 66
Dx 1/2011 at age 60, PSA 6.4 at Dx, G9, LARP 2/11
PSA 1.1 4/11 , Lupron
7 wks EBRT ending 6/11
PSA 0 from 6/11 to 1/13
1/13 End Lupron
6/13 PSA 0.07, 9/13 PSA 2.0
Bone mets L2, ribs, pelvic?
Back on Lupron
1/14 PSA 1.0, 4/14 - 3.9, 8/14 - 9.66
8/18/14 Zytiga+Pred ,Xgeva, Lupron
1/15 PSA 4.2, 4/15 3.88
2/16 5.47 3/16 2.11
Xtandi 3/10/16
4/1/16 0.7
nadir ? 0.46
latest 1.60
Provenge 9/12/16

Larry E
Regular Member


Date Joined May 2016
Total Posts : 124
   Posted 9/28/2017 7:59 PM (GMT -6)   
Faustmann - hope MDA will have many new ideas for you, I was there a year ago for a work up and treatment. There way of thinking and the treatments were totally different than I was offered in Tulsa. Keep me informed of what they have for you.
My PSA is trending up, if it gets above 2 they want me back down there for more treatment.
Larry E
Dx 62yrs 2015 Tulsa
G-9 (4+5), 80% PSA 203
Distant bones mets.
5/15 Fermagon initial ADT, Xgeva
7/15 Taxotere
8/16 Progression of bone mets PSA constant
Lung nodes 10/16
12/5/16 Provenge
Current Eligard /6mo, Vit D3
PSA Aug 1.3, July 1.3, June 1.1, May 1.0

carattop
New Member


Date Joined Oct 2017
Total Posts : 18
   Posted 10/15/2017 4:40 PM (GMT -6)   
Guess I am the most recent to join this club ... my husband, age 49, was diagnosed on 10/3/17 with PC, G9 (5+4), PSA 2.5, T4 N1 M0.

He started HT this week (Casodex), will get his first Lupron injection in two weeks. Next up is likely chemo (Taxotere) and possibly radiation. We are scared but ready to fight. Appreciate all of the hopeful stories on this thread.

Never wanted to be here, but thankful for a place to exchange information and encouragement.
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