A Night From Hell

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Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 4/18/2010 7:44 AM (GMT -6)   
I had been bleeding more the past 4-5 days, not a lot, but still, blood.  And still getting debris in the catheter bag.  Past couple of days, more and more intense spasms that caused a lot of leaking.  The leaking has been so bad, I can't leave the house unless I am wearing a full guard or pad.
 
Yesterday, didnt seem like I was getting much outflow from the cath, but had been walking a lot more, on my feet more, it was a hot day.  Empted the night bag at 10 pm, usually it for the night.  Woke up around 11:30 and had wet myself.  Nothing in the bag.  Put on a pull up  (hadnt used one of those in over a year) tried to get back to sleep), soon was wetting that, nothing in the bag.
 
I knew then that my cath was blocked for sure.  Any other nite, would have woke my wife up, and she could try to irragate me.  But she has been so sick lately allergies and cold, hardly been sleeping.  She was sleeping well, so I was up most of the night, slept 10-15 mins at a time, then have forced painful relief through the penis, each time leaving my bladder neck even more raw and sore.
 
She woke up at 8, and I told her.  Fortunately, we still had a full sterile irragation kit my uro gave us months ago and never used.  She did the nurse thing, and was able to resolve the blockage.  There was a bunch of heavy debris and blood, and even blood was starting to dry and clog the catheter tube itself.  Eventually the bladder was emptied without too much pain, and nothing but the water was coming back out.
 
She had to really clean around the SP opening, it was raw and yeasty from sitting in urine during the night, and we put on a new catheter holder, one of the good ones I ordered.
 
Right now, seems to be draining.  I am drinking plenty of water, was afraid to drink during the night because I knew it would have to come out.  Draining a lot of bloody urine right now, but to be expected, as she stirred up things with the irragation.
 
If it clogs again, or doesn't feel right, my uro is in town tommorow, and I may have to see if he can see me a week earlier.  Something had to be causing all the bleeding and leakage in the first place.  I am suppose to see him on the 26th anyway, he may just have to fit me in tommorow if needed.
 
Thank goodness I am married to a nurse.  My doctor did not want me going to the local ER, they would have screwed this procedure up too.
 
Resting now, hurting, but feeling like we may be back in business.
 
David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14 out - 27 days, Cath #15 - 3/29


Burlcodad
Regular Member


Date Joined Nov 2009
Total Posts : 254
   Posted 4/18/2010 8:06 AM (GMT -6)   
David
 
Hope you have a better day today.  You have been so much - I hope things get better.
 
Ray
Diagnosed 9/09 at age 54  
PSA 6/09 1.3
Stage 2b (biopsy done because of firmness felt on right side) 3 positive cores out of 12 (all less than 25%) Gleason 6
 
Surgery  1/13/10 at UP- Penn Presbyterian - Dr David Lee. Home 1/14/10 Nerves spared on both sides -Catheter removed 1/19/10  Path report scheduled for 2/11/10
 
Pathology Report Gleason score was upgraded to 7 (3+4)
no capsular involvement, seminal vesicles clear, lymph nodes clear, negative margins, gland involvement 2-10%
 
Since report was good and recovery going well next appt is now  the first psa test appt scheduled for 4/22
 
Incontinence - Initial 6 pads a day, 3 Weeks - 3 pads a day relatively dry at night
 
ED - yes but seeing some improvements - levitra 10 mg 2x week
 
 


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4088
   Posted 4/18/2010 8:23 AM (GMT -6)   
Wow David: Next time get that thing fixed. I know Peggy does not mind loosing a bit of sleep to make you feel better. After the fix was she able to get back to sleep? You should never push yourself in that way my friend.

I crashed at 9pm last night usualy not in bed till 11 or 12. Just was exausted for the car show. Out till 8 AM....Dressed and ready for church. Will pray for you and give thanks for the beautiful day yesterday and for our successful show for the children that fight the Big C.

We had 15 child cancer servivers at the show.

