Has anyone successfully weaned off the three p's?

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soulmate 101
Regular Member


Date Joined Jan 2010
Total Posts : 57
   Posted 3/27/2010 10:22 AM (GMT -6)   
We are told by our doctor that using meds and injections at this point is for the purpose of eventually not needing them. However, my impression is that as far as two years post surgery, most PCa survivors are still using these implements to obtain erection and have a satisfying sex life.

Is there anyone here who has indeed used pills, pump and pricks and then been able to regain natural erections? Could you share a bit about that?

Trying to get a sense of what to expect. We are at a point where the pills initially worked somewhat and are now hardly working at all. Granted, we stopped using the viagra due to cost factors and are using the meds from India. Also have some samples of Cialis and Levitra with not very impressive results.


soulmate 101 shakehead
Husband, age 57, diagnosed in December 09, after PSA velocity increase from 2.71 to 4.34 over one year prompted a prostate biopsy.
Gleason 4+3 = 7 stage T2c, laparoscopic nerve sparing Da Vinci robotic radical prostatectomy 1/13/10, clear surgical margins no lymph node or seminal vesicle involvement.
six weeks post op: leaking has stopped, no more pads, soreness in wounds has dissipated. ED: inconsistent results with Viagra, just started using Manly, with some promising results. In good spirits. (thanks to you folks)


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2458
   Posted 3/27/2010 11:55 AM (GMT -6)   
I had my nerve bundles removed during surgery so my situation is not the norm. I do use the pill, the pump and the needle and will probably always have to do so. I do however see some kind of improvement since my surgery 14 months ago.
Age: 67 at Dx on 12/30/08
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
2 cores out of 12 were positive Gleason (4+4) and (4+5)
Negative CT scan and bone scan done on 1/16
Robotic surgery performed 2/9/09 Dr Fagin, Austin TX
Pathology report:
Prostate weighed 57 grams size:5.2 x 5.0 x 4.9 cm
Posterior lateral lesions measuring 1.5 x 1.4 x 1.0 cm showing focal capsular penetration over a distance of 3mm in circumference.
Prostatic adenocarciroma accounts for approx. 10-20% of the hemisphere.
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx, Negative margins
seminal vesicles clean, lymph nodes: not dissected
continent after 4 months
8 weeks PSA test 4/7/09 result <0.1
5 months PSA test 7/9/09 result <0.1
8 months PSA test 10/9/09 result <0.1
11.5 months test 1/21/10 result 0.004


Radical
Veteran Member


Date Joined Mar 2009
Total Posts : 739
   Posted 3/27/2010 5:11 PM (GMT -6)   
Soulmate, My stats very similar to your Hubby's, I am 16mnts out from Surgery, using Manly's also, I split one tab into four.  Thus taking 25mgs per day, with great results.  Can now achieve erection (90%, good enought to do the job), without Meds, but meds certainly make it easier. Good Luck.................Kev
Age 51yrs
6 out of 8 cores positive 3 X 60% / 3 X 10%
PSA 4 Gleason Score 3+4=7 Stage T1c
Robotic Surgery 24/12/08
Upgrade Gleason Score 4+3=7 Gleason Differential 60%/40%
Stage T2c Three small foci total volume <10%
Neg Margins and Nodes
Nil - Extraprostatic Extentions
Dry less than 1 week. ED- okay with Meds.
PSA at 12mths no change remains 0.03
"Everyday in Everyway I get better"


creed_three
Veteran Member


Date Joined Jan 2007
Total Posts : 762
   Posted 3/27/2010 5:37 PM (GMT -6)   
Hi Soul,
My husband was on oral meds for about a year then gave them up. We had lots of periods of some actvity, then nothing at times. Nothing without meds to about 8 months and then from 8-10 months meds started to work. In retrospect I think this was healing in stages as it then slowed down for the second year post op. Also at 2 years and about 90%, with and without meds sometimes, I thought that was going to be the extent of healing, and that it would remain uncertain to a degree. However in the third year, without meds or anything else, spontaneous e's started again as pre-surgery. My husband had a thing about needles and could not manage the pump. He still kept up "rehab" in other ways however to promote circulation. In my opinion, gradual healing can extend to up to 3 years as it did in our case. Many guys here have loads of experience with injections, so hopefully they will give you tips there as to what to expect in the long-term there. I hope this helps. cheers & best wishes, Lana
Creed_three (Lana) - with husband "CJ" now aged 52 yrs (49 years at diagnosis).
PSA (2002) 2.1. (2006) 3.5.  1 x 5% core of 12 positive at biopsy. Open Radical Prostatectomy with nerve sparing April 2007 Sydney, Australia. Gleeson 3 + 4 = 7. 2 small multifocal lesions. Contained. Undetectable <.1 PSA since: June 2007-0.01, Oct 2007-0.02, April 2008-0.02: Oct 2008-0.03, Nov, 2008-0.02, April 2009-0.03. Next PSA April 2010.


