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Very brief update - 7/30

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Posted 7/30/2019 5:31 PM (GMT -7)
Just a quick word. On my last PSA, I get mine done twice a year now, it jumped from 23.xx (?) to 40.xx. Biggest jump in a while. Still choosing to wait and watch, oncologist still agrees as scans show no visible mets.

Got more bad health news a week ago, not only dealing with Agent Orange Related Parkinson's (Stage 3), they now feel I have the dreaded LBD (Lewy Body Dementia) to the mix. Keep going from bad to worse. Been that way from 2008 to present.

Together, they are going to form a much a quicker down hill path of my mind and memory, and little can be done to slow it down. Any cure is impossible I've been told. Just turned 67 a few weeks ago

More later if I can
Posted 7/30/2019 5:36 PM (GMT -7)
Purgatory,
Good to hear from you. You've got some big challenges. Keep hanging in there as best you can.
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

Part II
2019, March: Lupron/Xtandi, PSA: 0.036
Posted 7/30/2019 6:16 PM (GMT -7)
Always glad to hear an update from you, Purgatory, whatever the news. Pulling for you.
Age 60 at dx 7/2017 biopsy G8 (4+4), 5/13 cores
RARP 8/2017 (Patel), pT3a N0 M0, 30% tumor; EPE+, SV-
PSA 1/2016, 2.9; 4/2017, 7.2; 9/2017 (post-RARP), 0.13; 10/2017, <0.05, 1/9/2018, 0.09, 2/23/2018, 0.08.
SRT 72Gy, 40 fractions, finished 5/8/2018, plus 12 months ADT, finished 2/2019, PSA <0.02, T=4
Caution: I’m not an MD and don’t know what I’m talking about.
Posted 7/30/2019 6:29 PM (GMT -7)
Purgatory,

So sorry to hear the continuing bad news but am always hoping the best for you.

My mom had a close cousin of LBD, and it is a real tough slog as time goes on--but manageable to an good extent. Just takes close coordination between patient, family and caregivers. I know you will get all legal papers and personal choices nailed down now, as there will come a time when you cannot easily handle them, or more likely, just don't want to anymore. There are some good websites out there for these diseases, or at least there were a decade ago when I needed info.

Peace be with you.

Robert
69 now
Jan '08-'11 PSAs 2.2 2.5 2.7 2.6, DREs-
Jan '12: PSA 3.6, DRE+
Jan '12: MRI inconclusive
Feb '12: PCaDx pT2a, 4/12+ (3 @ 3+3, 1 @ 4+3); 3% tot cores; bone scan-
Apr '12: RALP; 3+4=7; pT2c pN0 pMx; 30%; 3mm r lat margin of 3+3=6 so pT2+; EPE-; PNI+; 8 LN-; SV-
TRT 03/'14- uPSAs: <.015 til 02/17; mostly .020-.030 then .048 on 12/1/18; off TRT since 12/2018 and uPSA settling in mid .030s
Posted 7/30/2019 7:57 PM (GMT -7)
Hey bro, we’re all pulling for you... keep us updated please.
NYS, Dx @ age 56-PC May ‘18 PSA=43; high 97.8
PC Stage IV (CT/PET scan; Lymph/bone mets)
Casodex May/June '18
6/25/18 Taxotere 6*3 wk regimen+ Lupron(continuous)
PSA=4.04 10/18 ...rises from 13 (4/19) to 40 (5/22/19)
5/22-XTANDI & Ribociclin in NCT02555189 @Roswell Pk
PSA=26 6/6/19
Posted 7/31/2019 6:32 AM (GMT -7)
Sorry for the bad news!!
Stay strong brother!
You've been fighting this battle a long time and it hasn't won.
Keep up the fight!
My Biopsy
My PSA Curve
Previous PSA
Curve
Treatment Path
My Story
Posted 7/31/2019 7:49 AM (GMT -7)
David -

Believe it or not, I was actually thinking about you the other day, wondering how you were doing, especially since we hadn't heard from you for a while.

It's concerning that life keeps throwing all these challenges at you, but, like a determined fighter, you just keep answering the bell. You've been doing that for years. There's no quit in you!

