NEW UPDATE 12-16-17

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Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 12/16/2017 2:17 PM (GMT -6)   
Sorry for a long delay on an update here.

Much has taken place.

Was dx. with my 5th cancer. Had MOHS cancer surgery done this past Monday. I had a fast growing lump on my forehead above my left eye. They thought it was the dreaded porocarcinoma again, but instead, was a Basel cell tumor. The surgeon said he got all of it after a 2 1/2 hour surgery. Still healing from it, got 6 stiches.

After months of testing with 2 neurologists, dx. finally made, I do have Parkinson's Disease, and probably what they call Parkinson's Plus. There are at least 5 variants of the Plus, won't know for sure which until about 3 months from now. All of them lead to rapid progression, and can hasten dementia. Still stunned with this dx. For you other Viet Nam Vets, Parkinson's is already on the Agent Orange disease list.

Monday, having a contrasted CT done of my colon on the left side. My PCP is worried I may have a tumor growing there, or it could be some new adhesions from my prior radiation damage. Said it was possible my PC has made its way there. Sure don't want another major surgery ahead.

Still in therapy with VA for major PTSD, been going over 1 1/2 years weekly sessions. My Double Depression has been reduced to just Major Depression, the Lithium seems to be keeping me somewhat in balance.

All for now. I lurk on rare moments.

English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2211
   Posted 12/16/2017 3:02 PM (GMT -6)   
Wow David your list of troubles is getting to be too long to comprehend. I hardly know how to respond!
All I can say is that you are regularly in my thoughts, and I hope you can enjoy the holidays in some way or other.
I know you don't drink, but maybe you can find something festive to enjoy and to raise a glass with, something like the very tasty non-alcoholic Ginger wine from the UK that I've been enjoying when I don't feel like the alcoholic version, or maybe one of the very good non-alcoholic beers I can get in the Netherlands these days. A mulled wine can also work if you leave it to boil for too long so the alcohol all evaporates. (I used to do that when the children were little to make a version that they could try - the opposite of what a Scottish friend used to do of adding brandy to the mix to make up for the fact that a bit of alcohol might have disappeared due to the heat!)

All the best
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)
A bit of ED. Leak pee during sex!
Use Pads 1 day & 1 night

Progressing
Regular Member


Date Joined Aug 2017
Total Posts : 184
   Posted 12/16/2017 3:38 PM (GMT -6)   
David,
Wishing you well. Good news about the basal cell.
I would second Alf’s suggestion of mulled wine, with spices.
Thank you for your service.
Richard
Age 75, excellent health except PCa
7/20/17, Biopsy, 5/12 cores PCa all right side, none on left, Gleason 4+3, PNI
PSA 20.44
MRI and CT no evidence of metastasis, no lymph nodes, no seminal vesicles, focal bulge
Laparoscopic surgery 10/31/17, left nerves spared
11/9/17 catheter out, continent, pathology report T3aN0, G4+3, focal EPE, no cancer at any surgical margins
12/14-psa 0.10, redo late Jan

John_TX
Veteran Member


Date Joined Jan 2015
Total Posts : 1054
   Posted 12/16/2017 3:50 PM (GMT -6)   
Purgatory said...
.. For you other Viet Nam Vets, Parkinson's is already on the Agent Orange disease list.....
I had no idea of that linkage. Did you read about liver flukes discovered in Nam vets from eating undercooked fish and shellfish? I'm almost positive I never ate any seafood while I was there.
DX - 1-13-2015 (age 66) -- PSA 4.02 (9-16-2014) to 4.38 (12-5-2014)
RALP on March 2, 2015
G6 to G7(3+4) to G7(4+3)
Stage pT3aN1
12/2017 PSA < 0.1
7/31/2015 HT - six month's injection of Lupron
ART 11/2015, 33 sessions

Bobby Mac
Veteran Member


Date Joined Mar 2016
Total Posts : 691
   Posted 12/16/2017 4:01 PM (GMT -6)   
Wishing you the best!

