INCONTENENCE STILL HERE

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seaofpee
New Member


Date Joined Feb 2010
Total Posts : 17
   Posted 4/27/2010 10:44 PM (GMT -6)   
I haven't posted for awhile have been out of commision. Incontenence still there seems to be getting a little better, it's been 3 months. Along with the pc i have chronic shingles so things aren't  to great. I know this isn't part of prostate cancer but anyone out there have shingles (PHN)? I'am trying for disability with everything going on, trying to find out if anyone has or know of someone who has been disabled with chronic shingles. Thanks.
First surgery October 09, that's when they found psa of 5.4
December biopsy  gleason  7  3+4
January 20 rp
psa 2 weeks after 0.06 Thank God.
I feel blessed.  The surgeon said the cancer was starting to come out of the prostate.
ed. still there no progress uro says pump will help
age 58
cialis caused 3 day headache
surgery done in Denver


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 4/27/2010 10:51 PM (GMT -6)   
Hang in there friend. Took me 8 months on the pads.

Sorry to hear about the shingles. As I recall, they are realted to the mumps virus. Seem like you ought to be able to build up some immunity.

Good luck.
Goodlife
 
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01
1 year psa (364 days) .01


Mavica
Regular Member


Date Joined Jun 2008
Total Posts : 407
   Posted 4/27/2010 11:41 PM (GMT -6)   
1.5 years post-da Vinci, I'm still on one small pad a day. Each of our bodies and health is/are different and resond differently. I can't add anything useful to your conversation about shingles, though.

Age:  60 (58 at diagnosis - June, 2008)

April '08 PSA 4.8 ("free PSA" 7.9), up from 3.5 year prior

June '08 had biopsy, 2 days later told results positive but in less than 1% of sample (Gleason's 3+3=6)

Developed sepsis 2 days post-biopsy, seriously ill in hospital for 3 days

Dr. recommended robotic removal using da Vinci; Surgery 9/10/08

Northwestern Memorial Hospital, Chicago, IL; Dr. Robert Nadler, Urologist/Surgeon

Post-Op Gleason's:  3+3, Tertiary 4; Margins:  Free ; Bladder & Urethral:  Free

Seminal vesicles:  Not involved; Lymphatic/Vascular Invasion:  Not involved

Tumor:  T2c; Location:  Bilateral; Volume:  20%; Catheter:  Removed 12-days after surgery

Incontinent:  Yes (1 light (woman's style) pad per day)

ED: Combination of Cialis and MUSE (alprostadil) once weekly: started 9-27-08

Returned to work 9-29-08 (18-19 days post-op)

PSA test result, post-op, 10/08: 0.0; 12/08: 0.0; 4/09: 0.0; 9/09: 0.0; 3/10: 0.0

 


stxdave
Regular Member


Date Joined Nov 2008
Total Posts : 65
   Posted 4/28/2010 12:17 AM (GMT -6)   
Shingles are related to chicken pox. There is an immunization shot you can get for shingles but I don't know if you can get it if you have a live case of shingles in progress. Our county health service provided the shot for my wife and me because our family physician does not get the serum.

I know shingles are horrible and to be avoided at all costs. My sympathy.
Dx'd 1999, Age 60, PSA 43, Gleason (3+4=7), T3c
42-3d EBRT w/Lupron/Casodex for 24 months.
July 2001 - Intermittent ADT. Lupron only, MDAnderson biopsy revised Gleason (4+5=9).
March 2007 - Diminishing returns with Lupron, Prostate biopsy (5+4=9) in unradiated lobe.
August 2007 - RRP and bilateral orchiectomy. PSA <0.1
99% continent immediately
Sept 2008 - PSA 0.45, Nov 2008 - PSA 0.67,
Dec 2008 - Resume Casodex, Stricture in bladder neck requiring surgical removal. 99% incontinent immediately.
Feb 2010 PSA 2.8 Added Avodart, More strictures requiring surgical removal. Artificial sphincter installed April 20, 2010.


