Not enough response to shots

[palace01]

I am 67, had Prostate removal April 15 and next week start 7.5 weeks radiation due to cancer cells found on edges of removed prostate.
I got my Bladder control back but no fix for the ED.
Before surgery I had no problems getting strong, hard, and lengthy erections even though I had some curvature up towards the belly.
Since surgery the ED pills do nothing for me.
I have been experimenting since with injections but so far I do get some reactions but not enough for intercourse.

First I tried Edex. 20 MCG - Used Full 1.0cc(ml) for each shot.
I certainly got some hardening but not as erect as I used to and sadly not hard enough for intercourse. Also after about 20 minutes the erection went away even though the 'pressure' feelings lasted for well over an hour.

At about $75 per injection, I got even more frustrated so asked my Urologist to suggest a compounding Pharmacy.
He gave me Quad-Mix:-
1.8MG Papaverine, 0.2MG Phentelomine, 30MCG Alprostadil, 0.02MG Atropine

Using a Syringe that holds up to 100 units (or 1ml/cc) I took his advice and started with 25 units. Next I moved to 30, next to 36, and latest with 42.

I "think" I am getting better response with each increase of units but still not enough to get full erection and therefore have intercourse. Also after about 30-40 minutes the ability to get this smaller erection goes away. Luckily my wife is very understanding and able to give me dry orgasms.

Interestingly, I find that whether Edex or Quadmix, the foreplay immediately after the 5 minute initial squeezing of the injected area seems to work better if I am standing or kneeling rather than going straight to horizontal position! Neither Urologist nor Compound pharmacist can give good explanation of this - Can anybody out there? Might I have serious blood flow problems?

Based on all the information above would you suggest, continue to increase dosage? OR ask pharmacy for stronger mix? OR give up and try vaccuum or implant ?

THANKS !!!

[Andy425]

Palace: I can't give you any technical answers as to what you should do, but IMO you should wait at least a year (and you're not even done with cancer treatment yet) to see how much nerve function you get back. Do you still have one or both nerve bundles?

[palace01]

Andy, Thanks for your reply but how do I tell if I have any nerve bundles?? Surgeon never mentioned it and suggested pills first!!
When first checking surgery options (Robotic versus open) I thought that one of the Drs told me that if Viagra etc did not work at all then it meant that nerves on both sides had been damaged/stretched beyond repair ??
Thanks again

[dtwarren1942]

I used Trimix and did not get a satisfactory response until I tried 45 units. Subsequently, I was able to slowly reduce the dose until only 15 units did the trick. However, my issue is diabetes, which is not the same as prostate surgery.

[Andy425]

Andy, Thanks for your reply but how do I tell if I have any nerve bundles?? Surgeon never mentioned it and suggested pills first!!
When first checking surgery options (Robotic versus open) I thought that one of the Drs told me that if Viagra etc did not work at all then it meant that nerves on both sides had been damaged/stretched beyond repair ??
Thanks again

This is what I have learned (the hard way) but I cannot guarantee accuracy. But I think it's pretty close:

The surgeon will (or should) know if he spared either or both nerve bundles. That is one of the advantages of the robot; they are more precise (they call it "nerve-sparing") -- although my neighbor had open surgery in 2000 and they saved both sides.

From what I have read, cancer cells like nerve cells and will invade there whenever possible. So if there is evidence of prostate cancer near one of the nerve bundles (there is one on each side of the gland) they will remove the nerve bundle -- they will "go wide" -- just to be safe (that's what happened to me). However, even if they spare both sides there will still be some nerve damage.

It is pretty widely accepted that it takes one to two years for whatever amount of nerve healing and regeneration is going to happen, to happen (anywhere in the body, actually, not just with prostate surgery). And, not to make you feel any worse than you already do, if they are going to do additional radiation then there could be more nerve damage than you already have.

But don't take my word for any of this: your doctor owes you a full explanation of what has already happened, and what to expect going forward. It is your body, your life, don't hesitate to be blunt.

A reality check: My neighbor that I mentioned above -- his cancer came back, twice since 2000. He is on hormone therapy now (that's all they can do) and he is doing fine; his PSA is undetectable. But it is not really a cure.

So I guess (to me anyway) beating cancer should be the first priority.

