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 10/15/2017 4:58 PM (GMT -6)   
Hi carattop. Sorry to hear of your husband's diagnosis, but glad you found us.

I've added you to the roster under the 5+4 group. There aren't a lot of us around, and it is a serious diagnosis. If you've been googling much, you may have become rather freaked out. Keep in mind a lot of the info you find on the internet is rather outdated. Watch the dates of any studies you find, look for details.

There has been a lot of progress in the last few years, with the type and timing of radiation and hormone therapy under almost continuous updates.

There are a number of us G9 folks on the forum, and we're here to answer questions you may have. Most of us are still doing rather well, so please be encouraged. It's frightening for sure, and it's worse when one is diagnosed so young. But still, there is good reason for hope. Treatments can quiet this beast down for many years!
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

Naples
Regular Member


Date Joined Dec 2016
Total Posts : 76
   Posted 10/18/2017 8:16 PM (GMT -6)   
Thank you Redwing.

I'm now 13 months in. I'm so much more educated on this disease. Partially from my own research, but very much through this forum. Like anything challenging, the mental side of this is crucial for success. Reading about others with advanced disease (and no whinning) is motivation to seek solutions and ask my MO more questions. We need to be advocates of our own and this forum helps. I decided to retire after learning my diagnosis and I'm enjoying life more than expected for a guy with a serious health problem. I gained 10 pounds almost immediately once on Lupron and since lost 18. Walking 4.5 miles every morning. I'm headed for better fitness both physically and mentally. Keeping the faith. Going for at least 5 more years and then I'll make a new goal. Lots to be thankful for. Keep up the good work guys.
DX 7/2016. 61 years of age. Radical Prostate Surgery 9/28/2016. G9 5+4. 3 nodes positive. T3b, Casodex & Lupron 2 years. Radiation, 39 completed 3/17/2017.
PSA 7/2016 4.5
PSA 10/2016 1.87gg
PSA 4/2017 0.0
PSA 7/2017 0.0

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3892
   Posted 10/18/2017 10:59 PM (GMT -6)   
Hello Mr. Naples...You are doing great ! Keep up the walking, it really helps..Are you still on ADT (Lupron)?
Age now 75 . Diagnosed G-9 6/2010. RALP, Radiation failed
Lupron, Zytiga, PSA <0.1 10/16 no change <0.1 5/17 PSA 1.6 Chemo or Provenge next..Sept '17, PSA now 9.2. ADT including Zytiga has failed. Will investigate treatment options.

DonJ
Regular Member


Date Joined Jan 2015
Total Posts : 22
   Posted 10/19/2017 2:28 PM (GMT -6)   
Hi, I wanted to provide an update from a fellow G9'r. I am undetected as of Oct 2017! I'm coming up on 4 years since surgery and I've been off of Lupron since June of 2015. With all my positive margins etc. I kind of keep expecting a PSA rise when I go for testing every 4 months. But so far nothing! Maybe the aggressive treatment of surgery, ADT & radiation was right for me. I can't argue with these results. If I had known I was a T3b prior to surgery I'd probably gone with ADT & radiation only but the biopsy said T1a so surgery was recommended by urologist and the tumor board. I'm very thankful for these results and this site! Thanks to all of you for your contributions. I come here often.
Don
DX April 2013, Age 59
G9, PSA 14, 11 of 12 cores +
UCH in Aurora (Dr. Crawford URO) Degarelix July 2013 (now Lupron)
RP Oct 2013 PSA <.01 since surgery.
Final Path: High Gleason PCa > 50%, T3b EPE + multifocal > 15mm
Per Inv. Bilateral inv of seminal vesicles, Lymph inv mf, + base, + bilateral-posterior margins >10 mm
MO Dr. Flaig UCH
ART Nov2014-Dec 2014 33 sessions 62GY
Last Lupron Shot 3/2015

Dogdays
Regular Member


Date Joined Jan 2017
Total Posts : 200
   Posted 10/19/2017 2:36 PM (GMT -6)   
Don,
That's the sort of thing we all like to hear. Congrats and many, many more years being undetectable. Hang around and keep us up to date.
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

Annie88
Regular Member


Date Joined Oct 2016
Total Posts : 177
   Posted 10/19/2017 7:01 PM (GMT -6)   
Hello carattop. I'm so sorry about your husband's diagnosis, especially at such a young age.

