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GBINAB
Regular Member


Date Joined Apr 2008
Total Posts : 206
   Posted 1/3/2009 1:48 PM (GMT -6)   
Hey Guys ,
I hope this finds everyone in good health for the new year.
 
Snce i find latly many threads about ED issues , which is every man concern , and especially everyone on this forum that had a prostate removed (either  open or DaVinci) i was wondering about the time line progress (especially the long term ones) since i am sure its sits in the back of everyone mind (or in FRONT LOL).
 
the ole reason for that statistic is that many are new to the forum and keeps wondering aboiut return t potency , and when ...and this maybe put many of us at ease a bit...
 
My progress:
open Sugery June 07,nerves spared on both sides, No response for 6 months , then very slow progress noticing some stifness, at 10 months having 75% erections w/o meds and 85% w/meds, at 12 months suable erections  85% w/o meds and 90 to 95% w/meds and ability to have intercourse.
i am at present 18 months out and the progress is SLOWWWW  moving  however i hope at 24 months to be back to 100%
 
thanks for your responses and participation, Happy and better New Year to everyone...
 
GB smilewinkgrin smilewinkgrin
April 2007 PSA 8.4 for last 6 months biopsy shows PC 3+3=6
June 13 2007 Nerve Sparing open RP / Dr. Christopher Johnson at St. Francis Hospital NY.
4 days later home for Fathers Day, and Catheter.
Removal of catheter 10 days later , incontinence not an issue, no pads used from the get go.
1 month PSA next to not detected

ED is a longer battle:
1 month out start using occasionally Cialis and 50MG Viagra to promote blood flow with no response.
3 months and 6 months PSA not detected
ED 6 months mark starting with VED therapy and being more aggressive with meds , in addition taking Folgard supplement daily.
April 2008 : 10 month out and start seeing some serious improvements with ED while using Meds and VED , can achieve erections, Mid nights erections almost on a regular basis , and uncontrolled 90 % erections spontaneously.
1 year visit on June 13 2008 woohoooo!!!

UPDATE 1 YAER FOLLOW UP
ED: With Viagra Usable erection for intercourse , AND AT 80% without any medications !!
Fully continent since removal of catheter.
PSA one year : 0.0 as of 6/13/ 2008 BIG Wooohoooooooooo!!!!
 
UPDATE AS OF Dec 2008 (18 months out)
 
PSA  stil Undetectble!!!!
No continance issues!!!!
ED Mostly  getting better  with oral meds and the right woman  = good  sex
80% without any help   and 95% with oral Meds ... 100% with  VED
hope to keep progressing and by 24 months get back to 100% potency  WooooHoo!!!
 


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 1/3/2009 2:48 PM (GMT -6)   
okay-dokie, open RPp Sept. 2007, 16 months. I was still functional before surgery, but will admit I was beginning to have a slight 'fully erect' problem for the last 6 months or so before treatment. Both nerves spared, but had a humongous 110 gm. gland removed, which may have stretched the nerves, both before and during the surgery. I began the pump twice daily and pills 3 times weekly at 6 weeks, then the injections once or twice a week at 3 months. 16 months later, with daily aggressive rehab and I am still fully impotent. Nope, nothing, nada.....I do get a small amount larger or fluffier just approaching orgasm, but nothing useable. I still feel the sense of sexual excitement, the kind that would trigger an erection, but there's big gap that hasn't been bridged yet, as far as getting erect from those feelings. No nocturnal erections, even when having nocturnal sexually charged dreams. It's like the feelings are there but there's a gap in the wiring, not allowing the spark to cross.... cry shakehead I ain't giving up yet, but must admit this is getting old quickly now. But for Trimix............ :-)
James C. Age 61
Co-Moderator- Prostate Cancer Forum
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 Nerve sparing open Retropubic Radical Prostatectomy
9/26/07 Post-op Path Report: GS 3+3=6 Staging pT2c, 110gms, margins clear
16 mts: ED- 50 mg Viagra 3X week, pump daily,Trimix .35ml 2X week continues
Post Surgery PSA's: 3 mts-.04, 6 mts.-.04, 9 mts.-.04, 1 Year-.02.