soulmate 101
Regular Member


Date Joined Jan 2010
Total Posts : 57
   Posted 3/27/2010 7:04 PM (GMT -6)   
Lana, Kev and Ed,
Yes, your posts do help. I think I need to feel hope in the long run, because even though surgery was so recent, the inconsistency of results in this department is challenging.
We were so active and affectionate up to the day prior to surgery, (the morning of, to be honest) and it feels like having gone from feast to famine.

I don't want our "rehab efforts" to make what was once our oasis of bliss into a therapeutic, mechanical chore.

A friend of mine, whose mother is at the end stage of illness, was telling me about how every time she sees a flower, she weeps, her mother's bliss was in gardening, and there is a poignancy that she will not be able to experience that joy again.
Does it sound dramatic, emotional or odd, that at times our efforts at lovemaking leave me rather teary eyed? Not very sexy, I'm afraid.

but in truth, hearing your experiences has helped. thank you .

soulmate101
Husband, age 57, diagnosed in December 09, after PSA velocity increase from 2.71 to 4.34 over one year prompted a prostate biopsy.
Gleason 4+3 = 7 stage T2c, laparoscopic nerve sparing Da Vinci robotic radical prostatectomy 1/13/10, clear surgical margins no lymph node or seminal vesicle involvement.
six weeks post op: leaking has stopped, no more pads, soreness in wounds has dissipated. ED: inconsistent results with Viagra, just started using Manly, with some promising results. In good spirits. (thanks to you folks)


Frank1205
Regular Member


Date Joined Feb 2008
Total Posts : 308
   Posted 3/27/2010 9:47 PM (GMT -6)   
Soul Mate 101

I am 2 years post op. Somewhat similar stats. My Surgeon, bragged about his techniques in this department, Professor University of Chicago, I don't know about that, I wish he was better with his margins.

Honestly, I was having some difficulties in this department before surgery. Doc gave me some Viagra to try before surgery to get used to it so when I was post op I would know what to expect. Wow. it worked good before the operation and now I am just about back pre op condition, but it is of course different.

I have been experimenting with when to take Viagra. I have been taking 50 mg. several hours before activity and then 50 mg 1 hour before. Good results. I have also been using a restricting device. You can find them at any adult shop. This was helping tremdously before the op and with Viagra good results after.

Side effects are bothersome, flush, itchy eys, stuffy nose and headache. I have learned to take my other medications after sex.

I have been waking up with erections more often even without the viagra and some other suttle signs of improvement. I find that if I wait several days for any
sexual activity it seems to work better. Since surgery I am on cholestrol meds and blood pressure medicine. Both of these are not friends of my sex life. So without them I could be doing better for sure.

I know you probably know this but, tell your Doc to make the prescription for the 100 miligrams. You can always cut them to a dose that works. Insurance goes by number of pills not the dose I have learned.



Frank
Currently 55, surgery at 54
Normal , 2004 Biospy negative - 2008 Biopsy positive (01-08-08)
10 cores, 1 positive and at 1% of that one core
PSA @ surgery 6 
Bone and Ct scans negative
clinicaly Staged at T1C - Gleason 3+3 = 6
Robotic Da Vinci performed March 27th, 2008, University of Chicago.
Catheter out in 7 days normaly expected leakage
Post Pathology T2C, Gleason 7, (3+4) 10 % of both portions of prostate
Seminal vessels clear, fat tissue clear, single positve margin at apex measuring less than 1/2mm. 
PSA Six week < 0.1 4 month PSA <.05 6 month PSA<0.01,9 month<0.01,12 month <.008, 18 month .010, 03-21-10 (24) months .010 undetectable
Watching PSA @ 6 months for 2 years,  will do salvage radiation if necessary.
Fair to Good results with Viagra,  side effects are bothersome at times. Tried Levetra about the same as Viagra.  Tried Cialis, think I will stay with the Viagra at 50 mg.  Side effects worse at 100 mg.  
 