Your Cajun Brother
Cajun Jeff
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1 pre cancer core
10/08 Nerve-Sparing open radical
Surgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clear

3 month: PSA <0.1
6 month: PSA <0.1
10 month:PSA <0.1
1 year: PSA <0.1
16 month:PSA <0.1

ED - Started Cialis at 3 months, tried all 3, 6 months added pump, 9 months Tried MUSE (YUCK) Bad experience.
1 year mark Found new Urologist visit was at 14th month post surgery
Started Injections, Caverject! (Success)
17 month: ED making improvements : Oral Meds gets me 85%


tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2840
   Posted 4/18/2010 8:56 AM (GMT -6)   
David - so sorry to hear about another night from hell - just as you have said to others here at HW about taking your meds when in pain ... Peggy is there to help you and be by your side , no matter what ... call on her when you need her....
-very glad you have an accommodating uro... here's to many resolutions tomorrow ... and a quiet and uneventful today (and tonight)

hugs
BRONSON
.................
Age: 54 - gay - with common-law spouse of 13 years, Steve - 60
PSA: 04/2007- 1.68 - 08/2009 - 3.46 - 10/2009 - 3.86
Confirmation of Prostate Cancer: October 16, 2009 - 6 of 12 cancerous samples , Gleason 7 (4+3)
Doctor: Dr. Mohamed Elharram -Urologist / Surgeon - Peterborough Regional Health Centre
Radical Prostatectomy Operation: November 18, 2009 , home - November 21, 2009
Post Surgery Biopsy: pT3a- gleason 7 - extraprostatic extension - perineural invasion - prostate weight - 34.1gm -
ED Prescription: Jan 8/2010 - started daily 5mg cialis - girth back to normal -but not much length - will go for trimix in April when I see doc
Incontinence: Feb 2010- 3-5 pads/1-2 clothes changes/day- March 3, 2010 - week 14 after surgery -finally seeing improvement - March 29- incontinence better - 1-2 pads a day - one pad at night
location: Peteborough, Ontario, Canada
Post Surgery-PSA: - April 8, 2010 - 0.05 - I am in the ZERO CLUB - hooorah!
............


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 4/18/2010 8:57 AM (GMT -6)   
Thank you, Ray, there is never and end to the fun for me,lol. Thanks for the concern.

Jeff, what can I say? As long as the pressure was being relieved by sheer force, there was no way I was going to bother her little bit of sleep as sick as she has been unless I felt like I had total blockage with no relief, I would have woken her earlier.

Can't express to anyone enough, that being on my 15th cath since Oct-2009, and being on this SP since October 1 continuously, there are times I feel like i just can't take anymore pain and discomfort. I know there are many that suffer worse, I really believe that, but I feel like I am on an endless treadmill, going round and a round.

Jeff - so glad your car show went so well, its for such a good cause, and sounds like you had a grand turnout, congratulations.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14 out - 27 days, Cath #15 - 3/29


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2457
   Posted 4/18/2010 3:34 PM (GMT -6)   
David,
I pray that you don't have another night like you had last. You are lucky to have a loving and caring wife like Peggy taking care of you. God bless you both.
Age: 67 at Dx on 12/30/08
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
2 cores out of 12 were positive Gleason (4+4) and (4+5)
Negative CT scan and bone scan done on 1/16
Robotic surgery performed 2/9/09 Dr Fagin, Austin TX
Pathology report:
Prostate weighed 57 grams size:5.2 x 5.0 x 4.9 cm
Posterior lateral lesions measuring 1.5 x 1.4 x 1.0 cm showing focal capsular penetration over a distance of 3mm in circumference.
Prostatic adenocarciroma accounts for approx. 10-20% of the hemisphere.
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx, Negative margins
seminal vesicles clean, lymph nodes: not dissected
continent after 4 months
8 weeks PSA test 4/7/09 result <0.1
5 months PSA test 7/9/09 result <0.1
8 months PSA test 10/9/09 result <0.1
11.5 months test 1/21/10 result 0.004


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 4/18/2010 4:11 PM (GMT -6)   
Bronson, thanks for your kindness, you too Ed.

We both stayed home today. I have been on the night bag all day, didn't want to aggervate an already sore and swollen bladder neck. My wife appears to have bronchitis, not getting any better, but those nurses make the worse patients. I am hoping she is going to call in sick tommorow, something she has only done one time in seven years, and see her GP.

Me, finally, after days of slow out put, lots of blood and debris, I just emptied about 1500cc of almost totally clear urine, that made me feel a little better about things.