Bobby Mac
Age: 69 at PC dx, PSA 6.7 Biopsy: 2/16 13 of 14 Positive, - RALP 4/16 Path:EPE, 2 + margins, Gleason 4+3=7, 50% of gland, Stage pT3a N1, nodes 2/10,+, 68 Ga PSMA 8/16 left node +, bed +, Lupron 8/16 - 6/17, Firmagon 7/17, uPSA 6/16, 2.41, SRT completed 12/16, PSA 6/2016, 2.6, 7/16, 2.2, 8/16 .6, <0.1. since 10/16, 1/17 T=43 5/17 T=34, 6/17 T=25, 7/17 T=25, 9/17 T=48

Magaboo
Veteran Member


Date Joined Oct 2006
Total Posts : 1210
   Posted 12/16/2017 4:57 PM (GMT -6)   
Hi David,
Once again I'm speechless about this terrible journey that you have to bare. I do, however, wish you all the very best possible under the circumstance.
Please try and enjoy the holiday season as best you can. My thoughts are with you.
Your old friend and soldier in this obscene battle, Magaboo.
Born 1936. Dx Aug 06.
PSA 7.9, G 3+4=7, 2 of 8.
open RP Nov 06, pT3a, Gleasons 3+4=7, Seminal vesicles and lymph nodes clear.
Catheter out 15 Dec 06, Dry since 11 Feb 07.
All PSA tests in 2007 (4) <.04.
PSA in 2008: Mar.=.04; Jun.=.05; Sept.=.08; at SRT Start=0.1,
SRT completed (33 days-66Gy) 19 Dec 08.
PSA: All 6 monthly tests to date (Dec 17) <.008 - 9 yrs post SRT.

lapilot
Veteran Member


Date Joined Nov 2012
Total Posts : 845
   Posted 12/16/2017 5:26 PM (GMT -6)   
Welcome back!

darn, you are really going through the ringer. At least it is Basal cell!

three 5's and a jack
Regular Member


Date Joined Jul 2017
Total Posts : 386
   Posted 12/16/2017 7:17 PM (GMT -6)   
Purgatory: I know you only from your posts but I wish you well and hope that you can find some peace.

May you share in the blessings springing from the good I have done.

Roger
Looking for the 4th 5
69yo weight 7/1-283# on 10/17 216#
PSA 6.01 6/17 & 6.07 on 10/11/17 and 5.56 on 11/17/17
BX 8/04/17 DX 8/11/17 5/16 cores positive all on left
L mid/base 4/6 4+3=7 25%
L apex 1/2 3+4=7 30%
Sec opinion from UofW same GS7 but called overall 3+4=7
Markers and scans completed Dec 7/8 SBRT Dec 18-22 Swedish in Seattle Dr. Robert Meier

Pratoman
Veteran Member


Date Joined Nov 2012
Total Posts : 5352
   Posted 12/16/2017 7:37 PM (GMT -6)   
Wow. Tough road to hoe. You are one tough guy David. So sorry for all of your troubles.
Dx Age 64 Nov 2014, 4.3
BX 3 of 12 cores positive original pathologyG6, G6, G8 (3+5)
downgraded to 3+3=6 by tDr Epstein, JH
RALP with Dr Ash Tewari Jan 6, 2015
Post surgical pathology – G7 (3+4), ECE, Margins, LN, SV all 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
Decipher test, low risk, .37 score

Wings of Eagles
Veteran Member


Date Joined May 2013
Total Posts : 693
   Posted 12/16/2017 8:02 PM (GMT -6)   
David,
I hope only for healing of both your body and mind, you are a very courageous person and an inspiration to us all on this site and on others. Some things we all try to fight off, some things will just follow a natural course no matter what, but coming from this man of faith to you, from my heart, I say just keep the Faith, keep fighting, keep strong and I know you will posting to us for a long time to come.

Wings of Eagles aka Dan in So Cal.