 
 


soulmate 101
Regular Member


Date Joined Jan 2010
Total Posts : 57
   Posted 3/28/2010 6:48 PM (GMT -6)   
Thank you Frank.
Your post is both helpful and to hear of your improvements is encouraging. Thank you for sharing.
Hadn't heard of the idea of taking tandem dosages like that. Could be a good idea.
I think for my husband Viagra has been the best of the three meds also, but have been cost prohibitive and we also had trouble with insurance covering them.

soulmate 101
Husband, age 57, diagnosed in December 09, after PSA velocity increase from 2.71 to 4.34 over one year prompted a prostate biopsy.
Gleason 4+3 = 7 stage T2c, laparoscopic nerve sparing Da Vinci robotic radical prostatectomy 1/13/10, clear surgical margins no lymph node or seminal vesicle involvement.
six weeks post op: leaking has stopped, no more pads, soreness in wounds has dissipated. ED: inconsistent results with Viagra, just started using Manly, with some promising results. In good spirits. (thanks to you folks)


gold horse
Regular Member


Date Joined Nov 2009
Total Posts : 360
   Posted 3/28/2010 9:40 PM (GMT -6)   
After five years,I still use the pills because it put me in the 100%position;if I do not use it I get about 75 to 80 % do the math.yeah
DIAGN=46 YEARS
GLEASON=3+3
FATHER HAD PC,THEN I THEN MY BROTHER STILL HAS TWO BROTHER PC FREE.
MARRIED,TWO CHILDREN.AGE 13 AND 8.
LAPROSCOPY SURGERY 6/2005
PATOLOGY REPORT.
GLEASON=3+3
TUMOR VOLUME=5%
LYMPHOVASCULAR INVASION=NEG
PERINEURAL INVASION=POSI
TUMOR MULTICENTRICITY=NEG
EXTRAPROSTATIC INVASION=NEG
SEMINAL VESICLES BOTH=CLEAN
MARGIN ALL=NEG
PT2ANXMX
DEVELOP SCART TISSUE AND NEEDED A SECOND SURGERY BECAUSE COULD NOT URINATE,
PSA 6/05=0.04,0.04,0.04,6/06,0.04,0.04,0.04,6/07,0.04,0.04,0.04,6/08,0.04,0.04,1/09
0.04,10/09,0.04
 


Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 3/29/2010 7:20 PM (GMT -6)   
I know lots of PCa guys who, after a year or so, who do not need meds at all. This board is not an accurate cross section of Pca guys, remember. i can get an erection, but it is just so much easier with drugs. and if I need drugs, who cares? So do lots of men who never had PCa. Any sex is good sex.
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!


Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 3/29/2010 9:43 PM (GMT -6)   
soulmate 101 said...
However, my impression is that as far as two years post surgery, most PCa survivors are still using these implements to obtain erection and have a satisfying sex life.
 
 
Not to be contrary, but I think that the premise of your question "Has anyone successfully weaned off the three p's?", and your comment above about most PC patients using "these implements" is flawed.
 
Firstly, the most common approach to post-RP penile rehabilitation is NOT to start with all three p's.  Rather, start with pills.  If pills do the trick, then fine, no need to advance further.
 
If pills don't do the trick, then try adding the pump.  If adding the pump does the trick, then fine, no need to advance further.
 
If pills and the pump don't do the trick, then try adding the prick.
 
Some docs push their patients to do more accelerated combinations of these, but the approach I've given above is most common in the literature.
 
So, maybe what you meant to inquire about was whether most men who start using one or more of the p's end up continuing to use it (or them) over the long term.
 
My personal response is similar to Paul1959's.  I started by using pills.  Now that some time has gone by, I sometimes forget to take a pill and have success even without it...but I rather enjoy the effect of the pill, and have no problem continuing to take it.
 
Hope this helps...
 

Redman55
Regular Member


Date Joined Jan 2010
Total Posts : 87
   Posted 3/29/2010 10:28 PM (GMT -6)   
Soulmate,

Each scenario is different. The progression is the typical method of pills, then ved, then injections. I am only 4 months out from surgery, but eregra(viagra generic) and trimix bring the world back to basically normal. If it takes two years to get close to normal, then there is no anxiety per waiting as the issue is basically solved now. You can view the process in a negative or positive.

Also, results can also depend if there was a case of atherosclerosis (high cholesterol) prior to surgery as that can have a substantial effect too.
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: 1 pad and almost normal
Doing 3 P's and now using trimix


soulmate 101
Regular Member


Date Joined Jan 2010
Total Posts : 57
   Posted 3/31/2010 8:39 AM (GMT -6)   
Thanks, folks. Redman made a good point, that once you find something that "brings the world back to basically normal" then the anxiety about waiting is taken out of the equation. I think we are still in that limbo state where we are trying to find what works.

I do agree that if you find something that works, hallelujah.

But I will raise the point that for some folks, the $20 per pill cost of Viagra can be a no starter, if insurance does not cover what is needed. Generic at first looked promising, but does not float the boat, so to speak.

