New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Dandapani
Regular Member


Date Joined Jan 2009
Total Posts : 62
   Posted 5/10/2009 2:02 PM (GMT -6)   
A follow up to a post I made earlier. After 5 months, my incontinence is much improved, down to one pad a day (24 hours), but I'm still profoundly ED. I've tried the big 3 pills, and nothing works. My DaVinci surgery was supposed to be nerve sparing. Been throwing around ideas.

Anyone try acupuncture?
Dan

PC diagnosis @ 53 YO
PSA: 3.4 - 3.7 for preceeding 10 years, new GP advised Urologist visit

09/18/08 12 plug biopsy
09/29/08 PC diagnosis, 1 of 12 plugs, 5% cancer, Gleason 3+3 (6), left side plug w/cancer
12/17/08 da Vinci robotic radical prostatectomy, lab confirmed biopsy, 5%, PIN rest of prostrate, negative margins
12/29/08 catheter removed
03/24/09 1st PSA blood draw, < 0.1% "undetectable"

current status: 1 pad/day, dry overnight; however, total ED


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 5/10/2009 2:31 PM (GMT -6)   
Dan, would acupuncture be penile injections without the drug? turn Seriously, 5 months is early, but you might expect to see some degree of improvement by now. I am at 21 months and see none at all, where as others see it in a month or less, so the old apple about it all being individual applies. A rigid application of ed drugs, penis pumping daily, and even penile injections may be in order for you. That is something to discuss with your Doc. The pump doesn't need his prescription but the other 2 does, unless you are gonna buy from alldaychemists in India. The injection drug will need his prescription.
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- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
21 mts: ED- 50 mg Viagra 3X week, pump daily,Trimix .35ml 2X week continues
PSA's: .04 each 3 months


Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 5/10/2009 2:54 PM (GMT -6)   
Dan,
don't panic. 5 months is not the point to panic. Options are, in order of aggressiveness: Drungs: MUSE (a pill you put in the tip of the penis), TRIMIX GEL - a gel you squirt into the penis opening. Then injections.

Talk to your DR. He will probably try MUSE first. But you should probably be using injections. Remember, just cause he took out your prostate, doesn't mean he is the best guy to help you with recovery and rehab. Find a Doc who will aggressively help you. Ask him for injections.
Paul
46 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 nine months.
Pad free on March 14 - (10 weeks.) Never a problem since.
ED - Took 100mg viagra every night. for several months
Totally usable erections at 10 weeks, which disappeared over the course of a month or two.
ED bounce is what they call it. Now, at one year, ED is fine with viagra.
One year PSA - undectable!


hb2006
Regular Member


Date Joined Nov 2008
Total Posts : 299
   Posted 5/10/2009 3:46 PM (GMT -6)   
I don't think MUSE is prescribed that much anymore. It doesn't have a high success rate, only works with 35% of those who try it. It didn't work for me and gave me the alprostadil pain.

The Trimix gel will probably work but is expensive and you can't reduce the dosage easy the way you can with Trimix vials. I would definitely ask your doctor for Trimix, or Caverject or Edex. All three will most likely give you an erection but the Caverject and Edex have the associated pain.
Age 60
PSA 2007 4.1
PSA 2008 10.0
Diagnosed April 2008
Biopsy: 6 of 12 cores positive
Gleason 4 + 5 = 9
CT and Bone Scan negative
Open surgery at Shawnee Mission Medical Center May 21, 2008
Right side nerves spared
Radical prostatectomy and lymph node dissection
Cather removed on June 3rd, totally dry on July 9th
pT2c
lymph nodes negative
PSA Sept 28, 2008 0.00
PSA Jan 22, 2009 0.00


Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 5/10/2009 6:11 PM (GMT -6)   
If you are considering needles, do consider injections -- as James suggested, acupuncture of the penis. :-) If you were getting good erections before surgery, there is an excellent chance that some form of injection will work for you.

Bimix and trimix are the cheapest, so I suggest start with those -- but be prepared for some failures at first. It took about 20 injections before I mastered the techniques and settled on a dosage.

Also don't rule out a VED -- again you will need some practice until you find what works for you.

Both injections and the VED work with the non-nerve-spared, so there is a good chance that one or both of those will work with you.
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?)
ED:
After a learning curve, Bimix injections (0.2ml) are working well. VED also works but we find it inferior to Bimix.


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4101
   Posted 5/10/2009 6:44 PM (GMT -6)   
Please keep up the info. I am in a very similar situation as DAN. Just a bit forther down the road. I am using the VED and takikng Cialis daily. There is some progress which gives me hope. I have a script for MUSE but have not filled it yet. $200 for 6 insurance will not pay. I am going to ask the Dr for a sample to try before I drop the $. We will discuss injections at my next appointment in July.
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
 ED- 5 mg Cialis daily, pump daily,


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2458
   Posted 5/10/2009 8:56 PM (GMT -6)   
I tried Trimix for the first time last night. My doctor recommended that I start with .1 cc and increase it if that doesn't work. The .1 cc gave me half an erection but not enough for penetration. 20 minutes later I gave myself another .1 dosage and within 10 minutes I had a great erection and had intercourse for the first time since my surgery 3 months ago. My erection lasted 2 hours. The injection itself was painless. I had little to no discomfort.
Age: 67
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
Dx 12/30/08
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
Surgeon: Dr. Randy Fagin, Austin TX.
Pathology report:
Prostate weighed 57 grams size:5.2 x 5.0 x 4.9 cm
Bilateral 10-20% involved
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx
Negative margins
seminal vesicles clean
Lymph nodes: not dissected
1st PSA test 4/7/09 result <0.1


Dandapani
Regular Member


Date Joined Jan 2009
Total Posts : 62
   Posted 5/11/2009 4:17 PM (GMT -6)   
Thanks, guys. I definitely don't like the standard oral meds. No reaction, plus they make my nose stuffy with some pressure feeling behind in the eyes.

