Are we regressing?

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Diagnosedat40
New Member


Date Joined Jul 2008
Total Posts : 2
   Posted 7/21/2008 9:42 AM (GMT -6)   
Hi,

I just found this forum about 10 minutes ago and not really read through it completely, so if I am repeating or not doing something incorrect, forgive me. I was a little excited to find this forum.

My husband was diagnosed in October 2007 and had RP Nov. 13 2007. Things went very well. Contained. Incontinence not really an issue (pad free after about 3 or so weeks). Erections were great. Sex was resumed. Now, 7 months later... we are having problems. Has this happened to anyone? It is like we can't get an erection anymore. We are devastated. We started off with meds, but then were able to have erections without having to use them. We are now keeping a log to keep track of meds we've tried (and what happens on them, because we cannot remember what it was like when we first started out after surgery with the meds). 100 mg of Viagra did nothing for us last night. Leveitra (I can't spell).. the lowest dose.. did nothing.

Any suggestions, words, tricks, potions :), would be greatly appreciated.

Thanks,
Jeri

biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1464
   Posted 7/21/2008 9:58 AM (GMT -6)   
Hey Jeri,

Welcome to the forum and sorry you have to be here.

Strange things happen to our bodies after surgery. Nerves get disturbed and its pretty unpredictable as to when they heal and get their pathways established. Things change for a year or so, it seems to be my case anyway. Its great that his sexual function came back so quickly after surgery so don't give up. You will find a wealth of information on what we used here on the forum. I use L-Arginine, Viagra (generic) and penile injections using Trimix. Yeah, that's a lot of stuff and it sure is different than the natural spontaneous erections before cancer but that is just the nature of this disease. We get used to doing things differently in order to have a quality life again.

Please stay with us. We can all get well together...

Jim


Age 74. 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 - 7/17/08 0.00. 
Next PSA test on 1/28/09
Lung cancer dxed on 5/16/08.  Surgery on 6/25/08  T1N1M0 - Stage IIA
"Patience is essential, attitude is everything."


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 7/21/2008 10:15 AM (GMT -6)   
                                                                tongue    Hi ~Diagnosedat40 and Loved Ones,

 

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Pux
Regular Member


Date Joined Jan 2008
Total Posts : 23
   Posted 7/21/2008 12:50 PM (GMT -6)   

Hi

His operation was on the exact same day as mine. To date I have not had an erection of any kind. With or without meds. I had no preblem prior to the operation. I am assuming that because he has already experienced erections that this is only a minor setback. Please post all the pertinent info such as PSA before and after, age etc.

Good luck,

Pux


Age 62 Born Dec 30/45
Diagnosed with regular check up PSA 4.7
Biopsy Sept 2007  7 of 12 positive
Surgery- Da Vinci Nov 13- London Ontario- Canada
PSA MAR 3 .03 UNDETECTABLE
 


egor
Regular Member


Date Joined Jun 2008
Total Posts : 46
   Posted 7/21/2008 1:36 PM (GMT -6)   
Hi Jeri,
Other meds can also cause temporary ED. eg I briefly went on Imiprimine for incontinence, but immediately discovered no more erections. Stopping it allowed erections to return.
Is he taking any new meds, especially anti anxiety meds?
Ed

Ed from Rochester, NY 66 years old
PSA 6/06 1.9
4/06 Biopsy 1 core cancerous Gleason 3 + 3 = 6
8/06 Da Vinci Dr. Joseph, Strong Memorial, Rochester, NY
Gleason 3 + 4 = 7, negative margins
3 month PSA .01
6 month PSA .01
9 month PSA .02
1 yr PSA .01
1 1/2 yr PSA .02
1st collagen 12/07
2nd collagen 3/08
Imiprimine 7/08
still leaking about 120 ml/day 2 - 4 pads


Frank1205
Regular Member


Date Joined Feb 2008
Total Posts : 308
   Posted 7/21/2008 2:34 PM (GMT -6)   

Hi Jeri,

I had a couple of erections right after surgery with the Cath still in.  Then my function seemed to lessen quite a bit and now at 4 months it is coming back with out Viagra and much better with Viagra.

Almost as good as before surgery but not quite.  Leakage is still and issue during sex.  Getting better month by month.

