Use It or Lose It

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Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 310
   Posted 10/13/2009 3:17 PM (GMT -6)   
This is my first post.
 
I had da Vinci surgery in August 2008, negative margins, post-op pathology Gleason 4 + 3, three PSA tests so far after surgery all undetectable, little problem with incontinence.
 
My life situation is that I am married (21 years) but since the surgery my wife and I are no longer intimate.  No sympathy, please - life is what it is.  I'll ask about other people whose wife or girlfriend wouldn't or couldn't be supportive in another thread. 
 
But first ... I have no opportunity for sex.  I have been told by my doctor to "use it or lose it."  Other than that he has no advice.
 
I can get a pretty good erection and orgasm via ********** - not as good an erection as before surgery but not too bad, pretty stiff immediately before orgasm and then losing its stiffness fairly quickly afterwards.
 
I have elected not to use pumps, shots, etc. - no sense putting myself through all that - seems like getting dressed up with nowhere to go!
 
In the context of "use it or lose it," any thoughts on whether ********** will keep alive my chances for real sex later in life if I ever get the opportunity again?
 
I apologize if my frankness offended anyone.
 
Thanks very much.
 
Zen9  
 
 

Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 310
   Posted 10/13/2009 3:40 PM (GMT -6)   

My post makes little sense since they blocked out a key word!

It starts with "m."

Can I say that at least?

As I said, I'm new here.
 
Zen9

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 10/13/2009 3:46 PM (GMT -6)   
That is one of the computer generated blocks. I don't get it either. it's not like we'll go blind...

Tony
 Age 47 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Gleason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (May 11, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 10/13/2009 3:47 PM (GMT -6)   
Let me say that all couples have issues and that said, professional help, that is, a therapist can be a very positive thing as far as establishing better communications. Now any change like this has to involve both parties in an involvement to improve their relationship which will mean change. I can say that my wife and I have benefited from couples therapy, because it has helped us talk about sensitive things in a safer way.

On the other hand, if that is not an option, then it seems to me that m*st*rb*t**n is pretty much your option. The other things like pump, pills, and injections are just to get you firm enough to perform, but since you are already there, I don't see the point

You have my sympathy, a sexless marriage is a deep frustration and may offer nothing but painful choices.
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3+4=7
CAT scan, Bone scan 1/09 both negative.

Robotic surgery 03/03/09 Catheter Out 03/08/09
Pathology: Lymph nodes & Seminal vesicles negative
Margins positive, Capsular penetration extensive Gleason 4+3=7
6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
10 weeks: no pad at night -- slight leakage day/1 pad.
3 mo. PSA 0.0 - now light pads


Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 310
   Posted 10/13/2009 3:48 PM (GMT -6)   
OK, never mind then.
 
Sorry, I didn't mean to make trouble.
 
Zen9

Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 10/13/2009 3:52 PM (GMT -6)   
Hi Zen9 and welcome to the forum.

Yes, musterbation is an approved method of "use". :-) It's really good news that you don't need artificial aids too -- many of us here aren't that lucky.

I have found that surgery has put a dampener on my (married) sex life too. These days I am finding excuses not to have sex, and the result of that is that our frequency has dropped off. From about twice a week before surgery to once a week now, if that. Musterbation fills the gaps for me too.
Pre-op:
Age 63 at diagnosis, now 64.
No symptoms; PSA 5.7; Gleason 4+5=9; cancer in 4 of 12 cores.
Operation:
Non-nerve sparing RRP on 7 March 2008.
Two nights in hospital; catheter out after 7 days.
Post-op:
Continent; no pads needed from the get-go.
Pathology showed organ confined and negative margins. Gleason downgraded to 4+4=8.
PSAs:
6-week : <0.05
7-month: <0.05
13-month: 0.07 (start of a trend?)
19-month: ? (next week)
ED:
After a learning curve, Bimix injections (0.2ml) worked well. From 14 months, occasional nocturnal erections. Have "graduated" to just the pump.


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 10/13/2009 3:56 PM (GMT -6)   
Zen,
I hope you didn't misunderstand me. You did nothing wrong at all. I just don't like that our system automatically takes certain words out. You're cool...

And you're very welcome here...

Tony
 Age 47 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Gleason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (May 11, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


MrGimpy
Veteran Member


Date Joined Jul 2009
Total Posts : 504
   Posted 10/13/2009 4:19 PM (GMT -6)   
You may want to rethink the Injection route, it is so simple its silly and you WILL perform batter than before your surgery.

