3 Months = Undetectable; Notes on Incontinence Trial

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kcragman
Regular Member


Date Joined May 2008
Total Posts : 240
   Posted 8/13/2008 8:32 AM (GMT -6)   
Had my 3 month PSA check yesterday. I am undetectable. I would be dancing in the streets except I am totally bummed about my incontinence.
 
At the 7 week mark, I visited the "Fellow" doctor running a "weigh your pads" trial to track incontinence. At that time I was leaking "a little over a pound" for 24 hours, while the average guy was running about 3/4's of a pound. At that time the Fellow said they were seeing the most dramatic improvement between the 3 and 6 month marks.
 
Yesterday I went to see my primary surgeon who is running the Fellowship. At the 14 week mark (13 weeks post catheter) I was 615 grams - which is 1.35 pounds. Zero progress in 7 weeks. I am off the charts. He says he has one other patient who is in my condition - meaning the other 99% of his patients don't go though this. (I don't know how his patients equate to the trial. Are all the trial patients his? Or do they include the other 4 or 5 surgeons in the practice?)
 
But - yesterday was possibly the WORST day I have ever had with incontinence, so maybe I am doing a little better than the results indicate. I was a soggy, miserable mess all day yesterday and I have no idea why. I am a slender, high muscle tone, former track athlete with a physical therapist for a wife. Over the past 27 years - for a variety of reasons including class demostration - I have flexed or twitched almost every muscle in my body for her - including some that most people can't move. But apparently I suck at kegels. I simply cannot walk down the hall and stay tight at the same time.
 
So I can proudly say I have used something like 637 pads in the 13 weeks since the catheter came out. Buy stock in CVS because I use their pads.
 
Life is good, just some days are better than others.
kcragman 
 
 
Age: 52
March 2006: PSA 2.5
Dec 2007:   PSA taken for insurance application. I did not see the results until late Jan '08 - after I was rejected. Their lab said PSA 4.5. PSA again in Feb '08: 3.7.
March 2008: Biopsy. Gleason 7 (4+3) 12 cores taken. 5 on the left side were cancerous and the 6th did not look good.
May 5, 2008: Da Vinci robotic laparoscopy at GW Hospital, Washington DC.
Post op: Gleason 9 (4+5). 15% of prostate involved. Negative margins. Lymph nodes and associated glands all appear to be cancer free.


Navy corpsman
Regular Member


Date Joined Aug 2008
Total Posts : 61
   Posted 8/13/2008 9:02 AM (GMT -6)   

Hang in there buddy. As you are aware everyones recovery is different.  Try this, my doctor said not to do kegals, he recommends only stoping and starting the urine flow during urination. Start the exercise by urinating at full force then stoping the flow and then urinating again.  Hope this helps.

- John


Age:  44
We have a family history of PCa.  My Dad and uncle died from it at 65 and 53. My PSA velocity increased in the last 2 years and I had to talk my GP into refering me to a urologist.
Biopsy results:  5 of 11 cores positive, all 30%. Gleason 6. T1c. PSA 2.53  Date of biopsy 15MAY08.
Open RRP at Johns Hopkins with Dr. Partin on 09JUL08.
Pathology report:  Gleason 6, pT2, neg. margins, 0 lymph node and seminal vessical, organ confined, I lost 1 nerve bundle and 22 lymph nodes.
As of today, about a month after surgery, I feel at about 80%. Urinary control seems to be improving. Little Elvis has taken a nap and has not awakened yet. I hope when he wakes up he is well rested because he is going to get one heck of a workout.
 
 


Doting Daughter
Veteran Member


Date Joined Aug 2007
Total Posts : 1064
   Posted 8/13/2008 9:34 AM (GMT -6)   
Congrats on the undetectable!!! I know it is hard, but that is the most important!! Great news!!!

