Night of Hell - 3 Catheter Blockages - No End to this Misery

New Topic Post Reply Printable Version
26 posts in this thread.
Viewing Page :
 1  2 
[ << Previous Thread | Next Thread >> ]

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 5/13/2010 8:48 AM (GMT -6)   
This lovely cath, #16, was put in 4 weeks ago, to replace a terrible one.  First week all was well.  The past 2 Saturday mornings woke up to  total blockage, wife had to irragate the cath, then it would be fine again.
 
Last evening, as I was on the HW Chat group, went from flowing fine into the Night Bag to being totally blocked up.  It found a way to relieve itself by making a big wet mess all over the place.  Shortly after, the pain in my bladder maxed out, and I woke my wife up, and she irragated the cath 3 times, and all seemed well.  Was in pain, but least I was flowing again.  Woke up at 0430 to severe bladder pain, and total blockage.  I stayed in the bathroom until my wife woke up at 0600, didnt want to wake her again.  She irragated again, got things flowing.  THen she had to go to work
 
Put a call into my uro, spoke to his nurse (who knows my situation very well), he isnt working in my area today, but he suppose to call my cell and have me meet him at his main office this afternoon early.  I appear to still be flowing, but for how long, I don't know.
 
Really spooked about the whole thing, when the cath backs up, it forces the bladder neck to open with great pain and stress, the one part of me that is still the most damaged.  Still don't know why out of 16 caths,  that I have only had cath blockage problems on the last 2, including this one.
 
Either way, not going to be a fun day, he will probably want to swap it out a week and a half ahead of scedhule, and so far, all the SP cath swaps have been major pain level events, so not looking forward to that.
 
Will check in later, to tell how this has been resolved.   Got at most, 2 hours total sleep last night.
 
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, next one:  July
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- 27 days, Cath #15 - 26 days, Cath #16 - 4/23 put in


Burlcodad
Regular Member


Date Joined Nov 2009
Total Posts : 254
   Posted 5/13/2010 9:06 AM (GMT -6)   

I am so sorry David

 

Hope you are doing better now

 

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
 
Post OP 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
 
POST OP PSA   4/10 <0.1,
 
Incontinence - Initial 6 pads a day, 3 Weeks - 3 pads a day relatively dry at night , 3 Months mostly dry 0-1 pad per day
 
ED - yes but seeing some improvements - levitra 10 mg 2x week 3 months  100 mg almost daily
 
 
 


Jerry1
Regular Member


Date Joined Mar 2007
Total Posts : 460
   Posted 5/13/2010 9:11 AM (GMT -6)   
 
David,
 
I feel so bad for all the apin you are having do your doctors see any end in sight to solve this problem?
 
Jerry1
Age 70
DX 8/13/08 , PSA 4.0, Biopsy 14 samples 1 positive 12% of sample,
Gleason Score 4+4 =8  Bone scan and MRI negative
Da Vince surgery on Oct 17, 08 Florida Hospital Dr Vipul Patel
Post Gleason report  4+4 = 8 Lymph nodes on both sides negative
margins Negative  Stage II (pt2a) 
Cath out on October 29th left in longer due to small leak.
11/19/08 dry no more pads
12/2/08 first PSA <0.1
 3/6/09 6 Month PSA 0.0
6/3/09 9 month  PSA 0.1
7/14/09  PSA still 0.1
10/15/09 PSA 0.3
10/26/09 surgery to remove 3 clips in bladder neck  
11/16/09 PSA 0.3
12/14/09 PSA 0.4 
12/28/09 PSA 0.5
Start salvage radiation treatments on January 18th. 
Finished IMRT


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 5/13/2010 9:22 AM (GMT -6)   
Yeah, it really sucks. No real change in game plan, until there is evidence that the damage post radiation has healed properly.
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, next one:  July
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- 27 days, Cath #15 - 26 days, Cath #16 - 4/23 put in


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4157
   Posted 5/13/2010 9:38 AM (GMT -6)   
Dear David:
 
I am so sorry to hear about your latest issues...it seems like this just goes on and on for you on this.  You have certainly endured more PCa he** than any man should have to take.
 
The following is submitted respectfully and only out of consideration for you.  I know you have great faith in your local doctors but....it really seems to an uninformed observer that your case has exceeded your physician's skills.  Maybe not but....I think if I were you I would high tail it to Duke or Atlanta to see a specialist who might at least give you a non-local opinion of what the heck is going on...
 
