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 : 2321
   Posted 12/2/2017 3:09 PM (GMT -7)   
bertb, that's good to hear! This is encouraging for anyone that lands here, since there's so much discouraging stuff out on the interwebz about the high Gleason cases. There is much hope!
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, 0.7-10/17

cspivak
Regular Member


Date Joined Aug 2014
Total Posts : 206
   Posted 12/4/2017 7:56 AM (GMT -7)   
Hey Mrs. jkoRN and all

Just wanted to say hi, another G9 wife here. My DH was diagnosed three years ago. It’s been a huge change in life and we’re among the very lucky ones: he hit the genetics lottery, qualified for Keytruda (pembrolizumab) and has been PSA undetectable for a few months now.

The importance of knowing that you have (almost certainly) a good number of years with current treatments, is that research is genuinely moving at this point. When your husband needs them, there will probably be other better (more effective, less life impacting) treatments available in the future. That’s what happened to us! And olaparib is another good example. Barring the total collapse of Society, there will be more.

Dave may have some some thyroid stuff going on, this is one of the hazards of immunotherapy. I’ll post elsewhere once we know more.

— Carolyn
Dx 8/14, age 58, PSA 29, G9 (4+5), 11/12 cores, 3 bone mets
Lupron 9/14, Xgeva 10/14-12/14
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, 10/16-6/17 Xtandi, 12/16 IMRT
5/17 PSA 8.6, 6/17 PSA 13, 6/17 lymph node biopsy MSI-H
6/17 Keytruda(pembrolizumab), 7/17 PSA undetectable, 9/17 lymph nodes almost resolved

john4803
Regular Member


Date Joined Sep 2017
Total Posts : 32
   Posted 12/24/2017 6:05 PM (GMT -7)   
Add me to the 4+5 list, please.

69yr,1948 Troy MO-W of St. Louis
PSA 3.2 7/08
PSA 51.2(7/11/17)
DRE hd lft, 31g 7/24
Biopsy8/11 No PNI GS 4-8s, 4-7s/12
NUC Scan/CT Urogm8/29-CLEAR
Prolaris 9/11 T2b, 3.8/10, 10yr Mort Risk 23.5%, Met Risk 29.6%.
Consult 9/11 Rec RT/BT/RALP
MRI 3T Ca in gland?
RALP11/15
PATH11/16
T3b,GS 9(4+5)
70G Pc 40%
PLN+Rt-1/1,Lt-2/6
+Margins-apex,ureth,blad nk,SV
Lupron/Cas11/21
Axumin1/2/18,RT?

Post Edited (john4803) : 12/24/2017 6:14:46 PM (GMT-7)


Noggin2u2
New Member


Date Joined Jul 2017
Total Posts : 12
   Posted 12/30/2017 8:23 AM (GMT -7)   
Add me to the 4+5 list also.
DX @ Age 64 4-17; Fusion biopsy Gleason 7 Bone and CAT Neg
1999 PSA 3.0 enlarged prostate chronic prostatitus ongoing
PSA 4-2015 7.7
PSA 11-9-2015 8.9
Biopsy 12-2015 Neg
1-11-2017 13.7
2-3-2017 14.7
RALP 6-14-2017 final path Gleason 9 4+5; pT3a
PSA 7-7-2017 .11
PSA 8-10-2017 .1
PSA 9-20-2017 .11
PSA 10-31-2017 .01
HT Casodex 11-27-2017; RT 12-4-2017, 39 treatments total

john4803
Regular Member


Date Joined Sep 2017
Total Posts : 32
   Posted 12/30/2017 9:21 AM (GMT -7)   
Noggin2u2 said...
Add me to the 4+5 list also.


Noggin,

Did you have Adjuvant RT? And what radiation levels did you have?

I am having the Axumin Pet scan next week and if I have no met's outside of the pelvis, I will start Adjuvant RT in February/March. I am on Lupron/Casodex, also.

69yr,1948 Troy MO-W of St. Louis
PSA 3.2 7/08
PSA 51.2(7/11/17)
DRE hd lft, 31g 7/24
Biopsy8/11 No PNI GS 4-8s, 4-7s/12
NUC Scan/CT Urogm8/29-CLEAR
Prolaris 9/11 T2b, 3.8/10, 10yr Mort Risk 23.5%, Met Risk 29.6%.
Consult 9/11 Rec RT/Brh/RALP
MRI 3T Ca in gland?
RALP11/15
PATH11/16
T3b,GS 9
70G Pc 40%
PLN+Rt-1/1,Lt-2/6
+Margins-apex,ureth,blad nk,SV
Lupron/Cas11/21
Axumin1/2/18,RT?

