I just had my first PSA test post ADT and salvage radiation, and it was still undetectable. My T-levels have recovered to 87. I realize my battle with PC is going to be a marathon not a sprint, but this is one of the first bits of good news I’ve had in a while. So I’m going to enjoy it, at least until my next PSA test in two months. And who knows, maybe I’ll be one of the rare cases where SRT actually works.
The bad news is the radiation seems to be gradually degrading my already damaged sexual function. Does anyone know how long the damage to nerves and tissue from the radiation will continue to worsen?
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Murph256
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Unfortunately, salvage radiation is a double whammy. The surgery damaged nerve function, and the radiation added blood vessel scar tissue to that. Intensive penile rehab is the best you can do.
I’ve been pretty diligent with the injections and PDE-5 inhibitors since surgery, which spared one nerve bundle. And in fact, I was noticing marked improvement in my function at about nine months after surgery. However, since radiation, the trend has reversed again. I completed my radiation treatments four months ago, and I’m starting to experience a steady. gradual decline. I’m worried about how long this decline is expected to last. The injections are unpleasant enough, I am not relishing the though of vacuum devices or implants. The one remaining card left to play is to switch from bimix to trimix. I will speak to my sexual health PA about that when we meet next in December.
I sympathize with how unnerving it must be to be doing better with erectile function, only to see this post-radiation decline begin and continue.
While I didn't have RP, I had RT/ADT.
Keeping the erections going is a major challenge during ADT. Less than 20% of men on ADT maintain any kind of sexual activity. And that leads to tissue damage from under-oxygenation, and to penile shrinkage. So, the vast majority of guys who were potent going into ADT are smaller and impotent coming out. And to me that's a heartbreaking outcome.
My invention the Loop has saved -- is saving -- my erections during ADT. Its efficacy is amazingly reliable.
It's free to make, or is just the cost of a 6 ft phone charger cord.
If you'd like to try it, go to my first post, "Hello everyone..." and scroll down aways, and you'll find the link to the Loop instructions document reposted.
I was unaware that Giddy and Xialla were in the works when I wrote the document back in April. For all I knew, I had the only device that increased blood flow with non-constricting pressure that I knew of. The VED is unnatural and a big drag. Better, MUCH better are the new devices!
I have to be open to the possibility that I may suffer late-onset ED, even more than the AFT-induced ED. Or not. All I can do is righteously keep things going.
Penile rehab -- it should include daily tadalafil or sildenafil.
It's helpful to up the stimulation! -- Captain Obvious
May you be blessed with a stronger libido and good erections -- a mutually-reinforcing feedback loop.
Thank you for your thoughtful reply. Those statistics are sobering. I will do everything I can to maintain some level of sexual function until the damage from the radiation bottoms out, which hopefully is soon.
You got it. That's being proactive, and that's also setting up a positive, instead of negative, feedback loop.
Erectile success, for your sorely-wounded-and-struggling-to-stay-awake libido, builds on itself -- each session of sexual activity with a good-to-great erection helps the libido incrementally recover its mojo.
You must have that erection, by whatever safe means as necessary, to fully feel your masculinity. You may desire to throw in a ring vibrator, or watch bi-sex videos, (which I think are some of the greatest porn I've seen, but that's just me).
As Tall_Allen said, "Intensive penile rehab is the best you can do.*. That's correct. And keeping fit and active and eating right-ish .
I would just add that, based on my guinea-pigging experience for 18 months now, relying on the Loop to keep the erections going, "The best you can do" is gonna be pretty damn good!
And even if everything ends up ultimately at sustained erectile failure, even with the new devices... I don't know about you, but I feel greatly comforted by the presence of technology like the AMS and Coloplast penile implants.
They stand ready to take over the mechanics of making erections happen, and these babies can last as long as you want, and everything good that comes from that reality.
Comforting in the extreme. The implant -- if I can maintain a healthy libido leading up to the surgery and afterward -- is the Extended Edition of Comforting to me.
In one study on brachytherapy as a primary therapy, it mostly occurred by 9 months in. But salvage radiation can be worse. Pumps may re-establish bloodflow so the loss doesn't become permanent.
Like Tall_Allen says here, intense penile rehab is your path.
Please check out the new devices, Giddy and Xialla. They should help you, and they can be used simultaneously, because they put pressure in two different ways. I've been shouting the good news that these devices ARE.
I don't. I doubt that anyone can tell you how long _ yours_ will react. Only that it will. Keep doing what you can do to maintain and restore penile health. The rest is in the hands of the gods
And your hands -- armed with the Loop, Giddy and)or Xialla. These devices are going to make millions of men happier guys. I should know, because I've used the Loop hundreds of times by now, and it has never failed to produce a good-to-great erection. I'm so thankful that this accidental "invention" works on my ADT-induced ED so well. I want others to try any or all of these devices. Mine's free; the others are relatively inexpensive.
Hang in there! Your libido can stay awake and alive -- if you get the reinforcement of improved blood flow going on a regular basis.
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