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Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 10/30/2010 12:38 PM (GMT -6)   
I am now 38 days out of surgery for the Urostomy.  I am well over the raging UTI I had a week after coming home from the hospital, those were terrible times.  I am getting stronger, daily, but in little tiny increments.  I am fully complying with all my home nurse, physical therapist, and uro have instructed me.  Still under a 5 lb max weight limit.  That's hard to keep, but I must.
 
A week from this coming Monday, I can legally drive again per my doctor.  Still having trouble with dizzy spells, some has to do with a bigger drop in my blood pressure after losing so much weight, so fast.  Have lost a total of 40 lbs over the past 45 days.  They are still having me eat a lot of protein.  Its amazing how much muscle mass I lost in the first 3 weeks.  I had strong legs and arms prior, but now I look like a stick person, lol.
 
Havent been on any prescription pain meds for 3 weeks now.  3-4 advils a day keep check on any remaining surgical pains.  We are making progress on the ostomy devices leaking.  I have been testing one currently, and made it to day 5 without a leak so far, which the mfg would consider optimal.
 
Still have zero pain in the bladder, bladder neck, penile and rectal areas, which is great.  And since my bladder has been disconnected and sealed shut, I can never ever have a bladder spasm.  The main purpose of this drastic operation has paid off so far.
 
As a side note, my "wee one" has woken out of his post surgery coma in the past week, and I have been waking up almost every morning with full wood.  I am, however, too sore and weak at this time to want to put "him" to use.  A little too soon.  We are all amazed, that despite all I have been through the past 2 years, that there is not even a hint of ED.  I realize that I am fortunate, and that this has to be some kind of extreme exception to the norm.
 
I still have a lot of radiation fatigue, even 11 months later, but I had that before this surgery.
 
I am hoping that when the new year starts, I will feel like a million bucks.  Then in Feb, will check that blasted PSA again, and see what
is going on there.  Until then, I simply don't care and don't want to know.  I am focused on this recovery, and the upcoming holidays.
 
David in SC
 
 

Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4149
   Posted 10/30/2010 12:43 PM (GMT -6)   
David, glad to get your update and that things are getting better for you.  I also hope that you feel great after the holidays and, who knows, maybe that million bucks will be real from your litigation!
 
In any case, I'm glad your "extended absence" from HW was not so extended after all.  I think James won the pool on when you would be back!
 
Best regards,
 
Tudpock (Jim)
Age 62 (64 now), G 3 + 4 = 7, T1C, PSA 4.2, 2/16 cancerous, 27cc. Brachytherapy 12/9/08. 73 Iodine-125 seeds. Procedure went great, catheter out before I went home, only minor discomfort. Everything continues to function normally as of 9/10/10. 6 month PSA 1.4, 1 year PSA at 1.0. My docs are "delighted"! My journey:
http://www.healingwell.com/community/default.aspx?f=35&m=1305643

daveshan
Regular Member


Date Joined Jan 2010
Total Posts : 363
   Posted 10/30/2010 12:46 PM (GMT -6)   
David,
Glad to hear things are looking up a bit. Hope it continues.
Dave in Durango CO

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 10/30/2010 12:54 PM (GMT -6)   
tud,

when i vacated hw, i was so very ill and weak, now that my mind has come back, boredom is my worse enemy. there's only so much reading, researching, crossword puzzles and piddling around i can do, since i can't drive or walk much at this time. i am in this for the long haul.

i had said from day one with my PC, that if its going to take me out, i will go down fighting. for nearly 2 years now, i have been handed everything but the kitchen sink, and i keep on popping up, lol. i am either tough, stubborn, or stupid, perhaps a mix of all 3, lol.

david
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 10/30/2010 2:02 PM (GMT -6)   
David, congratulations on coming out the other side of this terrible ordeal. And thank you too for posting the details of your journey -- I'm not sure I would have been able to do that.

