The Gleason 9 Crew -- Part 2, continued.

This thread has been locked so the conversation can be shifted to the continuation thread:The Gleason 9 (and 10) Crew - Welcome and how ya doin'? (Part 3, continued thread)

This is a continuation thread of a long-running thread that was started here: Gleason 9 Crew - Welcome and how ya doin'?

That thread has been locked to prevent it from becoming too long for the forum software to handle. Please continue the conversations from that thread on this one.

PeterDA

In the original thread, Redwing57 said...


This thread is intended to be a gathering place for those facing a Gleason 9 diagnosis. This is a chapter no one wants to join, of a club that no one wants to join!

If you're just arriving here or newly diagnosed, please also start a thread of your own so that you'll get more attention from the forum members. Some people won't read past the first couple pages of a long-running thread like this one. Those with G9 cases are pretty motivated, though, and this thread is a little different, meant to collect information and experience unique to this group.

Originally, out of curiosity I put together a list of all Gleason 9 forum members I could find by going through the signature thread, and all of the responses on my own lengthy thread here on HW. A number of people have corresponded with me about that list, and it seemed it might be helpful to put it in its own thread.

This is intended to be a specialized thread for those in this situation to post their status, even their story, and keep them updated just by editing in this thread. The idea is a little like a simplified version of the yananow.org website, but focused just on members of this forum.

Of the most interest: How did you find out, how did you choose your treatment, and how are you doing? I'll edit this top post to keep the list current.

Sorry to see every single one here, but it's kind of comforting to know you're not alone. There aren't very many long-term 5+4 people, in fact only five diagnosed before 2010 (one no longer with us). I'm not sure what that all means, if anything.

The "roster" of the Gleason 9 Crew is in the fourth comment. I had originally put it here but that meant that Redwing couldn't continue to add to it... --PeterDA

Here are my stats:

Dx @ 55, 11/2012, PSA 14,
Gleason 7, All cores positive, hot spot on 2 adjacent ribs, T4
Lupron + Casodex started 11/2012

7/2013 Moved Medical Care to MD Anderson, Houston
New Cat Scan revealed resolution to bone mets
MDA Upgraded Gleason to 7's and 9's
New psa of .1
Continued on Lupron + Casodex

Da Vinci at MDA 9/2013
8 Week Post-Op psa of < 0.1
Post-Op Pathology - negative margins, negative LN, +SV, small area of "suspicious cells" outside margin

2 months IMRT at MDA started 1/2014 ended 2/2014
Post RT psa < 0.1

HT holiday from Lupron + Casodex commencing 5/2014

psa's at 6/2014, 7, 2014 and 8/2014 all <0.1

Aloha

Hawaii3654

Post Edited (Hawaii3654) : 9/12/2014 7:24:06 PM (GMT-6)

---------------------------------------------------------------------------------------------------
Here is the official roster of the Gleason 9 crew. I used my amazing moderator powers to move it to Redwing's comment so he can continue to help maintain it.
--------------------------------------------------------------------------------------------PeterDA
Peter, thanks for setting this up this continuation post. I'm pleased to maintain this roster, although it does pain me a bit every time we add another person. At least we're all here seeking and providing mutual support.

As a reminder, this roster, this "crew", this thread (and the prior one), 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.

(3/6/16 - I'm going to try adding a link to one's "intro" thread by the roster name. Maybe it will help us find each other's stories more easily).

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?



