Prostate Cancer Support Group

Hello Men,

I had RRP in Sept. (my 90 day followup one month delayed due to holidays). PSA was 0.03, or 'undetectable' according to my surgeon. Great relief. My continence is almost fully returned, just a couple little leaks most days. Only wear a pad occasionally.

My lingering problem is total ED with one nerve spared. I have been on 5mg cialis daily for 3 months and vacuum pumping one session every day, with 3 pump-ups per session. Still nothing, not even with a 100mg viagra. No luck with the pump for intercourse either. Altho with 2 rings it stays firm for manual manipulation, it deflates just enough to prevent penetration. The resistance just pushes the blood back out I guess. Very exasperating! We are considering injections to restore that closeness that we miss so much. I have 2 questions that I hope men further out from RRP can provide some insight on.

1. Has anyone with one nerve spared been dormant at 4 months, but had some success down the road? If so could you provide a chronology and current situation?

2. For men taking injections, how effective are they? How painful are they? How much do they cost? Did your insurance cover them? BC/BS wouldn't even pay a penny toward my cialis so I'm sure they won't cover injections.

I know I am blessed to have seemingly beaten cancer and mostly regained my continence, and my heart and prayers go out to men still struggling with this awful disease. I know my problem is small compared to many other men, but I am hoping to return to useful sexual capability and would greatly appreciate any input you can provide. Thanks so much.

Greywolf

Graywolf,

Here's a great youtube video all about penile rehab. If you watch this you will wonder why you weren't given this info before surgery. Here's the link

http://www.mdjunction.com/forums/prostate-cancer- discussions/general-support/3385681-good-4-month-checkup- but-2-ed-questions#3385681

At 10 months post op I am beginning to have some response to ED medication, but it isn't consistent. Some days I'll have a response other days I won't.

It takes on average 18-24 months for nerve bundles to heal, so you are still early in the process.

I went for injections. They sound worse then they are. Some men prefer to inject, others prefer their partners inject, I found I preferred an auto injector.

If your Urologist doesn't have a teaching program in their practice find one who does. You shouldn't simply get a prescription and learn on your own with a sheet of instructions.

I had very good success with injections at the beginning. Then I began to need higher and higher doses. My experience here is very unusual. For most men this doesn't happen, you find a dose that works and you stay with it.

I have an appointment at UCSF in the middle of Feb to try a different medication. My insurance doesn't cover it. It cost about $75 for meds that last about 3-6 months depending upon how frequently you inject.

Injecting has two added benefits. It prevents venous leak, and it speeds up the recovery time for the nerve bundles. Watch this video, and let me know what you think.

Rick

Could you please repost the link to the video? what is listed seems to call the greywolf post.

Greywolf

Thanks for the post, I am one month behind you (RPP eary October) and am having similar experiences; I still use a pad a day for occasional drops; I have not dared to go without pads; I know I need them in the gym and doing yoga and if I wait too long and let my bladder get too full. I am not as diligent with my Kegels as I was initially....

I started on Levitra, moved to Viagra and still get no response; I do notice that they help me maintain an erection with the pump bit longer but not enough to be useful. I've discussed using injections with my doctor next, Rick has encouraged me there too, no idea yet about insurance coverage. I'll set up an appointment with him. I have tried vitamin B-12 as its suppose to help in nerve recovery, no idea if its helped. Lately I do feel an occasional sensation in the area where my prostate was and hope that its the nerves waking up, but who knows. The good news PSA level undetectable and down to <.01 since the surgery 3 months ago.

