How long can you be on Xtandi?

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.

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). 🤷

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.

Thanks for the input.

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

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.

Oh, I'm so tired of fatigue.

(the lame joke of the day)

But thanks for the comments. I just got back from the gym.

I am on xtandi for 8 months after chemotherapy. Fatigue & headaches are the strongest side effects.

I was on Xtandi for 3 months, alongside a 3 month Lupron injection. I stopped taking them both a month ago after the 3 month journey. Tough to say which side effect was from what, but mine weren’t awful. I was definitely a bit tired but got though my days without issue. The biggest side effect for me were the hot flashes. There are worse things but it’s quite annoying. My only real bodily response was that my sling started feeling strange to the touch. I think I lost some hair or microhairs so it felt weird. Like leather and rubber. There wasn’t any pain or discomfort. FYI I’m 54, started the meds Feb 20, stopped late May. RALP on April 20. All in all the side effects were annoying but not debilitating for me.

@mark10517ny Maybe a younger body just tolerates hormone therapy better. 🤷

Like you, I was in my mid-50s when I started on ADT + an ARSI (Apalutamide in my case).

I read posts about ADT and ARSI (like Xtandi or Erleada) being unbearable, even for people who are on them for just a few months, and it's like they're writing about completely different meds.

Like you, I've experienced mild fatigue, body hair loss, and thermal dysregulation (like hot flushes), and I can toss in gynocomastia. But I've lived with hormone therapy for nearly five years, and for me, the worst thing I'd call it is "occasionally annoying".

OTOH, I had very bad experiences with steroids and opioids in hospital post-surgery in 2021, and couldn't get off them fast enough (steroids gave me temporary diabetes and severe insomnia, while opioid-based painkillers gave me weird, vivid dreams that made me afraid to close my eyes). They don't seem to bother most other people.