You have made little matters like rising PSA and ED seem trivial by comparison. :-)

English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2215
   Posted 10/30/2010 2:09 PM (GMT -6)   
Glad the pain in bladder etc has become a thing of the past.
Hope the BP/dizziness will sort itself out soon too.
May be it's the wood: perhaps there's not enough blood in your body for both of you so that when he stands up you fall down.

Alf

Magaboo
Veteran Member


Date Joined Oct 2006
Total Posts : 1210
   Posted 10/30/2010 2:11 PM (GMT -6)   
Hi David,
 
Finally some long awaited good news from you. So glad to hear that you're feeling a lot better now and that soon you'll be your old self again (although with some minor modifications :-)). You are a man of extremes. Extreme pain and extreme wood. Have a wonderful holiday season.
All the best to you.
 
Your friend,
Mag

Born 1936
PSA 7.9, Gleason Score 3+4=7, 2 of 8 positive
open RP Nov 06, T3a, 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 tests in 2008: Mar.=.04; Jun.=.05; Sept.=.08; at SRT Start=0.1, Salvage RT completed (33 days-66Gy) 19 Dec 08
PSA: in Jan 09 =.05, all tests to date (Jul 10) <.04

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4106
   Posted 10/30/2010 2:45 PM (GMT -6)   
David, Good report buddy.. It is good that your getting bored that tells us you are feeling better. You have no idea how happy we all are that you are getting stonger and more importantly not having that terrable pain that you have had to deal with.

Take care my friend. I might also advise as long as you are dizzy..(dont drive)

Cajun Jeff
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1% cancer core
10/08 Nerve-Sparing open radicalSurgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clea
r3 month: PSA <0.1
19th month: PSA <0.1
Only issue at this time is ED

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 10/30/2010 2:56 PM (GMT -6)   
piano - thanks, i dont minimize rising psa, including my own, but i am simply choosing what battle to fight right now. my recovery is one that i can contribute to. on the ED front, with us surgery guys, its like a lotto ticket, while I may have won on that one, I sure had a rough time with other parts that most ment don't have to.

alf - my dr and the nurses all feel its simply the rapid weight loss on the dizziness, its not normal to lose that much weight that fast

thanks mag, its nice to have some positive news to report, seemed like i always had bad news in the past, glad to share the good too

thanks too, to dave from CO

jeff, thanks. my uro and i jointly agreed to extend my driving ban a couple more weeks after i saw him. i wont drive until i feel right about it, not going to risk my life or others on the road. with my wife and 3 adult children handy, there is always someone that can drive for me or to run an errand. when the time is right, i will start out on short, local errands until i am comfortable again.
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2842
   Posted 10/30/2010 3:33 PM (GMT -6)   
David
- glad to hear the progress news - sorry to hear about the continuing dizzy spells - I can imagine what your body is up to reacting to the sudden weight (and body fluid ) loss... maybe that could be part of the dizzy-imbalance response...

-one truck driver at work started getting dizzy spells at work - and was forced to go through test after test before he could drive again ... to make a short story shorter - after all the MRI's, Catscans, bloodwork, etc... - the neurologist came up with this scenario ...
- when men get to be 50+ in age, some fluid around the brain is reduced, so the brain knocks around a bit with each motion ....

- so all the driver has to do is to break up his motion into segments - and slow down a bit - so the brain has a chance to rest in the new situation and orientation ... ie. standing up .. moving head left to right... and so on...
-he is now back and able to drive again - and has had no further re-occurance of the dizzy spells, double vision,,, etc ....

-wishing you all the best as always
BRONSON
Age: 55 -gay with spouse, Steve - live in Peteborough, Ontario, Canada
PSA: 10/06/2009 - 3.86
Biopsy: 10/16/2009- 6 of 12 cancerous samples, Gleason 7 (4+3)
Radical Prostatectomy: 11/18/2009
Pathology: pT3a- gleason 7 -extraprostatic extension -perineural invasion -prostate weight -34.1 gm
Post Surgery-PSA: April 8, 2010 - 0.05 -I am in the ZERO CLUB
Sept 23, 2010 -0.05 - again -hoorah !

