Question for those with experience with injections for ED

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Rose - 26 Apr 2004 00:52 GMT

My husband of 33 yrs., age 55, had his prostate removed Oct. 22, 2003.
I overheard the surgeon tell my husband the day after the surgery
that the prostate pulled away easily, and he hoped that would work
out for him. One month later the surgeon said that the cancer had
escaped the capsule, but that he had gotten clean margins. The first
PSA test was undetectible. The next PSA test is coming up in June.

We have been searching for an effective treatment for the ED resulting
from the surgery. After trying Viagra, Levitra, and Cialis, my
husband was instructed in giving himself injections of Caverject. Of
course, it took many injections to work up to 40 micrograms. Some
injections produced erections which looked sufficient for intercourse,
but none have been sufficient. So recently my husband asked his ED
specialist about trimix injections. The ED specialist said that he
didn't think that it would work much better. However, I read that the
combination of three ingredients in a mix is more effective than the
single ingredient alone.

I was told that some urologists do not prescribe trimix because the
combination of 3 ingredients in a mix hasn't been approved for
injecting by the FDA. However, other urologists do prescribe it, and
I was given the name of one which does prescribe it; but he is 130
miles from our home.

Anyone have personal experience with these drugs?

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MH - 26 Apr 2004 01:40 GMT

Hi, Rose.....

I tried Caverject first. I was allergic to the prostaglandin in it, and it
was very painful. Afterwards, I tried just Papaverine. The erections
happened, but it was taking a pretty large dose. Then I tried Bi-Mix, which
was Papaverine and Phentolamine. I went to my GP and told him that I had
checked this out on the Web and had found people who were using these
injections. (I, too, lived 140 miles from my urologist). The GP called a
compounding pharmacy in a nearby city and asked the pharmacist for the
formula for the Bi-Mix... then wrote me a prescription for it. It worked
much better than the Papaverine, alone.

Hope this helps a bit!

MikeH

> My husband of 33 yrs., age 55, had his prostate removed Oct. 22, 2003.
> I overheard the surgeon tell my husband the day after the surgery
[quoted text clipped - 21 lines]
>
> Anyone have personal experience with these drugs?

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Steve Kramer - 26 Apr 2004 01:49 GMT

Welcome back, Rose. I have experience only with Caverject and Viagra.
Viagra never did do it for me. Caverject didn't work well enough for the
bother. But, 2 years and 6 months after my RRP, I got an erection. And I
had a few during a two-month stretch (no pun intended) and then I went on
Lupron. Then, two nights in a row, even though on Lupron, I had erections a
couple of months ago.

I have a couple points to make regarding your husband. First, to not have
an erection in the first six months is not exactly unusual. Second, I
firmly believe that my first erection was due to practicing with a pump.
Regardless as to whether it fits into foreplay, just pumping up seemed to
bring my dead member to life. I would recommend an aggressive program of
pumping the penis, a slow mehodical approach to medical inducers, and a
whole bunch of patience.

Signature

Prostate Cancer Survivor (so far), not a doctor
PSA 16 10/17/2000 @ 46
Biopsy 11/01/2000 G7 (3+4), T2c
RRP 12/15/2000
PSA .1 .1 .1 .3 .4 .8
EBRT 05-07/2002 @ 47
PSA .3 .2 .2 .2 .3
Erection 05/12/2003 @ 48
HTbegins 07/21/2003 @ 48
PSA .1
Lupron 7/03, 8/03, 12/03

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c palmer - 26 Apr 2004 02:25 GMT

rose said -

I overheard the surgeon tell my husband the day after the surgery
that the prostate pulled away easily,
-----------------

hi rose - that news is really good news. you see when prostate cancer
gets to the nerves, it attaches itself to the nerve, and it has to
either be striped off or picked off. if the prostate tissue just slide
off, that is a good sign.

but, if he had any ED before, then it will be worse afterwards. six
months is still pretty soon, but just the fact that he's responding is
good news too and who knows what the next few months will bring.

