My path from RP, ED and Using Trimix

I had my RP over one year ago and I would like to revisit with you my path to the use of Trimix for those that might benefit from it.

My RP went well, my Uro was also my Surgeon and I am very pleased with my outcome.

The only part that I would change would be my education to dealing with the typical ED issues that most have after RP.

I wish I knew early on what I know now about ED rehab, this is my attempt to try and help my fellow PC brothers to maybe make earlier decisions.

It seems that some Uro's and surgeons are not very open about ED rehab and don't really talk about it. They don't seem to understand how important it is to us in keeping our male sexuality intact.

My Uro did not even bring ED rehab up until I started asking questions because of the information I was starting to get from these very important sites I have gotten involved with.

After telling him about my concerns, he finally gave me some ED Drug samples and said to take one every week to help with rehab. I also asked him about a VED and he said that might help also.

I ended up purchasing a VED and used it for a while but found it to be quit a process to use and not much fun. In my readings I was hearing, "use it or lose it" !!!!

I was over six months out from my RP and had an appointment with my Uro when I brought up the idea of injections, nothing else was working. I told him how I felt and that I wanted to try that approach and he said ok. He wanted me to make another appointment and then come in for a trial injection to see how it worked.

The next week, I went in and he explained the procedure, he injected a small amount of trimix to see how I reacted and WoW, it worked !!!! I was elated at the idea of actually being back in control of my ability to have sex again and the rehab qualities that this might bring me.

I purchased 5 syringes from my Uro with 1 cc of trimix in each one. While reading on the boards, I could see that 1 cc of trimix could send you off to the ER, I have no idea why he would prescribe such a large starting dose !! I think the boards really saved me from this.

The small dose my Uro gave me in his office was around .2 cc and I did have a nice reaction that lasted about an hour. I decided to start myself at .25 cc and work my way up from there till I had about a 2 hour reaction which is really good for sex and rehab.

The syringes he gave me were 5 cc and had big needles. Also because of what I had been reading, I decided to get .5 cc syringes with 30 gauge needles. The smaller size syringes gave me really accurate control of my dose and the small needles totally eliminated any pinch feeling I was getting from the larger needles. No pain and accurate control of your dose is really a good thing.

I slowly worked my way up to .5 cc keeping track of my dose, date and site of the injection. I was injecting 3 times per week and unfortunatley did not have a partner to try this out on so I just chocked it up to rehab.

i have now been using trimix since December, had great sex with a gal 4 times, have proven to myself that having a 2 hr woody can be very productive having sex and for its physical rehab qualities.

If I was to do this all over again, I would get started on trimix as soon as possible after RP, would start out with the proper syringe needle combination for accurate control of dose and eliminating any pain from injection and would inject 3 times per week with or without a sex partner.

You might need to challenge your Doctor about all this and take control !!! This is not at all a mystery to me anymore and it was in the beginning.

From my personal experience and from everything I am reading, there is nothing wrong with this approach, in fact, it should be the standard, not the exception. You should not have to pull this info out of your Doctor nor feel funny asking about it. Be forward, be strong and take control !!

For us guy's, this is a very big mental and physical challenge that we all need to take control of and it can be done.

Hope this helps some of you make the decision to get with it, you have nothing to loose other than your own sexual well being which was really important to me.

Cheers, and here's to harder days ahead for you that jump on to the Trimix wagon.

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PSA: 5/05-2.008, 12/08-2.87, 2/11-4.357
3/11- 12 needle biopsy, 1 core positive GS 3+3
5/3/11- RP performed, tumor volume 1cc, pT2c all margins and lymph nodes negative
PSA: 8/1/11-.06, 10/26/11-.16, 10/31/11-.17, 10/31/11-.19
11/24/11- Started for 22 days
PSA: 12/16/11- .154 Stopped Avodart
12/22/11 Started Trimix
PSA: 3/12/12- .157
PSA: 6/12/12- < .1
Age 61

Post Edited (trimix) : 7/8/2012 11:08:20 AM (GMT-6)

Thanks, trimix.

I will call my uro next week to talk about this.

<rant>

I am just dumbfounded that urologists would not bring this up. It adds fuel to my fire in regards to modern medicine and how they treat symptoms but often fail to treat/heal the whole person. So d*mned myopic! I blame the medical schools, really, in the way they teach people to be this way. Very little time spent on the whole picture and practically none on good nutrition. Amazing!

</rant>

Anyway, I'm glad it worked for you. You gave me lots of good additional info - thanks again!

Ted

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Age 57
PSA 2/2012: 5.5
DRE: nodule on left side of prostate
Biopsy: 3 of 6 cores positive
Gleason score: 4+4
Pre Op CT Scan & Bone Scan clean
RRP: 6/13/2012
Post Op Pathology: all margins clean, Gleason Score 4+5, Seminal Vesicles not involved but tumor comes up to edge. Extension into the left nerve.
T3aN0MX
High Grade PIN
PSA at 2 weeks: 1.1
Incontinence getting better
Working on impotence

Hi Steve,

I didn't get that anyone said that most uro's aren't "concerned" about rehab and sexuality. I certainly didn't mean to imply that.