Post edited by: paperplane, at: 01/16/2012 10:20 PM

Here's the link:

http://www.youtube.com/watch?v=ie8NkOu2VNA

Greywolf,

I had surgery in November and had my 3-month followup last week (PSA undetectable). My surgeon had prescribed a pump and, at my request, Cialis when the catheter was removed about 12 days after surgery. I didn't like using the pump at all (nothing natural or lasting about the "erections"), and the Cialis had no effect. I got frustrated very quickly and decided to see a urologist who specializes in penile rehab. He put me on a daily dose of Cialis (which I pay for out of pocket, while insurance covers 4 high-dose Cialis pills monthly). He also prescribed a "Trimix" solution (prostaglandin, papaverine, and phentalomine) for injecting and taught me how to inject. I started giving myself injections in December, and I've been very pleased with the results. The injections are mostly painless (sometimes a slight pinch), and the medicine works in a matter of minutes. Erections are full and firm just like they used to be. It has been a great relief for me to feel "normal" while I wait for the nerves to heal from the surgery.

During my recent followup with my surgeon, I asked him why he didn't offer injections back when the catheter was removed. He said that most men are more comfortable using a pump. He also said that had I expressed dissatisfaction with the pump at this visit, he would have referred me to a urologist who specializes in penile rehab. I told him that waiting 3 months to get that referral would have been unbearable for me. He said that most men are focused on urinary incontinence during the early recovery period and aren't as concerned about erectile function. I gently tried to point out to him that what works for "most men" doesn't necessarily work for ALL men. He was apologetic and very supportive of my having seen another urologist, and he said that he would take a back seat to whatever that doctor recommended for me.

As far as the "Trimix" is concerned, it has to be prepared by a pharmacy that specializes in "compounding." The pharmacy prepares the mixture once every 40 days (because its potency diminishes over time) and ships it to me overnight in an insulated bag that is cooled by one of those freezable gelpacks. I, in turn, have to keep the medicine in the refrigerator. The syringes that I use are the same as used by diabetics (very short and very thin needles). The pharmacy supplies me with the syringes as well. The initial out-of-pocket cost to me was $50, but the rest has been covered by my insurance.

My understanding is that pure prostaglandin is also commonly used for injections, but from what I've read, prostaglandin alone can cause pain (an aching feeling) in the penis. "Trimix" avoids this side effect by using a minimal amount of prostaglandin in conjunction with two other vasodilators. The downside of "Trimix" is, of course, the need to keep the solution refrigerated.

I hope this helps. Good luck to you!

Post edited by: DVW, at: 03/08/2012 10:15 AM

DVW

I started injecting 4 months post surgery. I had the opposite experience that you described. I found bi-mix tolerable. Tri-mix was extremely painful.

I kept bi-mix in the freezer. Not sure what Insurance paid but a 6 month supply runs about $75.

Rick,

The urologist that I saw had 14 different Trimix formulations (different amounts of each of the three ingredients), so it's quite possible that one formulation would produce pain (perhaps because it has more prostaglandin?) while another won't. Fortunately for me, the 1 formulation out of the 14 that he chose for me works quite well.

In any event, I'm glad that you found a bimix that was at least tolerable. So putting it in the freezer didn't end up freezing the medication?

It does freeze the medication, but that's ok. It stays better frozen. It defrosts very quickly.

Sadly I stopped responding to bi-mix, and after 1 injection of tri-mix, I was through. I won't go through that pain a second time, and it was a dose expected to give me an erection. It didn't work.

I'm beginning to have some response to ED meds, so my injecting days are over, which was a medical mystery. My nerve bundles are beginning to heal. What's expected was I'd need less medication to obtain an erection. Instead the opposite began to happen. It took more and more, until a full needle gave me zero response.

Glad you found a med that works. Not too many men on the forum took the penile injection route. So it's good to have on board to share your experiences.

Yes, I'm thankful that the injection works because I'm getting basically no response from the Cialis right now, but that's to be expected. If I didn't use the injections, I'd probably be going out of my mind!

I feel the same way. Even with my libido at it's lowest levels of my life (before biopsy extending to 1 year post surgery) injections were vital to me. I'm surprised how many men wait 18-24 months, suffering from ED, hating every minute, experiencing much marital tension, but will not consider injecting. The thought of injecting is much worse than the reality of injecting.