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10 Years for this G9 Bone Mets Guy

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Posted 10/31/2019 7:43 PM (GMT -7)
Just checking in with everyone...

It’s been 10 years since I was diagnosed with Gleason 9 PC and like 9 years since bone mets were found. Even still, I’ve been able to go on Intermittant Hormone Therapy (IHT). I had a f18 scan last Spring that show a spot on that same rib that lit up awhile back....so this time we zapped it 5 times and went on HT. PSA 3 months later showed undetectable and hopefully I can go back on another HT vacation shortly.

Thank you all for your support and information over the years. HW is and always has been a great place for knowledge and support.
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
2017-2019: ADT3 VACATION #2: 30 Months
2019: Same spot on PET, not CT; .60; ADT3; Spot Rad; <.06
Posted 10/31/2019 7:46 PM (GMT -7)
That's wonderful! Stories like yours give my husband and I great hope for the future!
Husband’s info: Dx July 2018. 6 of 12 cores positive - 3 cores 4+3 and 3 cores 4+4. PSA 5.7 2/18, 6.2 5/18 RALP 8/29/18. 9/27/18. Path report: G9 4+5 pT3b, N1. EPE+, SVI +, + margin left bladder neck, lymph nodes 1/9 positive, prostate 48g, prostate involvement 35% 12/18/18 Axumin PET- neg 12/19/18 Casodex; 1/2/19 Eligard 9/18 1st post-op PSA 0.06; 12/6 0.06; 1/2/19 <0.04;1/31 0.04; to date <0.04
Posted 11/1/2019 5:36 AM (GMT -7)
Way to go Jerry,
Sound like you have a good team of doctors.
Where do you get treated? I am seen in Tulsa and also MD Anderson,
Larry E
Part of the G9 crew...
65yrs
Dx 3/15 62yrs Tulsa
G-9 PSA 203 High volume, Distant mets pelvis, spine, clavical, rib, lung.

5/15 Fermagon initial ADT, Xgeva
7/15 Eligard /6mo Vit D3 7/15 Taxotere
8/16 New bone mets 10/16 Lung nodes
10/16 Provenge
7/18 changed over to 22.5 mg Q 3mo Lupron

PSA 2019
Oct 1.4
Jul .84

PSA 2018
Oct .6
Aug .70
Jun .39
Apr .36
Mar .26
Feb .21
Posted 11/1/2019 6:55 AM (GMT -7)
Great update. Thanks for your hope and inspiration!
Part I
2015 (Age 54) PSA: 20.8
Bx: All cores G7 (4+3)
RALP & Adjuvant RT
Pathology: G8 (4+4)+5
PSA nadir: 0.1, steady increase until 2019: 64.13

Part II
2019, March: Lupron/Xtandi, PSA: 1 month: 0.126; 3 months: 0.036; 6 months: <0.02
Posted 11/1/2019 9:24 AM (GMT -7)
Great report, congratulations

This is a great example of w we shouldnt pay an attention whatsoever to statistics. They are valid for large groups but not for the individual becase we are all dfferent.
I am not a doctor, just another guy without a prostate
Dx Age 64 Nov 2014, PSA 4.3
BX 3 of 12 cores positive original pathology G6
RALP with Dr Ash Tewari Jan 6, 2015
Post surgical pathology G7 (3+4), - ECE, - Margins, -LN, -SV (+ frozen section apex converted to negative)
PSA @ 6 weeks 2/15, .<02, remained <0.02 until January 2017, .02, repeat Feb 2017, still .02. May 2017-.033, August 2017- .033 November .046, March 2018 .060. June 2018 .068, July 2018 - .082, August 2018, .078, August 2018 - .08 Start ADT. Sept 2018 Start SRT
Sept 2018 thru November 2018 – T = 4, PSA = <.05
Decipher test, low risk, .37 score
My story.... tinyurl.com/qgyu3xq
Posted 11/1/2019 11:19 AM (GMT -7)
G9 doin fine! Love to see that.
Dx 5/18/17
11/12 cores 2 4+4
RALP 7/27/17;3 pos nodes
psa post op 0.15 to 0.28
scan=multiple bone mets
Clev Clinic ups to G9
CClinic MO+my MO say ADT+Zytiga+Pred
lupron 11/17/17
zytiga 12/15
psa 12/28 0.03
4/4/18=<0.01
7/3=<0.01
stop Zytiga 7/16 bad liver #'s
9/11/18 restart Zytiga 1/2 dose
10/5=<0.01
10/30 start 3/4 dose
1/19=<0.01
4/19=<0.01
7/19=<0.01
10/19=<0.01
Posted 11/1/2019 1:20 PM (GMT -7)
Larry E,

Pretty much my team these days is local in South Central PA - Hershey. Was seeing Myers until he retired.
Posted 11/1/2019 5:06 PM (GMT -7)
That's excellent and quite encouraging for everyone else! Like someone else said, reading the statistics are pretty much a waste of time. I said to my dad's doctor that "once you get cancer in your bones you are lucky if you have 5 years to live." She just told me, "You're crazy!" She said half the stuff on the Internet isn't right anyway. I'm so happy to see that you are doing well!
Posted 11/4/2019 4:08 AM (GMT -7)
11 Years for me with Gleason 9 and spinal bone met from the beginning. Startet iADT, but now leave intermittant and going for continues ADT. PSA still low: 0.014ng/ml. But it will not last forever, thats for sure.
Posted 11/4/2019 4:18 AM (GMT -7)
My wife reads a lot of these posts and she is so happy to read about the success of G-9's. Thanks for updates!

Larry
Male 63 DX @ 60
Dad had PC
2002. Psa. .08
2014. Psa. 3.8
2016. Psa. 19
3-08-17 RP Mayo,Mn
Gleason 9, pt3bno, SVI, EPE, 35 LN-
4- 17 Hernia surgery
6- 17 psa 0.13
7- 17 psa 0.12 3TMRI coil - clear
8- 17 shoulder replaced
10- 17 psa 0.16
10-12-17 Lupron
12- 17 psa <0.10
12-18-17 SRT
2-7-18 SRT done 72gy
4-18 psa <0.10
10-18 psa <0.10
3-19-19 Laminectomy Surgery
5-8-19 psa <0.10
10-19 <0.10
Posted 11/5/2019 12:31 PM (GMT -7)
Thanks for the great news Jerry, good news for all of us advanced guys! And others that are worrie about becoming advanced! YAY! And you too, Low Road!
PSA 10.9 ~112013
Bx on 112013 at age ~65yrs, with 5 of 12 pos, G9(5+4), T2B.
RALP with lymph nodes at Vanderbilt 021914. (nodes clear, SV+, G9 down graded to 4+5, 1 focal margin )
only rare pad use after 1 year
PSA <.01 on 6/14 and all until 9/15 = .01, still .01 9/16, .02 on 3/17,6/17,10/17, .06 1/18, .06 4/18, <.05 7/18, .06 10/18, .06 04/19
Posted 11/5/2019 1:23 PM (GMT -7)
Great news! I needed to hear this today! DH (G9) is 6 1/2 years from diagnosis with two spinal mets found about a year ago. PSA just went from 1.5 to 2.5 in three months. Your report is encouraging, probably more than you know!
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