Hang in there! My father was really frustrated with how little the kegels helped in his continence. He had major improvement, however, he felt like it took longer than the "norm". He went from around 7 pads a day to 3-4 around 12-16 weeks and at almost a year out he still uses around 1-2 pads per day. (He drinks coffee and alcohol and works out regularly) Best wishes for a drought!
Father's Age 62 (now 63)
Original Gleason 3+4=7, Post-Op Gleason- 4+3=7,
DaVinci Surgery Aug 31, 2007
Focally Positive Right Margin, One positive node. T3a N1 M0.
Bone Scan/CT Negative (Sept. 10, 2007)
Oct. 17 PSA 0.07
Nov. 13 PSA 0.05
Casodex adm. Nov 07, Lupron beg. Dec 03, 2007 2 yrs
Radiation March 03-April 22, 2008- 8 weeks 5x a week
July 2, 08 PSA <.02
Praying for a cured dad.

Co-Moderator Prostate Cancer Forum


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 8/13/2008 10:39 AM (GMT -6)   
Good news, indeed.  Love those undetectables.  Keep on keepin' on, guy , hopefully the continence will trun around for you ,also



James C.
Co-Moderator- Prostate Cancer Forum

Age 61
4/19/07 PSA 7.6, referred to Urologist, recheck 6.7
7/11/07 Biopsy- 16 core samples, size of gland around 76 cc. Staging pT2c
7/17/07 Path report: 3 of 16 PCa, 5% involved, left lobe , GS 3/3:6.
9/24/07 (open) Retropubic Radical Prostatectomy performed
9/26/07 Post-op Path Report: GS 3+3=6 Staging pT2c, 110gms, margins clear
10/15/07 ED- begin 50mg Viagra and Vacurect pump nightly, Fully continent
1/14/08 Caverject started/stopped, aching. 2/24/08 .5ml Bimix started-success
7/31/08 ED- Viagra, pump continues, no response- Trimix .10ml x 2 weekly continues
Post Surgery PSA's:  3 mts-0, 6 mts.-0, 9 mts.-0.


norskie
Regular Member


Date Joined Jan 2007
Total Posts : 376
   Posted 8/13/2008 1:52 PM (GMT -6)   
Great news on the PSA test may you have a lifetime of 0's and don't give up hope on the incontinence front keep holding on. While I was never anywhere close to your present incontinence battle it was at about 14 weeks when I noticed when the most progress started to appear.

Norskie
norskie
Current age 50, Age at Dx-48 PSA 6.22 on 9-26-06
Biopsy 11-01-06, 2 of 13 cores 10% cancer, 2 other cores abnormal Up-dated 20% prostate cancerous
Gleason score 3+3=6 After Surgery Pathology report 4+3=7 a couple agressive Grade 5 cells found
Da Vinci surgery 01-09-07 UW Madison
Pathology Report- cancer 100 % capsual contained 1-18-07
1st & 2nd Post PSA Blood Test .1 and less - Undetectable
3nd Post PSA Blood Test 01-17-07 .3
March 27th PSA .422 Begin Salvage Radiation April, 14 2008
Radiation Complete June 4, 2008 36 treatments
August 5, 2008 PSA .09 or < .1 again
Incontenence-Pad free since end of May 07 4 1/2 months post surgery 
ED back to 95% prior to surgery - no medication required.


IsleofGough
New Member


Date Joined Jul 2008
Total Posts : 12
   Posted 8/13/2008 3:40 PM (GMT -6)   
I can empathize with you. I just passed one month out and still go through 8 pads a day (though I haven't weighed them). I had nightime continence with running 4-5 times from bed to bathroom, but no continence during the day. Over the past two days, I've noticed I can sometimes hold things for a half hour or so in the mornings. I saw my physician yesterday and he said that most people regain continence between 1 and 3 months but some take up to 6 months. Urologists rarely work people up for treatment for this before 6 months and some wait a year. He said that generally things get better first at night, then in the mornings, then in the afternoons, and lastly in the evenings and that return to continence generally happens quite suddenly for unclear reasons. So despite what your resident says, I do not think you can say that you are in the 3-8% group that will stay incontinent and need surgical treatment for this. I'm not good at patience myself (I am a general surgeon), but my urologist told me that aside from doing kegels, there is nothing that can be done to speed up the process. Good luck to you, and do not dispair. (I'm 53 and fit, so I understand your concern).

