ED devices--not sure I want to do this

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compiler
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Date Joined Nov 2009
Total Posts : 7269
   Posted 2/12/2010 5:59 PM (GMT -6)   
Ok-- We attended a 3 hour class at Ford Hospital today for their surgery patients. Much of the class discussed ED. It was very interesting. They talked about the drugs (I will be trying Viagra). They also talked about VED, MUSE, and the injections. They seem to be suggesting that we use the drug plus one of the other methodologies for therapeutic purposes.
 
Frankly, ED is still not a concern for us. It just isn't on the radar with my scary pathology report (this will be greatly assuaged if I get a good PSA resport -- first post op PSA on 3/1) and the incontinent issue (they say it could take 1-2 years to resolve although I suspect it will be a few months).
 
I guess I'm asking you folks: did you all use a VED or MUSE or injection in addition to the drug? I am reluctant to bother with that, although I am inquiring to see if my insurance will cover the VED, which is probably what I would try if I HAD to,
 
Incidentally, my wife and I are NOT conflicted on any of this, fortunately.
 
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

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. 

 Incontinence: joined that club-- definite leaks—1 pad/day. Night is dry but using 1 pad at night for security.

Next Event: First post-op PSA on 3/1/10


James C.
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Date Joined Aug 2007
Total Posts : 4463
   Posted 2/12/2010 6:51 PM (GMT -6)   
At the minimum, use the pump, even if you think you will never have use of that thing (penis) again. Things change, and the effort to keep blood infused into all that tissue, not including the penis is important for healing and recovery. I started the pills at low dose the day of catheter removal. I then started the pump at 7 weeks, and the injections at 3 months. I have continued this in some form ever since. I have had no ED recovery, but I have regained penis length and have kept the tissue intact and healthy, so if it does ever come back or if I should decide on an implant, I will have as much of a penis as I can available for those options. Consider this as a necessary rehab program, and get started. Also, m-sterbating is now doctor recommended for the same reason, to infuse tissue and to try to stimulate nerve repair and regrowth. Probably the first time in your life that you are encouraged to m-asterbate, so get to it. I read somewhere that the act orgasm helps in retraining and learning the bladder valve to work properly, so it's a good continence tool, also. Either alone or with the wife, there's lots of ways....devil

As I said, get a pump, even a cheap one, and start using it at about 6 to 8 weeks, 10 minutes a day, 2 times daily, if you don't do anything else. But I do suggest you go thru the whole cycle.
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
32 mts: PSA's: .04 each test since surgery, ED Continues-Bimix .3ml PRN or Trimix .15ml PRN


goodlife
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Date Joined May 2009
Total Posts : 2692
   Posted 2/12/2010 7:15 PM (GMT -6)   
Mel,

I think James is giving you some great advice.

Not sure what you meant by saying you and your wife are not conflicted. I assume you mean that she is ok with whatever you end up with as far as function, etc. I think most of our wives have also not put any pressure on us in this area. They love us for who we are, not for our sexual ability.

That being said, I 'm not sure if very many men with post RP Ed don't really miss the ability to have sex. Even if it's only once a week or once a month at our stages of life, it's one of those things that is really hard (no joke) to give up.

I know where you are right now. Still peeing your pants, worried about positive margins, first PSA etc. and with post surgical aches and pains, sex is not high on your list.

I would suggest that things will change. As the weeks and months wear on, you will get a desire to "climb into the saddle" again. It's like being told you can't do something. Doggone it, we still want to do it.

I would suggest you look at the rehab aspect as being important, and realizing that you may change your mind in a few months.

Good luck mel. We all have our fingers crossed with you.
Goodlife
 
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 .
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)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4119
   Posted 2/12/2010 8:00 PM (GMT -6)   
Mel: Get the VED. If insurance will not pay gut get one from an adult shop. They all do the same thing. As others have said just for therapy. I do have some friends that have been successful using a VED for recreation :). I use it to keep Mr Happy in shape.

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
1year psa <0.01
ED- 5 mg Cialis daily, pump daily, going to try MUSE next. Next step injections.
15 months out injections Caveject (success)


Casey59
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Date Joined Sep 2009
Total Posts : 3172
   Posted 2/13/2010 8:23 AM (GMT -6)   

zufus
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Date Joined Dec 2008
Total Posts : 3149
   Posted 2/13/2010 9:09 AM (GMT -6)   
Not intended for judgement, but based upon similar journeries from others posting, etc. Might make a good arguement for why not look more closely (for newbies) at possible various radiation(s) combos or other methods, as one can have much more likely continency and maybe even no ED issues and do just as well or some claims out there say maybe even better (have no way to verify of course...this PCa.. nothing is definitive enough or clear enough...maybe exactly what the establishment wishes for us to be confused and in the dark and signing up for whatever based upon the scare of you have PCa). Which PCa is very common in older men but "usually" found more in the indolent or not immenient death versions. It is treatable even chemically for perhaps a long period of time, which is another possible choice, considered non-curative, though.