Tudpock (Jim)
Age 62, Gleason 3 + 4 = 7, T1C, PSA 4.2, 2 of 16 cores cancerous, 27cc
Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 4/10/10.  6 month PSA 1.4 and now 1 year PSA at 1.0.  My docs are "delighted"!

60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2222
   Posted 5/13/2010 10:15 AM (GMT -6)   
I know that you are hanging in there David and I keep thinking that you are going to turn the corner anytime. Please prove me right soon. Take care.
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 on 11/28/10
Starting IMRT on 1/18/10, Completed 39 tx at 70 gys on 3/12/10
6 week Post IMRT PSA .44 a drop from .5 but maybe more
Great family and friends
Michael


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7205
   Posted 5/13/2010 10:30 AM (GMT -6)   

David:

This is just horrible.

I hope some day you entertain  some possibilities regarding seeing other specialists.

This is such a miserable situation.

Mel

 


63 years old . PSA-- 3/08--2.90; 8/09--4.01; 11/09--4.19 (Free PSA 24%),  after 45 days on cipro! DREs have always been normal. PCA-3 was about 75 (way above the 35 threshold). That led to:

Biopsy on 11/30/09. 5 out of 12 cores positive. Gleason 4+3. 2 cores were 3+3 (one 5% and the other 30%) on one side. On  other side:2 cores are 4+3 (5%)--1 core 3+4 (30%) no peri-neural invasion. prostate is 45 grams. Stage: T1C.  

Surgery with Dr. Menon at Ford Hospital, 1/26/10. He says all looked good. Spared nerves. Unfortunately: Pathology Report: G 4+3 (65%-35%). Cancer in 15% of gland. Lymph Nodes: Clear.  Perineural Invasion: yes. Seminal Vessical Involvement: No.  Extraprostatic Extension: yes.  Positive Margin: Yes-- focal-- 1 spot .5mm. Final Weight is 52.7 gms.  (Second opinion from Jon Epstein at Hopkins confirmed these results)

 Incontinence: joined that club-- definite leaks—1 pad/day. Night is dry, was  using 1 pad at night for security, but pretty much dispensed with that most nights. Update: no pads at night. No pads while at home, but still very uncomfortable. Use 1 pad for out-of-house activities. Suddenly got MUCH better on 3/10/10, almost overnight. Still some urgency but no pads about 90% of the time.  As of 3/12/10--completely continent! Uh...OH. As of about 3/16/10 problems with constant urgency although no pads needed--feels like an infection but none showing in urine.

Update: since late March all is well in that area. I would say 99.9% continent (a spurt here and there, maybe 5 spurts per week).

First post-op PSA on 3/10/10--DRUM ROLL: 0.01 Next PSA in mid-June.


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4106
   Posted 5/13/2010 10:35 AM (GMT -6)   
Oh David,

sooner or later you have to be up for a break!

You know I will be thinking about you.

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%


Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 5/13/2010 11:34 AM (GMT -6)   
David,

You know I love you like a brother. I know that you have done your own research all along this Purgatory Path of yours and made sound decisions.

However, I agree with some of the other very concerned posts. Set yourself up with a specialist and let's go see him.

I do mean "let's" in the literal sense. I will pack the "Beast" as you so lovingly call my 40' behemoth RV and come up there and pick you up and take you where you need to go. We'll have plenty of room and comfort. I'll pack it with the steaks and lobsters and shrimp that I am not using for the trip to Arkansas (the regional was moved to Tampa) and we will eat well, sleep well and travel where you need to go.

Tell Peg to take some time off if she can and go with us. I have grown accustomed to the "Road B*tch" title and will see that you have a great trip.

Let's get this stuff resolved and get you some peace and comfort. You have dealt with it long enough.

Take me up on this offer please. This is not one made in haste and without thinking it through. I have been thinking about making this offer for a while.

What do you say my brother. Let's take this show on the road and let you "CATCH A WELL DESERVED BREAK. My son will be done playing the regional by Monday. I really doubt they will make it to the National Championships in North Carolina and I don't really have anything planned until a trip for Lynn starting June 10th.

Make the calls, set r up and let's Git R Dun.

