it's been awhile since i checked in. we've been dealing w/some personal family stuff, and i've been trying to stay offline to keep myself sane. hope you're all hanging in there.
could really use some guidance if anyone is around & familiar w/casodex long term etc.
here's our unusual situation:
-husband had RALP & undetectable PSAs for 17 months before it started to rise again
-then he had IMRT (70 Gy in 35 fractions at 2 Gy per day) & Bicalutamide 150mg per day which lasted 11 months before his PSA started to rise again
here's the tricky part, while planning for next steps with MO (scans, genomic sequencing, next meds), his PSA suddenly went undetectable again & hasn't shown up since. nobody could tell us why this happened, especially when he hadn't changed anything med/treatment wise. it's been approx 9 months of undetectable PSAs.
here's the thing- he's supposed to stop taking casodex at the end of this month- that was the plan when he started radiation. but after that weird rise & fall, and after thinking about his particular pathology (intraductal carcinoma & tertiary 5) it feels incredibly scary.
with any other chronic illness, if it ain't broke you don't fix it, right!? why can't he just stay on casodex long term? he doesn't mind taking it at all b/c he's one of the lucky ones who has minimal side effects, and we'd be sure to keep up with bone density tests & heart scans etc.
his fear (and mine) is that he goes off the casodex, the PSA comes roaring back & then MO wants to do lupron, zytiga, the whole nine yards. side effect city. that's the way she was headed when we had that rise 9 months ago. "we've got to hit intraductal hard" --but my question is- why can't we ride this out & see where it takes us? why mess with a seemingly good thing!?
if anyone has done this, can you point some studies or research my way?
would be forever grateful.
ps. i've attached an older pic of my grumpy kiddos b/c that's how i feel about this WHOLE thing, grumpy. (please note- also incredibly grateful to be on the downward slope at the moment. i know how quickly these things can change.)