rob2
Veteran Member


Date Joined Apr 2008
Total Posts : 1131
   Posted 8/13/2008 5:43 PM (GMT -6)   
kcragman - good news on the undetectables. i actually posted yesterday and in my post asked if you had your 3 month check-up. i was wondering how many people out there had nerve sparing surgeries. i'm sure you will get better on the continence. it can just take time. i wonder if you got that special stitch and it wasn't as good as the regular one. i know you had mentioned being in a group that did or did not get the special stitch. important thing is the psa. the other will come with time.
 
Age 48
occupation accountant
PSA increased from 2.6 to 3.5 in one year
biopsy march 2008 - cancer present gleason 7
decision - surgery (robotic)
surgery may 9, 2008 - houston, tx
pathology report -gleason 8
margins clear
4 week and 6 week PSA >.04 (undetectible)
12 week PSA <.04
continent at 10 weeks (no pads!)
kegel's twice a day 20 reps


kcragman
Regular Member


Date Joined May 2008
Total Posts : 240
   Posted 8/14/2008 7:15 AM (GMT -6)   
Thanks for all the kind words. I know, patience, patience.

I had my physical therapist wife closely observe me last night, and I appear to be doing everything correctly as far as kegels go. We even discussed and I think I had a breakthrough on the famous "elevator kegels." I was able to stop my stream from day one, and I have been pretty dry at night from day one. My issue appears to be walking and holding at the same time. The doctor said you only need to be about 10% tight to remain dry while standing, and I just don't do that. It seems that I walk around "wide open." And in some cases the more I squeeze the worse it gets. For most guys apparently this 10% thing becomes an involutary reaction and they go dry without concisously trying to hold anything. I am hoping that eventually I'll get there.

rob2 - I had nerve sparing surgery, and I am actuallly making progress on the ED side - somewhat hampered by this incontinence thing. My erection is probably one third back to normal in that department. The stitch thing? I still don't know if I got it or not, but the doctor said the results were proving that kegels were the only thing you can do for incontinence -whether you had the stitch or not. He led me to believe that the stitch was pretty much a non-factor in incontinence.

Navy corpsman - I am a retired pork chop myself. Where did you serve? (Pork chop = supply officer for you land crabs.)
kcragman
Age: 52
March 2006: PSA 2.5
Dec 2007:   PSA taken for insurance application. I did not see the results until late Jan '08 - after I was rejected. Their lab said PSA 4.5. PSA again in Feb '08: 3.7.
March 2008: Biopsy. Gleason 7 (4+3) 12 cores taken. 5 on the left side were cancerous and the 6th did not look good.
May 5, 2008: Da Vinci robotic laparoscopy at GW Hospital, Washington DC.
Post op: Gleason 9 (4+5). 15% of prostate involved. Stage: pT3a. Negative margins. Lymph nodes and associated glands all appear to be cancer free.


Salty_clark
Regular Member


Date Joined Apr 2008
Total Posts : 95
   Posted 8/14/2008 10:15 AM (GMT -6)   
Kcragman...Though I am not a member of any trial I have been weighing my pads.  It seemed to me to be the logical thing to do rather than use the number of used pads as the traditional method of grading the "Big I."  The number of pads a person uses during a 24 hour period is directly related to the comfort level that person desires...i.e. how wet he can stand before changing.  I am at the 15th week since my surgery and started weighing my pads about 6 weeks ago.  I started out at around 900 net grams per 24 hour period stretched out over 4 pads.  I am now 300-400 net grams per day using 2 pads.  As one can readily see on a daily basis any progress or lack of progress is based on the actual urine deposits in the pads regardless of the number of pads.  I am presently working on one flaw in my system...that being the number of trips to the bathroom...it directly influences the total urine deposits in the used pads.  I have started using my cell phone alarm feature to program the time intervals so that variable will be eliminated from the system.  The most that I have been able to wait between bathroom trips is 90 minutes.  My goal now is to try to stretch my bladder to allow 120 minutes between trips.  I lead a somewhat sedentary life as I am afflicted with neuropathy in my legs as a result of my military duties in 'Nam.  So, I sit a lot...I do not normally leak while sitting but prolonged standing, walking and vigorous turning of my body will create a flow.  I am working on that with the kegels and just tending to my garden in short time allotments.  Also, I have difficulty staying dry while sleeping - everything relaxes including my bladder.  I haven't come up with a feasible solution to that problem...yet!
But, I will.  Good luck to you and have a bright, fruitful day.
 