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7203
   Posted 10/30/2010 3:51 PM (GMT -6)   
David:
 
FINALLY, AN EXCELLENT EXCELLENT REPORT.
 
That is just great news. It is certainly your best medical update ever!
 
Get some rest; you still require a lot of that.
 
Mel

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 10/30/2010 4:14 PM (GMT -6)   
thanks bronson, that was an interesting story. i had no dizzy problems prior to this surgery

mel, all i do is rest, tired of resting!! i need something productive to do, been home now 32 days from the hospital, getting stir crazy, espec. during the long evenings when my wife is at work.

david
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

6071
Regular Member


Date Joined Jul 2008
Total Posts : 112
   Posted 10/30/2010 4:43 PM (GMT -6)   
Hi David,
Glad to hear things are looking up a bit keep up the good work
I can fully understand your decision to wait
until next year to get your next PSA test. I hope that you'll have a wonderful
Christmas and a Happy New Year and get a great PSA test result next year keep up the good work
sorry Thanksgiving and Christmas
Age 61 at DX
Biopsy 7/2008 Positive 1 of 12 cores positive 3+4 5% To 10%
open Radical Prostatectomy 15/10/2008
Stage pt2c
Post op staging Gleason's Score 3+4=7
apical margin is focally positive
no extraprostatic extension
Seminal vesicles and lymph nodes clear
Catheter out on the 13/11/2008
4 week PSA < 0.1
26/1/2009 < 0.1
20/4/2009 < 0.1
11/6/2009 ultra sensitive psa 0.07
20/7/2009 < 0.1
26/8/09 Starting photon 3D CRT
13/10/09 Radiation Finished
25/11/09 ultra sensitive psa < 0.05
26/4/10 ultra sensitive psa < 0.05

60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2222
   Posted 10/30/2010 6:22 PM (GMT -6)   
Good to hear from you David and it sounds like your seeing some progress. Ready to see this year pass as well.
Michael

Squirm
Veteran Member


Date Joined Sep 2008
Total Posts : 744
   Posted 10/30/2010 8:25 PM (GMT -6)   
awesome, I'm very happy to read the recovery is going as expected. Must be very nice not having those dreaded bladder spasms every day.

Aimzee
Veteran Member


Date Joined May 2010
Total Posts : 1404
   Posted 10/30/2010 9:10 PM (GMT -6)   
How nice it is to come here and read your progress report.  We are happy that you are on the road to recovery and looking ahead to a brighter future.  Rest as needed - how does that sound?  Any interesting sports you enjoy on TV?  Isn't it so much better being bored than in that severe pain.  You have been through so much.
 
God bless you, David.
 
Best wishes,
Aimzee
Husband Ron, age 63
4/1/10 PSA 5.5 Prostate size = 50 cc.
Biopsy on 4/20/10 12 samples... Adenocarcinoma: 3 positive on right side, one core left base (5% ` 0.5 mm) - two cores of left lateral mid
(20% ~ 2mm, 10%, 10% ~ 1mm) - No Perineural Invasion
Gleason 6 (3+3)
Bone Scan/CT Negative (2 lesions on liver)
8/18/10 - Da Vinci Prostatectomy
Post Op: Gleason 7 (3+4)
Negative surgical margins and lymph nodes
Both nerve bundles spared
Catheter - 13 days
ED / Day time incontinence.
Post Surgery PSA 8 weeks - .01

tallguy
Regular Member


Date Joined Oct 2009
Total Posts : 417
   Posted 10/31/2010 6:32 AM (GMT -6)   
David,
Since I am pretty much back to normal after my two year journey from RP to Sling to AUS I am not back on HW very often. One reason I check is to see how you are progressing. You are certainly an inspiration to all of us. Even though we have some issues to see how you have stood up to impossible challenges should teach us all a lesson that we can overcome all odds.....All that wood proves you still have a mountain of fight left in you. I would settle for a little sawdust LOL but I have a few years on you.
Happier days are ahead!
 