hope this helps,

~ curtis

knowledge is power - growing old is mandatory - growing wise is optional

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MrBill - 26 Apr 2004 16:01 GMT

We were fortunate to have as a speaker at our UsToo meeting last week
the surgeon that performed my robotic LRP. In his slide presentation
was a graph showing the recovery of ED. 0-6 months was the steepest
gain, then 6-24 months showed increases of recovery then a slow taper
on out to 48 months. After that it was pretty flat. He said a
majority recover around 8 months. This was kind of a wakeup call for
me as to how long it can take these nerves to recover.

Nerve tissue is probably the slowest to mend and repair. I have had a
personal experiece with this. When I was 19 years old I severed a
nerve in my jaw, and it took 25 years for it to mend.

Stay positive and good luck,

MrBill
age at diagnosis 48
PSA 1.4
Gleason 3+3=6
T2a
robotic RRP 12/15/03
PSA 4/2 = <.1
age 49

> rose said -
>
[quoted text clipped - 16 lines]
>
> knowledge is power - growing old is mandatory - growing wise is optional

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Steve Kramer - 26 Apr 2004 21:51 GMT

"Our" group (actually, Robert Young's group) is having a speaker on Robotic
this Wednesday in Blue Ash (a city just north of Cincinnati). I think the
closest NG patients are in Louisville, but if you're a lurker that is
interested, I got the time and address.

Signature

> We were fortunate to have as a speaker at our UsToo meeting last week
> the surgeon that performed my robotic LRP. In his slide presentation
[quoted text clipped - 39 lines]
> >
> > knowledge is power - growing old is mandatory - growing wise is optional

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Leonard Evens - 26 Apr 2004 20:04 GMT

I agree with the others that it is still early days. He should keep
trying Viagra or one of the other drugs. Often they don't work at
first, but later they do. I never tried injections, but my wife and I
used a pump for 18 months until my erections started to return, after
which Viagra started to work. You should look into the possible use of
a pump, since it does work in the overwhelming majority of cases.

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Alan Meyer - 27 Apr 2004 23:16 GMT

...

> I was told that some urologists do not prescribe trimix because the
> combination of 3 ingredients in a mix hasn't been approved for
[quoted text clipped - 3 lines]
>
> Anyone have personal experience with these drugs?

I have no experience with the drugs, but my general philosophy
is - the fewer drugs the better.

I would certainly try a pump before I got into more drugs. The
pump is non-invasive. If worked up to slowly and gradually it
shouldn't damage anything. It doesn't require painful injections.
In the long run it should cost less.

Safer, less painful, cheaper. Looks like it's worth trying to me.

Also, although I haven't seen this discussed on the newsgroup,
I think psychological techniques maybe of some help. So-called
"performance anxiety" can be a problem for a man when he's
trying hard and is constantly distracting himself by thinking about
whether his body is doing what he wants it to do instead of
thinking about sex.

Maybe watch a pornographic video together. Maybe take it slow
and spend a lot of time on it. Maybe new lingerie. Combine that
with a pump and, who knows? It might be fun even if it doesn't
lead to the maximum possible outcome, and might work better
over time.

I also found that focusing on my wife and getting her excited was
more of a turn-on for me than anything else. Even with Lupron
that got it up for me.

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Rose - 29 Apr 2004 17:26 GMT

> We have been searching for an effective treatment for the ED resulting
> from the surgery. After trying Viagra, Levitra, and Cialis, my
[quoted text clipped - 4 lines]
> specialist about trimix injections. The ED specialist said that he
> didn't think that it would work much better.

I do appreciate all of the suggestions and support. Yesterday(after a
bit of encouragement) my husband called his ED specialist to let him
know that we are still not having success. The doctor said that he
will schedule a doppler test; I am very hopeful that some
investigation may reveal something useful. If nothing else, we will
at least have another piece of the puzzle.

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