Do you mind if I ask where the cancer had spread given his T4 label? Interesting about the chemo when you wrote that he was M0. Did they discuss Zytiga at all?
Husband diagnosed Sept 2016 (symptomat
PSA 28, GS 4+5 (pos all cores) N0, M0, cystoscopy revealed visible cancer at bladder neck
Firmagon Oct 10
PSA
Oct 20: 5.38
Nov 18: 1.69
Dec 12: 1.98
Dec 16: 2.05
Jan 17: 2.33
Added 50 mg Casodex/Bicalutamide
Jan25: 1.09

RP Feb 10 pT3bN1M0- remained on Casoden + Firmagon
all PSAs since surgery undetectable

Adjuvant radiation planned for May 25

Jerry L.
Veteran Member


Date Joined Feb 2010
Total Posts : 3072
   Posted 10/19/2017 8:27 PM (GMT -6)   
Carottop,

Welcome to Healing Well. Great place for support and info.

I can relate to the young age and higher Gleason, but hang in there...I was 44. For me, it's been an interesting ride but doing good 8 years later.

Once you get a plan things will calm down..

If you ever want to talk, please feel free to email me.

Jerry L.
11/09 Dx at Age 44 ----- 4.03
12/09 DaVinci Surgery,t3b,g9 <.05
2/10 Adj. Radiation ----------- <.05
3/11 PSA Rise/Scans/Spot ---- .09
on Pelvic Bone
4/11 HT/XGEVA/Spot Radiation -- .06
2011-2012: ADT3: 15 months
2013-2015: ADT3 VACATION #1: 36 Months
2016: Spot on Rib; .07; ADT3; Spot Rad
2017-?: ADT3 VACATION #2:

Aintgottimeforthis
New Member


Date Joined Oct 2017
Total Posts : 4
   Posted 10/19/2017 10:49 PM (GMT -6)   
I'm a newbie, known my Gleason 9, PSA 9 since Sept 26. But had good news today that nothing showed on my CT or bone scan. As good as it gets for this aggressive animal that has latched onto my manhood.
Now I begin the search. I started with a surgeon but I like my prostate where it is. I've got a lot of scars down there due to a bad colon. So, ortho is out per the DaVinci guy and surgeons operating freehand scares me.
A friend of my brotherinlaw had Proton back in 2008 and turned me onto Proton Bob's book. Sounds like the chance of side effects is less but that's coming from a book written by one guy. I am fairly young, 56.
I have an appt early next month to discuss Proton Therapy. What's hard at this stage is knowing what to ask. That's probably been printed in this forum so a little direction please.

Not sure how much time I have to make up my mind but I hear the clock ticking.

WifeofPie
Regular Member


Date Joined Feb 2017
Total Posts : 148
   Posted 10/20/2017 11:50 AM (GMT -6)   
Aintgottimeforthis...the clean scans are definitely good news, that means you have a shot at a total cure.
Your stats are similar to my husband's diagnosis early this year.
You have research to do of course, but make sure you look into the "triple play"...HDR brachytherapy + IMRT + Hormone Therapy.
It's a combination of systemic treatment (the hormone therapy) plus localized treatment (the High Dose Radiation targets the prostate only, the IMRT targets the prostate and the entire prostate bed as well as nearby lymph nodes).
The hormone therapy isn't all that fun, BUT...you can get started with it and generally you need to be on it for roughly 2 months prior to starting the radiation therapy (the HT weakens the cancer cells and makes them more radiosensitive)...so that 2 month clock kind of buys you time to further research, choose your docs and options, and know that you've halted cancer growth in the meantime.
Good luck.
Husband Dx 2/2017 age 57 no symptoms
PSA 6.4
12/12 cores positive - 10 Gleason 7, 2 Gleason 9 (4+5)
bone scan clean, MRI shows no evidence of mets, F18 PET scan clean
PNI present
Stage 3a
Casodex/Lupron started 3/2017. 8/2017 Zytiga added in place of casodex.
HDR Brachy 5/23/17 at UCLA with Dr. Demanes
25 sessions IMRT with Dr. Ash at St. Joe's completed 7/10/17

Aintgottimeforthis
New Member


Date Joined Oct 2017
Total Posts : 4
   Posted 10/20/2017 12:17 PM (GMT -6)   
Thank you WifeofPie.
What type of Dr did you see? Like I said mine is a surgeon so I think he leans toward removing the cancer.