My doctor and I are going to have to come up with a better long term plan for me and the constant stricture/catheter lifestyle. Approaching the 7 month mark now quickly, and I honestly feel there is no answer that is acceptable.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14 out - 27 days, Cath #15 - 3/29


rob2
Veteran Member


Date Joined Apr 2008
Total Posts : 1131
   Posted 4/18/2010 4:25 PM (GMT -6)   
I hope you have a better night. Agree that you need to have a talk with your doctor. You are on the road to recovery with the PSA and have this one nagging horrible issue to deal with. Hope tomorrow is better for you.
 
Age 48 at diagnosis
occupation accountant
PSA increased from 2.6 to 3.5 in one year
biopsy march 2008 - cancer present gleason 7
Robotic Surgery May 9, 2008 - houston, tx
Pathology report -gleason 8, clear margins
22 month  PSA <.04
continent at 10 weeks (no pads!)
ED is still an issue


gibson00
Regular Member


Date Joined Nov 2009
Total Posts : 212
   Posted 4/18/2010 4:37 PM (GMT -6)   
Does your uro know what is bleeding?
Can they do a scope and try to correct it?
My father went through a few months of what you describe, but with a foley.
After about 2.5 weeks of radiation to his prostate, the bleeding has finally stopped (knock on wood..).

Hope you are feeling better.
Father 65 y/o at diagnosis November 2009
Gleason 9 & 10, stage 3 - seminal vesicle involvement
Two TURPs mid Nov. 2009
Foley Catheter
Casodex for last two weeks of November '09, then Lupron.
Suprapubic Catheter March 18th, but blocked right away, back to Foley...
Started IMRT March 25th, Chemo on hold due to catheter bleeding issues, etc.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 4/18/2010 6:22 PM (GMT -6)   
rob, while i am thrilled with finally getting a zero since my salvage radiation treatments, this never ending stuff down below never seems to get even remotely better.

gibson, having spent over 100 days of a variety of foley catheters before this SP was inserted, I can attest that the pain levels I feel would be so much worse with a foley, even my uro agreed with that. my radiation ended over 4 months ago, and i still have periods of strong penile and rectal pain.

right now, my uro realizes that there is no easy way to scope me without putting me under as a day surgery due to the level of pain and inflamation at the bladder neck. we were hoping by letting another month go by with just the SP cath in place, that some more healing would take place, but so far, nearly a month later, its not even 1% better, wouldn't say its worse, would jsut say no improvement.

last time he had me put under, and scoped me, post radiation, he said the inside of my bladder looked very enflamed and damaged. this was not suppose to be the case after radiation, but in my case, part of the collateral damage that took place.

david in sc
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14 out - 27 days, Cath #15 - 3/29


gibson00
Regular Member


Date Joined Nov 2009
Total Posts : 212
   Posted 4/18/2010 7:14 PM (GMT -6)   
Sorry to hear that.
My father had his SP done about 3-4 weeks ago, but he was still bleeding so much that it plugged immediately, so they had to cap it off and continue using the size 20 foley. He did go through a ton of pain via bladder spasms and irrigating large blood clots via the foley.
Right now he is about 3 weeks into radiation. After his bleeding stopped, he had two remaining troublesome points, constipation due to his prostate pushing into his rectum, and pain in rectum up through his abdomen. Really huge prostate in there, being further aggravated by radiation.
Not sure what the plan is after treatment......not sure if his 8cm x 6cm prostate will really shrink much....
Currently he is on 18mg dilaudid contin 3 x per day, and 3mg breakthru shots several times a day.....not a fun trip...
Father 65 y/o at diagnosis November 2009
Gleason 9 & 10, stage 3 - seminal vesicle involvement
Two TURPs mid Nov. 2009
Foley Catheter
Casodex for last two weeks of November '09, then Lupron.
Suprapubic Catheter March 18th, but blocked right away, back to Foley...
Started IMRT March 25th, Chemo on hold due to catheter bleeding issues, etc.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 4/18/2010 7:34 PM (GMT -6)   
Feel bad for your father, sounds like a real rough ride. I am assuming he did radiatio as his primary treatment. As a rule, SP's are less likely to clog, in nearly 7 months, last nights blockage was the first real one for me. Thank goodness my uro, understanding the severity of my blockage problems, had given us that irragation kit, and fortunately, as a nurse, my wife knew how to use it properly. She was amazed how small a capacity my bladder now is, compared to all this mess happening to me. As long as I have been on caths, from what I have read, the bladder capacity keeps shrinking over time. She said she only injected about 90-100 cc of sterile water each time, and it acted full. I know that one time when I had to have a foley put in at the ER (12-2008), when it entered the bladder over 450 cc came out.

