Have others on ADT not had hot flashes?

I've been reading the Hot Flashes thread and am wondering if I'm just unusually lucky or if others here have not had hot flashes from ADT. I'm now in my fifth month on Firmagon (Degarelix) and thus far have had not notable side effects - no hot flashes, no fatigue.

I'm in a clinical trial but was randomized into the control arm getting just Degarelix - which means it's the same treatment I'd have been getting anyway. But because I'm part of a trial I got the big fat pile of paper with all of the trial objectives, risks, etc. Under "Risks Associated with Degarelix" it lists hot flashes as "Frequent (greater than or equal to a 20% chance that this will happen)". This doesn't say a lot -- it only means the frequency could be anywhere from 21 to 100 percent.

Now I'm curious. Is there some significant number of patients on ADT who don't get hot flashes - and presumably don't comment on a potential SE they aren't having.

Jim

There is a small number of ADT patients for whom the drugs do not lower testosterone to castrate level...You might ask to have your "T" checked and if the ADT is working then count yourself lucky....

My T fell from 389 to <3 within a month of my first shot. It's tested every third month and and was still <3 in July. Because I'm in the trial, I get monthly blood tests of PSA and liver function, and additional blood tests every third month. Also my PSA dropped 6.62 to 0.45 in the first month and to 0.03 by the third month. So far everything is testing as expected - other than unexpected, but welcome, lack of SEs.

Jim

Bohemond said...

garyi said...
I may be starting some radiation colitis/proctitis/entertitis, 3 months after radiation is over.

Gary,

I had some proctitis, occasional moderate bleeding, starting about 8 to 10 months after SRT. It gradually got better on its own and was completely gone about a year after its onset.

Jim

Thanks, Jim. I've had no blood. Just many false rectal urges with some gas and mucous discharge. Kinda constipated, but not bad.

My Sed Rate is up to about 30, and my C-reactive protein is high borderline...so something is cooking. I'll give it a little time to settle down. It's only been a month so far.

I don't know if you can really believe him, but my brother in law was on it for 2 years. He said he could not tell he was even on it. He's 65. And by looking at him....you'd think he was an Olympic swimmer.

Now he's an engineer so he is an information junkie. Anybody that'll listen he'll tell 'em "Did you know there's no testosterone in my body?" like he's found a new toy. Almost like it excites him.

My sister said she's never heard or seen any difference in him. But his mental function slowed...and she thinks that was due to the ADT.

Saipan,
We'll be coming into home heating season here in New England in another month of so. Maybe you could send me some starting around November.


IT,
I'm not likely to tell strangers about being T free. My wife said "Mama Mia 2" is playing at our local movie house, even though she knows from years of experience that it's the kind of movie I'd chew my paw off to escape from. I told her I might actually like it now that I'm almost a girl.

Jerry,
So far my weight is the same. I work out for an hour 5 days a week, though in the summer when I do a lot of outdoor work I'll skip the rowing and cycling machine if I figure I've done the equivalant elsewhere. Monday I did some work on our local conservation land - cutting brush, clearing an opening from a field edge into the woods and starting a new brush pile with lots of trips up and down hill. I figured from my sweat-soaked t-shirt and the rate I was huffing and puffing, that was Monday's workout.

Jim

Behemond, i may not be a good gauge, as i am just on my 29th day after my first shot, second shot coming Monday with the start of SRT on the same day. But FWIW, I haven't had bad SE's so far. Some warm flashes, followed by about a minute or two of moderate sweating followed by feeling cool and comfortable, but today they seem to have eased off, only had about 2 episodes. But again, i am only 29 days out from my first shot.