Salty

Age 75 at DX 76 on 9 May 08
DRE positive with nodule 15 Jan 08
PSA 3.8 18 Jan 08
Biopsy 11 Mar 08 Gleason 8 (4+4) on the right 3 out of 12 positive <5%. Gleason 7 (4+3) on the left 1 out of 11 positive <5%.
Bone scan and CT scan Negative 12 Mar 08
Robot Assisted da Vinci prostectomy with Dr Fagin in Austin scheduled for 30 April 08.
- - - - - - - -
da Vinci successfully completed by Dr Fagin as scheduled.
Path Report:
Gleason downgraded to 3+4=7
Tumors confined to the prostate.
Bilateral tumor on right side 5 of 10 levels and on left side tumor present in 9 of 10 levels.
Margins Negative.
Extraprostatic Extension Negative
Seminal Vesicle Invasion Negative
Stage pT2c
As far as it goes between you, me and the fence post I am cured. But I am required to keep an eye out for the PSA due  toward the end of June.
06-24-08 <0.1 Undetectable.
Free Psa Undetectable also.


kcragman
Regular Member


Date Joined May 2008
Total Posts : 240
   Posted 8/14/2008 11:05 AM (GMT -6)   
Salty - Thanks for the info. I might get a gram weight so I can measure my progress. I KNOW I am doing better than I did last Tuesday at the doctor's. Like I said, for some reason Tuesday was just a terrible day for me with incontinence. I might change pads a little more frequently than most because I was fighting a brutal rash on the head of my member for some weeks - so I try to change about every 2 hours. I actually manage to change about every 2.5 - 3 hours.

I assume you are sleeping on your back? I slept on my stomach for 30 years, but obviously I had to change overnight with this surgery - and it has worked out pretty well for me. Theoretically, if you sleep on your back, your bladder will fill up to the level of your urethra. At that point you should feel pressure to go to the bathroom, and most guys wake up and go. I only have to go once a night which has been a blessing.

Knowledge is good. Measure on!
kcragman
Age: 52
March 2006: PSA 2.5
Dec 2007:   PSA taken for insurance application. I did not see the results until late Jan '08 - after I was rejected. Their lab said PSA 4.5. PSA again in Feb '08: 3.7.
March 2008: Biopsy. Gleason 7 (4+3) 12 cores taken. 5 on the left side were cancerous and the 6th did not look good.
May 5, 2008: Da Vinci robotic laparoscopy at GW Hospital, Washington DC.
Post op: Gleason 9 (4+5). 15% of prostate involved. Stage: pT3a. Negative margins. Lymph nodes and associated glands all appear to be cancer free.


