ED -- Maybe time is the best medicine?

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sterd82
Regular Member


Date Joined Sep 2006
Total Posts : 187
   Posted 5/26/2008 9:13 AM (GMT -6)   
Just wanted to pass on this personal experience....
 
I had a non-nervesparing prostectomy 2 years ago....followed by 2 months of radiation 18 months ago.  I've pretty much resigned myself to long term ED....  I've got the pump, which kind of works but I don't like... I've tired cialis which has, in the past, not done anything for me... I've done injections which work OK....
 
BUT... in the past few weeks I've noticed some better response using nothing... Just lately I was able to achieve an "erection adequate for intercouse" .... certainly not what I was pre-cancer, but an amazing progression given my history.
 
A lot of the posters on this board struggle with ED ---- I'd add to the already great advice shared on this forum--- GIVE IT TIME --- and don't give up!
Sterd82
Age 47 - pre-surgery PSA 39
Open Radical Prostatectomy 6/9/2006
Pathological Stage T3a, Positive Surgical Margin
Gleason 3+4
PSA rose to .24 in November of 2006
6 month hormone therapy initiated December 1. 2006
36 sessions of IMRT Ended Feb 1, 2007
PSA as of May 25, 2007 undetectable
PSA as of November 29, 2007 undetectable
PSA as of May 14, 2008 undetectable
Next PSA November of 2008


VaFan
Regular Member


Date Joined Mar 2008
Total Posts : 203
   Posted 5/26/2008 10:18 AM (GMT -6)   
Very encouraging news!
Age 51 Kent Cindy 49
January 08 PSA 5.2 round of antibiotics went to 4.3
February 08 another round of antibiotics went to 4.2
March 17,08 had biopsy, 2 days later told cancer was on
one entire side of prostate.
Gleason 3+3
Doctor thinks its best to get the whole prostate with Perineal  Prostatectomy.
Surgery scheduled for this Thursday April 10th. Only took 1 1/2 hours. In recovery 1 hour.  Both nerves were spared.
Home 4-11 - incision looks completly healed on the outside by 4-25
Cath out 4-22 dripping some
5-25 only uses a pad if going out "just in case". No dribbling to speak of.
Cialis 5 mg at night to start. Didn't agree with system. Viagra 50 mg daily. Was having erections but now not I guess due to the fact we can't afford for him to take the Viagra everyday.


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 5/26/2008 11:26 AM (GMT -6)   
Wow Sterd,
 
You are one for the books! Your case is not only rare, it's less than 1%, nearly unheard of in the medical books. Congratulations. How great is that? :-)
 
Swim
 


Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 5/26/2008 5:44 PM (GMT -6)   

Sterd -- I'm mightily impressed, especially in view of your double-whammy -- surgery and radiation. The statistics I have seen for impotence from non-nerve sparing surgery alone (yours and mine) range from 66% to 100%.

I have been told that Viagra and Cialis don't work for the non-nerve spared ....

[Deleted to comply with forum rules]



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 PSA: 0 

Post Edited (Piano) : 5/29/2008 12:10:06 AM (GMT-6)


sterd82
Regular Member


Date Joined Sep 2006
Total Posts : 187
   Posted 5/26/2008 10:28 PM (GMT -6)   
I kind of feel like a freak of nature......

Piano, I think use it or lose it makes a lot of sense.... I used the pump a lot after surgery and before radiation/ht. Once I got into that treatment, my "rehabilitation" activities pretty much stopped.... I've only tried injections twice (worked TOO well once, not well enopugh second time)....

Its only been just recently that I've noticed some natural firmness --- . In the past couple of weeks I've notived steady improvement to where I could actually "perform"...I'd say somewhere in the 60-70% range of where I was pre-surgery....which is miraculous....

When my libido kicked back on (about 9 moths after my last Zolodex shot), I started on a program of regular stimulation --- both with spouse and without (what a thing to write about one's self!)....

I'm going to talk to my uro about getting back on cialis to see if we can improve from here.....I'll be sure to post any new findings .....
Sterd82
Age 47 - pre-surgery PSA 39
Open Radical Prostatectomy 6/9/2006
Pathological Stage T3a, Positive Surgical Margin
Gleason 3+4
PSA rose to .24 in November of 2006
6 month hormone therapy initiated December 1. 2006
36 sessions of IMRT Ended Feb 1, 2007
PSA as of May 25, 2007 undetectable
PSA as of November 29, 2007 undetectable
PSA as of May 14, 2008 undetectable
Next PSA November of 2008


Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 5/26/2008 11:03 PM (GMT -6)   
Please do post any new findings.