Post Edited (Wings of Eagles) : 12/17/2017 2:13:22 PM (GMT-7)


60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2215
   Posted 12/16/2017 8:10 PM (GMT -6)   
Good to hear from you David, and I hope that you find moments of peace through all of this.
Michael
Dx with PCA 12/08 2 out of 12 cores positive 4.5 psa
59 yo when diagnosed, 61 yo 2010
Robotic surgery 5/09
Gleason upgraded to 3+5, volume less than
started ED tx 7/17, slow go
Post op dx of neuropathy
T2C left lateral and left posterior margins involved
3 months psa.01, 6 month psa.4
Started IMRT Jan. 2010 72gys
7mpost SRT PSA.27 12 m.19, 21 m.27,May 2013 PSA 27 Mets,began HT, Ztyiga 3/10/15

browntrout
Veteran Member


Date Joined Apr 2014
Total Posts : 557
   Posted 12/16/2017 8:55 PM (GMT -6)   
Purgatory: Glad to hear even the slightest bit of good news for you. As always, you are in my prayers.

tdnjam
Veteran Member


Date Joined Jan 2013
Total Posts : 521
   Posted 12/16/2017 11:02 PM (GMT -6)   
David, I think I am as stunned as everyone else. How I wish something good for you. You continue to be in my prayers and I can only hope those prayers are answered in a positive way for you.
Age 62, Diagnosed at 58
6/12-PSA 4.6, Biopsy 12/19/12 Positive 4 of 12
DaVinci 2-14-13
Updated Gleason 4+3=7
First post op PSA 4-5-13 Undetectable
15 month post op PSA 5-16-14 0.3
Started SRT 6-25-14
Ended SRT 8-12-14
1st post SRT PSA 9-24-14 0.1
1year post SRT PSA 9-18-15 <0.1
18 month post SRT 3-10-16 <0.1
2 year post SRT 9-26-16 <0.1
31 month post SRT 5-1-17 <0.1

MDNative
Regular Member


Date Joined Nov 2015
Total Posts : 174
   Posted 12/17/2017 12:24 AM (GMT -6)   
My aunt's husband is a retired 34 year USMC bird colonel. Much over in 'Nam. He's had colon cancer, which seems to have been successfully treated, and now has Parkinson's, which is getting increasingly worse, and now some early dementia issues. And his PSA is slowly rising.... The VA approved the colon cancer and Parkinson's disease for his payments, but what a shame! He's 80. Nasty stuff our government was dropping on their own.
51 yoa at PCa Dx--Some family history of PCa
From 9/2013 to 3/2015 PSAs between 4.85 & 6.7, TRUS Bx-neg 12/2013, 12/2014 PCA3:38, 3/2015 switched from local urology group to Johns Hopkins, PSA 5.8/FPSA 17.4/PHI 28.4, 3/2015 mp3T MRI & Fusion-Guided Bx @ JH, 2/14 cores pos, Bilateral, <5% involvement, GL=6, RRP: 8/2015 @ JH (Dr. Carter)

Post-op path – Upstaged to G7 (3+4), confined throughout. Margins, LN (11), SV, EPE, all negative. Additional findings: HGPIN

pT2C NO

PSA 11/15 <0.1, 5/16 <0.1, 9/16 & 3/17 both .02 (different assay), 9/17 <0.1 again

Post Edited (MDNative) : 12/17/2017 12:19:47 PM (GMT-7)


Skypilot56
Veteran Member


Date Joined Mar 2017
Total Posts : 570
   Posted 12/17/2017 5:59 AM (GMT -6)   
Good Morning David I'm pretty new on here only been just a year but your story and what you have had to endure is more than what 20 people should experience in their lifetime! I'll be starting SRT tomorrow and am also on ADT when I was reading thru some of your posts saw that you lost about 15lbs during SRT was wondering were the radiation techs ok with this? They told me the most they wanted me to change my weight up or down was 5 to 8 lbs when I was getting my synchronization as this would move things around to much inside. Wishing you and your family a very very good Christmas!!