Salty_clark
Regular Member


Date Joined Apr 2008
Total Posts : 95
   Posted 8/14/2008 5:55 PM (GMT -6)   
Kcragman...I know exactly what you mean by good days and bad days with the "Big I."  The trick is, I have learned, to fight hard for more good days.  I do it when I go to bed at night around 2300 to midnight and for the first couple of minutes I try to figure how to make tomorrow better.  Actually my thoughts start while I am showering and cleaning off the stench of the day and I say to myself how wonderful its going to be when I don't have to take these extra showers to clean off that bit that should have been dispensed with in the normal way.  I tell my wife that she has the cleanest husband around cause I never in my not- so-young life can remember showering 2 and 3 times per day over such a long time...heck of a life huh!
    Kc I normally sleep on my side.  Among my many afflictions was a 4-bypass about 12 years ago.  It has caused me to not be able to breathe too well while lying on my back for some reason so I normally turn over on either side to go to sleep.  Back in my rambling days when I smoked cigarettes heavily, drank booze just as heavily, and chased a lot of skirts I did not worry about the consequences so now I am paying the consequences.  It is logical to assume that sleeping on my side allows the bladder to drain when it overloads the capability of the pelvic floor muscles to hold it in.  So, I will have to learn how to sleep on my back again and allow gravitation to be in my favor.   Another day...another project - huh!
    You mentioned a rash problem.  I don't have one as such.  my problem is I get a terrific urge to scratch my balls caused from a fungus like ailment.  I suppose it could be considered a rash of a sort...my doc prescribed an ointment called Nystatin and Triamcinolone Acetonide Cream.  One application and its gone.  But its temporary because in a day or two with the wetness the itch comes back so I smack it down with another application.  This is a long standing problem though when the conditions are just right cause I had something like this back in 1951 in the Korean War when a shower was unavailable and absolutions were performed out of a steel helmet...but thats another story.
     Good luck Kc and may your grams be lessened in the coming weeks.
 
Salty

Age 75 at DX 76 on 9 May 08
DRE positive with nodule 15 Jan 08
PSA 3.8 18 Jan 08
Biopsy 11 Mar 08 Gleason 8 (4+4) on the right 3 out of 12 positive <5%. Gleason 7 (4+3) on the left 1 out of 11 positive <5%.
Bone scan and CT scan Negative 12 Mar 08
Robot Assisted da Vinci prostectomy with Dr Fagin in Austin scheduled for 30 April 08.
- - - - - - - -
da Vinci successfully completed by Dr Fagin as scheduled.
Path Report:
Gleason downgraded to 3+4=7
Tumors confined to the prostate.
Bilateral tumor on right side 5 of 10 levels and on left side tumor present in 9 of 10 levels.
Margins Negative.
Extraprostatic Extension Negative
Seminal Vesicle Invasion Negative
Stage pT2c
As far as it goes between you, me and the fence post I am cured. But I am required to keep an eye out for the PSA due  toward the end of June.
06-24-08 <0.1 Undetectable.
Free Psa Undetectable also.


Navy corpsman
Regular Member


Date Joined Aug 2008
Total Posts : 61
   Posted 8/14/2008 6:28 PM (GMT -6)   

Mr. Pork Chop -

After high school I joined the Navy and enjoyed every minute of the 4 years that I was in.  I thought about being a lifer but I knew that one of my main goals was to run my own business so I recieved a honorable discharge and moved on to the next phase of my life.  I was stationed in San Diego, what a hardship duty station!

- Landcrab


Age:  44
We have a family history of PCa.  My Dad and uncle died from it at 65 and 53. My PSA velocity increased in the last 2 years and I had to talk my GP into refering me to a urologist.
Biopsy results:  5 of 11 cores positive, all 30%. Gleason 6. T1c. PSA 2.53  Date of biopsy 15MAY08.
Open RRP at Johns Hopkins with Dr. Partin on 09JUL08.
Pathology report:  Gleason 6, pT2, neg. margins, 0 lymph node and seminal vessical, organ confined, I lost 1 nerve bundle and 22 lymph nodes.
As of today, about a month after surgery, I feel at about 80%. Urinary control seems to be improving. Little Elvis has taken a nap and has not awakened yet. I hope when he wakes up he is well rested because he is going to get one heck of a workout.
 