Sonny
60 years old when diagnosed
PSA 11/07 3.0
PSA 5/09 6.4
Diagnosis confirmed July 9, 2009
12 Needle Biopsy = 9 clear , 3 postive
Gleason Score (3+4) 7 in all positive cores
da Vinci 9/17/09
Post Surgery Pathology: GS 4+3=7
Stage: T3a
Tumor Volume 12.5%
positive margin, extra-prostatic extension
30 day PSA 0.4, 50 day psa 0.53, 64 day psa 0.6
IMRT completed 1/15/10 35 treatments- 70Gy

2/24/10 FIRST POST RAD PSA 1.0---CARRRP --waiting for the next test.
3/22/10 Second Post RAD PSA 1.5 Dammmmnnn stubborn son of a gun
4/19/10 YAHOO PSA dropped to 1.2 Moving in the right direction.
5/7/10 PSA test 1.3 Sodium Fluoride PET Scan & CT SCAN - NO METS


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 5/13/2010 12:19 PM (GMT -6)   
Thanks for the offer Sonny, coming from you, I know its for real and from your heart. Thank you too, Jeff, and others above.

For the last time, until I can "heal" from the radiation damage, there isn't anything else that I can do but to endure and bear and cope the best way I can. My dr. has already talked to a top expert, but they both agreed as long as I was having so many on-going post radiation issues, any other treatment or procedure is out of the question.

I am seeing my dr. at 0830 at his main office in Greenville. If needed, my wife can irragate me again this evening, in the night or first thing in the morning if needed until I see the doctor. One of the dangers of a long term SP tube, is that the "hole" can put the squeeze on the catheter over time, it thinks its doing the body a favor by trying to close off the hole. Since my healing is no where ready to justify eliminating the SP cath at this time, he thinks the best shot, is to remove this cath, and to install the next size bigger in diameter one, as it would allow better flow, and at the same time, be less prone to be squeezed by the "hole". I feel this may help, as the past 3-4 blockages, there doesn't seem to be any blood, debris, or sediment clogging. The irragations force the cath back open and allow relief.

No matter how well meaning all of your are, and even defensive about my situation at times, and I appreciate that for real, the problem isn't a doctor problem, or even a procedure problem, its a complicated issue with little recourse.

I curse the day that I ever agreed to the SRT, that decision went against everything my gut feeling was telling me. In hind sight, I would not have done it, even though it meant my recurrance would quickly get out of hand. I mean this strongly. I knew what hell I would go through if I went through another major radiation regeime, and I was right. The clinic doesnt care, they got their 200K plus out of my insurance company, and after I became damaged goods from their treatment, they dumped me back to my uro to deal with. He hasn't caused this problem, the radiation caused it.

Thanks Sonny, I know you meant well. But getting somewhere else is not the issue or an issue. You and Lynn enjoy that rig, go visit some more of the brothers here if you get a chance.

Me, still in my robe, no point getting dressed today, hoping to pass out and take a nap at some point. It may be a long night ahead before I see the doctor.

David in SC

P.S. Still getting a pretty decent flow into the "big bag" since about 10 AM this morning, hope it stays that way, though most of the blockages only seem to happen at night.
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, next one:  July
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- 27 days, Cath #15 - 26 days, Cath #16 - 4/23 put in


142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6949
   Posted 5/13/2010 12:37 PM (GMT -6)   
David,
I was hoping that when you 'disappeared' last night that it was (almost) anything else - but had the gut feel what was happening.
It won't really sound like what I want to say, but hang in there. We're cheering for you.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 5/13/2010 12:42 PM (GMT -6)   
142, the blockage just got much worse in the middle of the chat, so I dropped out. Finally had to wake my wife up to help me.
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, next one:  July
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- 27 days, Cath #15 - 26 days, Cath #16 - 4/23 put in


Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 5/13/2010 1:09 PM (GMT -6)   
David, I'm sorry to read that once again you've got an issue that's causing pain and distress.

Like the others (and Sonny for real ! ! ! ) I just want to scoop you up and put you some magic place where all would be solved for you. But, I can understand that this is an issue that only time and healing will resolve --- that it's not a question of treatment. Still, I hope you're keeping an open mind --- who knows, someone may come up with some magic.

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


Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 5/13/2010 1:56 PM (GMT -6)   
David,

I totally understand your position. Just thought I might be able to help. Otherwise, I am just like all of the other brothers and sisters who feel helpless to do anything and knowing that all we can do is to continue to support you in any way we can.