No need to go sexless, no need at all. The shot is not painful, in fact its more painful (emotionally) having to deal with being in bed and not being able to perform. The self esteem afterword is amazing, talk about King of the Jungle, oh what a feeling a 2 hr erection can give a guy.
Stats:
Age: 52
PSA (2008)=1.9
Biopsy on Jan 09, 2009
One (1) out of twelve (12) cores was positive, plus external nodule found
Gleason Score = 3+3
Surgery (Da Vinci, robotic prostatectomy): 4/7/09
Removed Catheter: 04/19/09
100% bladder control - Pad free 7/09
PSA 7/09 undetectable, under .0


Dave7
Regular Member


Date Joined Jul 2006
Total Posts : 202
   Posted 10/13/2009 5:51 PM (GMT -6)   
In the context of use it or lose it, I would think ************ is just as good as having a partner.
It gets the blood flowing and gives you that final engorgement that comes with an orgasm.
It's great therapy and I'm a big fan of it, even when I have a partner.
Dave


Age:54
PSA 5/22/06: 5.6
DaVinci surgery: 9/14/06
Gleason: 3+3
Organ confined, clean margins.
Both nerve bundles spared.

Post Edited (Dave7) : 10/13/2009 6:01:22 PM (GMT-6)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 10/13/2009 6:02 PM (GMT -6)   
Zen, no offense taken, no foul.

We are use to talking openly about personal things in a coded way. If you are able to function on your own via your hand, then
you must be in pretty good shape there. Even from a theraputic view, it is good exercise to keep things healthy down there.
Sorry you aren't in a close relationship sense of sex at this time, but perhaps that will improve over time.

Hope things continue to improve for 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
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/09 met 2 rad. oncl, 7/09 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 - out  38 days, 9/14/9 - met 3rd rad. oncl.agree to start radiation, mapping on 9/21/9, 9/24 - mtg with uro/surg, 9/29- pre-op, 10/1 - 3rd corr. surgery - suprapubic cath/hard dialation, 10/5 - began IMRT SRT - 39 sessions/72 gys.


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4106
   Posted 10/13/2009 8:19 PM (GMT -6)   
Zen: Welcome, nothing is off topic. Sometimes we have to work around some words to get our point across. As others have stated if self stimulation make the blood flow then that should keep willey happy. I am just 1 year out and sex has been been sucessful as of yet. My wife is supportive and we try but I think most of the problem for me is psychological. I know that things are getting better in the ED department.

Good luck my brother in PC.

Jeff T
Jeff T Age 57
9/08 PSA 5.4, referred to Urologist
9/08 Biopsy: GS 3/4=7
10/08 Nerve sparing open RRP- Path Report: GS 3+3=7 Stg. pT2c, margins clear
3 mts: PSA .05 undetectable
 10th month  PSA <0.01
ED- 5 mg Cialis daily, pump daily, going to try MUSE next


Mavica
Regular Member


Date Joined Jun 2008
Total Posts : 407
   Posted 10/13/2009 8:26 PM (GMT -6)   
My urologist - who leads one of the many prostate cancer research projects in the country - has told me, based on all of the factors involving my surgery, my cancer and my life history, that, when comparing my stats with the wide body of facts he's gathering from others, that I should see substantial improvement in the 1 to 2 year period following my da Vinci procedure and that unless I actively "use it" I could "lose it" and that ED shouldn't be a problem for me in coming years if I work at it.  So, however we "use it" those of us for which ED is likely to disappear the choice is ours.  There are no certainties in life, though, but thus far my urologist has been right "on the money" with every other topic involving my cancer and I'm proceeding as he suggested.  Those of you with a wife or partner or steady gal have the edge on me, because I don't have the benefit of that companionship and assistance.

Age:  60 (58 at diagnosis - June, 2008)

April '08 PSA 4.8 ("free PSA" 7.9), up from 3.5 year prior

June '08 had biopsy, 2 days later told results positive but in less than 1% of sample

Gleason's 3+3=6

Developed sepsis 2 days post-biopsy, seriously ill in hospital for 3 days

Dr. recommended robotic removal using da Vinci

Surgery 9/10/08

Northwestern Memorial Hospital, Chicago, IL

Dr. Robert Nadler, Urologist/Surgeon

Post-op Gleason's:  3+3, Tertiary 4

Margins:  Free

Bladder & Urethral:  Free

Seminal vesicles:  Not involved

Lymphatic/Vascular Invasion:  Not involved

Tumor:  T2c; Location:  Bilateral; Volume:  20%

Catheter:  Removed 12-days after surgery

Incontinent:  Yes (1/2 light pads per day)

Combination of Cialis and MUSE (alprostadil) three times weekly started 9-27-08

Returned to work 9-29-08 (18-19 days post-op)

PSA test result, post-op, 10/08: 0.0; 12/08: 0.0; 4/09: 0.0; 9/09: 0.0

 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 10/13/2009 8:53 PM (GMT -6)   
Mavica, I am truly sorry that you don't have the advantage of having that "other half" to help you deal with your PC and side effects. I can't imagine going through what I have and are going through with the total loving support of my wife first, and my children and immediate family second.