 


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 8/14/2008 9:08 PM (GMT -6)   
Hey Guys.....just hang in there and keep working at it. If not better 1 year post op we will sadly welcome you into what I call the "unlucky 5% club". I am finally throwing in the towel and having a AUS installed on 8-22. Good luck in your fight with UI.
KW
    43 at Dx and Surgery
    PSA 5.7, Biopsy 3 of 12 positive (up to 75%) all on left side of prostate, Gleason 7
    RRP on Oct. 17, 2006 - Nerves on right side saved. All Lab's clear. 
    Cathiter in for 28 days due to complications in healing. Removed Nov. 9, 2006
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00.
    ED workable and usable with Viagra.
    Feb. 20th, 2007 - Feb. 4th, 2008  Cystoscope, Two Collagen injections,Second Opinion Consultation for Incontinance at OU Medical Center, Bio-Feedback training, Chiropractic, Accupuncture  to try to resolve ongoing incontinance (4-6 pads a day)  All PSA's 0.00.
    Feb. 22nd, 2008 - Surgery to install the AMS AdVance Male Sling.
    March 27th, 2008 - Sling not working, Little or no improvement.
    April 18, 2008 - Collagen injection.  Back to using 4-6 full pads a day within a week.
    May 14, 2008 - Another collagen injection to try to Band-Aid the leaking for our June cruise.  Will start making conusultation appiontments for AUS after we return.
    July 14th, 2008 - AUS consultation with Dr. Morey at UT Southwestern (Dallas).
    July 30, PSA 0.00.
    Aug. 22nd, 2008 - AUS Surgery by Dr. Morey
     


kcragman
Regular Member


Date Joined May 2008
Total Posts : 240
   Posted 8/15/2008 7:16 AM (GMT -6)   
Salty & kw: Wow. I absolutely cannot complain. Right now my situation is a tiresome inconvenience. I have not experienced half of what you guys are talking about. Salty - I had a simple (but painful) rash. It was compounded by chaffing. I found Desitin knocked out the rash pretty quickly, and now I use A&D ointment because it has a more lubricating effect to cut down the chaffing. And PS - Thank you, sir, for your service to your country in that god-awful mess called the Korean War. In 10 years of active duty and 16 years of reserve duty I never came CLOSE to doing anything like that.

kw - Certainly best of luck to you, man, for next Friday. Please keep us posted.

Corpsman - I was an east coast sailor for my entire career, but I got to SD for some schools, and I traveled there on a regular basis when I was with the Tomahawk cruise missle program. What a fabulous place!

Live on!
kcragman
Age: 52
March 2006: PSA 2.5
Dec 2007:   PSA taken for insurance application. I did not see the results until late Jan '08 - after I was rejected. Their lab said PSA 4.5. PSA again in Feb '08: 3.7.
March 2008: Biopsy. Gleason 7 (4+3) 12 cores taken. 5 on the left side were cancerous and the 6th did not look good.
May 5, 2008: Da Vinci robotic laparoscopy at GW Hospital, Washington DC.
Post op: Gleason 9 (4+5). 15% of prostate involved. Stage: pT3a. Negative margins. Lymph nodes and associated glands all appear to be cancer free.


IsleofGough
New Member


Date Joined Jul 2008
Total Posts : 12
   Posted 8/15/2008 4:21 PM (GMT -6)   
I am Navy too (active). One thing doesn't make sense to me that you mention: weighing pads. I understand that everyone might have different individual preferences for when they change their pad, but I don't see how weighing the pad would control for many variables except in a very inexact research study comparing people not to themselves for improvement but to each other. How much you drink that day, how long between urination, how much you were sitting standing or lying, and a great many other factors should make pad weight a very very inexact study (even if you carried pads around during the day and didn't let them dry out - not something I would do). If, for instance, you were 100% incontinent. Your pad weight would correlate with how much you drank minus insensible losses. Until they have a better rating system for incontinence, I would just look subjectively at incontenence during different times of day.

Navy corpsman
Regular Member


Date Joined Aug 2008
Total Posts : 61
   Posted 8/15/2008 5:10 PM (GMT -6)   

I'm not an expert on the subject, yet weighing pads makes sense to me.  If a man has incontinence issues there are many variables to think about and weighing pads gives you measurable results.  The biggest benefit I see from measuring pads is once you see the measurements start to decrease consistently you would know you are making progress.  Small incremental improvements are important and should be celebrated.