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 Clinic Mn
Path Report: Gleason 9, pt3b, Seminal vessels and one nerve removed, negative 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 started
12-13-17 psa <0.10

Saipan Paradise
Veteran Member


Date Joined Sep 2017
Total Posts : 507
   Posted 12/17/2017 10:35 AM (GMT -6)   
David,
I too am fairly new here, but I always value your posts and was glad to see your name again. I’m astounded by your strength in the face of more hardship than one should have to bear. Will keep you in my thoughts.
—Richard in Saipan.
Age 60 at dx
Dx July 2017 after biopsy G8 (4+4), 5/13 cores, bone scan clear
RARP Aug 11, 2017 (Dr Patel)
Post surgery pathology: pT3a, tumor 30% of gland; EPE+, SV- and 3 lymph nodes clear
PSA 1/2016, 2.9; 4/2017, 7.2; 9/25/2017 (first post-RARP), 0.13; 10/10/2017, <0.05

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7699
   Posted 12/17/2017 12:41 PM (GMT -6)   
David,

Thanks so much for posting an update. I check your profile every few days to see if you've posted, so it's good to hear from you.

So sorry to hear things are not getting any better - life is often a tough pill to swallow. I wish I could offer you solace of some sort, but I am at a loss other than to say I think of you often, as I do of our mutual friend Barb. May peace find you and give you some respite from these trials.

My Lupus is remaining quiet, as long as I concentrate on restful sleep, moderate exercise, and healthy eating. Any kind of stress is an issue, so I remain as low-key as possible, while still trying to enjoy life. Just had a couple of friends help me plant 100 tulips, so am looking forward to spring.

Gentle hugs and healing thoughts,
Lynnwood

An38
Veteran Member


Date Joined Mar 2010
Total Posts : 1147
   Posted 12/17/2017 7:54 PM (GMT -6)   
So sorry to hear of your most recent troubles David. Only positive thing was that the MOHS surgery was for a Basel cell carcinoma not a squamous cell or even worse a melonoma. A friend of mine had a MOHS for a melonoma on his face and he is doing well.

Would you say that these new diagnosis explain all of your mysterious symptoms?
I specifically mean the nerve issues/loss of strength and the accelerating weight loss?

Regards, and best wishes,
An

81GyGuy
Veteran Member


Date Joined Oct 2012
Total Posts : 2163
   Posted 12/18/2017 9:53 AM (GMT -6)   
David –

With the passing of another year, we again take stock of ourselves and where fate and time have brought us.

For you we see that your fight continues, but also that your remarkable resolve and determination do as well. This in spite of serious medical issues, some of them unfortunately newly found, that would overwhelm a lesser man.

But you continue to persevere. God bless you for that.

I chose this greeting card because of its inclusion of the word "healthy" in it. May it be so for you in 2018!

/www.flickr.com/photos/khl_kew_01/25027112468/

May 2018 indeed be the year when, despite the daunting challenges you face, it all turns around for you, the road becomes smoother, and your burden becomes lighter!
Age: 71
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

DJBearGuy
Veteran Member


Date Joined Dec 2008
Total Posts : 714
   Posted 12/18/2017 10:12 AM (GMT -6)   
Hello David,

Sorry about your problems but I'm glad to hear you're still with us.

I've been gone so long that the forum seems not to have my profile any longer, so we'll see if it lets me post this.

DJ
Diag at 53. PSA 2007 about 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 7th day, in 8th day, out 14th day after neg cystogrm
Path: pT2c; lymph nodes neg; margins involv; 41g,
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, 8/16-0.3, 10/16-0.3

Tim G
Veteran Member


Date Joined Jul 2006
Total Posts : 2290
   Posted 12/19/2017 12:22 PM (GMT -6)   
Thanks for your message, David. Take care, hang in there and keep us updated.
Age 69 Diagnosed G6, age 57
Prostatectomy (open)
PSA <0.03 for 11 years

HitchHiker
Regular Member


Date Joined Nov 2015
Total Posts : 188
   Posted 12/19/2017 12:47 PM (GMT -6)   
Purgatory said...
After months of testing with 2 neurologists, dx. finally made, I do have Parkinson's Disease, and probably what they call Parkinson's Plus. There are at least 5 variants of the Plus, won't know for sure which until about 3 months from now. All of them lead to rapid progression, and can hasten dementia. Still stunned with this dx. For you other Viet Nam Vets, Parkinson's is already on the Agent Orange disease list.