WifeofPie
Regular Member


Date Joined Feb 2017
Total Posts : 148
   Posted 10/20/2017 1:15 PM (GMT -6)   
We saw several docs. The diagnosing physician was a urologist (a surgeon). He gave us the biopsy results and wanted to do surgery within a month. For my husband, that was complicated by the fact that he'd had a double inguinal hernia surgery years ago and has nylon mesh from that...we were not sure he'd be a good candidate for the RP and his urologist expected there would be either no nerve sparing or he'd only spare the nerves on one side.

We met with a few Radiation Oncologists. The one who did the HDR brachytherapy really ONLY does brachytherapy. He's a specialist at UCLA (Jeff Demanes, MD).

We met with a SBRT (cyberknife) guy at UCLA as well, and we met with a couple of radiation oncologists in Orange County where we live (we're about 1-1.5 hours away from UCLA, so for daily radiation appointments, that was too far). In the end, we went to UCLA for the HDR brachytherapy (that was one long day, with a pre op and post op...so we went 4 times - consult, pre op, procedure, and post op).

We did the IMRT locally after choosing one of the 2 orange county radiation oncologists. We could've had the same guy do the brachytherapy, but we felt more comfortable at UCLA for that - Dr. Demanes just put us both a bit more at ease. 25 sessions.

First step might be to familiarize yourself with those options. You can find threads on this site with info and links to studies about outcome.

I'm relatively new to this journey myself, and I don't want to be accused of attempting to sway someone away from one treatment or toward another. We found that for us, the triple play was the best shot at a cure while minimizing side effects.

We ruled out surgery because it seemed that for my husband's diagnosis as a G9, he would likely still need some radiation after surgery - we didn't want to suffer the side effects of both treatments. We determined that we probably would've given surgery more thought if we believed that surgery would rid him of the cancer. We didn't have that confidence with the diagnosis...we were pretty sure he'd still need radiation to the prostate bed and the lymph nodes.
Husband Dx 2/2017 age 57 no symptoms
PSA 6.4
12/12 cores positive - 10 Gleason 7, 2 Gleason 9 (4+5)
bone scan clean, MRI shows no evidence of mets, F18 PET scan clean
PNI present
Stage 3a
Casodex/Lupron started 3/2017. 8/2017 Zytiga added in place of casodex.
HDR Brachy 5/23/17 at UCLA with Dr. Demanes
25 sessions IMRT with Dr. Ash at St. Joe's completed 7/10/17

WifeofPie
Regular Member


Date Joined Feb 2017
Total Posts : 148
   Posted 10/20/2017 1:23 PM (GMT -6)   
aintgottime - this is a thread I started 2 days after my husband was diagnosed as a G9. There is some helpful information in it directed at someone (me) who had only heard of a Gleason score at all for less than 48 hours when I started it. Info in there about the triple play and links to studies, as well as folks who chose surgery. It may or may not be helpful to you, but I figured I'd include it for you. If the link isn't live, you might have to cut and paste it into the browser.


http://www.healingwell.com/community/default.aspx?f=35&m=3787348
Husband Dx 2/2017 age 57 no symptoms
PSA 6.4
12/12 cores positive - 10 Gleason 7, 2 Gleason 9 (4+5)
bone scan clean, MRI shows no evidence of mets, F18 PET scan clean
PNI present
Stage 3a
Casodex/Lupron started 3/2017. 8/2017 Zytiga added in place of casodex.
HDR Brachy 5/23/17 at UCLA with Dr. Demanes
25 sessions IMRT with Dr. Ash at St. Joe's completed 7/10/17

DebbieMH
Regular Member


Date Joined Jun 2012
Total Posts : 96
   Posted 10/21/2017 10:40 AM (GMT -6)   
My husband is in this group and was diagnosed in 2012. Latest Dr.'s appointment was this past Friday. Seems his PSA is rising so Dr. Sartor wants to start Zytiga in January. Said he has done extremely well given a G9; mets and a psa of 177 to start with ... but it is time to start adding additional treatment options. Gave him a 4-8 year longevity window at this point in time. Husband is not happy about that .. but new discoveries are being made daily and maybe there really will be cure in the next couple of years.
Husband:
Diagnosed 4/12; PSA 177; G9 (5+4); some bone mets
Eligard + Casodex 4/12; Radiation 8/9/12 - 10/5/12
HT stopped 3/12/14;HT restarted 2/3/15; stopped 8/15
HT restarted 4/16; stopped 11/16; HT restarted 5/17
BRCA2 Gene; 7/17 scans - very little change
10/17 - PSA .056 and rising; Zytiga starting 1/18

Jerry L.
Veteran Member


Date Joined Feb 2010
Total Posts : 3072
   Posted 10/21/2017 1:15 PM (GMT -6)   
DebbieMH,

His doctor has no idea of a how long the "longevity window" is. That comment actually infuriates me. If my doctor said that I might have to consider firing him.

