My update on Orgovyx treatment

Well, I've been on Orgovyx now for about 6 weeks.
My mind is clearing up, my mental state is sharper, and I can focus better.
Also not suffering from as much depression.
I am still not of the same mind as before treatment started 7 1/2 years ago, but I am much better.
Probably saved my job, it was that bad.

I have no side effects except one hot flash.

That's great to hear! I don't understand why there might be less side-effects compared to Lupron though.

Well, I think bc most of my SEs except the one's mentioned in OP had completely disappeared.
Orgovyx is supposed to have SEs but milder.
So it basically made the one's I am experiencing much milder.
That is what I was told before I first started taking it.

I still don't have as much drive.

One other great thing about O is that it is fast acting, it lowers your T level very fast. And if you need to go off of it, it's just as fast leaving your system.

SE -- shrinking balls, that one is still in effect.

I read that the #1 cause of male shrinking violets is shrinking balls.

I wonder if there is any info on changing to pill form if you have been on the shots for a long time. about 4 years worth of shots for me. Weight and memory issues appear to be my biggest SE.

Are you on private insurance or Medicare ? How is the cost of the Orgovyx being covered ? I would not mind if my mental and hot flash SEs were reduced.
Dave

Vynbal, oh ok, I missed that I guess. Good luck!

I’ve been on continuous Lupron for 4-1/2 years and I’m getting worried about cognitive effects. Two years ago I had bipolar androgen therapy (“BAT”)—400mg Testosterone every 28 days. I had four treatments. In addition to just generally feeling much better I felt my mind was sharper — like it “used to be”. I thought: ”wow, I didn’t realize how bad that Lupron was”. When I stopped BAT I was quickly reminded.

I switched to Orgovix a couple of months ago. I’m glad to hear you found a difference. I’ve had two BAT treatments and my mind has not regained the clarity it used to have. On the very bright side, although I am castrate resistant, I respond very well to Enzalutamide, which I am on intermittently. So, the very good news is that my life expectancy is now better than it was 4-1/2 years ago. However that makes me realize that I could continue on Lupron 3+ more years.

I’m really getting worried. I am retired, so it’s good I don’t have to worry about my job, but when I was working I was in a technical field and if I were working I might have retained more clarity. Who knows.

It appears there’s not much hard data on cognitive issues, though it’s well established that they’re there. And one “problem” is that until recently patients didn’t live this long so there’s really a paucity of data,

One ONC I talk to has said that in such cases “if you’re willing to sacrifice some survival” [Gulp — that’s a big IF) go off the androgen deprivation, get your T back and control the cancer with Daralutamide which, unlike Enzalutamide, does not cross the blood brain barrier.

Anyone want to chime in I’m listening.
******
A separate note on weight gain. I lost weight, though it was through conscious effort. I also switched to a largely plant based diet since that what very expert seems to agree upon as best for survival. I exercise enough, not a lot but enough that I maintain some aerobic fitness and muscle mass, though it’s hard to maintain muscle mass without testosterone. [When I was on BAT the first time I got noticeably stronger with my basic workout unchanged, except increasing the weight. Once off BAT the weight I could handle went back down.]

Been on continuous forms of ADT injections since diagnosis ... first LUPRON, then FIRMAGON, and ultimately ZOLADEX.

Appreciative of these posts with new details on ORGOVYX ---- a new form of ADT, taken as a medication at home --- rather than an injection given in the clinic.

Thanks to all on this thread who have shared first-hand experiences on this thread, as well. This is how we all learn from each other!

Keep blazin' the trail forward!
CYCLONE ~~~ # Iowa State University