Sorry to hear of your continued adversity in the health department dude. My uncle, also a VV and career army helicopter pilot, has very bad tremors due to exposure to AO during the war. His docs have gone back and forth on whether he has PD or not, but it's clearly gotten worse over the years. No problems with dementia or speech yet thankfully.

Here's to hoping you find some joy during the holiday season brother.
Warm Regards-CJ-age 45

Dx 11/13@42YO - PSA 5.8, -DRE, GS6, MPMRI G-Bx@JH - 1/12 cores+@<5% - AS started
11/14@43YO - NIH T3 ERC-MPMRI, PSA 5.84, PSA-D 0.127
5/15@43YO - Bx, -DRE, PSA 6.41, 6/18 cores+, unilateral all G6@<5-75%
2/16 - HDB-m@FCCC, PSA 6.6, stage T1C
PSA - 6.6 2/16, 6.0 8/16, 2.0 2/17, 8/17 0.8

My Story

worriedabouthubby
Regular Member


Date Joined Aug 2012
Total Posts : 346
   Posted 12/19/2017 9:12 PM (GMT -6)   
Thank you for sharing your news David. I'm so sad to hear that your troubles have multiplied. You remain in my thoughts and prayers. For the festive drink suggested above try this- (we had it at our wedding 40 years ago yesterday)- 2 2-liter bottles of cheerwine soda and 1 large can of pineapple juice. Makes a great Christmas punch.
Have a Merry Christmas and a Healing New Year.
Hubby's details- diagnosis Age 57
8/27/12 PSA 81 8/30/12 Gleason 5+4=9 10/9/12 Final stats- G 4+5=9 T3a N0Mx tumor both lobes, size 3.3x3.2x2.6x , positive margins extensive perineural invasion, extracapsular extension, 11/21/12 1st post-op PSA 3.8 CT -lymph node involvement PSA now doubling every 4 months= as of 8/30/17 = 0.1

Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 12/20/2017 8:16 PM (GMT -6)   
David,

I am sorry to hear of your latest troubles, but I know you will conquer them or knock them down, as you have so many other setbacks.

I first 'met' you when I joined near nine years ago. Then, and now, are one of my heroes and one of the strongest, bravest men I've ever had the privilege of knowing. And, to top it off, you're an accomplished, writer, accountant and weekend sailor.

Blessings and Merry Christmas,

Sheldon (AKA Sleepless)
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
From "knock out" to wake up in recovery less than two hours.  Actual surgery 70 minutes
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
 
Oct 1st 09 -- dry at night, during day some stress issues.
Oct 31st padless 24/7 
 
First post op PSA Sept 09  less than 0.02
PSA on Oct 23, 2009 less than 0.02
PSA on Jan 8, 2010  less than 0.02
PSA on April 9, 2010 less than 0.02 
PSA on July 9, 2010 (one year) less than 0.02
  

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 1/2/2018 5:55 PM (GMT -6)   
January 2, 2018

Wanted to thank each and everyone you that read my update and to those that replied.

Still fighting the fight, seems endless after all these years.

Last Friday, went to have the stitches removed from the skin cancer surgery, no problem, but they noticed a large area at the top of my neck at the back of my head. Just like that, a new biopsy was taken. Going to take 10 days to get results. Doctor was puzzled at what it looked like.

Friday, I go for a special MRI of my lower spine my neurologist ordered. Two appointments with the VA tomorrow. Like being a full time patient.

Thanks again
Not sure what became of my signature? Didn't realize it disappeared.
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