You let me know if anything changes or you just need to get "The h*ll out of town" for a few days,

Sonny
60 years old when diagnosed
PSA 11/07 3.0
PSA 5/09 6.4
Diagnosis confirmed July 9, 2009
12 Needle Biopsy = 9 clear , 3 postive
Gleason Score (3+4) 7 in all positive cores
da Vinci 9/17/09
Post Surgery Pathology: GS 4+3=7
Stage: T3a
Tumor Volume 12.5%
positive margin, extra-prostatic extension
30 day PSA 0.4, 50 day psa 0.53, 64 day psa 0.6
IMRT completed 1/15/10 35 treatments- 70Gy

2/24/10 FIRST POST RAD PSA 1.0---CARRRP --waiting for the next test.
3/22/10 Second Post RAD PSA 1.5 Dammmmnnn stubborn son of a gun
4/19/10 YAHOO PSA dropped to 1.2 Moving in the right direction.
5/7/10 PSA test 1.3 Sodium Fluoride PET Scan & CT SCAN - NO METS


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 5/13/2010 2:57 PM (GMT -6)   
David, how awful! Have you spoken with your uro about a bladder transplant - don't know how common they are but apparently they're done in Europe and Wake Forest has had quite a bit of success with this procedure. Apparently the bladder is created from your bowel so there are no rejection issues. Huge procedure and I don't know what kind of outcomes they're having but thought it worth mentioning.

I am saddened by the damage done by the radiation. I hear you about not wanting it to begin with, especially after your first experience with it. As I've said before, it's not a treatment to be taken lightly. While every situation is different, I sometimes wonder if we're too quick to pull the trigger on radiation after surgery (not saying that anyone's decision is wrong - just kind of thinking out loud here). Oh well, can't undo what's been done. Hopefully the larger catheter will help keep things flowing.

You and Peggy continue in our thoughts and prayers - this can't be easy for her either even if she is a nurse.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (solitary focus of extraprostatic extension). Perineural tumor infiltration present. Apex margin, bladder neck and SVs negative. Final Gleason 3+4. PSA: 0.0 til July 2009. August 2009 - 0.1, September 0.3, October back to 0.0, December 0.0, March 2010 0.0. Next PSA in 6 months. Thank you God!


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2458
   Posted 5/13/2010 3:56 PM (GMT -6)   
And the pain goes on. Sorry about all your problems David. I wish there was something we can do to help. All I can do is say a prayer for you.
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 5 months
2 months 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 months PSA test 1/21/10 result 0.004
14 months PSA test 4/19/10 result 0.005


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 5/13/2010 4:01 PM (GMT -6)   
David,
I am so sorry .... My mind is full of all sorts of potential non-invasive solutions to open a blockage:
-acoustically vibrating your bag with a low frequency, high displacement to shake up the blockage.
-pinching the tube as clsoe to the tube as close to the blckage as possible and then vibrating at high frequency
-pinch off the tube about 6 inches from the block and then vibrate it ultrasonically so the end inside you is wiggling at resonance.
-install irrigation syringe and vibrate the plunger few thousands at 100 Hz. (1 or 2 watts) Mechanically buzz the plunger with anything around that frequency: an engraver, a cell phone vibrator, um...any kind of vibrator.

All of these would result in a microscopic vibration only a few thousandths of an inch but it might just break something free. You would be at the cutting edge of catheter research. Imagine how useful that trick would be. If it didn't work there is always the old standard irrigation.

You are lucky you're not at my house right now. I'd want to be trying something all the time. ;-)

PS. I'm pretty sure you would be doing Sonny a favor if you took him on his the offer. I know at least he would feel a lot better. And you could write it off as a medical expense.

I'd hold your cath bag any day, brother.

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.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 5/13/2010 4:12 PM (GMT -6)   
Sheldon - your reply is closest to being correct in whats really going on. It is not a case of treatment right now, its whatever time it will possibly take to heal, and then other treatments/procedures/surgeries can be considered. My own dr in his heart of hearts, is hoping that when the natural healing part happens, there may not be a need for advanced treatments.

Sephie, one of the advanced operations on the table is to by pass the bladder, and surgically make a new pathway to the outside that eliminates the need for the bladder neck. But it would take an advanced surgeon, of whom my surgeon has already talked to. But that surgeon will not consider doing this until all the inflamation and swelling can be healed from the radiation

Sonny, you are good friend, a good man, a good person. I don't do well on long road trips, lets say much over 100 miles each way, so if I ever had to go to a far away doctor, I would probably need to fly. If you ever get itchy to see northern New England, I would love to go back one and re-trace where I use to eat.
__________________________________

6 PM update: bag still flowing clear, wife is home, we got enough irragation supples for two more attempts if needed. she is going with me in the morning before work, so that the dr will have the option to heavily sedate me if needed, he likes using Demoral, and obviously I couldnt drive myself home if injected. Just got to make it through the night without any major issues.
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, next one:  July
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- 27 days, Cath #15 - 26 days, Cath #16 - 4/23 put in