The longer my bladder doesnt have to work, the harder it will be to retrain it to work, so its a catch 22.

Due to my wife's sickness, I finally this evening had to put on a leg bag for the first time today, and go and pick up meds for her. Just a 4 mile round trip to Walmart in my car and back got me all enflamed again.

My thoughts are with your father, I empathize completely with his current plight, and only wish him some relief.

David

PS Most of the bleeding, is from spasms causing the inlet of the catheter to rub against the bladder wall as a rule, in my case. I dont have any issues with the "hole" that the tube exits my body. I keep that clean and dry at all times. I still average a dozen to a dozen and a half severe spasms each and every day. I assure you, you never get use to them, each of them hurts. Tonight, been having some 'dry" ones, and they hurt so much more than the "wet" ones, at least some pressure is released with those kind.
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14 out - 27 days, Cath #15 - 3/29


60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2215
   Posted 4/18/2010 7:36 PM (GMT -6)   
David,
Sorry to hear about another problem with pain and the cath. Rest well tonight if possible and hang in there. You will have one hell of a story to tell your Grandchildren someday.
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 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
2 pads per day, 1 depends but getting better,
 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, 6 1/2 month psa.5
Starting IMRT on 1/18/10, Completed 39 tx at 72 gys on 3/12/10
Great family and friends
Michael


mvesr
Veteran Member


Date Joined Apr 2007
Total Posts : 823
   Posted 4/18/2010 7:38 PM (GMT -6)   
David

Sorry you had a bad night. Hoping things will be getting better for you. All the best to you.

Mika
age at dx 54 now 57
psa at dx 4.3
got the bad news 1/29/07
open surgery Duke Medical Center 5-29-07
never more than 2 pads
ED is getting better
the shots work great, still can't give them to myself
two years of zero's
Retired again after 36 years February 1, 2010


gibson00
Regular Member


Date Joined Nov 2009
Total Posts : 212
   Posted 4/18/2010 7:51 PM (GMT -6)   
David, I assume your docs have tried giving you Ditropan in an effort to curb the spasms?

Yup, my fathers main treatment is ADT, and IMRT with small doses of Taxotere.

They never considered surgery due to the fact that there was already seminal involvement. Iwonder if it would have been better to have had the surgery anyway...
Father 65 y/o at diagnosis November 2009
Gleason 9 & 10, stage 3 - seminal vesicle involvement
Two TURPs mid Nov. 2009
Foley Catheter
Casodex for last two weeks of November '09, then Lupron.
Suprapubic Catheter March 18th, but blocked right away, back to Foley...
Started IMRT March 25th, Chemo on hold due to catheter bleeding issues, etc.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 4/18/2010 8:09 PM (GMT -6)   
gibson, i think your father's drs wisely passed over surgery for him, with his specs, it highly doubtful it would have been contained, and he would still be going through what he is going through no. i have been on ditropan since oct of 2008, anytime i am on a cath. i take from 2 -3 tablets a day. i swear i msut be immune to the stuff, i am not convinced its helps, either that, or things would 10x worse if i didnt take them.

thank you michael, my grand children visited today, and the first thing my grandson Ansel said, was poor grandpa still has a tube, lol. kids don't miss a trick, he almost 5.

thank you mika, alway appreciate you

david in sc
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14 out - 27 days, Cath #15 - 3/29


IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 4/18/2010 8:26 PM (GMT -6)   
Hi David,

Pardon me if this has been asked of your before. Let me start this way.

May daughter had a terrible time with a medical treatment that wasn't going anywhere with a specialist in the area for a chronic condition.

After years of failed attempts by the local specialist, her primary care doctor contacted other specialists in Idaho and in three other states and came up with some options for us. We worked through the other doctors in person and by phone conference and decided to travel to see a specialist out of state who implemented a successful treatment plan.

Is is possible for one of your doctors to conference with other specialists in the area or out of state to give you some more options, or has this already been done?

