Questions about ED injections

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Cajun Jeff
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Date Joined Mar 2009
Total Posts : 4112
   Posted 7/16/2009 6:02 PM (GMT -6)   
I have an appointment in 2 wks to start injections.  What should I ask.  I am a bit frightend I am just shy of 10months post surgery.  The Blue pill and cialis don't do enough for penitartion.  I refuse to pay $200 for 6 MUSE doses.  I am still using VED.  Any advise is appriciated.  If you don';t want to post publicly my e-mail is active.  Thanks again.
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,


Tamu
Veteran Member


Date Joined Oct 2006
Total Posts : 626
   Posted 7/16/2009 7:08 PM (GMT -6)   

First thing to understand is how to give yourself injections.  There are plenty of diagrams you can get off the Internet but your urologist or his CNP should explain in detail and showing you how.  In fact, you should receive an injection when you are there so the initial reaction to the medication can be judged.  Second, understand the different medications you can use and why some men use different ones.  Some are compounded but cost less then other branded ones.  Third, ask about the time length of the erection.  Most urologists will tell you from about 45 minutes to an hour.  In my case to get an erection firm enough my erection last about three hours.  When using injections sex has to be planned as you just do not get up and go somewhere right away.  Fourth, ask about the types of injectors.  There are the traditional syringes which I use but other men who have some fear of the needle use auto injectors.  Last, ask about how often you can inject.  My urologist told me three times a week which seems to be typical.  There are the conditions of priapism and Peyronies you need to understand.

Tamu   


Diagnosed 7/6/06, 1 of 10 core samples, 40%,Stage T1c, Gleason 3+3
Da Vinci on 11/01/06, Catheter out on 11/13/06
56 Years Old
Post Op Path, Gleason 3+3, Approx. 5% of prostate involved
Prostate Confined, margins clear
Undetectable PSA on 12/18/06, 6/25/07, 1/8/08
No more pads as of 1/13/07
Began injections in April '07
 


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2460
   Posted 7/16/2009 7:59 PM (GMT -6)   
Jeff,
I've been using trimix for the last 2 months. I started with 2 ml and didn't get a good enough erection. I kept trying higher doses (not the same day) until I reached 3.5 which has worked for me. Every one is different, so you need to find out what dosage works for you. I use the pump to get an erection and then inject myself. I need stimulation after the injection and I also use the pump as well. The injection itself is painless and I have very little pain afterwords. The erection lasts a little less than an hour.
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
Bilateral 10-20% involved
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


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4112
   Posted 7/16/2009 8:38 PM (GMT -6)   
ED C. Does the Dr. just decide what to inject are do I have a converstaion about different medications to use. From what I have read Tri-Mix seems to have some advantages. One little or not pain form the medication and point 2 that Tri-Mix was less expensive. Is this info correct?

Thanks again.
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,


Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 7/16/2009 9:09 PM (GMT -6)   
The doctor will likely have their own ideas about how much and what to inject. The key thing to take from your first meeting is to learn how to prepare and make that first injection.

Trimix is much cheaper than the brand-name injections such as Caverject. It's also much more effective than MUSE. I use bimix which is cheaper again -- only two ingredients instead of three. Some men report aching from trimix, but I believe that trimix also gives better erections. For me bimix works well, so I have no reason to change.
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 : 4112
   Posted 7/16/2009 10:18 PM (GMT -6)   
Thanks for the info.
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,


Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4840
   Posted 7/17/2009 6:25 AM (GMT -6)   

ED pills didn't hardly do anything for me.

Doc hit me with 1ml of Tri-Mix and BOING...worked like a charm yeah   Your mileage may be different.


Age 54   - 5'11"   205lbs
Overall Heath Condition - Good
PSA - July 2007 & Jan 2008 -> 1.3
Biopsy - 03/04/08 -> Gleason 6 
06/25/08 - Da Vinci robotic laparoscopy
05/14/09  - 4th Quarter PSA -> less then .01
Surgeon - Keith A. Waguespack, M.D.