My point is that the medical industry as a whole has glaring holes in their approach to healing and total wellness and penile rehab seems to be one of those holes.

Is there a place on this board where we can take a poll on this issue? I wonder what the percentage of respondents would be to the question: Did your urologist/surgeon address penile rehabilitation in detail with you pre or post-op?

I'd be the first respondent to say no. He did mention that since I was using Viagra prior to surgery (25mg.), my chances of getting an erection post-op was not good. Oh, and the package of Rx scripts that I received pre-op was for Viagra to take starting at one month post-op. That was it - the totality of my penile rehab information.

Anyone else care to chime in? What was your discussion about penile rehab like with your urologist?

---

Age 57
PSA 2/2012: 5.5
DRE: nodule on left side of prostate
Biopsy: 3 of 6 cores positive
Gleason score: 4+4
Pre Op CT Scan & Bone Scan clean
RRP: 6/13/2012
Post Op Pathology: all margins clean, Gleason Score 4+5, Seminal Vesicles not involved but tumor comes up to edge. Extension into the left nerve.
T3aN0MX
High Grade PIN
PSA at 2 weeks: 1.1
Incontinence getting better
Working on impotence

 

I started to post a poll on this because I am also wondering how informated patients are and then could not figure out how to do it the right way, anyone want to start it ??

Here are my yes or no questions-

1) Did your Uro talk about ED before your prostate treatment ?

2) Did your Uro educated you to the real world of ED properly and the rehab options ?

3) After your prostate treatment, did your Uro follow up right away with getting you started with proper rehab ?

4) Based on your current education level of the problems and treatment for ED, do you feel your Uro did a good job for you ?

Anyone want to jump in on this ?? Thanks for your help.

Curt

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PSA: 5/05-2.008, 12/08-2.87, 2/11-4.357
3/11- 12 needle biopsy, 1 core positive GS 3+3
5/3/11- RP performed, tumor volume 1cc, pT2c all margins and lymph nodes negative
PSA: 8/1/11-.06, 10/26/11-.16, 10/31/11-.17, 10/31/11-.19
11/24/11- Started for 22 days
PSA: 12/16/11- .154 Stopped Avodart
12/22/11 Started Trimix
PSA: 3/12/12- .157
PSA: 6/12/12- < .1
Age 61

Curt – It concerns me that twice in your post you say a 2 hour erection is good for rehab.  It may be good for sex, but according to Dr. Mulhall, for rehab and penile tissue health, 90 minutes should be the maximum duration of an erection (at penetration hardness).  At 2 hours you should be taking action to bring it down.  The minimum duration is 10 minutes, the maximum is 90, and the ideal duration is anywhere in between.

 

I agree that ED should be thoroughly discussed with patients prior to treatment and that penile rehab should be standard protocol, because the longer you go without erections after surgery, the more likely you are to suffer permanent erectile tissue damage, called atrophy.  Erections are needed to bring fresh blood and oxygen into the penis which rehabilitates the erectile tissue while you are waiting for your nerves to heal.  And for the majority of men medication is needed to enable them to have the erections after surgery.  You need to have erections that are penetration hardness (60%) or better for at least 10 minutes 2 to 3 times a week.  This will maximize your ability to recover your erections back to what they were prior to surgery.  And the goal is to eventually get off of the drugs.

 

To answer your poll, yes my uro discussed ED and rehab treatments at my consult.  Furthermore, he encouraged me to see the rehab specialist at the cancer center where I was treated; which I am doing.  In fact, I was on a nightly low dose of Viagra 2 weeks before surgery.  Then after discharge from surgery I resumed the nightly 25mg with the catheter still in.  After the catheter was removed, I took 25mg 6 nights per week and 100mg once per week.  The 100mg dose was taken in an effort to get an erection.  He started me on Trimix injections 6 weeks after surgery, because I was only getting 5 out of 10.  My instructions now are to inject 2 to 3 times per week and to take the 25mg of Viagra on the other nights.

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Diagnosed Dec 2010 at age 53
09/2010 PSA 4.8
11/2010 PSA 5.1
11/2010 PSA 5.3 after antibiotics
12/2010 Biopsy: 50% in 1 of 12 cores, PIN, G6, T1c
03/2011 PSA 5.6
06/2011 RALP negative margins, G6, pT2b, PNI
09/2011 PSA < 0.05
12/2011 PSA < 0.05
06/2012 PSA < 0.05

Hi Tigerfan63- Let me be a little more detailed about my 2 hr comment.

My erections start out very strong and then start to fade away after about 45-60 min then move into a partial that is eventually totally gone by another 45-60 min. Some guy's might notice that willie is more plump after the sex quality erection is gone and this is what I am talking about.

By no means do I have a strong erection for 2 hrs, I do agree that would really be pushing it.