Frank

 

 

 


Diagnosed 01-08-08 @ 53 years old 
DRE normal - Bouncing PSA for 5 or more years a high of 10
2004 Biospy negative - 2008 Biopsy positive (01-08-08)
10 cores, 1 positive and at 1% of that one core
Current PSA 6 - Bone and Ct scans negative
clinicalg Staged at T1C - Gleason 3+3 = 6
Robotic Da Vinci performed March 27th, 2008
University of Chicago,5 hour surgery , 3 hour recovery
Unexpected Cardiac issues appear and disappear?
Hospital stay 30 hours - Catheter out in 7 days  normaly expected leakage - Erectile funtion back on line 9 days 
Post Pathology T2C, Gleason 7, 10 % of both portions of prostate, Seminal vessels clear, fat tissue clear,Tumor on top of prostate. 1 positve margin at urethra and bladder..
Six week PSA < 0.1 Ya Ba Da Ba Dooooooooooo.  Put a steak on the grill Wilma!!!!
4 month PSA <.05 Gen II test.  Urologist wants to hold off on Radiation and watch PSA closely
 
 
 


divo
Veteran Member


Date Joined Jul 2008
Total Posts : 637
   Posted 7/21/2008 6:47 PM (GMT -6)   
Hi Jeri, Things will get better. You have youth on your side....Don't worry and take a lot of walks. Dont even think about sex for awhile. Just be happy he is there and cheerful....Cheerful is good..! I'll take cheerful.. Di
Husband Pete
dx Jan 2001 age 67 gleason 4 + 3 PSA 16.5
seed implant and conformal radiation Lupron from Jan 2001 to Jan2002
2005 Dec PSA began to rise from .5 to 8 within 6 months
Salvage surgery at MSK 9/06
Fistula operation 2/07 MSK
Many cystoscopies and ER visits with strictures
catheter for one year....Catheter taken out Sept 07..
Total Incontinence since then....
PSA .52 3/07
In line for AUS possibly in Sept 08


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 7/21/2008 6:47 PM (GMT -6)   
Just a suggestion from a totally impotent young fellow due to radiation and medication. I would encourage you guys to relax and enjoy life and each other. Once you let go of having to have an erection and learning to stimulate each other throw loving, rubbing, hugging, etc, I am betting the erection will come back. Please do not create any expectations. This will bring you two to a bond you did not know exist. Love life and each other and who knows what the future will hold. I am thinking one day the passion will be so great that having an erection will just be icing on the cake.

peace and love
Dale
My PSA at diagnosis was 16.3
age 46 (current)
My gleason score from prostate was 4+5=9 and from the lymph nodes was 4+4=8
I had 44 IMRT's
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
latest PSA 5-27-08 0.11
cancer in 4 of 6 cores
92%
80%
37%
28%
 


smilingoldcoot
Regular Member


Date Joined Jan 2008
Total Posts : 338
   Posted 7/21/2008 7:47 PM (GMT -6)   
I know one thing for 100 percent sure. A dead man can not even hold his love one in his arms.
 
Richard
Retired USAF Richard & Debbie on The Shores of Toledo Bend Lake Louisiana
Biospy 1/10/08 Gleason 10, Stage T1C  8 of 12 samples positive all Less Than 5% 
Jan & Feb & Mar all tests clear
MD Anderson = No surgery and No Proton only Hormone and IMRT
Contacted with Loma Linda and UFPTI in FL
Started Treatment at the U of Florida Proton Therapy Institute in April 2008
May 2, 2008 LUPRON & Casodex
IMRT to started  5/27/2008 Will get 42 treatments 25 IMRT and then 17 Proton
Turn Stumbling Blocks into Steping Stones and Keep Smiling
Our Journey is on WWW.GLEASON10.COM
 


CPA
Veteran Member


Date Joined Feb 2008
Total Posts : 655
   Posted 7/23/2008 6:24 AM (GMT -6)   

Greetings, Jeri.  I had surgery on Feb 4, 2008, catheter out on Feb 13 and have done very well.  Doctor gave me Cialis to use just to "stimulate" things.  However, had an erection on Feb 17 so called the doc's office and the nurse said not to take the meds if I didn't need them.  What we found over the last several months is that the erections, while sufficient, were not as firm and there was definite shrinkage.  At my second 90 day PSA test (zero yeah ) I asked about shrinkage and not being quite as firm and he suggested I try Levitra 10 mg.  It has made a huge difference (no pun intended).  With Levitra I am back to normal size and firmness.  Without Levitra I still get erections but not as firm. 

At first I was somewhat disappointed that I seemed to be going backwards after it looked like we wouldn't have ed issues.  However, I realized there is a reason doc's want us to take the ed drugs shortly after surgery regardless of whether or not we are having issues.  I wish I had gone ahead and started in late February rather than waiting until July. 