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1464
   Posted 7/17/2009 11:50 AM (GMT -6)   
I have used Trimix for 2 years with excellent results. I only use about .03 ml however. My syringes are only .5 ml and the vial only contains 5 ml. I can't even imagine what a 2 ml injection would do to me. My first injection was .1 ml and lasted 6 1/2 hours so I cut it in half. Still too much to I cut in half again and that does the job just fine.
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 + .04 cc Trimix = Excellent Results
PSAs from 1/3/07 - 7/17/08 0.00.
PSA on 1/28/09 - 0.02
Lung cancer dxed on 5/16/08. Surgery on 6/25/08 T1N1M0 - Stage IIA Finished 4 cycles of chemo on 11/7/08.
CT scans on 12/2/08 & 2/25/09 - in remission!!!
Next scan in June 09.
Biker90's Journey
http://www.caringbridge.org/visit/jimrobinson
"Patience is essential, attitude is everything."


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4112
   Posted 7/17/2009 2:22 PM (GMT -6)   
Did your Dr. Give you a choice of meds are did they start you off on tri-mix?
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,


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 7/17/2009 3:49 PM (GMT -6)   
Jeff, unless you are going to an ED specialist, it is probably unlikely that the doc will have Trimix, and maybe not even Bimix for trial.  The Caverject has a long shelf life, the Bimix has less so, but still good, and the Trimix has the shortest shelf life, so most doc's don't keep it in supply, plus it has to be specially prepared in a special pharmacy.  They usually want to start off with alprostadil (Caverject) in some form.  That's the one that usually gives the pain and aching, if it is going to affect the user.  Normally, Trimix and Bimix are ordered from Compounding Pharmacy.  I'll post a link to  the list of the ones our guys use at the end. The Caverject Impluse system is off the market still, I think, it was due back this summer sometime, but it costs around $40 a shot, the powder form of the same, reconstituted with sterile water is available, and costs me $34 per 1ml vial and the packaging says to use one dose and throw away the remainder.  Either way, it's expensive. 
 
Most docs have a set formula to start off with for the initial try, and then adjust from there.  No matter what happens the first time, make sure you discuss the use of Trimix and Bimix with your doc, and see if you can come away with a prescription for one or both.  The Trimix costs $94, including cold pack shipping, and Bimix costs $57 for a 5 ml. bottle.  You know the standard formulas for them, don't you?  Bimix is 30mg papaverine/1mg phentolmine per ml, Trimix is the same with the addition of either 10mcg or 20mcg of alprostadil.  The average dose of Trimix seems to be around .08 to .1ml and Bimix .2ml to .4ml.(that's .1ml to 10 units on an insulin syringe.)   There's some special techniques for guys whose veinous valve function hasn't recovered yet, if you need to know them, just ask. I think I may have shared it with you earlier. 
 
Compounding Pharmacies:  http://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- 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

Post Edited (James C.) : 7/17/2009 2:52:02 PM (GMT-6)


Tamu
Veteran Member


Date Joined Oct 2006
Total Posts : 626
   Posted 7/18/2009 10:11 AM (GMT -6)   
Jeff,
As already mentioned odds are you will be started with Caverjet. In my case I immediately had aching and an erection for three hours after the injection in my urologist's office. I had to drive home about two hours and when I got there I called back and told them to give me something else. I then went with Bimix and used it for over a year with no pain and about a two to three hour erection. The erection with the Bimix just seemed to be a little less firm then my natural erections were. I had read a post on here where one of the guys had a customized Trimix compounded with 2.5 mg of Alpostradil instead of the 10 mg. I got a prescription for Trimix with that formulation and have been using it now for several months. Trimix does have to be refrigerated. I am still working on the right dosage but when I tried .1 ml it was too much and I had an erection for about 5 hours. I am now down to .05 and that seems about right. I am going to buy some 0.5 syringes as what I have now is 1.0 cc syringes. By the way, I take an allergy pill after sex and it seems to help the erection go down quicker. My cost is the same as what James C. said.