Noggin2u2
New Member


Date Joined Jul 2017
Total Posts : 12
   Posted 12/30/2017 11:11 AM (GMT -7)   
"Did you have Adjuvant RT? And what radiation levels did you have?"

Not sure the answer to either question but will find out next week.

Good luck with your scan!
DX @ Age 64 4-17; Fusion biopsy Gleason 7 Bone and CAT Neg
1999 PSA 3.0 enlarged prostate chronic prostatitus ongoing
PSA 4-2015 7.7
PSA 11-9-2015 8.9
Biopsy 12-2015 Neg
1-11-2017 13.7
2-3-2017 14.7
RALP 6-14-2017 final path Gleason 9 4+5; pT3a
PSA 7-7-2017 .11
PSA 8-10-2017 .1
PSA 9-20-2017 .11
PSA 10-31-2017 .01
HT Casodex 11-27-2017; RT 12-4-2017, 39 treatments total

Redwing57
Veteran Member


Date Joined Apr 2013
Total Posts : 2321
   Posted 12/30/2017 11:52 AM (GMT -7)   
Noggin2u2 and John4803, you're on there. The list is sorted by date of diagnosis, as close as I can find it in signatures and so on. Welcome to the least favorite chapter of the club no one wants to join. Here's hoping for your situations to respond well to treatment!
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, 0.7-10/17

Naples
Regular Member


Date Joined Dec 2016
Total Posts : 44
   Posted 1/3/2018 6:58 AM (GMT -7)   
Fairwind,
I didn't see your reply until now. Yes I'm still on ADT/Lupron. My original therapy plan called for 24 months and I'll be inside 9 months to go on February 1. My MO took me off Casodex after 1 Year because SEs were difficult. I feel better as a result. If my PSA stays down, I will likely pause on Lupron this summer. At this point my biggest challenge is joint pain. I don't like taking pills as a rule so I'm trying to make it to Lupron free to further evaluate additional meds. Considering my advanced diagnosis, I'm going strong. I hope you are hanging tough and feeling well yourself. Thank you for reaching out. Happy New Year and Good Health.
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 0.0t
PSA 7/2017 0.0
PSA 10/2017 0.0

Noggin2u2
New Member


Date Joined Jul 2017
Total Posts : 12
   Posted 1/3/2018 7:13 AM (GMT -7)   
Redwing, thanks for adding me. This is a really good place for getting information. I've learned a lot the last two weeks. Some good, some not so good, but I have a lot better understanding of what I'm up against. Thanks to all who post.
DX @ Age 64 4-17; Fusion biopsy Gleason 7 Bone and CAT Neg
1999 PSA 3.0 enlarged prostate chronic prostatitus ongoing
PSA 4-2015 7.7
PSA 11-9-2015 8.9
Biopsy 12-2015 Neg
1-11-2017 13.7
2-3-2017 14.7
RALP 6-14-2017 final path Gleason 9 4+5; pT3a
PSA 7-7-2017 .11
PSA 8-10-2017 .1
PSA 9-20-2017 .11
PSA 10-31-2017 .01
HT Casodex 11-27-2017; RT 12-4-2017, 39 treatments total

john4803
Regular Member


Date Joined Sep 2017
Total Posts : 32
   Posted 1/3/2018 1:23 PM (GMT -7)   
Naples said...
Fairwind,
I didn't see your reply until now. Yes I'm still on ADT/Lupron. My original therapy plan called for 24 months and I'll be inside 9 months to go on February 1. My MO took me off Casodex after 1 Year because SEs were difficult. I feel better as a result. If my PSA stays down, I will likely pause on Lupron this summer. At this point my biggest challenge is joint pain. I don't like taking pills as a rule so I'm trying to make it to Lupron free to further evaluate additional meds. Considering my advanced diagnosis, I'm going strong. I hope you are hanging tough and feeling well yourself. Thank you for reaching out. Happy New Year and Good Health.


Naples,

What caused your joint pain? I had RALP 11/15/17 and started lupron & casodex 11/21/17, possibly for 2 - 3 years depending on how radiation goes, I guess, starting in Feb. possibly. What were your SE's on both, if you don't mind sharing?