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3742
   Posted 4/28/2010 6:01 AM (GMT -6)   
Hey Sea,
Incontinence is a pain but I am finding that most Uros, surgeons, etc. prefer to wait until one year after surgery before doing something about it. (Easy for them to say.) I'm at 9 months and still leak about 250 ml, 8 oz per day.
I recommend getting a good scale (or using your wife's kitchen scale when she is not looking) so you can can weigh your pads daily and see if there is an improvement. I can see a glacially slow improvement. That is encouraging.
No info on shingles. I heard they are terrible.
Jeff
Married 34 years, DX Age 56. First routine PSA test on April 8, 09: 17.8. Start 2 weeks of Cipro to rule out protatitis. May '09 PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, 20%-70%, Gleason 6=3+3. Bone and C/T scans neg.
RP DaVinci -7/21/2009 @ Univ of Roch Medical Center
Left nerve gone, right partial spared.
Catheter removed - 7/31/2009 Pathology report received:
Gleason 3+4=7, Tumor size: 2.5 x 1.8 cm, location: both lobes and apex.
Extraprostatic extension present; Perineural invasion: present, extensive.
No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 12/11 5 months, Still no activity, zip. Using pump daily since 11/11. No effect with 20 mg of Cialis or 100 mg of Viagra. Shots next See Uro 1/22/10 Trimix #1. Try 0.08- 25%, 0.12-25%, 2/26/10 try 0.16 First Success! 90%.
Incontinence - 8/20 4 full pads per day
.. 9/7 3-4 full pads per day. Try controlling fluids.
12/11/09 5 months: 3 pads per day, 400-450ml/day
02/26/10 7 months: 3 pads but leak is now 320 ml (5 day avg.)
03/22/10 8 months: 3 pads per day, 280 ml/day (5 day avg.) PT says all muscles are tight and working properly. There must be another issue. Uro mtg 4/23. Did I waste 9 months? Mtg 5/22.
Post Surgery PSA - 9/3 6 weeks - 0.05; 10/13 3 months - 0.04, 1/14 6 months - 0.05, 4/14 9 months - 0.04 and <0.01 with ECLIA.


Arnie
Regular Member


Date Joined Aug 2009
Total Posts : 374
   Posted 4/28/2010 6:42 AM (GMT -6)   
Hey Sea..........hopefully your incontinence will improve as time goes on. As for shingles, it's the chicken pox virus that has been dormant roaring back to lfe. I had a bout about 10 years ago, and was lucky that it subsided in about 8 weeks from outbreak. My lesions were on one side of my back, and fortunately it wasn't along nerve paths (along which the virus travels)
near my eyes etc., which can really be dangerous. It was very painful while it lasted. You need to address things that affect your immune system, getting plenty of rest, checking for inflammatory markers, etc., as well as addressing with anti-viral meds, both oral and topical. Just like the chicken pox shouldn't go on continuously, neither should shingles in most cases although durations of the attacks vary from person to person. I'm not aware, personally, of anybody who has had chronic shingles like you describe. Have you seen a specialist regarding this? It could be that in trying to restore your body to it's former self prior to PCa surgery, your system has been depleted to the point where the shingles virus comes out of it's coffin.
 
Arnie in DE
Age 56 (biopsy & surgery)
PSA at Diagnosis-3.9
Biposy 8/19/08--4 of 12 cores positive; 5% involvement, Gleason 6 (3+3)
 
Surgery 1/26/09-DaVinci Robotic Prostatectomy at Presbyterian Medical Center/HUP-Phila, PA
Dr. David Lee
 
Pathology Report- Adenocarcinoma, no capsular involvement, seminal vesicles clear, lymph nodes clear, negative margins, Gleason 7 (3+4), Stage T2C, NO MX, Prostate 61.8 grams, gland involvement 2-10%
 
Catheter removed after 8 days, totally dry at 3 months. ED issues continue, Viagra (via ADC) nightly (100mgs), VED use in earnest at 6 months. "Ball Park Frank" plumping at this point......ED at 10 months continues to improve, albeit slowly. Continued daily use of 100mg Viagra (ADC). Discontinued pump use; manual stimulation to varying states of erections; achieved penetratable erection on a couple of occasions----At 13 months, nocturnal erections are frequent. Still taking 100mg of ADC Viagra nightly. Libido still in the dumper, but working on it with doctors.
3 month PSA--<0.1
6 month PSA--<0.1
10 month PSA--<0.1
13 monthPSA--<0.1


t-dog
Regular Member


Date Joined Dec 2009
Total Posts : 154
   Posted 4/28/2010 1:03 PM (GMT -6)   
Hey Sea, i have a tendency towards shingles as a responce when my body is under trauma. I can recognize whats about to happen when it starts tingling usually on my cheek or tailbone. I take a few days or weeks Of Valtrex to beat it down and that usually works till the next time and then do it again. Been dealing with it for years so i know it sucks. Good luck.
Dx at 50 in 12/09 Merry Christmas its cancer....
3 of 12 positive, right side only, psa at dx 2.6 free%14
gleason 3+3=6
routine physical, no symptoms
Da Vinci performed Feb 2k10 by Dr Marc Milsten [hes got mad skills]
99% continent from cath out, mr happy fully functional at 2 weeks out!
path showed same gleeson with no other blips other than one slight margin, organ confined 20% right, 5%left, 34grams
Hernia repair Mar 2k10, hernia was side effect of the surgery
 


Floyd
New Member


Date Joined Feb 2010
Total Posts : 18
   Posted 4/28/2010 10:26 PM (GMT -6)   
Hi Sea, I`m glad to hear that the incontinence is improving. I had my surgery about the same time and have also seen improvement in that as well. I`m sorry to hear about the shingles; I`ve known people with persistent pain after shingles infections that can last for quite a  while. I hope that it improves for you. I`ve heard that some of the medications for neuropathy pain like Neurontin can help with the pain; check with your Dr to see what they can do to help.