Kind regards,

Barry
Surgery: Da Vinci; July 31, 2007; 54 on surgery day;
Pathology: PSA: 4.3; Gleason: 3+3=6; T2a; Confined to Prostate;
Post RP PSAs: 09/'07 <0.04; 12/'07 <0.04; 03/'08 <0.04;
06/'08 <0.04; 12/'08 <0.04; 06/'09 =0.06; 09/'09 <0.04; 12/'09 =0.05;
Latest PSA 3/'10 <0.04


polfred
Regular Member


Date Joined Dec 2009
Total Posts : 62
   Posted 4/18/2010 8:32 PM (GMT -6)   

I'm so sorry you are having such a hard time.  I hope this get better for you very soon. I will say a special prayer for you and your wife.

jan


Age 59
PSA 9 on-08-09
Given antibiotics for 1 month/
PSA 10 on 10-09
Biopsy 11-18-09-Results 10 of 12 cores positive
CT and Bone scan negative
Diagnosed on 11-20-09
Lupron injection/ 7 dys of casodex on 11-20-09
Markers placed on 12-15-09
Planning scan scheduled 1-18-2010/ 8 wks radiation to follow
Treatments began 1-20-2010
Lupron injection-3-1-2010
Radiation treatments end (54)-3-26-2010
PSA undetectable/ 3-26-2010
 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 4/18/2010 8:42 PM (GMT -6)   
barry what you suggested is coming up next via my uro, we have been waiting for me to heal enough down there to even consider the next step, we keep hoping for some improvement, as of today, stilll not there, thanks as always

jan, thanks, my wife is so sick with bronchitis, taking off work sick tommorow, only 2nd time in nearly 7 years has she done that. we were a pitiful pair today when my sons and grandkids came to visit. you would almost think we were old people.

david in sc
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14 out - 27 days, Cath #15 - 3/29


DJBearGuy
Veteran Member


Date Joined Dec 2008
Total Posts : 714
   Posted 4/18/2010 9:59 PM (GMT -6)   
Hi David,

It occurred to me that this might be something for your docs to consider: I have a relative who had muscle spasms in the back for decades. Valium used to help, but lost effectiveness. Went on a trial and error drug of the week for several months. Finally found something that worked: paxil. Strangely, only paxil, not similar drugs like prozac.

Of course the bladder is not the same as the back, so maybe I don't know what I'm talking about.

DJ
Diagnosis at age 53. PSA 2007 about 2; PSA 2008 4.3
Biopsy September 2008: 6 of 12 cores positive; Gleason 4+3 = 7
CT and Bone scan negative
Da Vinci surgery at City of Hope December 8, 2008
Radical prostatectomy and lymph node dissection
Catheter out on 7th day, replaced on 8th day, out again 14th day following negative cystogram
Pathology: pT2c; lymph nodes negative; margins involved; 41 grams, 8% involved by tumor; same Gleason 4+3=7
PSA 1/22/08 non-detectable! 8-)
4/23/09, 07/30/09, Oct 2009, Nov 09, Feb 10 still undetectable (<0.01)!


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 4/19/2010 8:30 AM (GMT -6)   
DJ - that was an interesting fix for that problem for sure, not the normal use of the drug, but if it works, it works.

The only reason I am having bladder spasms, is because of having a catheter in place. During the times of this journey when I was cath free, I never ever have even a single one.

The dr. said that the bladder senses the prescence of a "foreign" object in itself, and its trying to "help" by expelling the object by squeezing down on it. It's not natural to have something that large in the bladder. For most men, its a one to two week event, and the bladder gets over it quickly. Its not natural or normal to have one that is nearing the 7 month mark without interuption, and the SP type is more invasive to the bladder, as it actually enters through the side of a surgically produced hole in the bladder. At least with a foley, its following the natural path and direction of the urethra and then entering through the actual bottom of the bladder.

The ditropan I take, is a low level muscle relaxers, that is suppose to chill out the bladder walls to make them less likely to keep its attempt to expell the catheter, either I have grown immune to the med over time, not sure if you can or not, or else my bladder is one tough nut and just keeps trying.

The most common time for me to have a spasms, is if I have been lying down or sitting down for a long period of time, and then standing up and starting to walk, that is almost a guarantee to have one.