- John


Age:  44
We have a family history of PCa.  My Dad and uncle died from it at 65 and 53. My PSA velocity increased in the last 2 years and I had to talk my GP into refering me to a urologist.
Biopsy results:  5 of 11 cores positive, all 30%. Gleason 6. T1c. PSA 2.53  Date of biopsy 15MAY08.
Open RRP at Johns Hopkins with Dr. Partin on 09JUL08.
Pathology report:  Gleason 6, pT2, neg. margins, 0 lymph node and seminal vessical, organ confined, I lost 1 nerve bundle and 22 lymph nodes.
As of today, about a month after surgery, I feel at about 80%. Urinary control seems to be improving. Little Elvis has taken a nap and has not awakened yet. I hope when he wakes up he is well rested because he is going to get one heck of a workout.
 
 


Salty_clark
Regular Member


Date Joined Apr 2008
Total Posts : 95
   Posted 8/15/2008 8:44 PM (GMT -6)   
IsleofGough said...
I am Navy too (active). One thing doesn't make sense to me that you mention: weighing pads. I understand that everyone might have different individual preferences for when they change their pad, but I don't see how weighing the pad would control for many variables except in a very inexact research study comparing people not to themselves for improvement but to each other. How much you drink that day, how long between urination, how much you were sitting standing or lying, and a great many other factors should make pad weight a very very inexact study (even if you carried pads around during the day and didn't let them dry out - not something I would do). If, for instance, you were 100% incontinent. Your pad weight would correlate with how much you drank minus insensible losses. Until they have a better rating system for incontinence, I would just look subjectively at incontenence during different times of day.
 
Well, I defer to your expertise in the medical field in so far as your thoughts on controlled studies and agree to an extent.  However, on an individual basis I prefer to know the exact amount of urine I am putting out and I get that info from weighing my pads.  It is much more exacting than the number of pads one is using per day or the time of day or an estimate of how incontinent I am depending on the time of day.  There is a definite positive correlation, mental or otherwise, when one moves from pads that weigh 900 grams to pads that weigh 300 grams and, believe me, it is a wonderful feeling to know that one is making progress in the battle with Big I.  If, for no other reason, I recommend the use of a little $20 digital scale.  For those of you who by virtue of your jobs or other circumstances cannot timely weigh your product then, obviously, this system does not apply.
 
Salty

Age 75 at DX 76 on 9 May 08
DRE positive with nodule 15 Jan 08
PSA 3.8 18 Jan 08
Biopsy 11 Mar 08 Gleason 8 (4+4) on the right 3 out of 12 positive <5%. Gleason 7 (4+3) on the left 1 out of 11 positive <5%.
Bone scan and CT scan Negative 12 Mar 08
Robot Assisted da Vinci prostectomy with Dr Fagin in Austin scheduled for 30 April 08.
- - - - - - - -
da Vinci successfully completed by Dr Fagin as scheduled.
Path Report:
Gleason downgraded to 3+4=7
Tumors confined to the prostate.
Bilateral tumor on right side 5 of 10 levels and on left side tumor present in 9 of 10 levels.
Margins Negative.
Extraprostatic Extension Negative
Seminal Vesicle Invasion Negative
Stage pT2c
As far as it goes between you, me and the fence post I am cured. But I am required to keep an eye out for the PSA due  toward the end of June.
06-24-08 <0.1 Undetectable.
Free Psa Undetectable also.


kcragman
Regular Member


Date Joined May 2008
Total Posts : 240
   Posted 8/15/2008 10:23 PM (GMT -6)   
Guys:

Check my string about incontinence starting 6/28/08. It has more details about the trial I am in (was in?). You are correct - forget the number of pads. The critical measurement is weight of urine. And IsleofGough - yes, I had to carry a large ziplock bag around for 24 hours and "capture" my used pads and keep them as airtight as possible for the weigh-in. (Of course I kept all my stuff in a gym bag that I took to the bathroom. Nobody in my office really seemed to notice, or if they did, they did not say anything.) You are right - a lot of factors impact the weight, but I assume that over a large population over a period of time you can start to pick up trends - which allows them to say the average guy is leaking 3/4s of a pound of urine a day at 6 weeks. I don't make this stuff up, I just agreed to participate in the trial.