Tamu
Diagnosed 7/6/06, 1 of 10 core samples, 40%,Stage T1c, Gleason 3+3
Da Vinci on 11/01/06, Catheter out on 11/13/06
56 Years Old
Post Op Path, Gleason 3+3, Approx. 5% of prostate involved
Prostate Confined, margins clear
Undetectable PSA on 12/18/06, 6/25/07, 1/8/08
No more pads as of 1/13/07
Began injections in April '07
 


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4112
   Posted 7/18/2009 12:39 PM (GMT -6)   
This is exactly what I needed to know. You guys are GREAT! What can I say.

Thanks
Jeff
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,


stoshb
New Member


Date Joined Jul 2009
Total Posts : 4
   Posted 7/18/2009 2:11 PM (GMT -6)   
New here after having Davinci Sept 08, easy to get over surgery problems, no incontinance issues.
 
BUT Sex is history.
 
Cialais and Viagra do nothing. 
 
Pump qualifies as medival torture device.  It does get me to grow, but there is no feelings.
 
On very seperated occassions I get the early morning erection.  But no rhyme or reason.
 
My biggest complaint is that my penis no longer transmits any feelings of pleasure.  I can feel touch on the skin, but its about as exciting (for me) as touching my big toe.  If I use the pump and ring I can keep it up for a few (very few) minutes, but it is about as sexual as a marble statue.
 
I have ended up bringing my wife to a climax with my hand and going to sleep thinking about sex.
 
I know the main sex organ is the brain, but its no fun when its the only one.
 
I assume I can get erections with the shot, but will this bring back the sexual feeling, or just make me look like I did when I was young?  Sounds like a lot of expense and trouble for  esthetics.
 
Appreciate feedback.
 
 
 
 
 
Age: 63 at Dx Aug 08
PSA Normal
5 cores out of 12 were positive Gleason (4+3) and (3+4)
Robotic surgery performed 9/10/08 Dr Eric Smith, Baylor Hosp Dallas
Pathology report:
Basically one half was all Gleason 4+3
One nerve bundles removed,
No sign cancer had left the prostate
continent after removing catheter
So far no detectable PSA


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 7/18/2009 2:44 PM (GMT -6)   
stoshb, first, Welcome to the Forum.  You history sounds like you are progressing normally.
 
As far as your sensation question, I understand what you are saying.  During foreplay or just cuddling, the feeling of stimulation from the brain to penis that we all are familiar with (at least I am), is missing for me.  I can feel that naughty little twinge down deep in the gut, but it goes nowhere beyond.  Where before It resulted in running out the penis and triggering an erection, that doesn't happen now.  Because of that, my erections are created by the pump or injections.  The feeling stays in the gut, but that missing whatever little space in the nerves don't allow it to continue, sadly.  As a consequence, the more familiar surface stimulation of the penis is missing, and requires a redirecting of the brain from the accustomed surface reaction to more an inner feeling.  A light finger caress across the penis head ain 't what it used to be, as you have found out.  However, as you continue and with more practice you will find your brain 'resetting' what is pleasurable to you and the sensation and intensity should continue to improve.  It just takes time, training and work to accomplish it.  Don't give up.  In case no one has told you, this is the time to cast off inhabitions and embark on an intense period of sexual stimulation, either with your partner or by yourself.  Yes, I'm speaking of lots of foreplay to you, and-yes-musterbation.  Hand, vibrator, whatever.  You got permission, as therepy, to do it as often as possible. The more sexual stimulation you can apply to your penis, will be transfered to your brain in retraining the feelings you need to have a full and satifactory sex life.  That's ben the experience of lots of guys here.   Try it... 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- 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


Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 7/18/2009 6:31 PM (GMT -6)   
I agree with James. On reflection, although the nerves we lose mainly control erections, I think we also lose some nerves that control sensation. But there can be plus factors -- for me they are that I last a lot longer, and when orgasm comes, it is longer and more intense.