I have also noticed that the quality of my erection varies with position and stimulation.

I know that during my erection period, blood is flowing in and out many times until it is all over.

Hope this more accurately explains what is happening to me, every guy will be a little different with how they react to trimix.

Cheers,

Curt

---

PSA: 5/05-2.008, 12/08-2.87, 2/11-4.357
3/11- 12 needle biopsy, 1 core positive GS 3+3
5/3/11- RP performed, tumor volume 1cc, pT2c all margins and lymph nodes negative
PSA: 8/1/11-.06, 10/26/11-.16, 10/31/11-.17, 10/31/11-.19
11/24/11- Started for 22 days
PSA: 12/16/11- .154 Stopped Avodart
12/22/11 Started Trimix
PSA: 3/12/12- .157
PSA: 6/12/12- < .1
Age 61

Post Edited (trimix) : 7/8/2012 5:28:55 PM (GMT-6)

Boogee – I have never been on HT, and certainly someone who has experience will chime in, but Trimix is an initiator of erections; it causes you to have an erection. So I would think it would work for your husband – but obviously you should talk to your doctor.

Pills like Viagra, Cialis, or Levitra, on the other hand are facilitators; they make conditions favorable to allow you to have an erection.

Trimix gets results for over 90% of men and is very effective once you get the dose right. It just works. However, I do not think it would help his desire – except that seeing the response would be encouraging in itself.

Good Luck
~

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Diagnosed Dec 2010 at age 53
09/2010 PSA 4.8
11/2010 PSA 5.1
11/2010 PSA 5.3 after antibiotics
12/2010 Biopsy: 50% in 1 of 12 cores, PIN, G6, T1c
03/2011 PSA 5.6
06/2011 RALP negative margins, G6, pT2b, PNI
09/2011 PSA < 0.05
12/2011 PSA < 0.05
06/2012 PSA < 0.05

Curt – I just don’t want anyone to get the wrong idea about 2 hour long erections; thanks for clarifying your comment. Let me reiterate to be clear – according to Dr. Mulhall:

The maximum duration of a penetration hard erection should be 90 minutes.
For rehab purposes the minimum duration should be 10 minutes.

When the penis gets to penetration hardness the valve mechanism is closed, this stops the flow of fresh blood which is what deprives the penis of oxygen. If it stays in this condition too long, the lack of oxygen kills erectile tissue similar to the way a heart attack kills heart muscle. As most of us know, this is what priapism is. Of course it takes a penetration hard erection of well over 4 hours for tissue to start dying.

---

Diagnosed Dec 2010 at age 53
09/2010 PSA 4.8
11/2010 PSA 5.1
11/2010 PSA 5.3 after antibiotics
12/2010 Biopsy: 50% in 1 of 12 cores, PIN, G6, T1c
03/2011 PSA 5.6
06/2011 RALP negative margins, G6, pT2b, PNI
09/2011 PSA < 0.05
12/2011 PSA < 0.05
06/2012 PSA < 0.05

Hi GCGWI- Your post confirms what I feel is happening to much !!! The Doc's should start everyone out on an agressive rehab program, clearly presented, step by step without waiting to long. I just don't see that they understand the scope of what we go through and what to do about it.

I am sure some Doc's are taking care of this properly but I am also hearing stories like your's a lot :-(

I feel that these forums are more help than what some Doc's are offering.

Thanks everyone for your input and participation, this attitude is changing lives for our brothers

Cheers,

Curt

---

PSA: 5/05-2.008, 12/08-2.87, 2/11-4.357
3/11- 12 needle biopsy, 1 core positive GS 3+3
5/3/11- RP performed, tumor volume 1cc, pT2c all margins and lymph nodes negative
PSA: 8/1/11-.06, 10/26/11-.16, 10/31/11-.17, 10/31/11-.19
11/24/11- Started for 22 days
PSA: 12/16/11- .154 Stopped Avodart
12/22/11 Started Trimix
PSA: 3/12/12- .157
PSA: 6/12/12- < .1
Age 61

BOOGEE,

I have total ED. I use a VED. I tried trimix for a while. But, after two trips to the ER (and almost a third trip) I have decided to give up trimix for now. The VED works fine for me, although a lot of guys do not like VEDs. (I assume you are aware that erections are not necessary for orgasms.)

As far as libido goes, for me it is mind over matter. Despite the HT, I still enjoy sex. It feels good. I respond easily, and often! So, for me, I am motivated to engage in sex. I don't view it as a burden or something I have to force myself into.

SC

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Age 52; dx at 50, PSA 54.9
open RP, 2010; removed 14 lymph nodes
Pathology report: T3bN0MX, SVI, neg margin, Gleason 9
HT: ADT2, 36 months: 16 months left
Finished Adjuvant RT, 75.6 Gy, 9/11
Finished Adjuvant Taxotere (6 x 60 mg/m2), 6/12
Latest PSA <0.03, T=11