Do I read this correctly that your husband tested positive for BRCA mutation? Possible candidate for Lymparza?

Thanks,
Jerry L.
11/09 Dx at Age 44 ----- 4.03
12/09 DaVinci Surgery,t3b,g9 <.05
2/10 Adj. Radiation ----------- <.05
3/11 PSA Rise/Scans/Spot ---- .09
on Pelvic Bone
4/11 HT/XGEVA/Spot Radiation -- .06
2011-2012: ADT3: 15 months
2013-2015: ADT3 VACATION #1: 36 Months
2016: Spot on Rib; .07; ADT3; Spot Rad
2017-?: ADT3 VACATION #2:

DebbieMH
Regular Member


Date Joined Jun 2012
Total Posts : 96
   Posted 10/21/2017 3:41 PM (GMT -6)   
Yes, he is positive for the BRCA mutation. Dr. Sartor is looking into any trails that might he might have potential to join. I don't know anything about Lymparza ...??
Husband:
Diagnosed 4/12; PSA 177; G9 (5+4); some bone mets
Eligard + Casodex 4/12; Radiation 8/9/12 - 10/5/12
HT stopped 3/12/14;HT restarted 2/3/15; stopped 8/15
HT restarted 4/16; stopped 11/16; HT restarted 5/17
BRCA2 Gene; 7/17 scans - very little change
10/17 - PSA .056 and rising; Zytiga starting 1/18

Jerry L.
Veteran Member


Date Joined Feb 2010
Total Posts : 3072
   Posted 10/21/2017 4:19 PM (GMT -6)   
Also known as olaparib.

https://www.curetoday.com/articles/lynparza-continues-to-advance-in-prostate-cancer

DebbieMH
Regular Member


Date Joined Jun 2012
Total Posts : 96
   Posted 10/21/2017 5:48 PM (GMT -6)   
Very cool! Thanks that really looks promising. smile
Husband:
Diagnosed 4/12; PSA 177; G9 (5+4); some bone mets
Eligard + Casodex 4/12; Radiation 8/9/12 - 10/5/12
HT stopped 3/12/14;HT restarted 2/3/15; stopped 8/15
HT restarted 4/16; stopped 11/16; HT restarted 5/17
BRCA2 Gene; 7/17 scans - very little change
10/17 - PSA .056 and rising; Zytiga starting 1/18

BillyBob@388
Veteran Member


Date Joined Mar 2014
Total Posts : 3242
   Posted 10/21/2017 9:34 PM (GMT -6)   
DonJ said...
Hi, I wanted to provide an update from a fellow G9'r. I am undetected as of Oct 2017! I'm coming up on 4 years since surgery and I've been off of Lupron since June of 2015. With all my positive margins etc. I kind of keep expecting a PSA rise when I go for testing every 4 months. But so far nothing! Maybe the aggressive treatment of surgery, ADT & radiation was right for me. I can't argue with these results. If I had known I was a T3b prior to surgery I'd probably gone with ADT & radiation only but the biopsy said T1a so surgery was recommended by urologist and the tumor board. I'm very thankful for these results and this site! Thanks to all of you for your contributions. I come here often.
Don


All right there Don! May that PSA stay down in the dirt!
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 3/17,6/17,10/17

