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Post Cystectomy ED
My husband (late 30’s) was dx with bladder cancer last May. Did 3 mos of MVAC before radical cystectomy (nerve spearing) in August. We are 6mos post sx. Using Viagra 100mg. doesn’t work. Dr added Muse, doesn’t work. Doesn’t create enough for penetration. Other methods work & he enjoys that. I am thankful I have my husband here for our family. I crave penetration though. Anyone have similiar experiences? Does time help the nerves? He does have an appt with his Urologist later this month. I tried to get him to go back sooner to address and he wasn’t ready yet.
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39 Replies
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Right now I just want to get thru this chemo 3 more weeks then the surgery and then I will worry about shots etc elsewhere lol. Joe
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Ouch.
That’s all I have to say for now.
More to follow.
“Standing on my Head”––my chemo journal
T3a Grade 4 N+M0
RC at USC/Norris June 23, 2006 by Dr. John Stein
You might try finding a surgen to do robotic surgery, They spar the nerves for future action. I know a guy that had it done at Henery ford in detroit he also was 3 weeks back to work. He had relations with his wife in 5 weeks he said close to normal. Of coarse it is dry ejaculation. hay unless you want babys no big deal. I was going to do it this way. But I went another rought for so me my bladder and his buddy the prostate are still hanging out as one. Don
Hanging in there!
I discussed this the other day with my oncologist I have 5 more weeks of chemo left and then the surgery and then will discuss all this. They have other specialists at the Univ of Penna that handle all this kind of stuff. I am 52 and my oncologist also said there is the possiblity of never having an erection again ever(bleep bleep). But till I cross that brige I got to to keep fighting and beat this or there is no worring about my other friend down below lol. The thing I found that works the best for me is fighting, focusing positive and keep it simple meaning give things time as they come and be happy for your life right now. This is a tuff disease if you expect your sex life to be as it was b4 you were dx just because male wise if you have RC things will never be the same but does mean somethings might not work my opinion. Best Wishes, Joe
Zachary
Good luck tomorrow at USC. We will be thinking of you. The earliest we can have it will be in July. Keep us posted and stay well so you can enjoy the implant.
Sam
Yes, it is only for nerve-spared folk. If you’re like me and had your nerves snipped, an implant (or perhaps a funhouse mirror) is the only option.
Off to USC tomorrow…
“Standing on my Head”––my chemo journal
T3a Grade 4 N+M0
RC at USC/Norris June 23, 2006 by Dr. John Stein
Does anyone know if the shot can only be used if you have had the nerve sparring surgery? Is the penile implant the only option if you have not had the nerve sparring surgery? Our surgeon only mentioned the implant so I’m guessing that is the only option.
Sam
Oh Zach… walked right into that one now didn’t I ;D
Believe in yourself,
Mike
T1-G3, CIS
RC w/ Neobladder 8/22/06
That’s tremendously reassuring Mike. I’m going to enquire about the injections. I’ve found the meds unreliable. Ive had them work a few times but generally erections aren’t what they used to be. I’ll continue taking the meds though as its good to keep the bloodflow going (as instructed by my doc). And thanks everybody for being so frank. It’s really very useful. (I’m trying to choose my words carefully here because I don’t want to provide the catalyst for another penis gag! I’d let the dog tell the jokes from now on Zachary ;))
… I am a real light weight when it comes to pain and this was hardly noticable.
So you’re saying it was just a little prick? ;D
“Standing on my Head”––my chemo journal
T3a Grade 4 N+M0
RC at USC/Norris June 23, 2006 by Dr. John Stein
OK… The vote is in on Injection Therapy and I give it a 10! TIm, you asked the specific drug and I used Alprostadil from Caverject. I can not say that it did not take a bit of guts for me to inject my own penis but truly… I am a real light weight when it comes to pain and this was hardly noticable. Guess i got it right cuase it really REALLY worked.
I tried Viagra and Cialis and while there was some response, it was minimal… penetration was virtually impossible. 10-15 minutes after the shot I felt 18 again and VERY natural. The only side effect I’ve experienced is that it is strange to maintain a full erection following an orgasm.
Don’t be frustrated and don’t avoid this alternatve to pills. I am so happy I finally found this I just can’t express it.
Believe in yourself,
Mike
T1-G3, CIS
RC w/ Neobladder 8/22/06
Your husband sounds just like me I am always more tired then feeling sick but I do have my moments. If I feel the slighest feeling of nausea I take a compizine, they work well for me. I don’t wait till I’m sick before I take just if I got that feeling. When I get my treatments they always give me Zofran that works well. My insurance will cover Zofran but they will only give me 6 pills ( about $50 a pill )a month so they are for extreme emergencies. My Mike’s Magic Mouthwash is warm water and salt and this for the Methotrexate which can cause sores in the mouth and I do this after I eat and no probs as of yet. They mentioned different mouthwashes but my oncologists nurse said Joe the warm water and salt is as effective as anything and you have right in your house. I honestly can’t complain about Ketstone 65 they pay for just about anything but chemo is not cheap so if they find a way to cut a corner they will. Best Wishes To you & Husband, Joe
Our insurance co would only send the Neulasta to our house, go figure.
He also took Emend at the start of each cycle, Kytril, Phenegran (didn’t need this one as much the Kytril really worked) & Duke’s Magic Mouthwash. These
meds worked very well for him. He was always tired but never “sick”. but you are right, they aren’t cheap! Good Luck to you!!!
Ps He also took something for”acid reflux” during his chemo period, Protonix I think.
Belle I saw the neulasta shot thing. I too am on MVAC and I got my first shot last Friday. I have to get it done at the hospital where I am being treated I have Keystone 65 and they don’t cover that particular drug but if done in hospital they got no choice they have to pay for it. Dang I found out that shot costs around $2800. My wife is nurse and could give it to me. Also I could do it myself lol it is just a shot in the muscle of the arm. I know there isn’t nothing cheap about chemo but 2 seconds and bam $2800 amazing. Best Wishes, Joe
My brother-in-law was in a bad car accident back in 1977. He broke his neck C5 and and he spent a couple of years getting therapy here and there and he is walking again sometimes with cane or long walks he needs his crutches a true miracle. Anyway this lucky son of a gun got quite a few dates from the younger nurses that cared for him. He went and was shown how to do these shots and they must work cause man oh man did he toot his horn lol. He’s is now in his late 40’s now and I know he stills uses for those special moments lol, Good Luck, Joe :)
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