And to prove your point - I have been very sensitive to this issue Wed-Thurs-Fri of this week, and I can guarantee you that I leaked a whole lot LESS than I did on Tuesday. But, Tuesday was my weigh-in day and I was terrible. But the large population and length of time should smooth out anomalies like me in the trail.

Carry on,
kcragman
Age: 52
March 2006: PSA 2.5
Dec 2007:   PSA taken for insurance application. I did not see the results until late Jan '08 - after I was rejected. Their lab said PSA 4.5. PSA again in Feb '08: 3.7.
March 2008: Biopsy. Gleason 7 (4+3) 12 cores taken. 5 on the left side were cancerous and the 6th did not look good.
May 5, 2008: Da Vinci robotic laparoscopy at GW Hospital, Washington DC.
Post op: Gleason 9 (4+5). 15% of prostate involved. Stage: pT3a. Negative margins. Lymph nodes and associated glands all appear to be cancer free.


rob2
Veteran Member


Date Joined Apr 2008
Total Posts : 1131
   Posted 8/16/2008 7:11 AM (GMT -6)   
have you noticed if drinking coffee impacts you on the continence side of things. i have been fortunate that i am basically continent. we had a big meeting at work last week and i drank about 3 cups of coffee is about an hour. i found myself getting up every 30 minutes after that to go to the bathroom.
 
Age 48
occupation accountant
PSA increased from 2.6 to 3.5 in one year
biopsy march 2008 - cancer present gleason 7
decision - surgery (robotic)
surgery may 9, 2008 - houston, tx
pathology report -gleason 8
margins clear
4 week and 6 week PSA >.04 (undetectible)
12 week PSA <.04
continent at 10 weeks (no pads!)
kegel's twice a day 20 reps


kcragman
Regular Member


Date Joined May 2008
Total Posts : 240
   Posted 8/16/2008 10:12 AM (GMT -6)   
Yeah. Caffeine is a diarrhetic which means is causes you to loose a lot of water. Anything with caffiene in it is like that - coffee, tea, soda, whatever.

I drink about a cup and and a half of coffee in the morning to a) wake up (caffeine) and b) get the old rear end pipes going (due to the type of coffee bean). (Gack - too much info!) But then I really try to lay off the caffeine for the rest of the day.

For me, tiredness in the afternoon/evening seems to be a bigger issue than caffeine.

After all of this complaining, I have done what I perceive to be some elevator kegels over the past few days, and I have had some sudden improvement. Whether it is coincidental timing, serendipity, or I am a head case, I seem to be getting better just in the past 3-4 days. Friday (yesterday) was one of my lightest days ever.

We'll see...
kcragman
Age: 52
March 2006: PSA 2.5
Dec 2007:   PSA taken for insurance application. I did not see the results until late Jan '08 - after I was rejected. Their lab said PSA 4.5. PSA again in Feb '08: 3.7.
March 2008: Biopsy. Gleason 7 (4+3) 12 cores taken. 5 on the left side were cancerous and the 6th did not look good.
May 5, 2008: Da Vinci robotic laparoscopy at GW Hospital, Washington DC.
Post op: Gleason 9 (4+5). 15% of prostate involved. Stage: pT3a. Negative margins. Lymph nodes and associated glands all appear to be cancer free.


IsleofGough
New Member


Date Joined Jul 2008
Total Posts : 12
   Posted 8/16/2008 3:26 PM (GMT -6)   
I'm glad for you. My urologist said that improvement generally comes quickly when it eventually comes. May it continue.
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