I admire your strength. Your string of post surgery "zeros" is impressive, I hope that stays that way for the rest of your life.

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
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/09 met 2 rad. oncl, 7/09 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 - out  38 days, 9/14/9 - met 3rd rad. oncl.agree to start radiation, mapping on 9/21/9, 9/24 - mtg with uro/surg, 9/29- pre-op, 10/1 - 3rd corr. surgery - suprapubic cath/hard dialation, 10/5 - began IMRT SRT - 39 sessions/72 gys.


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 10/13/2009 9:04 PM (GMT -6)   
Unless I'm missing the original post, it is not a matter acheiving an erection, but a matter of lack of interest by one or both parties.

Intimacy does not mean having sex, although usually it ends up that way after extended periods of intimacy. My wife and I have some of the most intimate moments of our married life post prostatectomy, without bringing Willie into the picture.

The question about using it or losing it is an entirely different question, and that we leave to the doctor. Like all muscles, exercise is good. Blood flow is good. I'm not sure anyone can predict whether not using our member for x amount of time will result in non functionality later. Probably as time progresses, it is more likely, but I don't think a stated fact.

I also know that a prostatectomy has a big psycholgical hit on us guys, which can stop us in our tracks sexually. Sometimes this in turn transfers to our spouse because of our pissy attitudes, or depression. As was recommended above, counseling is certainly a good thing for many couples who are going through this. Hopefully you guys can work this thing out.

Best of luck, and staty with is here on HW.
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks due to anatomical issues with location of ureters with respect to bladder neck.  Try 3 tubes where no tubes are supposed to be for 2 weeks !
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)


JoelS
New Member


Date Joined Aug 2008
Total Posts : 6
   Posted 10/14/2009 11:01 AM (GMT -6)   
Hi Zen

My Dr. said to ********** every day! It is good for you. Post a signature so we can get to know you better.

Good Luck
Joel
Age 55
Pca robotic  surgery 10/08
Hackensack NJ
Final Path:
Gleason 3+4
no mets
Dry at week 13
Waiting for wood
Viagra 100mg


Rob Smith
Regular Member


Date Joined Jan 2008
Total Posts : 23
   Posted 10/19/2009 5:15 PM (GMT -6)   
MrGimpy,

Can you give us insight on your injection routine?

Thanks

MrGimpy
Veteran Member


Date Joined Jul 2009
Total Posts : 504
   Posted 10/20/2009 8:16 AM (GMT -6)   
Hi Rob,

The routine is easy,

I wash my hands, then I take the vial out of the fridge, open an alcohol swab and clean the top of the vial. I inject a needle and fill to the dosage needed

Then I return the vial to the refrigerator and load the needle into the auto injector

From here I can either use the shot then and there or take it with me if I am going out

When I am ready to inject I (wash hands again if need be) then stimulate myself to get a partial erection, then use an alcohol swab and clean the side of the penis I am going to inject. The injection alternates each usage from the right or left side. Injection is as close to the base as possible, avoiding any veins at an approx 2pm or 10pm angle depending on which side I inject into

I place the auto injector at the spot I chose and press the injector button, the needle is inserted into the penis. I then push the plunger in to inject the medication. I then remove the injector and cover the injection site with the alcohol swab for approx 1 minute

During the time the swab is on the injection site I stimulate myself to further gain an erection then have my partner do it

From there it takes approx 5-8 minutes to achieve a full rock hard erection that lasts approx 1.5 to 2 hours.

Note: during that time it will remain in the same erect state, achieve orgasm, it stays erect, its not a one and done erection, no recovery time at all, you can go on and on until the medication wears off

I have tried the process with taking a 50mg Viagra 30 minutes prior and it helps a bit with the self stimulation part but it is not a big benefit to the overall success of the injection process.

Cost is way less than even Generic ED drugs

The Vial cost me $64 delivered and 30 needles were $7 copay at my local drug store. I have used the same vial for 2 months, it has maybe 6 or 9 more dosages left in it which is about 2 weeks worth

$71 for a near 100% successful 90 day solution vs Viagra, Cialis or Levitra (real or Generic) mostly failure rates makes this a winner in the self esteem department

For less than $1 a day I know I am only 10 minutes away from being ready,,,guaranteed

Note: I do not use this every day, 3-4 times a week has been my avg week so far
Stats:
Age: 52
PSA (2008)=1.9
Biopsy on Jan 09, 2009
One (1) out of twelve (12) cores was positive, plus external nodule found
Gleason Score = 3+3
Surgery (Da Vinci, robotic prostatectomy): 4/7/09
Removed Catheter: 04/19/09
100% bladder control - Pad free 7/09
PSA 7/09 undetectable, under .0