JoJoLA
Regular Member


Date Joined Oct 2015
Total Posts : 49
   Posted 10/22/2017 1:15 PM (GMT -6)   
DebbieMH...
I was looking at this trial for my husband who is CHEK2 positive but he started Zytiga 3 months ago which is classified as a CYP-17 and therefor excludes him...who knew! There are other Parp 1 trials but if it were me I would ask your doctor if starting Zytiga would get in the way of starting a trial to get after that BRCA2 gene.
https://clinicaltrials.gov/show/NCT03012321
Husband- dob '40 Takes Enbrel for RA
8/15 psa 6.7
9/15 Dx G9 MRI Biopsy Dr. Marks UCLA
Lupron 10mo. Casodex 4mo B scan hot spot 8th rib & clavicle old injuries? Nodes clear
12/3/15-2/8/16 IMRT Dr. C. King RO UCLA
PSA 7/16 .12
8/3/16 bone scan clear;
12/16 PSA .57 Testosterone 365 Back on Lupron
3/17 Sod Fluo Pet met clav, L5
2/17 SBRT L5
7/17 Zytiga/pred
10/17 PSA 1.1

DebbieMH
Regular Member


Date Joined Jun 2012
Total Posts : 96
   Posted 10/22/2017 3:23 PM (GMT -6)   
Thanks, JoJoLA ... will check with the doctor before he goes on the Zytiga. Thanks, Lynn

microchip
Regular Member


Date Joined Nov 2017
Total Posts : 26
   Posted 11/15/2017 8:01 PM (GMT -6)   
Redwing57,

Interested in your comment "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"
being new and just learning everything since I am in this situation, What does a very long time mean to you.

Microchip
Age 75 - diagnosed Nov-2017
PSA 7.8, Gleason 10 (5 + 5)
Biopsy High Grade
11/14- full body bone scan & CT scan

Northfoot
Regular Member


Date Joined Mar 2011
Total Posts : 81
   Posted 11/15/2017 8:11 PM (GMT -6)   
i have been very blessed so far. Retested 2 weeks ago.
Prostate cancer chronology:
• Diagnosis 1/4/08
• Surgery 1/22/08 G4+5
• Psa tests 2/08, 3/08, 6/08, 9/08, 12/08, 4/09, 7/09, 8/09, 10/09, 1/10, 4/10 all <0.05
• Psa 6/22/10 0.06
• Psa 7/10 0.05
• Psa 9/10 0.05
• Psa 11/10 0.06
• Psa 1/4/11 0.08
• Radiation started 1/19/11 and completed 3/15/11
Psa 3/29/11 0.05
Psa since then all <0.05 (11/1/17 = <0.01)

JkorourkeRN for husband
Regular Member


Date Joined Sep 2017
Total Posts : 44
   Posted 12/1/2017 3:52 PM (GMT -6)   
Please add me to the list that no one wants to be on I appreciate all the info support and help coping with Pca thankyou so much
Dx. 6/2017
GS 9 4 + 5
Davinci 8/23/17
L bladder neck pos
nodes L 4/5 Pos
Margins Pos
extensive perineural invasion nerves not spared
Bilat seminal vesicles involved

bertb
Regular Member


Date Joined Aug 2011
Total Posts : 404
   Posted 12/1/2017 10:03 PM (GMT -6)   
I haven’t posted for awhile but sneak in and read post. I’m a G9 finished radiation and Lupron over 5 years ago now. Blood test every 4 months and it’s still around 0.169 and steady plus minus. I feel pleased.
Good Luck to all my brothers. Bertb
AGE: 60, now 63
PSA: 5.3 , DX: 3/11
4 of 12 positive Gleason 10 downgraded to 9 on second look, (big deal)
Stage: T1c, CT/bone scan: clear
Treatment: Lurpron, Casodex + 44 IMRT (started 8/11 ended 10/11)
1st PSA 11/11 <0.010, 2nd PSA 2/12 <0.008
3rd PSA 7/12 <0.010 :), 4th PSA 11/12 <0.008
5th post PSA 3/13. <0.064, 6th PSA 7/13 <0.064, 7th PSA 11/14 <0.064, 8th PSA 3/14 <0.64, 9th 9/14 .2 :(

Redwing57
Veteran Member


Date Joined Apr 2013
Total Posts : 2501
   Posted 12/2/2017 5:06 PM (GMT -6)   
microchip said...
Redwing57,

Interested in your comment "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"
being new and just learning everything since I am in this situation, What does a very long time mean to you.

Microchip

Hi, sorry it's taken a while to respond. I'm not here as much lately as I used to be.

We have members here who were diagnosed metastatic, and are doing very well even many years later (10+). So a very long time, to me, means quite a few years! And as we do well with the available treatments, there are new treatments and combinations of them that are being developed constantly.
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