neobladder without prostate

Sticking a needle Where? Courage, guidance and help.
jisherwood
Posts: 51
Joined: Fri May 04, 2018 11:41 am

Re: neobladder without prostate

Postby jisherwood » Tue Jun 05, 2018 10:22 pm

If my mixture is on the low end, what should be asking for to be boosted up to? :?
Maybe get new doc who is more concerned about his patients instead of himself.
Thats the problem working with doctors in a small community, they start to get to big for thier own good. :o
64yrs, nerve sparring surgery Dec'17, neobladder with prostate removal because of bladder cancer, gave up on trimix, became bionic with AMS 700 CX June 2019. :ugeek:

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bldoink
Posts: 3920
Joined: Mon Apr 03, 2017 12:58 am
Location: Fl.

Re: neobladder without prostate

Postby bldoink » Wed Jun 06, 2018 1:09 pm

My personal experience is only with mono-mix and Edex (same thing really). I don't have any actual experience with tri-mix.

I would start by being a bit more insistent (politely) with your doctor that you want a better resolution to the issue (another poster has a much more poignant way of saying this). If you don't feel he/she is properly addressing your problem then look for another doctor. But make sure your dissatisfaction with your doctor and results aren't due to a lack of communication with the doctor on your part. These guys and gals are busy and you have to speak up.

As for specific recommendations on your formula, I'm not comfortable giving specific formula advice. I'd be guessing, I'm not qualified, and that's too close to being actual medical advice. That said, I'm not one of those that has pain issues with alprostadil and alprostadil alone works well for me. Alprostadil is also often referred to as the heavy hitter component of tri-mix. My bias would be toward increasing that component of your mix.

Also, if you're not already on a maximum formula, which you aren't, my preference would be toward a stronger formula so that you can inject less volume to achieve the same drug dose. Of course you haven't yet discovered what that actual drug dose is, so there's that.

Just don't forget, I'm not a medical professional of any kind and my advice is worth exactly what you pay for it.
R.R.P 2011 Mayo Jacksonville, Dr. M. Wehle. Not nerve sparing. C in margins. Radiation 2023, V.E.D, Viagra and PGE-1 (80mcg/ml) injections @ 8 - 14 units. Originally Edex20, then compounded PGE due to cost. Inject. 12 yrs. It works. Treasure coast of FL.

jisherwood
Posts: 51
Joined: Fri May 04, 2018 11:41 am

Re: neobladder without prostate

Postby jisherwood » Sun Jun 24, 2018 9:03 pm

Well had my 3 month check up and all is looking really great 8-)
Spoke to doc about low dosage Alprostadil-papaverneine-phentolamin
E MES. 8.33 MCG/ 22.5MG / 0.83 MG PER and mentioned that at last injection I did .6 ml and got a little better but nothing outstanding 8-) ... he mention I could go all the way up tp 1ml and this doesn’t produce anything then there is to do but wait another 6 month and maybe go with implants. I mentioned what about going to a stronger dose like 40/30/2 and his response was won’t do you any good! Does everyone think it time for a new doc?
I’m even thinking about contacting my surgeon @ UW and asking for his advise. Any ideas would be nice. With only 4urologist in town and they are all in the same practice and I have already gone through one of his associates I feel like I’m stuck between a rock and a hard spot. So the speak. :o
64yrs, nerve sparring surgery Dec'17, neobladder with prostate removal because of bladder cancer, gave up on trimix, became bionic with AMS 700 CX June 2019. :ugeek:

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bldoink
Posts: 3920
Joined: Mon Apr 03, 2017 12:58 am
Location: Fl.

Re: neobladder without prostate

Postby bldoink » Mon Jun 25, 2018 12:46 pm

For now I'd follow his advice and continue increasing up to the 1ml or satisfactory results. If it works at 1ml I'd ask for double or triple strength so you can reduce the actual volume. If he won't do that then find another doctor but you may as well finish out the current trial and learn what you can from it.
R.R.P 2011 Mayo Jacksonville, Dr. M. Wehle. Not nerve sparing. C in margins. Radiation 2023, V.E.D, Viagra and PGE-1 (80mcg/ml) injections @ 8 - 14 units. Originally Edex20, then compounded PGE due to cost. Inject. 12 yrs. It works. Treasure coast of FL.

jisherwood
Posts: 51
Joined: Fri May 04, 2018 11:41 am

Re: neobladder without prostate

Postby jisherwood » Mon Jun 25, 2018 9:04 pm

You are absolutely correct as I have already spent the money and it would be good practice on injecting. Will post my results in the next several days :lol:
64yrs, nerve sparring surgery Dec'17, neobladder with prostate removal because of bladder cancer, gave up on trimix, became bionic with AMS 700 CX June 2019. :ugeek:

jisherwood
Posts: 51
Joined: Fri May 04, 2018 11:41 am

Re: neobladder without prostate

Postby jisherwood » Thu Jul 05, 2018 11:25 am

Well I had my last appointment on 6/21 and the results were not very good. I have moved up to 60 units and no nothing but a good feeling :( I spoke to doc at appointment and he mentioned if I goto 100 units and still nothing, then there is noting more to do but to maybe look at implants. I mentioned that maybe the mix needs to be increase to a stronger dosage but got no response from him. :shock:
Currently going to be contacting my surgeon from UW Seattle and ask his opinion on my mix and see if he feels it can be increased. I really want my own personal towel rack back. I feel it would bring my mental status back up to normal. :)
64yrs, nerve sparring surgery Dec'17, neobladder with prostate removal because of bladder cancer, gave up on trimix, became bionic with AMS 700 CX June 2019. :ugeek:


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