It is quite unreal what post surgery patients are having to put themselves through, it would be a little more comforting to know one sacrificed all this for a known total cure, some are cured and others are in limbo land for years...not knowing for sure. This is the face of PCa, unfortunately. In your case Mel hope you are clear and psa's render zero land, which would be very comforting to see post surgery and long afterwards. Good fortune to you, I have witnessed your journey and questions, it sure confirms how wild PCa issues are. Atleast you got alot of answers from questions up front, which alot folks in the past didn't even have internet or forums to find information from, years ago.
Youth is wasted on the Young-(W.C. Fields)


Casey59
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Date Joined Sep 2009
Total Posts : 3172
   Posted 2/13/2010 10:29 AM (GMT -6)   
zufus, with all due respect, what a goofy thing to say to Mel. "Might make a good arguement for why not look more closely (for newbies) at possible various radiation(s) combos or other methods, as one can have much more likely continency and maybe even no ED issues..."

Mel is less than a month out of surgery.

I'm going to stop here before I say something I'll regret later.

Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 314
   Posted 2/13/2010 10:59 AM (GMT -6)   
Compiler,

Here's what I would do (actually, what I did):

1. Start with Viagra, Cialis, or something like that. Use it for awhile (they're very expensive and usually not covered by insurance), until you get a response or you decide it's not going to work for you. Use the lowest dosage possible; cut the pills in half if you need to. Again, they are expensive.

2. Forget all the pumps, etc. I'm with Scardino on this one.

3. Start m*sturbating, but with a very laid back attitude. If it happens, it happens.

4. Don't worry. Most of your recovery will take place naturally, so don't freak out over erections.

Zen9
No family history of PC.  PSA reading in 2000 was around 3.0 .  Annual PSA readings gradually rose; no one said anything to me until my PSA reached 4.0 in September 2007, at which point my internist advised me to see a urologist.   
Urologist advised a repeat PSA reading in six months = 4.0 .  Diagnosed May 2008 at age 56 as a result of 12 core biopsy.  Biopsy report by Bostwick Laboratories = Gleason 3 + 3. 
Interviewed two urologists - the one who did the biopsy and another - the latter had the biopsy slides re-examined = Gleason 3 + 3. 
Then went to M. D. Anderson Cancer Center in Houston in July 2008 and met with a urologist and a radiologist.  Biopsy slides re-examined yet again, this time by MDA's internal pathology department = Gleason 3 + 4.   
Chose da Vinci surgery over proton beam therapy; surgery performed at M. D. Anderson Cancer Center on August 15, 2008.  Post-operative pathology report = four tumors, carcinoma contained in prostate, clean (negative) margins, lymph nodes clear, seminal vesicles clear.  Gleason = 4 + 3. 
Minor temporary incontinence; current extent of ED uncertain due to lack of sexual partner; refused treatments for ED as being pointless under the circumstances. 
PSA readings: 
November 2008 = <0.1 ["undetectable"]
June 2009 = <0.1   
December 2009 = <0.1
 


Redman55
Regular Member


Date Joined Jan 2010
Total Posts : 87
   Posted 2/13/2010 2:22 PM (GMT -6)   
I think James C is spot on with this one. I use what he referenced as the 3 "P"'s, and that's my story and I'm stickin to it. (Sorry...carried away!) The 3 "P"'s are pills, pump(ved) and pricks -namely injections. James C - that is news to me on orgasms retraining per continence as mine is definitely continuing to improve, and I was wondering if that helped. The therapy is as stated above...the longer junior remains idle, the longer it will be to restart. All of the stats point to this. To each his own, by using trimix (injections)my better half and I are back in the game no matter when my right-side nerve bundles comes back to life to self-start my friend. I use ed's multiple times per week, ved at least 5 times per week, and trimix twice per week on average.