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 5/13/2010 5:48 PM (GMT -6)   
David I have just read your latest setback. I was really sorry to read of your pain and distress and hope as I post this you are getting some well deserved peace and rest. You are extraordinarily lucky to have such a woman at your side with all the skills she possesses. I shudder to think how much difficult it would have been if she were not there. You are right of course on the medical front. No doctor, no matter how great his skills, is going to improve the situation till the internal burns heal substantially. Burns, as we know are about the most painful and difficult injuries to heal as well invariably taking a long time to heal over. An over inflated bladder placing pressure on such damaged sensitive tissue, even if it is on the path to healing, has to cause intense pain. It makes me shudder to even think about it, never mind enduring it as you have done. I truly wish there was more I could offer in the way of comfort and support than mere words. When you are through this ordeal I feel a good holiday is in order and I know just the place, so there is a standing invitation for you and your beloved. I hope to read shortly that you have bounced back after being knocked down once again champ.
A speedy recovery ol' mate,
Bill

Biopsy
4 of 10 cores positive for Adenocarcinoma-------bummer! 
Core 1 <5%, core 2----50%, core 3----60%, core 4----50% 
Biopsy Pathologist's comment: [/color]
Gleason 4+3=7 (80% grade 4) Stage T2c 
Neither extracapsular nor perineural invasion is identified 
CT scan and Bone scan show no evidence of metastases 
Da Vinci RP Aug 10th 2007 
Post-op 
Positive for perineural invasion and 1 small focal extension 
Negative at surgical margins, negative node and negative vesicle involvement 
Some 4+4=8 identified ........upgraded to Gleason 8 
PSA Oct '07 <0.1 undetectable 
PSA Jan '08 <0.1 undetectable 
PSA April '08 <0.001 undetectable (disregarded due to lab "misreporting") 
PSA August '08 <0.001 undetectable (disregarded due to lab "misreporting") 
Post-op pathology rechecked by new lab:
Gleason downgraded to 4+3=7 
Focal extension comprised of grade 3 cells 
PSA September '08 <0.01 (new lab) 
PSA February 09 <0.01 
PSA August '09 (2 year mark), <0.01 
PSA December '09 <0.01   PSA May '10  <0.01


www.yananow.net/Mentors/BillM2.htm


Never underestimate old people ............ you don't get to be old by being stupid.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 5/13/2010 6:59 PM (GMT -6)   
Ed, thank you, one can never have too many prayers. The struggle continues, just another set back.

Worried Jeff, after meeting Cajun Jeff, he has me convinced you are some kind of dedicated engineer/scientist. For certain kinds of blockages, some of your thinking makes perfect sense. The current thinking on why these last two caths have blocked so much is not the result of debris ,blood, or sediment. The perm. surgical hole they cut is putting the squeeze on the catheter itself as it passes through my body and through the bladder wall. Almost the same way that an enlarged prostate puts a squeeze on the urethra passing through it. So his thought of putting a larger diameter tube may be a good fix for now, though I expect it to be painful, as the last two tube replacements were tough to handle. We are on such opposite ends of the wonderful world of Urinary Problems. I hate my chronic problem, because it is so associated with pain when something goes wrong, but I don't think I would be happy in your wet world after this amont of time. Neither one is good, and I keep hoping I hear some amazing news on your end. Appreciate you thinking about solutions for what ails me.

Billy Mac, I appreciate your thoughts too here, your analogy on the burn factor is very accurate. The last time I was scoped, while put under completely the first part of March, my doctor said that the inside of my bladder was really tore up looking and burned. So you can imagine how that translates with urine passing through it constantly. Then one can imagine how an already tore up bladder neck is reacting to the added damage from the radiation, almost mission impossible to heal at this point. My dr has a good understanding of chronic pain management, so I never have to fight or beg for needed pain meds, and he knows that I am not a drug abuser. Want everyone concerned to understand, that I put off taking any prescription pain meds to as late in the day as possible, mostly by sucking it up during the day, as the pain and soreness typically increases through out the day, and depending how much I have been on my feet, walking, etc.
I average two real pain pills a day, on a really bad day, no more than 3. On a very good day, perhaps just 1. Regular tylenol does nothing for me, might as well eat sugar cubes, lol. And I am not allowed Advil or aspirin type meds, as they cause more bleeding, which is obviously counterproductive to healing. It's a shame, as Advil does such a good job on inflamation.
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, next one:  July
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- 27 days, Cath #15 - 26 days, Cath #16 - 4/23 put in


tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2842
   Posted 5/13/2010 7:18 PM (GMT -6)   
Dear David - once again loss for words - you have been able to maintain an even keel and full comprehension of what has to be done first ( post-radiation healing) before any long term changes - you have our love and support in whatever you do ....
-side thought - you spoke of the catheter being squeezed ... too bad they could not fit on a grommet ring around the catheter where it is constricted to help maintain the shape and flow....
sincere 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!
Next PSA - October 8, 2010 - TBA -
............