Injections of drugs into the penis is not the same thing as acupuncture :)

I'm going to explore the acupuncture route, but it has to wait until next month as they are expensive. From the research I've done online so far, there is a good chance it will work and be a permanent fix rather than an "applied as needed" solution, if you get my drift... Thanks for the info thus far.
Dan

PC diagnosis @ 53 YO
PSA: 3.4 - 3.7 for preceeding 10 years, new GP advised Urologist visit

09/18/08 12 plug biopsy
09/29/08 PC diagnosis, 1 of 12 plugs, 5% cancer, Gleason 3+3 (6), left side plug w/cancer
12/17/08 da Vinci robotic radical prostatectomy, lab confirmed biopsy, 5%, PIN rest of prostrate, negative margins
12/29/08 catheter removed
03/24/09 1st PSA blood draw, < 0.1% "undetectable"

current status: 1 pad/day, dry overnight; however, total ED


mountain top high
Regular Member


Date Joined Mar 2009
Total Posts : 22
   Posted 5/11/2009 7:45 PM (GMT -6)   

According to this site

http://www.acupuncture.com/newsletters/m_nov05/main2.htm

they don't even put the needles into the penis when giving you acupuncture for ED. I haven't tried it for my ED (yet...) but my wife went to an acupuncturist last fall after 30 years of debilitating migraines. She was skeptical about acupuncture and had been seeing one of the top 3 headache neurologists in the region for a few years, who gave her meds that make her groggy and don't always work. After just three acupuncture sessions she was headache free for the first time in her adult life. She did a total of about 6 or 7 sessions at $70 apiece (by comparison her headache meds cost us almost two thousand a year with insurance).


Mountain Top High, Age 43
PSA 1.6 (2006), 1.9 (2007), 6.0 (6/2008), 3.9 (7/2008 after 30-day Cipro course)
8/08 biopsy--high grade PIN
11/08 biopsy--Dx (age 43), Gleason 7 (3+4), T1c
Da Vinci RP 2/9/09 (Dr. Abaza, Head of Robotic Uro, James Cancer Center @ Ohio State)
Path--PCa 9%, 39.5 grams, T2c, contained in capsule, margins & lymph nodes clear
Catheter 1 week, no nighttime incontinence
Through 6 wks out: 4-5 male pads/day; 7-11 weeks 1-2 pads/day with regular ab/core exercises; since 11 weeks one mini-pad/day
Complete ED, pump twice daily, fought with insurance for Viagra, ordered from alldaychemist instead, 4/23/09 started 100mg nightly, then insurance covered it


Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 5/11/2009 8:38 PM (GMT -6)   
Dan
Please keep us posted. So much of this stuff is grassroots based and the medical community follows.
Let us know how it progresses.
Paul
46 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 nine months.
Pad free on March 14 - (10 weeks.) Never a problem since.
ED - Took 100mg viagra every night. for several months
Totally usable erections at 10 weeks, which disappeared over the course of a month or two.
ED bounce is what they call it. Now, at one year, ED is fine with viagra.
One year PSA - undectable!


Mavica
Regular Member


Date Joined Jun 2008
Total Posts : 407
   Posted 5/13/2009 11:10 AM (GMT -6)   
hb2006 said...
I don't think MUSE is prescribed that much anymore. It doesn't have a high success rate, only works with 35% of those who try it. It didn't work for me and gave me the alprostadil pain.

The Trimix gel will probably work but is expensive and you can't reduce the dosage easy the way you can with Trimix vials. I would definitely ask your doctor for Trimix, or Caverject or Edex. All three will most likely give you an erection but the Caverject and Edex have the associated pain.

I'm on a Cialis/MUSE regimine and it's the same one my Urologist/Surgeon prescribes for most of his da Vinci patients because he says it shows the best results of the various treatments he's tried.  Each of us is different, though, and I recognize that what works for one of us isn't a guarantee it'll work for us all.   MUSE is widely used here in Chicago, though - according to what my pharmacist tells me.  I use the MUSE without side-effects, including pain of any sort.
 
My Urologist explained to me that most of his patients do not see much improvement with ED until after the one year or one and a half year post-op point.  I'm at the 7 month post-op point and last night, for the first time since the surgery, I achieved an erection about 90% of what I'd have had pre-op - after taking the Cialis/MUSE - and this happened quite suddenly and without manual stimulation.  Whether this is a "fluke" or a signal of better things to come . . . time will tell.  I've been taking the Cialis/MUSE about once a week - even though the Urologist prescribed it 3x/wk.  The Urologist has cautioned me, though, that I should observe the prescribed regimine because, he says, either you "use it" or you're going to "lose it" or lose hope of some sense of normalcy being achieved in the future. 
 
 

Age:  59 (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

 

New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, May 24, 2018 2:25 AM (GMT -6)
There are a total of 2,965,511 posts in 325,242 threads.
View Active Threads


Who's Online
This forum has 162968 registered members. Please welcome our newest member, steve-d.
241 Guest(s), 2 Registered Member(s) are currently online.  Details
abb, steve-d