Kbars
Regular Member


Date Joined Jun 2009
Total Posts : 38
   Posted 10/20/2009 2:10 PM (GMT -6)   
Mr. Gimpy, Are you using bimix or trimix? You say it is $64 delivered, where is it being delivered from? Who do you order it from? How many injections are you getting out of a vial at say 3 times/week for 3 months approximatley 36 or more? You are correct that is around $1.75-$2.00 each time. I am very interested and have an upcoming visit with the urologist and will have him write me a prescription if you supply the answers to the above questions. Kbars  

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 10/20/2009 2:22 PM (GMT -6)   
Kbars, here's a link to some of the compounding pharmacies used by our members. The key word is it must be a Compounding Pharmacy, not a regular pharmacy. Most guys use the Franck's Pharmacy in Florida. The ship Bimix regular UPS and Trimix overnight in a chill pak. I found that my local Medicine Shoppe had opened a new one here, and it is state of the art Compounding. I got 10ml of Trimix for $96, and 5ml of Bimix for $27 there. Check local, call and ask.

As to dosage, that is initially determined by you and you doctor discussing it. Most doctors want to start a new patient on Caverject (Alprostadil), which is usually a painful and achy deal. It's a rare man who can take the full strength alprostadil. That's also why Trimix is usually more reliable and uses less than Bimix. Trimix contains alprostadil as the 3rd. drug in the mix. It costs a little more than Bimix, but gives usually better results. There is a small ache factor for Trimix to be considered, as it does contain Alprostadil, but much less so that the full strength. Hope this helps some in preparing for you doctors discussion. There's a bunch of threads here dealing with both injection drugs, just look around, or I can throw up some links to them.

www.healingwell.com/community/default.aspx?f=35&m=1017774
James C. Age 62
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP 110gms.- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
24 mts: PSA's: .04 each test since surgery, Bimix .3ml PRN or Trimix .15ml PRN


MrGimpy
Veteran Member


Date Joined Jul 2009
Total Posts : 504
   Posted 10/20/2009 3:29 PM (GMT -6)   
Hi Kbars,

I Use Trimix, a lab in Stamford,CT called Bryce labs sends it to me. It comes in a box with ice packs

I suspect there are many compounding labs in the US, your Dr will know which one is best for you based on your local They took care of all the scripts, etc. All I did was give the lab my CC number

My particular dosage is 20 units, yours may very well be different

My Dr had all my answers for me as well as a rubber penis that he used to show me exactly how to inject myself, naturally he tried it on me to see if it worked in-office and it did.
Stats:
Age: 52
PSA (2008)=1.9
Biopsy on Jan 09, 2009
One (1) out of twelve (12) cores was positive, plus external nodule found
Gleason Score = 3+3
Surgery (Da Vinci, robotic prostatectomy): 4/7/09
Removed Catheter: 04/19/09
100% bladder control - Pad free 7/09
PSA 7/09 undetectable, under .0


Rob Smith
Regular Member


Date Joined Jan 2008
Total Posts : 23
   Posted 10/23/2009 6:23 AM (GMT -6)   
MrGimby,

Thanks for the wonderful reply - very informative.

I have one more question, I noticed that you inject as close to the base as possible, is that what your doctor instucted you to do? With the injection being so low, doesn't the medicine escape? I've been instructed by my doctor to inject just below the halfway point (35-40% range).

If anyone else wants to chime-in as to where they inject at and why, it would be great.

Thanks

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 10/23/2009 8:47 AM (GMT -6)   
Since you ask Rob, I inject midway between the base and the head, at the 3 or 9 position, after doing the pump plumping and ring to hold the blood (and drug in). I have never had a successful episode of injecting closer to the base, even though I have tried it a few times. The farther back I get, the less I am able to get the drug into the cavity. Maybe it's my anatomy? smilewinkgrin
James C. Age 62
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP 110gms.- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
24 mts: PSA's: .04 each test since surgery, Bimix .3ml PRN or Trimix .15ml PRN


Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 10/23/2009 4:28 PM (GMT -6)   
I injected at about the half-way point. The one time I injected close to the base, I had a failure -- even with constriction.

It's a good idea to vary the injection sites to prevent scarring. If you get good results shifting forward and back then I suggest you do so -- the cavernosa run the whole shaft length.
Pre-op:
Age 63 at diagnosis, now 64.
No symptoms; PSA 5.7; Gleason 4+5=9; cancer in 4 of 12 cores.
Operation:
Non-nerve sparing RRP on 7 March 2008.
Two nights in hospital; catheter out after 7 days.
Post-op:
Continent; no pads needed from the get-go.
Pathology showed organ confined and negative margins. Gleason downgraded to 4+4=8.
PSAs:
6-week : <0.05
7-month: <0.05
13-month: 0.07 (start of a trend?)
19-month: 0.09 (maybe)
ED:
After a learning curve, Bimix injections (0.2ml) worked well. From 14 months, occasional nocturnal erections. Have "graduated" to just the pump.

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