Post Edited (James C.) : 1/3/2009 12:52:19 PM (GMT-7)


apacker1950
Regular Member


Date Joined Nov 2008
Total Posts : 122
   Posted 1/3/2009 11:13 PM (GMT -6)   
open RP in November, 2005. My story is very similar to James C. I have pretty much resigned myself to perminant ED at this point although I will continue to use a VED for therapy and I have trimix, which gives me very good results. Natural would be better, but trimix is good.
Age 54 at Dx.   Currently 58
Jly 05- PSA 8.1
Sept 05- PSA 10.7
Sept 05- Biopsy revealed 9 of 12 cancerous, Gleason 3+3=6, T2 stage
Bone scan and cat scan showed hot spot on hip bone.
Oct 05- Surgery for bone biopsy.  Pathology showed benign growth, no cancer in bones. Who ever thought I would be happy to only have PCa?
Nov 05- PSA 15.4
Nov 18, 05- Nerve sparing open RP at Huntsman Cancer Center, SLC, UT by Dr. Robert Stevenson. 
Home after 3 days.Cath out at 2 wks.
Incontinence gradually improved for about 3 months to 100% continence.
ED- Tried the big 3 pills with no results
Feb 06- PSA undetectable, Started VED which worked but caused discomfort with constriction rings.
May 06- PSA undetectable, Dr. gave me an Rx for Trimx injections. They work great.  Still use VED on off days without constriction for therapy.
Aug 06- PSA undetectable 
Nov 06, May 07, Nov 07, May 08, Nov 08 - PSA undetectable
ED appears to be perminant but doing great with Trimix.


GBINAB
Regular Member


Date Joined Apr 2008
Total Posts : 206
   Posted 1/4/2009 11:05 AM (GMT -6)   

Thanks for posting  James C  it  does take  time  (sometimes  up to 24 months ) ...also it seems to me that  Dvinci patience seems to recover  faster  with ED than open RP for some reason , my Uro had told me before surgery that side effects with both methodes are the same , and it is up to me to chose  robotic or open ...since he was mostly experienced with open  and his partner in that practice  was the robotic man , i had chosen the open route...

loking back if i had known this forum and know  some more about both procedures  might have gone the Robotic way .

thanks again  an keep it up ... it  does get frustrating  sometimes , i myself was not too consistant  with my rehab therapy and using only the pump in cmbinaton with the pil maybe 2x  a week

 

good Luck and keep us posted

GB

James C. said...
okay-dokie, open RPp Sept. 2007, 16 months. I was still functional before surgery, but will admit I was beginning to have a slight 'fully erect' problem for the last 6 months or so before treatment. Both nerves spared, but had a humongous 110 gm. gland removed, which may have stretched the nerves, both before and during the surgery. I began the pump twice daily and pills 3 times weekly at 6 weeks, then the injections once or twice a week at 3 months. 16 months later, with daily aggressive rehab and I am still fully impotent. Nope, nothing, nada.....I do get a small amount larger or fluffier just approaching orgasm, but nothing useable. I still feel the sense of sexual excitement, the kind that would trigger an erection, but there's big gap that hasn't been bridged yet, as far as getting erect from those feelings. No nocturnal erections, even when having nocturnal sexually charged dreams. It's like the feelings are there but there's a gap in the wiring, not allowing the spark to cross.... cry shakehead I ain't giving up yet, but must admit this is getting old quickly now. But for Trimix............ :-)


April 2007 PSA 8.4 for last 6 months biopsy shows PC 3+3=6
June 13 2007 Nerve Sparing open RP / Dr. Christopher Johnson at St. Francis Hospital NY.
4 days later home for Fathers Day, and Catheter.
Removal of catheter 10 days later , incontinence not an issue, no pads used from the get go.
1 month PSA next to not detected

ED is a longer battle:
1 month out start using occasionally Cialis and 50MG Viagra to promote blood flow with no response.
3 months and 6 months PSA not detected
ED 6 months mark starting with VED therapy and being more aggressive with meds , in addition taking Folgard supplement daily.
April 2008 : 10 month out and start seeing some serious improvements with ED while using Meds and VED , can achieve erections, Mid nights erections almost on a regular basis , and uncontrolled 90 % erections spontaneously.
1 year visit on June 13 2008 woohoooo!!!

UPDATE 1 YAER FOLLOW UP
ED: With Viagra Usable erection for intercourse , AND AT 80% without any medications !!
Fully continent since removal of catheter.
PSA one year : 0.0 as of 6/13/ 2008 BIG Wooohoooooooooo!!!!
 
UPDATE AS OF Dec 2008 (18 months out)
 
PSA  stil Undetectble!!!!
No continance issues!!!!
ED Mostly  getting better  with oral meds and the right woman  = good  sex
80% without any help   and 95% with oral Meds ... 100% with  VED
hope to keep progressing and by 24 months get back to 100% potency  WooooHoo!!!
 


Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 1/4/2009 4:10 PM (GMT -6)   
There are degrees of nerve sparing. All the way from no nerve sparing at all (= no erections at all for 2 years, if ever) to nerves completely spared (=erections while the catheter is still in).
 