69yr,1948 Troy MO-W of St. Louis
PSA 3.2 7/08
PSA 51.2(7/11/17)
DRE hd lft, 31g 7/24
Biopsy8/11 No PNI GS 4-8s, 4-7s/12
NUC Scan/CT Urogm8/29-CLEAR
Prolaris 9/11 T2b, 3.8/10, 10yr Mort Risk 23.5%, Met Risk 29.6%.
Consult 9/11 Rec RT/Brh/RALP
MRI 3T Ca in gland?
RALP11/15
PATH11/16
T3b,GS 9
70G Pc 40%
PLN+Rt-1/1,Lt-2/6
+Marg-apex,ureth,blad nk,SV
Lupr/Cas11/21
Axumin 1/2/18 negative, RT 2/18?

john4803
Regular Member


Date Joined Sep 2017
Total Posts : 32
   Posted 1/3/2018 1:27 PM (GMT -7)   
Noggin2u2 said...
"Did you have Adjuvant RT? And what radiation levels did you have?"

Not sure the answer to either question but will find out next week.

Good luck with your scan!


Noggin2u2, thanks!

My scan was negative. So, I assume my RO will recommend radiation in Feb. Meet 1/9/18.

69yr,1948 Troy MO-W of St. Louis
PSA 3.2 7/08
PSA 51.2(7/11/17)
DRE hd lft, 31g 7/24
Biopsy8/11 No PNI GS 4-8s, 4-7s/12
NUC Scan/CT Urogm8/29-CLEAR
Prolaris 9/11 T2b, 3.8/10, 10yr Mort Risk 23.5%, Met Risk 29.6%.
Consult 9/11 Rec RT/Brh/RALP
MRI 3T Ca in gland?
RALP11/15
PATH11/16
T3b,GS 9
70G Pc 40%
PLN+Rt-1/1,Lt-2/6
+Marg-apex,ureth,blad nk,SV
Lupr/Cas11/21
Axumin 1/2/18 negative, RT 2/18?

Skypilot56
Regular Member


Date Joined Mar 2017
Total Posts : 340
   Posted 1/3/2018 7:50 PM (GMT -7)   
John4803- Am I understanding that you started Lupron and Casodex a week after you had surgery?

Larry
Male 61 DX @ 60
Father had PC
2002. Psa. .08 Enlarged Prostrate
2014. Psa. 3.8
2016. Psa. 19
3-08-17 RP Mayo in Mn
Path Report: Gleason 9, pt3b, Seminal vessels and one nerve removed, neg.margins, 35 LN removed no cancer, Prostrate 45 grams
4-20-17 Incarcerated Umbilical Hernia
6-13-17 psa 0.13
7-19-17 psa 0.12 MRI clear
10-11-17 psa 0.16
10-12-17 Lupron
12-13-17 psa <0.10
12-18-17 SRT

john4803
Regular Member


Date Joined Sep 2017
Total Posts : 32
   Posted 1/3/2018 10:12 PM (GMT -7)   
Skypilot56 said...
John4803- Am I understanding that you started Lupron and Casodex a week after you had surgery?

Larry


That's correct, Larry. They wanted to hold off any mets occurring from the upgraded GS, until I was healed enough for RT.

69yr,1948 Troy MO-W of St. Louis
PSA 3.2 7/08
PSA 51.2(7/11/17)
DRE hd lft, 31g 7/24
Biopsy8/11 No PNI GS 4-8s, 4-7s/12
NUC Scan/CT Urogm8/29-CLEAR
Prolaris 9/11 T2b, 3.8/10, 10yr Mort Risk 23.5%, Met Risk 29.6%.
Consult 9/11 Rec RT/Brh/RALP
MRI 3T Ca in gland?
RALP11/15
PATH11/16
T3b,GS 9
70G Pc 40%
PLN+Rt-1/1,Lt-2/6
+Marg-apex,ureth,blad nk,SV
Lupr/Cas11/21
Axumin 1/2/18 negative, RT 2/18?

Skypilot56
Regular Member


Date Joined Mar 2017
Total Posts : 340
   Posted 1/4/2018 8:31 AM (GMT -7)   
Ok very interesting haven't ever run across that scenario in all the reading I've done

thnx
Male 61 DX @ 60
Father had PC
2002. Psa. .08 Enlarged Prostrate
2014. Psa. 3.8
2016. Psa. 19
3-08-17 RP Mayo in Mn
Path Report: Gleason 9, pt3b, Seminal vessels and one nerve removed, neg.margins, 35 LN removed no cancer, Prostrate 45 grams
4-20-17 Incarcerated Umbilical Hernia
6-13-17 psa 0.13
7-19-17 psa 0.12 MRI clear
10-11-17 psa 0.16
10-12-17 Lupron
12-13-17 psa <0.10
12-18-17 SRT
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