Diagnosed with stage 4 June 2020 with only treatment being ADT. Currently on Xtandi and Lupron. I have a couple questions for this amazing group.
On my last 6 month Lupron injection the nurse injected the medicine very fast and spent a considerable time mopping up what was leaking out. I usually ask that they inject very slowly so as to make sure there is no leakage. I have been averaging a testosterone level of 12. Since that injection it has been climbing monthly and I’m not sure what to make of it.
I’ve also started started having increased incontinence issues to the point where I’m starting to look for solutions like incontinence underwear. Hoping not needing pads yet.
I’ll get another PSA ( undetectable) and testosterone ( 26) on the 18 for an oncologist visit on 12/20, NP not Onc probably due to holiday.
Thanks for any feedback. I know my issues are minimal but this disease is like waiting for a bomb to go off.
Hey Seville . Nothing about having stage#4 is minimal ..pc is a grind . I’m 7 yrs 9 months in . But who’s counting? I never knew that I had to be a mad scientist and watch all of these numbers to survive . Although We all suffer at different levels . We fight the same bomb inside . Undetectable is your friend . I’ve been so ,for 7 yrs .. keep rolling . Don’t wait for the bomb . Self image it leaving you for good . It took me until last year to finally say that I’m in a long term remission . I did not want to jinks it. I’m not bragging . Just telling you that it is possible . I went through some tough stuff my first two years with this . I just stopped a test adt drug that I was on since dx . I’m floating with no adt for the first time …But i did the chop chop in 2017 allowing me to drop the lupron shots . I’ve had 3 t for 7 yrs . That alone can disable a fellow . Forget the bomb! Easy to say , hard to do . Pray pray pray, that it stays away! Happy holidays! 🏜✌️
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thank you. I May consider the chop chop option. Did you do this one testosterone started to rise out just to stop Lupron shots.
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Nope! When my pc specialist told me 5hat testosterone was feeding my pc and would kill me I said “ off with the juevos “! But I waited two years on Lupron undetech before chopping . Most guys won’t do it! 🥺
The fight is not easy. It's a tough one from here on. I had a robotic removal of my prostate almost 6 years ago. Prior to that when I was diagnosed my wife, who is on OR nurse had me doing kegal exercises. I mean I was doing them seemed like every time I sat down, stood up,or just "thought" I did them. I went in for the removal, came out and after the 7th day they pulled the catheter. I have been dry all night, everyDAY since. I still do kegal exercises religiously. My son lives 10 and 1/2 hours away in Seattle. I drive there 3x times a year. With "limited intake", I have limited out flow. I control everything I do very well still. I believe this is a testament to these exercises. Maybe give them a try? You sound like you have some control now, this may be the help you need to get everything back to being comfortable again. I am still after all this time no drips, no runs, no errors. Best of luck to you! Keep up the fight.
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