I'm sure all of us here with ED can take a lot of heart from your experience. Nerves clearly can grow back, and it's amazing how they do it. I read somewhere that the growth is about 1/8 inch per month.

So it would figure that nothing much will happen for some time while that process is occurring. Then a relative rush as the first nerves break through and make contact. Let's hope you have some more making contact soon -- and keep giving them all the encouragement you can :-)
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 PSA: 0
No erections (of course!)
Experimenting with VED and Bimix
 


Lungman
Regular Member


Date Joined Jan 2008
Total Posts : 276
   Posted 5/27/2008 5:42 AM (GMT -6)   
Thanks for a very encouraging post, and gongratulations !!!

Randy
46 you when diagnosed, now 47
Pre-Op PSA 9.9
1 of 12 cores positive, Gleason 3+3
DaVinci on 9/5/2007
Post-Op Gleason 3+6, Negative Nodes and Margins
Less than 1% of prostate involved with CA
3 Month PSA 0.01, 6 Month PSA 0.01
Incontinence resolved 9/15/2007, one day after cath removal
ED showing significant improvement.
Cialis 5 mg every night.
Success with BiMix


jerryg
Regular Member


Date Joined Feb 2007
Total Posts : 30
   Posted 5/28/2008 9:22 AM (GMT -6)   

I am glad someone started this thread, so I will add my experience to encourage others to not give up hope.

After my RRP surgery on Jan. 5, 2007, I have pretty much gone thru everything everyone else has written about.  My surgeon told me at least 3 different times I could never have normal erections again after removing both nerve bundles.  I used a VED for about a month with nothing to show for it, was ready to give up on it  and then all of a sudden, I got an erection that was usuable.  I then tried injections, PGE1 and Trimix 4 times and they gave me such pain I decided it was not worth it over the VED.  From reading on this forum about the use of bimix to relieve the painful injections, I tried it and low and behold it worked.  Thank you all for discussing this openly on this forum.  I asked my urologist for Bimix, he normally would not have done this for his patients.  He is a surgeon and not an expert on injection drugs.  On May 12th, I was kind of messing around in the shower with my wife and low and behold, I got an erection that was useable without the aid of a VED or bimix.  May 12th will be on our calendar as a very special day to celebrate the rebirth of "Willie".  I have tried Viagra and Levetra several times since then and it is better than I could ever have hoped for.  Alldaychemist sent me some samples after I inquired about Cialis (they cannot sell this in the USA).  To sum all this up, don't give up hope.  It took me 17 months.  My wife has been most supportive,  helpful and active in my many months of doing "penile exercises".  She has keep up my spirits over this time and this has brought us closer than ever.  I, for one, hope words like M***bate can be spoken openly and conversations can be truthful and honest without offending anyone on this forum.  IF IT WERE NOT FOR WHAT I CAN READ ON THIS FORUM, I WOULD HAVE PROBABLY GIVEN UP AND STILL BE ONLY USING A VED.



Prostate Cancer diagnosed Dec. 18, 2006
Biopsy 12/13/2006 Gleason score = 3+5=8
RRP Jan. 5, 2007
Pathology - negative margins from succesful surgery
10 mg Cilias M_W_F for 8 weeks
Almost no leakage after 5 weeks
Used Vacurect pump for 4 weeks before useable erection.
Presently using injections - PGE and Trimix caused really bad pain.
Now using Bimix - Bingo, good times are back.
1-yr PSA .02


Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 5/29/2008 4:07 AM (GMT -6)   
Jerry: as another non-nerve-spared, I am delighted to hear of your recovery. Well done and thank you for sharing.

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 PSA: 0 


Valentine08
Regular Member


Date Joined Mar 2008
Total Posts : 30
   Posted 5/30/2008 8:10 PM (GMT -6)   
Thank you Sterd82 and Jerry for confirming what the Chief Resident told us on his rounds the day after surgery: Don't get discouraged, it is often simply a matter of time and could be 18 months. I was wondering if he was just being vaguely optimistic for the patient, or if it was really true. Thanks for being willing to share your case with us. I can't say it often enough; the personal, intimate experiences offered by men here with the courage and caring to discuss sensitve matters makes this site the best resource. Val's spouse
Age 59
PSA ; PSA 9/07=3.4; '06=3.2 DRE Negative; '05=2.4; '04=1.7
Biopsy 11/07 =  Stage T1c, 12 cores, 2 positive
Gleason score= 3+3=6
DaVinci Robotic RP surgery: 2/14/08
Path report: Gleason= 3+4=7; Stage T2c


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1464
   Posted 5/31/2008 9:47 AM (GMT -6)   
Hey Sterd,

Time truly heals. The problem is it takes lots of patience. After a lifetime (almost) of being ready to go on a moments notice, spending months trying to get it back can be depressing. Just don't ever give up. Even old guys like me can still get it on after PCa.