Compare recovery to an ACL tear. Pros make it back in 9 mos on average, and amateurs - who don't aggressively rehab - take much longer. Same deal. They say relighting takes from 4 mos to two years to regain function. IMHO - how I rehab will determine where on the time line things light up again. Frankly, per trimix, for me that took a major league concern off the table psychologically. No denial for this kid. I wanted to get back to as close to normal as possible, and I'm not sitting around waiting for an apple to clock me in the head. Through the 3 P's I'm pretty much there. As I said, to each his own.
Age 54
PSA 8/2009 5.6 Gleason 8
DaVinci surgery 11/2009
Pathology - totally contained in margins -one bundle spared
PSA now undetectable at < .05
Continance: Night and morning fine and improving
Doing 3 P's and now using trimix


profman
Regular Member


Date Joined Jan 2010
Total Posts : 55
   Posted 2/13/2010 4:07 PM (GMT -6)   
Hi Mel - I view the use of the pump as rehabilitation - besides it reminds me of what an erection looks like. Not trying it for sex, but just to keep the blood flowing. I am only about 9 weeks out from surgery, and know that we are thinking long term. It is not hard to fit into a morning or evening routine. Have not tried the pump with Viagra - although I do take 50 mg Viagra every other day, also to keep the blood flowing. Whatever you decide, the best of luck to you.
Diagnosed 9/4/09, age 59
PSA 3.5, up from 1.8 year before
First biopsy showed 3/10 positive cores, Gleason 3+3, less than 10% involvement in all three cores, diagnosed as T2a
Doc and I decided on Active Surveillance, pending a confirmatory biopsy
Second biopsy showed 5/10 positive cores, Gleason 3+3, left side (4 postitive cores) had 40% involvement
RRP on 12/15/09
Home on 12/16/09
Failed cystogram on 12/23/09, catheter out on 12/29/09
Path report was all good news, Gleason 3+3, no margin involvement, no perineural involvement, everything clean other than core of prostate, tumor on both sides, but more prevalent on left side, 5% involvement, 42 gram organ
Within two days down to one pad a day, now continent except if I sleep more than four hours
Back to work 1/4/10
First PSA 1/28/10 - nondetectable, next scheduled June 2, 2010
ED present, although blood does flow after Viagra. working with pump now - still trying!


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 2/13/2010 4:09 PM (GMT -6)   
Zufus,

I would concur with Casey. Make a new thread if you want to talk about a treatment topic in that light, but it is kind of insensitive to make a statement to a post surgical guy like that.
Goodlife
 
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 .
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)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01


Jstars
Regular Member


Date Joined Oct 2005
Total Posts : 489
   Posted 2/14/2010 12:20 AM (GMT -6)   
Mel,

Here is my take on the use of a pump. When you and your partner are playing The Rehab Game during the next few months (and nothing really happens) it CAN be a little depressing -- so much so that after a while you will wish that she would just leave you alone so as not to remind you of your current condition. BUT, with the VED in your back pocket you can always cheerfully say, OK enough of that fun, time to Pump Things Up and have some real fun. And you just go off and do it and its fun fun fun til the daddy takes the pumping away-yaaaay. It really does make a difference in how you feel about your ED progress (or lack of it or slowness of it) to have that method available.

Also, after almost a year of faithful pumping and ever so slow ED changes I can say with conviction that I'm coming out of it with length intact and with some bonus girth to go along with it ( based on MUSE or Trimix-Gel or just massbation appearances). So that helps to keep your morale up too.

A lot depends on how well the whole pumping experience goes for you. Some don't like it at all (maybe it is the pump design-- i don't know ) some don't mind it at all, even though it might not be ideal method.

jim
Age 59, 57 at DX, PSA Aug2008 7 4 ... June2007 4.7 (BPH + LUTS)
11/2008 Biopsy: 1 of 12 cores 5%, Gleason 3+3 - Sona showed size 140+ cc (110 grams post op).
02/03/09 open RRP surgery , Nerve sparing both sides, 1 day in hospital, Day 4 first BM,
Pathology Report: All margins clear - No Invasive spread - no change in Gleason score.
02/18/09 Cath out, passed a 1cm oblong STONE within hours.
03/06/09 Started Levitra@20mg / Viagra@100mg / (04/01) Cialis@20mg -- (no effect yet 02/2010).
04/01/09, 07/07/09, 10/01/09, 01/15/10 PSA <0.1
08/09-09/09 MUSE@1000mcg (alpro ache) @500mcg -- less ache.
10/09-11/09 TrimixGel@(500/300/100mcg): 60, 70,80%,
02/10 TrimixGel@1000/300/100mcg - 80-90% - (with cialis) - just @ usefulness.

Post Edited (JimStars) : 2/14/2010 12:49:17 PM (GMT-7)


zampilot
Regular Member


Date Joined Aug 2009
Total Posts : 152
   Posted 2/14/2010 8:59 AM (GMT -6)   
The Pump works, for therapy and fun!

medved
Veteran Member


Date Joined Nov 2009
Total Posts : 1100
   Posted 2/14/2010 11:02 AM (GMT -6)   
Zen9 -- You mention Scardino's views on pumps, etc.   Can you point me to his writing on that subject?  I would be interested to see what he has to say.  Thanks.
Age 45.  Father died of p ca. 
My psa starting age 40: 1.4, 1.3, 1.43, 1.74, 1.7, 1.5
 


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 2/14/2010 2:23 PM (GMT -6)   
You guys are right seems insensitive, so apology to Mel and others. It is sad how much you have to endure through surgery especially, so I do feel for those whom have gone through this and hope you future successes.
Youth is wasted on the Young-(W.C. Fields)


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7269
   Posted 2/14/2010 2:48 PM (GMT -6)   

Folks:

 

I was not at all offended by ANY of the responses. The big advantage of HW is that you get a plethora of responses. I find I can sift through them and eventually gain some knowledge. You always have a few folks that have their particular biases/axes to grind. I take some of that with a grain of salt. But it is the totality of posts that leads one to a better insight.