Hang in there.  By the way, we firmly believe this is a couples issue.  Men don't get erections, couples do.  I'm glad to see you are very involved and I'm sure your husband appreciates it as well.  David


Age 55
Diagnosed Dec 2007 during annual routine physical
PSA doubled from previous year from 1.5 to 3.2
12 biopsies - 2 positive with 2 marginal
Gleason 3 + 3 = 6
RRP 4 Feb 08
Both nerves spared
Good pathology - no margins - all encapsulated - Gleason 4 + 3 = 7
Catheter out Feb 13 - wore pad for couple of days - pad free Feb 16
Great wife and family who take very good care of me


Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 7/23/2008 8:43 AM (GMT -6)   
Identical problem here. Was going gret guns at ten weeks. Then at five months it all went away - not even with viagra. The surgeon insisted that because it HAD been working that it was not a nerve issue. I now disagree - I think things change, morph etc and i am now seeing improvement at 8 months - but much more inline with the average experience. I thought it might be welbutrin I was on and so stopped it. There was no visible improvement. I am now back to using a pump as much as possible and it seems to help. i forget that it needs rehab every day - like any other part of the body.  Get on viagra and start working it out either together or by himself and use a pump. It will all only help.
47 at Diagnosis.
Father died of Pca 4/07 at 86.
1/06 PSA 3.15
1/07 PSA 4.6      (Biopsy 3/07 just suspicious)
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
-totally contained to prostate,
-10% involvement in L & R Mid lobes
PSA 0 at six weeks
Pad free on March 14 - (10 weeks.)
ED - Take 100mg viagra every night.
Totally usable erections at 10 weeks.
 
 


Diagnosedat40
New Member


Date Joined Jul 2008
Total Posts : 2
   Posted 7/23/2008 12:18 PM (GMT -6)   
Thank you so much for posting. We wish we had found this board months ago! We appreciate the kind words and the your stories. Keep them coming (no pun intended tongue )
Before surgery PSA: 3.2
Diagnosed: October 4, 2007. Age 40
Biopsy: Gleason 7. (3+4) Two of twelve samples positive with <17% each. No perineural invasion seen.

Surgery: November 13, 2007
Post-op Pathology: Downgrade to Gleason 6 (3+3), negative margins, negative capsular penetration, negative seminal vesicles, lymph nodes removed, multifocal perinural invasion, 20% of prostate involving cancer in right lobe.
Stage: T2b

Continence: Out of pads at two weeks.
Erections: Was! Now... the soldier is not standing up for the fight!
Post Surgery PSA: Three tests, all <0.1


41diagnosed
Regular Member


Date Joined Jun 2007
Total Posts : 176
   Posted 7/24/2008 7:42 AM (GMT -6)   
Guess someone was thinking like me when you created your name here...
 
Anyway, glad you found the site.  Can't speak to the success then subsequent failure, as i did not have success with erections following surgery.  But my doc started trimix injections 6 weeks post surgery which was far less difficult than i ever thought it could be.  Honestly, it becomes pretty easy to do and the results give you oppty to carry on your sex life which is no small thing. 
 
Personally, the meds...levitra, cialis, viagra... all make me feel lousy...headachey, stuffy nose, flushed, muscle aches, etc.  The trimix does the trick and no side-effects.  At first there was local aching from it, but after about a month that dissipated.  I also switched to bimix which helped the aching.  Accidentally i did the trimix again (bottles next to eachother in the fridge), and no aching, so now i have plenty of "fun in a bottle" to use up!
 
42 yo. now
 
5/07 PSA 4.65 at routine physical
6/07 biopsy positive for cancer...Gleason 3+4...diagnosed at 41 y.o.
6/07-9/07 manic research and interviews with physicians across the country in search of the "right" decision.  I went to Mass General in Boston, Loma Linda, University of Chicago and Northwestern.
9/17/07 - Radical Retropubic Prostatectomy Surgery at Northwestern Memorial in Chicago by Dr. William Catalona.  Thankful the father of the PSA test was right here in Chicago.
 
Post op pathology was Gleason 3+4 with negative margins, no seminal vesicale involvement, no lymphatic or vascular invasion, bladder and urethral free and tumor volume was 5% of 27.3g.  
 
9/27/07 - Catheter removal...let the games begin...
 
12/07 - Threw out the pads.  I only had to use 1 pad per day for protection against minor drips. 
 
I started Trimix 8 weeks after surgery with success.
 
I hope someday I won't need injections, but I hope more that my PSA stays at 0 forever.
 
 
 

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