How long can you be on Xtandi?

Posted by bluegill @bluegill, Jun 2 3:34pm

A doc at Mayo just informed me they want me to stay on Xtandi for 2 more years (I just started it), along with ADT. Should I try to find out what side effects I may experience, or should I just let them be a surprise?

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bluegill | @bluegill | Jun 2 4:05pm

I just Googled it, but I thought I'd see if anyone here has any real-world experience with it.

The list of possible side effects is exhausting to read, and include apparent contradictions such as diarrhea and constipation (most likely not at the same time).

I just don't want anything too weird, like growing a boob out of my forehead or something.

northoftheborder | @northoftheborder | Jun 2 4:44pm

I've been on Erleada (a similar -lutamide) since 2021, and expect to be on it forever, or at least until I have better options.

It's still working. All of the side-effects have moderated over time, but it's also hard to distinguish what's caused by the Erleada from what's caused by the Orgovyx, the radiation, and/or the spinal damage (which affects my parasympathetic system). 🤷

jeff Marchi | @jeffmarc | Jun 2 5:02pm

The biggest problem with Xtandi (Enzalutamide ) Is that some people can’t handle the side effects. Some people get a tremendous amount of fatigue or other issues. Nubeqa (Darolutamide) like fewer side effects, and works essentially the same.

If you have issues with Xtandi you can switch to it.

bluegill | @bluegill | Jun 2 6:46pm

Thanks for the input.

brianjarvis | @brianjarvis | Jun 2 8:50pm

Some of the more serious side-effects to look out for with Xtandi (enzalutamide) are listed here in this chart:

johnernest | @johnernest | Jun 3 7:57am

In reply to @jeffmarc "The biggest problem with Xtandi (Enzalutamide ) Is that some people can’t handle the side effects...." + (show)

I currently take darolutamide, along with a Trelstar injection every six months. Doing the combination for 8 months now. The fatigue fluctuates day to day, For example, I woke up yesterday feeling mostly normal (you are never completely normal on ADT) . I lifted weights at the gym and felt good all day. Today was different, I woke up feeling bad, like a hangover, had my usual cup of coffee and still did not feel well. Decided to fight the feeling and went out for a walk, after about a mile I started feeling better and better as I walked. After a good 3 mile walk, hilly where I live, I felt great. My point is, unless you are very active the fatigue will set in and you will just feel bad. My docs tell me I am doing well and to stay active and exercise. The exercise also improves your mental outlook.