That reminds me of the boxing scene in the film "Cool Hand Luke," where Luke is getting badly beaten in a boxing fight with a much stronger fellow prisoner, but he just won't stay down! He just keeps coming back again and again, refusing to quit!

https://www.bing.com/videos/search?q=cool+hand+luke+boxing+scene+youtube&view=detail&mid=3a59683fd8d84d8fcb063a59683fd8d84d8fcb06&form=vire

In a very real way, even though he's battered, Luke wins that fight, because he won't "stay down," just as you have genuinely been winning yours for years, because you won't "stay down" either!

Yes, your body's opponents are getting some punches in, but, like Luke, you just keep fighting and won't quit!

That's very courageous, David!
Age: 73
Chronic prostatitis (age 60 on)
BPH w/ urinary obstruction, 6/2011
TURP, 7/2011
Ongoing high PSA, 7/2011-12/2011
Biopsy, 12/2011: positive 3/12 (90%, 70%, 5%)
Gleason 6(3+3), T1c
No mets, PCa likely still organ contained
IMRT w/ HT (Lupron), 4/2012-6/2012
PSAs (since post-IMRT): 0.1 or lower
Posted 7/31/2019 11:17 AM (GMT -7)
Hey, David...I don't post here much anymore, but whenever I visit I always check to see if there are any updates about your status. All I can say is that you have a lot of friends here who are pulling for you. Hang in there and continue the fight.
Posted 7/31/2019 11:22 AM (GMT -7)
David,
Like the others, I check in every few weeks to see how you are doing. So sorry to hear this latest news. Sometimes things just don't quit coming at us, and all we can really do is hold on as best we can. Sure do hope for better news at your next report.
Stay steady, my friend.
Lynn
Posted 7/31/2019 12:57 PM (GMT -7)
David:

You and I go way back. We used to have some good battles/arguments here on HW, but we are both brothers in the PC fight with plenty of other challenges too. You have been dealt some severe blows, starting with the botched radiation. Good luck in dealing with this latest most serious challenge.

Mel
Posted 7/31/2019 2:11 PM (GMT -7)
Dave,

So sorry to hear about your challenges. Still, it's good to hear from you, old chum.

DJ
Dx at 53. PSA 2007 ~2; 2008 4.3
Biopsy 9/2008: 6 of 12 cores +; Gleason 4+3=7
Da Vinci@City of Hope 12/8/2008
Rad prstc
Cath out day 7, in day 8, out day 14 neg cystogrm
pT2c; lymph nodes neg; marg invlv; 41g
6/20/18 SRT start
PSA 1/09-2/10 <0.01, 10/10 0.1, 2/11 0.08, 5- 0.11, 9- 0.10,1/12 0.16, 4- 0.13 8-0.17 12-0.23 9/13,14-0.20, 4/16-0.3,7/16-0.2, 8/16-9/17-0.3, 12/17-0.4, 3/18-0.5, 5/18-0.4
Posted 7/31/2019 4:42 PM (GMT -7)
thanks, to all my old friends and new ones too. dj, we sure go a long way back, glad you too are plugging along.
81 - appreciate your tribute, but I am hardly a "Luke", in my case, just too stupid to stay down, I keep getting up and getting beat down again. yes compiler, we were both in the Great HW PC Wars online years ago, glad its become peaceful again. This place was always at its best, when it was a true compassiate peer to peer group, as Peter really intended it to be. At one point, as you and some of the old timers remember, we had one too many "experts" engaged in massive ego wars against one another. I don't miss any of that.