I suspect that in many cases of "nerve sparing" there has in fact been a lot of damage to the nerves. The doctor may not actually know how much, and in other cases even if he knows, may not let on about the extent of the damage.
 
However nerves can grow back, I read somewhere about 1/8" per month, so there is still hope for everybody.
Age 63. Other than cancer, in good health; BMI 20
Pre-op: No symptoms; PSA 5.7; Gleason 4+5=9; cancer in 4 of 12 cores
7 March 2008, RRP, non nerve sparing
Two nights in hospital; catheter and staples out after 7 days
Continent, no pads needed from the get-go
Post Op: Stage pT2 M- N-; clear margins and lymph nodes; Gleason 4+4=8; prostate weight: 37gm
6-week and 7-month PSAs: 0
Bimix injections working well 


GBINAB
Regular Member


Date Joined Apr 2008
Total Posts : 206
   Posted 1/4/2009 5:43 PM (GMT -6)   
Piano said...
There are degrees of nerve sparing. All the way from no nerve sparing at all (= no erections at all for 2 years, if ever) to nerves completely spared (=erections while the catheter is still in).
 
I suspect that in many cases of "nerve sparing" there has in fact been a lot of damage to the nerves. The doctor may not actually know how much, and in other cases even if he knows, may not let on about the extent of the damage.
 
However nerves can grow back, I read somewhere about 1/8" per month, so there is still hope for everybody.

Good post Piano ... i recall your post   and research   since the time you join us here  aftr your procedure   and you are right i think the B-100  promots nerve growth   (i take it )  and i was told  by  my  surgeon  my nerves were spared  Bi lateral and he was  very careful peeling the prostate  off them ... but again it is an open procedure which is magnification  is only 3x ompar to 16x or more with the davinci , and those nerves are very delicate and being touched , pushed and pulled by the surgeon hands (as he feels the prostate and serrounding areas with his hand  for more cancer ) it takes    a longggggggg  time to heal  regardless how careful one is.
at my last visit with my Uro/Surgeon he told me that with my progress being at 90%  he would take it any day and run ...and he called it a successeful outcome.
so yes there is hope to everyone... how  is your progress  by the way ?
 
GB
April 2007 PSA 8.4 for last 6 months biopsy shows PC 3+3=6
June 13 2007 Nerve Sparing open RP / Dr. Christopher Johnson at St. Francis Hospital NY.
4 days later home for Fathers Day, and Catheter.
Removal of catheter 10 days later , incontinence not an issue, no pads used from the get go.
1 month PSA next to not detected

ED is a longer battle:
1 month out start using occasionally Cialis and 50MG Viagra to promote blood flow with no response.
3 months and 6 months PSA not detected
ED 6 months mark starting with VED therapy and being more aggressive with meds , in addition taking Folgard supplement daily.
April 2008 : 10 month out and start seeing some serious improvements with ED while using Meds and VED , can achieve erections, Mid nights erections almost on a regular basis , and uncontrolled 90 % erections spontaneously.
1 year visit on June 13 2008 woohoooo!!!

UPDATE 1 YAER FOLLOW UP
ED: With Viagra Usable erection for intercourse , AND AT 80% without any medications !!
Fully continent since removal of catheter.
PSA one year : 0.0 as of 6/13/ 2008 BIG Wooohoooooooooo!!!!
 
UPDATE AS OF Dec 2008 (18 months out)
 
PSA  stil Undetectble!!!!
No continance issues!!!!
ED Mostly  getting better  with oral meds and the right woman  = good  sex
80% without any help   and 95% with oral Meds ... 100% with  VED
hope to keep progressing and by 24 months get back to 100% potency  WooooHoo!!!
 


Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 1/4/2009 8:38 PM (GMT -6)   
GBINAB said...
so yes there is hope to everyone... how  is your progress  by the way ?
Ten months out from non-nerve-sparing, I have nothing natural that qualifies even as a partial erection. However, injections and the pump do work for me.
I also would take 90% -- right now I'd accept 10% :-)

Age 63. Other than cancer, in good health; BMI 20
Pre-op: No symptoms; PSA 5.7; Gleason 4+5=9; cancer in 4 of 12 cores
7 March 2008, RRP, non nerve sparing
Two nights in hospital; catheter and staples out after 7 days
Continent, no pads needed from the get-go
Post Op: Stage pT2 M- N-; clear margins and lymph nodes; Gleason 4+4=8; prostate weight: 37gm
6-week and 7-month PSAs: 0
Bimix injections working well 

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