*************
Note - this roster is being updated on the third thread in this series, and as of August 13, 2017 the one here is not being updated. Please go to this new thread for the latest:
The Gleason 9 (and 10) Crew - Welcome and how ya doin'? (Part 3, continued thread)
*************

Gleason 10 Crew:
This risk group is almost identical to the G9 (especially the 5+4), so we'll include our G10 friends here:
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
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
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
34mopar 6/14/2017 Starting Hormone Therapy Today for radiation
jmc, 4/2017, posting for dad, New member, JMC, posting for father, Gleason 9, recent RP.
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)
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
tennis23 7/20/2016
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
4myhubby 12/2015 (for husband) Advanced prostate cancer stage 4 w bone mets psa 1200 age 55
Dodgey 12/2015
kitty19 10/2015 New member kitty19
sixpacks 10/2015
Whattheheck 9/2015 The Gleason 9 Crew -- Part 2, continued (page 8)
PNWcarol 9/2015 (for husband) 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 Best length of Lupron Treatment for Advanced Cancer
jenora 7/2015 n protocol re; Trelstar, Casodex, Prolia
Whentheworldstops 7/2015 (for husband)
Bob656 6/2/15 Best length of Lupron Treatment for Advanced Cancer
Terryo 6/2015(?) Another newbee to this forum.. .sigh
KenHayes 6/2015
HDHOG 5/2015
angsty 5/2015 (for husband)
Larry E. 4/15/2015 Should go to MD Anderson now?
sixpacks 3/18/2015 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 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
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) 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 (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 Page 6 entry on G9 Crew thread, also 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=https://www.healingwell.com/community/default.aspx?f=35&m=3687249]CRT (Chemo Radiation Therapy)
*nccajun 1/2013
fuunit 2013 (for father) [url=https://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=https://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=https://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
*Dave-Rockville,MD 8/2011
irishgrl11 6/2/11
Searchmode 5/2011 (for husband)
*FoxRun 5/2011
*houseboy 5/2011
*casper319 4/2011
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) : 8/13/2017 6:11:04 PM (GMT-6)

Got my latest undetectable last Thursday

Doc wants to start radiation

Hi all,
I'm a G-9 with a problem, I can't seem to find anyone with similar symptoms. Ive been on ADT with only two Casodex interventions. One for 2weeks at Dx and one at five years for 18 months, the rest of the time it's been Lupron only for 88 months now. I've been Dxed with mCRPC and I really don't know where I'm headed from here. My PSA has risen ever since (I forgot to add it above) I underwent Provenge during 9/13--10/13. My PSA was 4.7 at start of Provenge and now, 12 months later it's up to 67. I have had a CT and Bone scan every 3 months for a year now and no mets have shown up, just the elevated PSA. My MO has me enrolled in a Govt. Clinical trial but I have to have a met first. Any ideas guys? . . . . Q

Ed-Bar,
Thanks for the informative reply. My MO has me signed up for a govt trial that requires that I have an active met so they have something to measure, you know something to check the therapies efficacy. This sounds reasonable to me and I am in no pain and would actually feel downright normal except for the side effects of Lupron of which I have plenty. The trial is on a new combo of ADT2 and I'm going to call my MO to find out exactly what that combo is tomorrow. . . . Q

Hi all,
I haven't been here for awhile. I've read through this thread and felt I would give a quick update. When my May bone scan showed significant progression of my bone mets, I was placed on DES in addition to the monthly Lupron shots. My PSA went from

Hi all,
It's been awhile since I posted and thought I would give a quick update. My May bone scan showed significant progression of my bone mets. DES was added to my monthly Lupron shots. My PSA went from 9.26 to 6.26 to 4.16 to 5.50 to 4.35. Even so, my bone scan on the fifteenth of this month show new mets but the existing had how grown much.
I am quite frustrated with the lack of control of my cancer and have decided to change docs. I am considering asking for the starting of chemo with continuation of the ADT based on an article I read on MaleCare published on June 3, 2014. I feel I cannot just sit and wait for my doc to say we need to try something else. With my mets growing despite what I consider a low PSA frightens me. Yet I am also concerned that if I push to go to another treatment too soon, I will find myself going through the limited treatment options too soon.
The anxiety is wearing me down. I was diagnosed bi-polar years ago and take medication daily. Even so, I have found myself becoming depressed and the thought of going through the trial and error of finding a new treatment is depressing in itself.
I have to remind myself that all is as well as it can be. My worst symptoms to date is fatigue with occasional pain. I am still working full time from home, thanks to having a company who works with me concerning the fatigue and the need to rest in the middle of the day.