my greatest fear is knowing that at some point, I will no longer be able to drive. Been driving for over 50 years, one of my few pleasures. I did buy myself a nice toy in January, perhaps my last new car (or car period). Bought a new Lincoln Continental Black Label Edition, with every single option that was available. According to my Lincoln dealer, it is one of only ten like it in the entire US. Aside from being beautiful and mega high tech, and ever so comfy, it has the twin turbo 400 HP engine with AWD, and all the driving assistant options, which keep me safer. The car will all but drive itself, literally. Made a rare trip to Charlotte a few months ago, and coming back on a very crowded I-85, back to Greenville, SC (110 miles), used the adapative radar guided cruise, and never once touched the brake pedal or gas pedal. The car would react and make better decisions then I could possible do. Boys and their toys.
Posted 8/1/2019 7:14 AM (GMT -7)
David,
Boy! Replying to you and thinking about your situation, as is so often the case, while drinking a cup of tea!
I just had a look at the spec for a Lincoln Continental Black Label Edition: Not bad!
Glad you can still drive too.
Alf
Age dx48
04/09 PSA 8.6, DRE neg. Biop 2/12 pos. G6
07/09 RALP in Amsterdam NL
PostOp G=3+4 Bladderneck &SVI. T3b. No PNI No vasc.inv. Clear margins
09/09 No pads
07/12 1 pad per day
11/09 PSA 0.1
03/10 PSA 0.4
04/10 CT.
Summer/10 66Gy SRT
Sep 2010 PSA<0.1
Mar 2015 PSA<0.01
Mar 2017 PSA 0.005 (new lab)
Mar 2018 PSA undectable
A bit of ED. Leak pee during sex!
Use Pads 1 day & 1 night
Posted 8/1/2019 10:21 AM (GMT -7)
David, I’m really sorry to hear about your latest troubles. As always I wish you the best.

Jim
Forum Moderator-Prostate Cancer. Age 62 (71 now), G 3 + 4 = 7, T1C, PSA 4.2, 2/16 cancerous, 27cc. Brachytherapy 12/9/08. 73 Iodine-125 seeds. Everything continues to function normally. PSA: 6 mo: 1.4, 1 yr: 1.0, 2 yr: .8, 3 yr: .5, 4/5 yr: .2, 6-10 yr: 1. My docs are "delighted"! My journey:
https://www.healingwell.com/community/default.aspx?f=35&m=1305643&g=1305643#m1
Posted 8/1/2019 6:55 PM (GMT -7)
David truly sorry to read about the health challenges you are dealing with.......
New and not sure I am posting in right place or not

I had HDR Brachytherapy (radiation seeds) at UCLA in March 8 and 15th 2018 for PC T2a 3+4=7 in one core 3 cores out of 17 3+3 ..OAR Device used to protect bladder....started getting pain on urination about 90 days ago, some blood urine seen a month ago , pain on urination Screened for bladder cancer....7/26 no tumors found in bladder or euretha , no cancer no protein found in urine NMP22 and no antigen in BTA urine Test, CT PET Scan Abdomen/ Pelvis..Cystoscopy 7/30/19 found no abnormalities ,PET SCAN just bilateralperinephric stranding and R. posterior lateral bladder diverticulum....significant blood in urine following cystoscopy last nite by local Urologist.....drank tons of water ....until urine clear.....14 hrs later a whole lot of blood in urine back and relentless discomfort in lower right abdomen pelvic area....local Urologist says if blood in urine and pain in right pelvic area does not let up in a week come back in......ask for Pyridium prescript which reduced urine pain...Now fear Chronic Cystitis......requiring annual cystoscopy due to radiation damage.
Has anyone developed pain and discomfort in abdomen after cystoscopy? Should I wait a week if discomfort in abdomen pelvis right side and blood in urine does not let up or perhaps see Dr at major urology clinic like Stanford or UCSF?
Posted 8/2/2019 10:20 AM (GMT -7)
David, sorry to hear of the new addition to your medical issues. I remember your long fight for VA benefits. Wishing you well from a former VP sailor.
Jim
Age 73
-2002-PSA 9.4, 5 of 10 cores 30-50%
-RP 2002 PT3B N0 MX Gleason 3+4 75% left small focus rt
-low 0.01 slow rise to 0.4
-SRT 2010 1 lymph node. Casodex 3 months
-0.00 thu 2014
-0.02 Oct 14; 0.2 Oct 16; 0.51 Jan 17; 2.46 Jan 18,
-6.62 May 18 enlarged lymph node start Firmagon;
-0.45 Jun; 0.02 Aug '18;
-0.02 May '19 Start ADT vacation
Posted 8/2/2019 3:00 PM (GMT -7)
Not an easy hand you've been dealt, David. Probably Agent Orange, plus could be lots of other things contributing. Life ain't fair.