keysailfisher
Regular Member


Date Joined Dec 2009
Total Posts : 346
   Posted 5/13/2010 8:07 PM (GMT -6)   
David sorry to here about your latest battle with the cath. You know you are always in my prayers. Jeff (corvetteman3) told us that alot of us don't know what your doing that you don't share here as far as talking to different doctors. Hopefully you can get some natural healing that will let the doctors to fix the bladder neck. (Corvetteman3 said worried guy is a mad scientist :)  ) Just kidding Worried Guy. Hope things get better for you David.
 
 
Neal
age 45
psa 3.09
Biopsy results 12/9
Left side base 3+3=6 21% 2/2 cores positive
Left side mid  3+3=6 100% 2/2 cores positive
Left side apex 3+4=7 88% 2/2 cores positive
Right side - 0/6
CT & Bone scan negative
Davinci Feb. 5th 2010/ cath removal 2/16
 
Gleason-3+4=7
Extent of tumor-Bilateral
Extraprostatic Extension-Absent
Seminal Vesicles-Negative for tumor
Surgical Margins-Rt apical margin focally positive
lymphovascular invasion-Suspicious in areas of capsular involvement
Regional lymph nodes-One node negative
Stage-T2c NO Mx
Incontinence-yes/ Down to 1 pad at 6 weeks out
11 weeks pad free
PSA 3/29/10 <0.01


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 5/13/2010 8:32 PM (GMT -6)   
Thanks, Bros, hadn't seen much of you here lately, figured you must be real busy with your art work. Appreciate your kindness, as I go still another round in this twisted maze I am stuck in. Hopefully, one day I will find the exit. I was trying to imagine a little while ago, what it would be like to go 24 hours without a single bout of severe pain. Been so long, that I can't really remember the feeling. Probably have to go back to late June of last year. Not talking about the normal aches and pains of being a 57 year old guy, of course. Hope you and Steve are doing fine.

Not real anxious to see the dr in the morn, glad its an early one to get it over with. Been on edge with pain steady most of the day, which makes me uptight knowing what will happen tommorow. Had some consulting work lined up tommorow afternoon, but will probably have to postpone that after the dr visit. Then suppose to do a HD film of a music group tommorow evening, will just have to wait and see what shape I am in at that point.

Thank you Neal, appreciate your support.
______________________________________

1030 PM Report - pressure building up in bladder, afraid might be getting ready to have another night time blockage. Got all the irragation stuff ready in the bathroom in case its needed later. The good flow most of the day has slowed down to a crawl since early this evening, so I am real edgy about another blockage. Just need a good night sleep without a blockage this time, so I can face a fix with the dr in the morning. Hope that's not asking too much
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, next one:  July
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- 27 days, Cath #15 - 26 days, Cath #16 - 4/23 put in


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 5/13/2010 9:31 PM (GMT -6)   
Purg,

I do wonder if a homeopathic remedy called "silicea" would help. I've seen it work in preventing radiation burns many times. It's one of those can't hurt might helps. Hope you get to feeling better real soon.

Swim
 Hilarem datorum diligit Deus


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 5/13/2010 9:31 PM (GMT -6)   
Purg,

I do wonder if a homeopathic remedy called "silicea" would help. I've seen it work in preventing radiation burns many times. It's one of those can't hurt might helps. Hope you get to feeling better real soon.

Swim
 Hilarem datorum diligit Deus

New Topic Post Reply Printable Version
26 posts in this thread.
Viewing Page :
 1  2 
Forum Information
Currently it is Sunday, June 24, 2018 9:13 AM (GMT -6)
There are a total of 2,974,702 posts in 326,202 threads.
View Active Threads


Who's Online
This forum has 161300 registered members. Please welcome our newest member, Snooks11.
399 Guest(s), 4 Registered Member(s) are currently online.  Details
JNF, getting by, Alxander, PA_grandma