Lunch with Knotreel yesterday

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Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4106
   Posted 12/31/2010 6:22 AM (GMT -6)   
I am such a very lucky guy.  Many of you know that I have had personal contact with some of the guys here on HW.  Yesterday I was fortunate enough to have lunch with PCa Brother Knotreel  We have talked on the phone several times and yesterday was the day that we decided would work for us to meet.  He lives about 45 min from me and we had lunch together and after lunch went to his house for expresso and some wonderful potato bread that his wife baked for us. 
 
Ron, I want you know know it was great joy to get to put your face with the name.  Next meeting will be in BR.
 
Thanks for you hospitality.
 
Cajun Jeff
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1% cancer core
10/08 Nerve-Sparing open radicalSurgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clea
r3 month: PSA <0.1
19th month: PSA <0.1
2 year PSA <0.1
Only issue at this time is ED but getting better

knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 654
   Posted 12/31/2010 9:18 AM (GMT -6)   
Yeah, me too. I live mostly as some sort of hermit and did me some good too. I felt like a man on death row getting a visit as I am in the final two weeks of my big implant(s) date countdown. I can't help but have this movie reel play in my mind about my new scrotum with, lets see, two pumps and 5, I figure, tubes in there. So I was able to move breifly away from the movie reel: Now Playing in my home entertainment threater, A Tube Too Many. We had another laugh about my AUS doctor joke, he said they will tatoo me with lables for each side "Come" and "Go". Hell, the guy might actually do that, I'll have to wait and see.
Jeff and Greg made it up my driveway without 4WD! And found my location which is off the GPS map.
Thank you guys for the visit.
Ron
06-08 1st biopsy neg psa 4
10-09 psa 5.5 2nd biopsy 1/12 pos. 10%, G(4+3) age 65
12-15-09 RRP Tulane NOLA Dr Lee
Path, 1%, clr marg, no EPE, no SVI, nodes cl, G(4+3)
100% incontinent after 3 mo. PT
ED, pre-op severe, post op total
10/10 Dr Boone, Baylor recomended AUS
AUS and IPP scheduled 1/11/11
post op psa's 0.04,<0.1,<0.1,0.01@12 mo.

60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2222
   Posted 12/31/2010 9:39 AM (GMT -6)   
Glad the two of you had the opportunity to meet. Jeff, you are a good man to take the time to meet with others. Hope that I have the honor one day to meet you. Happy New Year to all.
Michael

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4106
   Posted 12/31/2010 12:43 PM (GMT -6)   
Well Michael I was an honor to meet you as well. Start working you callander see if you can clear April 14-17. The GFMPH is going to be held at my house. Want as many of the Healing Well guys to come as possible.

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

tallguy
Regular Member


Date Joined Oct 2009
Total Posts : 417
   Posted 12/31/2010 5:54 PM (GMT -6)   
If some of you guys ever get to Michigan I would welcome a visit......lots of my home made wine in the cellar. I am about half way between Lansing and Detroit.
66 year old male
PSA jumped 3 to 8 Jan 2008
pt2b NO Mx with a Gleason score 3+3=6.
DaVinci RP, 7/23/08. Tumor type: Acinar
size 5.5 cm x 5.7 cm weight: 77 gm.
Incontinence & ED. Dry nights , no control during day.
FUDS and cystourethroscopy testing 10/09.
24 hr pad wt. 219gm. AUA sympton index 13/35=moderate
Virtue sling surgery 2/3/10 NYU med center
Appeared to help but gradually returned to pre surgery condition.
Back to 3-4 pads/day.
Latest PSA 4/1/10 negative.
AMS 800 artificial urinary sphincter implanted 7/8/10 at U of MI.
AMS 800 activated 8/25/10 Dry for first time in 2 years.
Links to my journey posts:
http://www.healingwell.com/community/default.aspx?f=35&m=1847812
http://www.healingwell.com/community/default.aspx?f=35&m=1710681
http://www.healingwell.com/community/default.aspx?f=35&m=1948599

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 12/31/2010 6:38 PM (GMT -6)   
Ron, Jeff, Tallguy

"Come" and "Go"! Perfect. The guy's got a sense of humor!
Personally I'd prefer to have them color coded. It's too difficult to read the fine print upside down in the dark. :)

I'm looking forward to seeing you guys in April. By then, my AdVance sling will be in its supporting role.
Only 11 more days to go. (But who's counting.)

Happy New Year. May it be a dry one!

Jeff

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 12/31/2010 7:42 PM (GMT -6)   
Jeff: you upped my count with your visit with Ron!. Glad you had the chance to meet another brother in the flesh. It just keeps getting gooder and gooder, as they say here in the south.

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

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4106
   Posted 12/31/2010 7:57 PM (GMT -6)   
David, Yes upped the count buy 1. Life is grand and I appreciate every second of it my friend.

So glad that you doing better.

Happy New Year

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

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 12/31/2010 8:08 PM (GMT -6)   
jeff, some of my old irish fighting spirit and humor is returning ,that must be a good sign, i hope
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4106
   Posted 12/31/2010 8:50 PM (GMT -6)   
I can tell David. The old boy is back.

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

walleye
New Member


Date Joined Dec 2010
Total Posts : 7
   Posted 1/4/2011 7:06 PM (GMT -6)   
Hey knotreel, glad to read your story. Sounds like you've been through the ringer . You will not regret getting an IPP. I,m going on my second one in two years now! The first one was too small because I was full of scar tissue from 4-5 years of injections. The uro replaced the first one with a larger one last Feb. The new one added 2 inches in length and 1inch in girth. I and my wife are very, very happy with my latest sorgery. If you ever get up here to frozen viking land look me up. We go catch some of them walleyes together. Recovery from my last surgery wasn't to bad. Inguinal hernia surgery was worse. Seeing as how with an implant everything is pumped-up or hydraulic, it is possible to stay hard all night. Because its under hydraulic lock. Well I gotta git! Good luck with the surgery, I know you will like the outcome. Latter Walleye
Mild ED- viagra 01
ED worse- inj. of alprostadil-05
Quit smoking 05-10-06
heart attack 11-10-06 3 stints placed
ED worse-scarring and pain from inj.
AMS 700 prosthesis placed 26-02-09
AMS 700 prosthesis found to be to small because of pre-op scarring
AMS 700 IPP removed and replaced with Coloplast Titan OTR 27-02-10
Non-smoker for 4 years now!
Coloplast IPP working very well

knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 654
   Posted 1/4/2011 9:36 PM (GMT -6)   
Walleye, thanks for the encouragement. I hope I am happy with the IPP but since it will most probably work sucessfully the big question mark is the artificial sphincter. I hate to even dream that both devices will be highly sucessful but who knows?
Ron
06-08 1st biopsy neg psa 4
10-09 psa 5.5 2nd biopsy 1/12 pos. 10%, G(4+3) age 65
12-15-09 RRP Tulane NOLA Dr Lee
Path, 1%, clr marg, no EPE, no SVI, nodes cl, G(4+3)
100% incontinent after 3 mo. PT
ED, pre-op severe, post op total
10/10 Dr Boone, Baylor recomended AUS
AUS and IPP scheduled 1/11/11
post op psa's 0.04,<0.1,<0.1,0.01@12 mo.
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