My personal reflection is that health insurance administrators don't get laid enough. Besides the scanty coverage of ED meds, look at the rest of the mess we are in!
Husband, age 57, diagnosed in December 09, after PSA velocity increase from 2.71 to 4.34 over one year prompted a prostate biopsy.
Gleason 4+3 = 7 stage T2c, laparoscopic nerve sparing Da Vinci robotic radical prostatectomy 1/13/10, clear surgical margins no lymph node or seminal vesicle involvement.
six weeks post op: leaking has stopped, no more pads, soreness in wounds has dissipated. ED: inconsistent results with Viagra, just started using Manly, with some promising results. In good spirits. (thanks to you folks)


Redman55
Regular Member


Date Joined Jan 2010
Total Posts : 87
   Posted 3/31/2010 8:51 AM (GMT -6)   

Soulmate,

 

Hilarious and so true. I am in the health benefits biz and I get crushed on the ED pills. I therefore order from overseas. Cost drops to 4$ per pill with a generic brand called Eregra - made in India. They have a huge pharma biz there. It has fewer side effects for me, and works great...that is prior to surgery. At the moment, the ed pills only cause the starter motor to turn over with a couple of turns so the trimix provides the nitro to send me down the drag strip. Hopefully, over time, I will be able to regress to just the ed pills. We shall see.


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: 1 pad and almost normal
Doing 3 P's and now using trimix


Postop
Regular Member


Date Joined Feb 2010
Total Posts : 385
   Posted 3/31/2010 11:56 AM (GMT -6)   
Everyone's experience is different I had some erections from the beginning. Occasionally Cialis would work for some poor quality sex, sometimes not. Tried the pump for a while, but it didn't make a size difference, and didn't seem to be doing anything. The constriction rings didn't seem to do an adequate job, and also, it's difficult and seems traumatic to get them off. Don't want to damage anything. So, I stopped the pump entirely after a few months.

After 6 months, switched to a generic Viagra from India--works much better, actually good enough, 100% of the time. Also, some slow steady signs of improvement, noticing a difference from month to month. I'm 9 months out now. Also noticed body position matters. Sitting up makes a real difference, with a usable erection even without pills. I think having your heart above the penis leads to gravity helping blood pool in the venous system of the lower body...you get the idea.

soulmate 101
Regular Member


Date Joined Jan 2010
Total Posts : 57
   Posted 3/31/2010 2:07 PM (GMT -6)   
well, our second try with trimix was entirely different than the first. Nothing much going on. Dr. did the injection in the office, so it had nothing to do with technique.

We'll try again in a day or two.

Don't you just wish things could be consistent?
Husband, age 57, diagnosed in December 09, after PSA velocity increase from 2.71 to 4.34 over one year prompted a prostate biopsy.
Gleason 4+3 = 7 stage T2c, laparoscopic nerve sparing Da Vinci robotic radical prostatectomy 1/13/10, clear surgical margins no lymph node or seminal vesicle involvement.
six weeks post op: leaking has stopped, no more pads, soreness in wounds has dissipated. ED: confusing


lastcowboy42
Regular Member


Date Joined Dec 2008
Total Posts : 22
   Posted 4/1/2010 12:18 AM (GMT -6)   
I had my open RP Nov of 2008 had 1 nerve spared and have nothing as of yet except payronies I am told because the cath got stuck , just went to the docs today good news another 0 somewhat scary news is he wants to do a 3+hr sergury and put in a pump implant
 I am 42 years  young
Psa 11.6
gleasen 4+3=7
Catscan-Neg but for a cyst on liver
Bone scane - Neg
11 out of 17 bio tests came back pos full rt side agressive cancer lft side  core  had 2 bios  pos
had the open RP on Tuesday November 18th of 2008 at 7:45  am , finished at 1:30 and took the 3 pts of blood I gave .
 At Kaiser Sunnyside  in Oregon
Performed by Dr Matthew Forsyth
 Came home on 11-21 , cath and staples out on 12-01
now the real work begins
 


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4110
   Posted 4/1/2010 7:34 AM (GMT -6)   
Have you tried injections? They work for me.

Cajun Jeff
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1 pre cancer core
10/08 Nerve-Sparing open radical
Surgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clear

3 month: PSA <0.1
6 month: PSA <0.1
10 month:PSA <0.1
1 year: PSA <0.1
16 month:PSA <0.1

ED - Started Cialis at 3 months, tried all 3, 6 months added pump, 9 months Tried MUSE (YUCK) Bad experience.
1 year mark Found new Urologist visit was at 14th month post surgery
Started Injections, Caverject! (Success)
17 month: ED making improvements : Oral Meds gets me 85%

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