Sometimes turning on a faucet will trigger a spasms, its that mental connection about needing to go to the bathroom and hearing water.

The only real cure and end to this physical hell, is to be catheter free. I dream of such a day, but until a better method can be thought of, I am in a true limbo or purgatory of this current world.

I have learned to adapt to what most men here would seem impossible. I read how much probably 90% of the men here that have had surgery feel about their short catheter time. To many, its the worse part, and thats only for a week or so. Its really hard to imagine this day after day, month after month.

When this SP was put in on October 1 of last year, the longest I dared to think it would be in me, was either to late December of last year or worse case , Mid-January of this year. Here it is almost May, and there's no end in site.

Adjust and adapt, and endure. That is my strategy in the meantime.

Thanks for the sugestion, I will listen to anything at this point.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14 out - 27 days, Cath #15 - 3/29


gibson00
Regular Member


Date Joined Nov 2009
Total Posts : 212
   Posted 4/19/2010 8:44 AM (GMT -6)   
Well, even though I said knock on wood, wouldn't you know it, my father ended up bleeding into his bag again last night.
Looked better this morning, but was still a rust color, wondering if he maybe has an infection...

His bladder spasms really seemed to subside when he was able to go from a foley to the SP, but that also coincided with the bleeding having stopped.

When he was bleeding a lot a couple of weeks ago, and was still on the foley, they had him on a constant flush, some sort of two or three way catheter thing.....bags of water went in one into his bladder, then out the other. Started running clear which, again, also coincided with a couple of weeks of radiation...

Hope they figure out a way to get your bleeding to stop, which in turn would hopefully resolve a lot of your issues.

I think they also give my father Flowmax, but not sure if that helps with bladder spasms at all......
Father 65 y/o at diagnosis November 2009
Gleason 9 & 10, stage 3 - seminal vesicle involvement
Two TURPs mid Nov. 2009
Foley Catheter
Casodex for last two weeks of November '09, then Lupron.
Suprapubic Catheter March 18th, but blocked right away, back to Foley...
Started IMRT March 25th, Chemo on hold due to catheter bleeding issues, etc.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 4/19/2010 10:03 AM (GMT -6)   
Since my wife irragated the catheter yesterday morning, I have been flowing decent again. First bag was nasty looking, but most since then have been "normal", ranging from almost clear to more of the standard yellowish urine collor. Have noticed still a lot of minor debris coming through. In retro, I think the tube was slowly clogging up as much as week ago, as I was bleeding more, and the output was dropping off. Should have had it irragated then, I will remember that in the future.

One of the selling points of an SP, is it suppose to lessen spasms, but I can tell you for sure, from being on both long term, there's not a dime's worth of difference on the spasms. THe very worse was the two times that I had both the SP and a foley in at the same time. Talk about torture. If you know you are going to have to be on a catheter for more than a month, I still say, an SP is the way to go. Not that either one is something one dreams about, lol.

I am taking another day of staying off my feet, as my wife is taking a rare sick day herself. My bladder neck is still very sore from what it went through the other night, so if I dont have to walk around much, or drive today, or put on the leg bag, it will make it easier for me the rest of the week.

I hope your father has a better day.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14 out - 27 days, Cath #15 - 3/29


Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 310
   Posted 4/19/2010 12:11 PM (GMT -6)   

You are truly one tough man.  I am 99.9% certain that I could not have endured everything you have gone through.

Zen9


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 4/19/2010 12:35 PM (GMT -6)   
Zen, I always appreciate remarks like that, but in reality, I am not tough, I hate pain as much as the next human, and if anything, all these events have made me more gunshy to pain. If I have anything going for me, I guess it's that I adapt very fast to whatever reality I am faced with. When I had my original op, and I found out the next day that my original cath had to stay in 30 days, it was like the worse thing in the world to me. I fought it hook and crook those 30 days. But now looking back, that was nothing, compared ot the t ime and the other 14 caths I have been on since. And the alternative? Any man or woman that has even suffered a single total urinary blockage, has no concept of long, agonizing, scale "10" pain feels like. So the worse of the worse of my catheter sufferings including spasms, is but a drop in the bucket to having total blockage. Everything is relative I suppose.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14 out - 27 days, Cath #15 - 3/29

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