66 year old male
PSA jumped 3 to 8 Jan 2008
pt2b NO Mx with a Gleason score 3+3=6.
DaVinci RP, 7/23/08. Tumor type: Acinar
size 5.5 cm x 5.7 cm weight: 77 gm.
Incontinence & ED. Dry nights , no control during day.
FUDS and cystourethroscopy testing 10/09.
24 hr pad wt. 219gm. AUA sympton index 13/35=moderate
Virtue sling surgery 2/3/10 NYU med center
Appeared to help but gradually returned to pre surgery condition.
Back to 3-4 pads/day.
Latest PSA 4/1/10 negative.
AMS 800 artificial urinary sphincter implanted 7/8/10 at U of MI.
AMS 800 activated 8/25/10 Dry for first time in 2 years.
Links to my journey posts:
http://www.healingwell.com/community/default.aspx?f=35&m=1847812
http://www.healingwell.com/community/default.aspx?f=35&m=1710681

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 10/31/2010 7:05 AM (GMT -6)   
6071 - thanks

you too, michael and squirm

aimzee - i like the "rest as needed" phrase better. yes, i use to be equally bored, but in constant severe pain, now i am bored with little and easy to manage pain from time to time

tallguy - your own journey is an inspiration too, to all those with long term incontinence. my gift of wood will be put to good use once i am well
enough to enjoy it again.
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

Ger42
Regular Member


Date Joined Apr 2010
Total Posts : 189
   Posted 10/31/2010 7:50 AM (GMT -6)   
Glad to read you are doing better. You are an inspiration to all of us. Thank you for sharing your journey with us.
Gerry
Age 68 weight 185 height 6'
Samples taken 4/19/2010 sent to Bostwick
3 out of 12 samples cancer
1) gleason score 3+3 involving 65%
2) gleason score 3+3 involving 65%
3) gleason score 3+3 involving 10%
PSA 3.5 Mar 19
PSA 2.5 Apr 4
Bone scan clean CT scan clean
Da Vinci 8/24/2010, rescheduled to 8/26, now Oct 12th
God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

JoeFL
Regular Member


Date Joined Oct 2009
Total Posts : 420
   Posted 10/31/2010 9:05 AM (GMT -6)   
David,
 
Great news and welcome back to HW. I told you a number of months ago that you were one tough guy. You discounted that at the time....I hope you realize how strong you are now. I think you are really gonna like 2011. Regards,
 
Joe

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 10/31/2010 9:41 AM (GMT -6)   
thanks gerry and joe, i am hoping 2011 will be my year for good things. 2008-2010 sucked for sure, lol
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

Jerry1
Regular Member


Date Joined Mar 2007
Total Posts : 460
   Posted 10/31/2010 9:41 AM (GMT -6)   
 
 
David,
 
It sure is great to hear some good news.  Sounds like you are finally on the road to recovery.  I hear you about the PSA, I am scheduled to go Tuesday and almost feel I should postpone until after the holidays but with a 2.4 not sure if it would be wise.  They seem to be taking my PSA about every 7 to 8 weeks and it is getting to stressful I am going to tell my oncologist to give me at least 3 months.  Glad to hear you are feeling better.
 
Jerry1  

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 10/31/2010 10:17 AM (GMT -6)   
thanks, jerry, wishing you the best, the whole psa thing can get out of hand if we let it. not good for the mind and soul to get OCD about it
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7203
   Posted 10/31/2010 1:06 PM (GMT -6)   
David:
 
I totally understand your emotions regarding the PSA. I am going for a consultation tomorrow and the thing I dread most is the PSA test.. I will probably request that they NOT do it unless they really give me a compelling reason to do it. My last one was 9/21 and my next one is due on 12/21. I will delay that until first week of January so we can enjoy the holidays.
 
Mel

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 10/31/2010 2:16 PM (GMT -6)   
mel your last one on 9/21 should be current enough for the consultation.
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10
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