I haven't found the pump very satisfactory for intercourse (my wife doesn't like the erection) but injections do work well. I don't always orgasm with my wife, but a plus factor of the injections is that erections last for two hours or so, so it is possible to finish off later.

I find that orgasm is better with an erection so I use the pump and constriction rings for musterbation.

It is a good sign that you can get erect with the pump. It does need a period of experimentation to find the techniques that work for you, and even though it might not be much fun at first, I suggest stick with it.

I find the kinds of sensations I experience with injections are quite similar to those with the pump, so based on that, I wouldn't expect yours to be much different. However we are all different in this area, so as well as experimenting with with the pump, I suggest also trying injections -- you may find as well as a better quality erection you also get improved feeling. But you will never know for sure until you try it.
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.


Tamu
Veteran Member


Date Joined Oct 2006
Total Posts : 626
   Posted 7/19/2009 8:27 AM (GMT -6)   
I also agree with James. I am now two and a half years since surgery and I can say the sensation does get better over time but it does not approach the touch sensation prior to surgery. I also find the organsms different. It may be just the lack of ejaculate. In one way the orgasms are more intense now but the feeling afterwards is not as peaceful and fulfilling as before. I guess a lot of men reach the conclusion that it is not worth it anymore and just forget about sex. I am too stubborn for that. I am presently considering penile implants. Why? To bring spontaneity back into our sex life. Most of the great sex my wife and I had prior to the surgery was spontaneous. If I can capture that again I feel my libido will pick up and a lot of things will just get better. My urologist/surgeon wanted me to wait three years before making that decision but I am close to making it now.

Tamu
Diagnosed 7/6/06, 1 of 10 core samples, 40%,Stage T1c, Gleason 3+3
Da Vinci on 11/01/06, Catheter out on 11/13/06
56 Years Old
Post Op Path, Gleason 3+3, Approx. 5% of prostate involved
Prostate Confined, margins clear
Undetectable PSA on 12/18/06, 6/25/07, 1/8/08
No more pads as of 1/13/07
Began injections in April '07
 


Mavica
Regular Member


Date Joined Jun 2008
Total Posts : 407
   Posted 7/20/2009 8:59 AM (GMT -6)   
Piano said...

Trimix is much cheaper than the brand-name injections such as Caverject. It's also much more effective than MUSE.
My Surgeon / Urologist has prescribed a Cialis / MUSE course of medication for me and I've learned that for me the MUSE injections are easy, painless and the medication combination seems to work well.  What works for one person may not work for the next, but I don't think it's valid to say one medication is definitively "much more effective" than the other - for the entire population of male patients using such treatments because if that were true the specialists would all be prescribing the same course of medication for us.  MUSE is expensive and my Blue Cross / Blue Shield insurance covers only 1/2 the cost - but I look at the expense as a short-term thing and my Surgeon / Urologist has said if I don't make the attempt to improve the ED situation now (this first year post-op) the chances of situation improving are slim.  "Use it, or lose it!" is what he tells me.  My Surgeon / Urologist hinted during my last visit that he may increase the dosage of MUSE, if I want, to see what further improvement there might be.  I accept, however, that my sex life will not return to the level of satisfaction it was pre-op and I'm okay with that . . . because removing the cancer from my body and living a longer and, overall, more satisfying life is more important to me than sex.

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

 


hb2006
Regular Member


Date Joined Nov 2008
Total Posts : 299
   Posted 7/20/2009 3:39 PM (GMT -6)   
Mavica
 
Here's what most of us have found out about MUSE. I tried it with the strongest dose, it didn't do a thing for me, except to give me the dull aching pain. MY urologist said that he rarely prescribes it anymore as his patients haven't had much success. I tried all 3 ED drugs with MUSE, same result every time.
 
You are one of the extremely lucky guys that it works for. A lot of us are pretty envious, except for the cost factor.  I did read somewhere that it only works for about 31% of the patients that try it.
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, PSA June 29, 2009 0.00
ED Status- Currently using Trimix, Levitra daily for increased blood flow.
Noctural Erections have completely returned on a nightly basis, same hardness as before.

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