JC, I have no advice but I do feel for you. Thank you for posting, and maybe someone has some ideas. What a frustrating, unnerving situation! I too hope you find something that will give some control. This G9 stuff can sure be harsh...

Hello,

Have been lurking on this forum for a couple of months and wanted to relate my journey to date and join the crew. Started with blood in my urine after a DRE at my annual physical week of Christmas 2012. Was on a project and out of town so went to local Urologist for symptoms. He performed PSA test, Biopsy and Bladder examination. Results came back with 1 sample at Gleason 10 with a number at 7. See my signature for the details. Upon diagnosis took slides to Cleveland Clinic (home) and consulted with Urology department. Decided on open prostatectomy due to doctors recommendation on the ability to conduct a greater examination if the cancer had spread. Pre Op scans were negative both CT with dye and Bone scan.

Operated on 3/4/13 and results showed seminal vesicle invasion and resulting biopsy of harvested lymph nodes indicated 2 right nodes with metastatic prostatic adenocarcinoma. 6 weeks after surgery PSA was 0.15, in consultation with Oncologist went on Lupron and Casodex. Also consulted with Radiation Oncology and went through radiation therapy for 35 treatments. Radiation profile was modified by markers in my stomach indicating where lymph nodes were harvested, higher in the right side.

So far PSA has been less than .03, tested every 3 months when renewing Lupron shot. Still on Casodex and treatment plan calls for Lupron to end after 24 months when we will monitor PSA along with testosterone rise.

Currently and prior to surgery have taken 5000 units of Vitamin D along with a number of of other natural supplements and am modifying my diet per Dr. Meyers recommendations. Have read both Dr. Walsh book and Dr Meyers. Cannot wait to stop the Lupron and may consult with Dr. Meyers on treatment plan to remain in remission.

Throughout all this I have had wonderful support from my wife and family.

Look forward to any and all comments and questions. Want to help where I can and learn more as I journey with you all through the challenge before us.

Spike - you can go even higher with the vitamin D-3 if you want to.

/askdrmyers.wordpress.com/page/24/

Is High Dose Vitamin D Dangerous?
Posted October 13, 2010

Dr Myers advised that if you eat oatmeal in the morning, take your D-3 at night, since oatmeal makes D-3 useless.

Even though I live in the sunshine state, I take 10,000 IU vitamin D-3 with 100 Mcg vitamin K-2 and 1200 Mg Calcium (more on Provenge weekends and a few days before).

Have your serum D tested and calcium checked and adjust accordingly.

Date Reference 07/14 05/4 01/14 10/13
Calcium [8.4-10.5] 9.9 09.2 10.0 09.6
serum D [30-100] 53 50.5 46.4 43.5

LupronJim

Thanks for posting the link, Mr. Jim! It's important to keep a thread of good news running through this G9 crew, and I'm really happy to have another undetectable PSA.

It's sure a mixed bag, isn't it? We celebrate good results, and we share concern when things aren't going so well.

Jerry

And here's an update on my husband. He's sticking with ADT for now (and Xgeva), though chemo possibility is still there. PSA down to 10 a couple weeks ago, has another scheduled for tomorrow (which is why I'm nervously posting).

After some grief getting all the required extra tests done for a TAK-700 trial (trial is not quite local, we wanted tests done at our local hospital, so we did all the scheduling, then don't even mention how long precert took), he's into the trial.

But he's in the control arm (Lupron + Casodex ). Just our luck.

However, he's still feeling ok, though tired, so I'm not complaining really. He's been really good about exercising (to my way of thinking, though he thinks he's slacking off) and has not been talking about other SE besides fatigue.

In the spirit of trying to enjoy life, we are thinking about adopting another rescue dog (our last one died right when we got the bad news bone scan). Something nice to think about, anyway.

Carolyn