However, as one vet to another, "Don't give up, don't ever give up."

God bless and keep you.
72years old @ Dx, LUTS for 7 years
Ulcerative Colitis since 1973
TURP 2/16
4 cores; G 3+3, one G3+4
RALP 7/17 G3+4 Organ confined
pT2c pNO pMn/a
PSA .54 4 months post RR
ercMRI & DCFPyL PET Scan @ NIH/NCI
1" tumor in cavity at apex No mets.
IMGT 70.2 GY, 2ADT, over 5/18
Radiation proctitis & Ulcerative Colitis flared
PSA <.006 9/18, .054 11/18, .070 12/18, .067 2/19, .078 5/19, .074 7/19
Posted 8/2/2019 3:20 PM (GMT -7)
Wishing you all the best.
Posted 8/2/2019 10:17 PM (GMT -7)
Same from us Downunder David. We are sending all our very best and hope you continue to get much joy from that amazing new toy of yours. It sounds incredible!
Dx May 2016 age 57. PSA 23.4
DaVinci RARP 1 July 2016
G 4(50%)+3 = 7 (Grade group 3)
Large TZ Tumour (apex to base) - approx. 30% of prostate
pT2c N0
PNI- EPE- SVI-
Lymph invasion (x 8) not identified. No positive margins.
PSA's to June 2017 = <0.01
28 June - Aug '17 = 0.01 :-(
Nov '17 = <0.01!
Mar '18 = <0.01
Aug '18 = <0.01
Jan '19 = <0.01
Jul '19 = <0.01
Posted 8/3/2019 7:34 PM (GMT -7)
David: Good to hear from you again as it has been awhile. You have had very little to cheer about since 2008 with one exception, you are here to share with us. And, on occasion, I see your advice to others which is greatly appreciated. I will always pray that journey will change directions as you have certainly earned it.
Posted 8/6/2019 6:06 PM (GMT -7)
David, I hardly go on here now but I've been reading your posts since we started about the same time in 2008. So sorry for the hard time you're going through. You've been a major inspiration in my journey. Just want to thank you for all your posts and all the information you shared along the way. Much appreciated!
Wishing you well.
PSA 12/06=1.6 12/07=2.1 5/08=2.6
Biopsy 6/4/08 12 core 4 Pos 15%,15%,8%,3%
Diagnose@Age 51 Gleason 3+3=6 Bone & Cat Normal
Lapro Surgery 8/18/08 at MSK
T2c organ confined pos apical margin GL 3+3 = 6 (tert 4)
Catheter removed 9/2
No cont/ED problems from get-go.
Post op PSA
10/08 < .05
12/08 <.05
12/08 <.05
6/09 0.01
9/09 0.01
12/09 0.01
4/10 0.01
8/16/10 0.02
Posted 8/6/2019 8:45 PM (GMT -7)
David, relative new comer here. Wishing you only the best as you keep up the fight.
PSA 4.1 11/2017 (age 63)
DRE 1/2018, nodule one side
PSA 8.1 1/2018
mpMRI 2/2018, PIRAD 5
Biopsy 2/2018, 12 core + 2 target cores
DX 3/2018 (age 63)
Initial G8; G9 (4 cores 4+5, 1@4+4, 5@4+3) 6/18 JHU 2nd opinion
PSA 7.2 3/2018, 1.73 6/2018, 1.38 7/2018, 0.47 10/2018, 0.20 12/2018
Lupron 4/18 to 10/19
IMRT 8/18 (23 fractions, 46 Gy)
LDR 10/18 (110 Gy)
Posted 8/7/2019 4:40 PM (GMT -7)
Bohemond - ran across someone recently from my sister squadron. I was in VP-17, he was in VP-50, both serving at the exact same time, in a Walmart of all places. Small world.
-------------------------------------------------
Thanks for all the replies, too many for me to answer individually, all appreciated. Will be here 11 years this October, hard to believe
Posted 8/11/2019 7:48 AM (GMT -7)
David, I’m a bit late to this thread, just want to say, you are an inspiration to all here, the way you persevere with all the issues you face is amazing. I’m sure you would rather not be an inspiration under these circumstances, but you are a brave brave , very strong , man.
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
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