"Hang" in there buddy...

Jim
Age 73. Diagnosed 11/03/06. PSA 7.05. Stage T2C Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Catheter out on 12/13/06.  Dry on 12/14/06.
Pathological stage: T2C N0 MX. Gleason 3+4.
50 mg Viagra + 1000 mg L-Arginine + .03 cc Trimix = Excellent Results
PSAs from  1/3/07 - 1/17/08 0.00. 
Next PSA test on 7/17/08
"Patience is essential, attitude is everything."


Doting Daughter
Veteran Member


Date Joined Aug 2007
Total Posts : 1064
   Posted 5/31/2008 10:31 AM (GMT -6)   
What great news! I haven't seen very many people have posts like this after both treatments. My father will be pleased to hear your story. Thanks for sharing! It has been a big deal for my dad over these past months.
Father's Age 62 (now 63)
Original Gleason 3+4=7, Post-Op Gleason- 4+3=7,
DaVinci Surgery Aug 31, 2007
Focally Positive Right Margin, One positive node. T3a N1 M0.
Bone Scan/CT Negative (Sept. 10, 2007)
Oct. 17 PSA 0.07
Nov. 13 PSA 0.05
Casodex adm. Nov 07, Lupron beg. Dec 03, 2007 2 yrs
Radiation March 03-April 22, 2008- 8 weeks 5x a week
Praying for a cured dad. First PSA 3 months!


Co-Moderator Prostate Cancer Forum


jerryg
Regular Member


Date Joined Feb 2007
Total Posts : 30
   Posted 6/8/2008 12:18 PM (GMT -6)   
 video recovering sexual function after treatment
   
http://laprp.com/PCMevent/PCM_Nov152007_Burnett.wmv
 
29 minute presentation by a urologist at John Hopkins Univ. that should be of interest to anyone interested in prostate cancer so that accurate information is given. This was posted on another PC web site P2P Prostatepointers.org
 

Prostate Cancer diagnosed Dec. 18, 2006
Biopsy 12/13/2006 Gleason score = 3+5=8
RRP Jan. 5, 2007
Pathology - negative margins from succesful surgery
10 mg Cilias M_W_F for 8 weeks
Almost no leakage after 5 weeks
Used Vacurect pump for 4 weeks before useable erection.
Presently using injections - PGE and Trimix caused really bad pain.
Now using Bimix - Bingo, good times are back.
1-yr PSA .02


rob2
Veteran Member


Date Joined Apr 2008
Total Posts : 1131
   Posted 6/8/2008 1:05 PM (GMT -6)   
i am at the 4 week mark and may have had a slight erection friday night but it didn't last long at all. the doctor hasn't prescribed any ed meds for me yet. i am wanting to work the incontinence issue first. it is going a lot better these days. i will be talking to the doctor next week. from these blogs, it appears insurance isn't covering much of these drug costs.
 
Age 48
occupation accountant
PSA increased from 2.6 to 3.5 in one year
biopsy march 2008 - cancer present gleason 7
decision - surgery (robotic)
surgery may 9, 2008 - houston, tx
pathology report -gleason 8
margins clear
waiting on first psa post surgery
continence ok during day - 1 pad
night time different story
kegel's twice a day 20 reps


IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 6/8/2008 6:42 PM (GMT -6)   
This topic is an important one.... especially the notion that we need to give "it" time.
 
My urologist/surgeon told me that she has many patients where good progress on ED doesn't come until 12-18 months after RP.  She told me to be patient and I have been.
 
I really believe that those who regain normal response soon after surgery are the exception rather than the rule.
 
And, rob2, my insurance does cover a big portion of the ED drug price tag.  My surgeon sent a nice letter explaining why I needed the drugs for rehab after LRP and that really helped to deem the drugs medically necessary.
 
Best regards,
 
 

Barry ~ (a.k.a. "Idaho") - Prostate Cancer Forum Moderator

 

Da Vinci Surgery July 31, 2007… 54 on surgery day
PSA 4.3  Gleason 3+3=6  T2a  Confined to Prostate

1st PSA  09/11/2007  <0.04 (undetectable)

2nd PSA 12/10/2007  <0.04

3rd PSA  03/17/2008  <0.04

My web site: http://pca-info.blogspot.com

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