[JimStars]

Pal,

Your reaction to Alprostadil (EDEX) and Quad-mix is a little strange because you mentioned that you had good strong hard erections before surgery.

Before surgery I had no problems getting strong, hard, and lengthy erections

That says you must have been in good cardio-vascular shape and were getting really good blood flow.

Surgery should not have changed your vascualar system all that much I would think. For injections you don't need the nerves anyways -- just good vascular flow ( and also little or no leakage). I would not think that surgery would have caused Venous Leakage to occur either. You really should be responding well to any shots.

On the tech side, if those are the correct values for your QuadMix I would say this:
#1 It is a very very weak quadmix (except for the PGE-1 portion which is actually quite high).
#2 What planet is your Pharmacist from? The formula given is no where near standard.

Maybe you should go back and ask him or your doc for a formular more like this:

Pap 30mg ... Phent 1 mg ... PGE-1 (keep the 30mcg) .. Atropine (keep same or eliminate).

In the meantime guess you just try a larger dose.

J

[palace01]

The surgeon will (or should) know if he spared either or both nerve bundles. That is one of the advantages of the robot;

Andy, although I talked to a robotic surgeon, I chose my own Urologist who did 'open', however I will certainly ask him!

So I guess (to me anyway) beating cancer should be the first priority.

That is what worries me the most - my PSA (now undetectable) was never over 2.5 even though ONE of my Gleeson numbers was a 9(rest 6 or lower)!
Good luck to you and neighbor

[palace01]

#2 What planet is your Pharmacist from? The formula given is no where near standard.

Jim, what you say makes sense. That was exactly the kind of info I was looking for. He never has given me 100% confidence even tho brochure says "only PCAB-accredited pharmacy in Fort Bend County" - Maybe the only one anyway - haha

[Andy425]

The surgeon will (or should) know if he spared either or both nerve bundles. That is one of the advantages of the robot;

Andy, although I talked to a robotic surgeon, I chose my own Urologist who did 'open', however I will certainly ask him!

So I guess (to me anyway) beating cancer should be the first priority.

That is what worries me the most - my PSA (now undetectable) was never over 2.5 even though ONE of my Gleeson numbers was a 9(rest 6 or lower)!
Good luck to you and neighbor

The robotic method is a lot less invasive resulting in a quicker recovery, and of course, less nerve damage. Just curious, why did you not go that way? My neighbor had a tough recovery compared to me. FTR: I have also read somewhere that as for "curing" prostate cancer, the robot is no better than open surgery.

My PSA was 1.98 yet I had PC. That number is only a tool and one reading doesn't necessarily mean anything by itself. My doc felt a hard bump, I had a biopsy and the rest is history.

As I understand it, they come up with a Gleason number that is totaled from two readings of the biopsy. Mine was a 7, totaled from 3+4 (which is not the same as 4+3). So I don't understand what you said. What was your final Gleason number? (should be one number)

[palace01]

Andy,
Like you I had a lump with a 2.5 PSA.
Diagram of prostate 'after Biopsy' broke the whole area into 10 sections (probably why I felt so many violating jabs!!).
My (open surgery) Dr showed something in each area that he called Gleason numbers. Some were very low numbers that he said meant undetectable. Several of them had the number 5 or 6 that he said would normally indicate early signs of problem but typically they would just monitor for a while. One of the areas had a 9 which he said was very high and made him recommend surgery.
I then went and got opinions from a robotic surgeon and a radiation specialist. They all agreed with the interpretations. They all agreed with what you read that robotic helps you recover a little quicker but made NO difference to the actual curing of the disease. It was the robotic guy who also said that my prostate was large and may result in nerve damage on 'both' sides.' The radiation specialist said that surgery was fine but he personally would choose radiation because he didn't like the idea of reconstruction.
I just decided to go with the Dr I had been having checkups with for 12 years because I liked his 'bedside manner'.
Interestingly the lump was NOT on the area where he noted the 9.
My recovery was fine, home after 2 nights (he said I could go home after one night but I chose a second with medicare paying ), tubes out within a week, No pain pills taken at home, scar a bit painful for a few days if I moved certain way, bladder control almost completely back in 2.5 months.
The marginal edges with suggested radiation and the ED are the remaining problems SO FAR.
So NO I would not discourage people from Open surgery based on my experiences!