 

All that has helped me make treatment decisions. I do not at all regret my decision. I still maintain that given my pre-op stats, it was the correct decision. There was no guarantee that the pathology would be excellent. It is what it is!!

 

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

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. 

 Incontinence: joined that club-- definite leaks—1 pad/day. Night is dry but using 1 pad at night for security.

Next Event: First post-op PSA on 3/1/10


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 2/14/2010 2:54 PM (GMT -6)   
Way to go Mel. Never look back. Some of us are tougher than others, but there are some who an unintended comment could cause some moments of doubt and second guessing.
Goodlife
 
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 .
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)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01


Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 2/14/2010 3:10 PM (GMT -6)   
Mel,
My wife and I were talking just last night that the PCa guy needs to have an arsenal of weapons in this fight. Redman is absolutely right that we need to use ALL of these things at the same time...not just one. My doc told me to pump twice a day. Med's when I want more. They work fine for me, but I have heard so many great things about trimix that I may get some. Viagra is unreliable on a stomach with anything at all in it for me.

We can't inject every day, so a pump some days, and meds other days, cock rings as needed.
One REally nice thing about the pump - I do mine in the shower - and what it does for my self esteem and sense of still being a sexual being is great. I pump in the shower, when I am done washing up, I take it off, rinse it out. open the curtain and there in the mirror is my best friend looking like he belongs in a **** flick. It is the best boost to my libido I can think of. Try it. A sex shop pump on line can be less than $20.
Paul
www.franktalk.org ED website for PCa guys

46 at Diagnosis.
Father died of Pca 4/07 at 86.
10/07 PSA 5.06 (Biopsy 11/07 1 of 12 with 8% involvment) (1mm)
Da Vinci surgery Jan 5, '08 at Mt. Sinai Hosp. NYC www.roboticoncology.com
Saved both nerve bundles.
Path Report: Stage T2cNxMx
-Gleason (3+3)6
Pad free on March 14 - (10 weeks.) Never a problem since.
ED - at one year, ED is fine with viagra.
Two year PSA - undetectable!


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 2/14/2010 4:36 PM (GMT -6)   
So, Mel, you got enough data to decide to go the 3 P's route yet? devil 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
32 mts: PSA's: .04 each test since surgery, ED Continues-Bimix .3ml PRN or Trimix .15ml PRN


MrGimpy
Veteran Member


Date Joined Jul 2009
Total Posts : 504
   Posted 2/14/2010 6:47 PM (GMT -6)   
Mel,

I used the pump early on Post-op but only to keep the muscles stretched and prevent atrophy. Once I started the Trimix Injections the Dr said there was no reason to keep on the pump. The goal is to get full erection that is firm enough for intercourse. With the Trimix , erections are the firmest it has ever been, rock hard would be a better way to describe it

Use the pump for therapeutic reasons ( if not for intercourse) , figure it as Physical Therapy
Stats:
Age: 52, PSA (2008)=1.9
Biopsy on 01/09/09, Gleason Score = 3+3
One (1) out of twelve (12) cores was positive, plus external nodule found
Surgery (Da Vinci, robotic prostatectomy): 4/7/09
Post Op Path 3+3
Removed Catheter: 04/19/09
100% bladder control - Pad free 7/09
PSA 7/09 undetectable, <0.01 - 3 months post-op
PSA 1/10 undetectable, <0.01 - 9 months post-op
Trimix provides 100% erectile function


rob2
Veteran Member


Date Joined Apr 2008
Total Posts : 1132
   Posted 2/14/2010 7:29 PM (GMT -6)   
I used the pills and the pump. Cialis worked best for me. I agree with you on getting the cancer first. I told the doctor get the cancer, get me continent and then let's talk about erections.
 
Age 49
occupation accountant
PSA increased from 2.6 to 3.5 in one year
biopsy march 2008 - cancer present gleason 7
Robotic Surgery May 9, 2008 - houston, tx
Pathology report -gleason 8, clear margins
20 month  PSA <.04 (low as the machine will go)
continent at 10 weeks (no pads!)
ED is still an issue but getting better

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