seaofpee
New Member


Date Joined Feb 2010
Total Posts : 17
   Posted 4/30/2010 5:57 PM (GMT -6)   
Thank you all for your replies and encouragement. I have tried about everything for the shingles some help a bit, the doc. says it is something that can come and go for years.
Thanks again.
Rich
First surgery October 09, that's when they found psa of 5.4
December biopsy  gleason  7  3+4
January 20 rp
psa 2 weeks after 0.06 Thank God.
I feel blessed.  The surgeon said the cancer was starting to come out of the prostate.
ed. still there no progress uro says pump will help
age 58
cialis caused 3 day headache
surgery done in Denver


142
Forum Moderator


Date Joined Jan 2010
Total Posts : 7084
   Posted 4/30/2010 8:26 PM (GMT -6)   
I am still one pad daytime / one night at DaVinci +27 weeks. It has gotten better, but for now this seems the "stable" point.

pa69
Regular Member


Date Joined Mar 2009
Total Posts : 260
   Posted 4/30/2010 9:36 PM (GMT -6)   
Hi Sea,
I used more tan 10 pads per day well past the 3 month point. I beame pad free after about 15 months.

Hang in there, you'll probably make it.

Bob
Age 70, First ever PSA 7.8 taken June 2008, Biopsy July 2008, 10 of 12 cores positive, Gleason 3+3=6
da Vinci surgery December 10, 2008, catheter removed December 29 2008
St. Lukes Hospital, Bethlehem, Pa.
Dr. Frank Tamarkin
Prostate weight 73.0 grams, Gleason 3+3=6, stage pT3a
Tumor locations: right anterior apex, right posterior apex to mid
left anterior mid to base, left posterior apex to mid
extensive perineural invasion in right anterior apex, right and left posterior apex to mid
seminal vesicles negative
Five PSA tests undetectable, latest Feb 5 (Whew!)
Pad free beginning Mar. 18, 2010!


Michelangelo
New Member


Date Joined Sep 2009
Total Posts : 12
   Posted 9/3/2010 1:30 PM (GMT -6)   
I am going to start a new thread about my progress and call it, "light at the end of the tunnel!"
But because you have a SHINGLES question I thought I'd post it here first…

I thought I was recovering well until I contracted Pseudomonas Aeruginosa
I was first diagnosed with Swine Flu and treated with antibiotics for five days
until my GP (General Practitioner) informed me that a swab taken from throat had shown positive for Pseudomonas Aeruginosa.
I had ten days of full on Anti-Biotics and recovery was initially quick but eventually slow paced.

I think the drugs just killed off everything and so I was very susceptible to any flu bug flying around.

Then I developed SHINGLES
Holy crap - it was awful…
Fortunately my amazing GP diagnosed it within three days of the initial rash appearing
and treated me with antibiotics.
But the pain in my back and front rib cage was excruciating.

I am currently trying to get some rest and at the same time build up my strength again
Walking is good but I really need to do more aerobic exercise
and I'm a lazy sod really.
I only ever exercised when I had a ball at my feet
But my girlfriend and I have just joined a racquetball club so that may be a solution for me.

INCONTINENCE:
I have been very fortunate.
I was able to do all the post surgery kegel exercises they suggested for the fifth week BEFORE my surgery
and I think that helped tremendously.
I still have a leakage problem if I get drunk at a party
so I wear a pad if I think I'm off out for a good time.
I also wear a pad when I'm traveling long distances
but that is merely precautionary and i have never yet been caught - short
as it were.
So lucky me, so far.

ERECTILE DYSFUNCTION:
Thirteen months after surgery and I can get a reasonable erection without drugs
I still find that my penis head is not as bulbous as it once was
but I'm hoping that will return
I am using a vacuum pump to help improve that
( I highly recommend using a good Vacuum Pump to stimulate the blood vessels
this was not something that my urologist stressed but I think it's essential and better than the drugs option)
I have used Levitra, Cialas and Viagra and whilst they all worked
I never seemed to regain a natural "hard-on " sensation,
the sensitivity just wasn't there with the drugs.
I am uncircumcised so I have always had a very sensitive penis head
and I just don't seem to have regained that sensitivity - yet!
So sex, both oral and penetrative, are just not as satisfying as before surgery,
but I have my fingers crossed that given more time, and pump action,
I'll regain that fantastic feeling again.
I'm certainly optimistic. I just keep telling my girlfriend I need more practice, haha…

So life after surgery is getting better everyday
I have certainly had some very distressing and depressing days
but generally feel optimistic
My recent PSA score was zero so another six months of not worrying ahead.

Good luck to everyone out there.
I hope my story is of benefit to at least one other fellow cancer patient.

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 7084
   Posted 9/3/2010 3:56 PM (GMT -6)   
Sea,
I had a relapse when I got well into the radiation (IGRT). Went back to 2-3 pads per day. Today I am in the 1-2 per day bracket again.
My IGRT journey -
www.healingwell.com/community/default.aspx?f=35&m=1756808
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