Starting Xtandi post chemo

[GoNapoli]

My Father is starting Xtandi this weekend, any thoughts and experiences on taking in morning vs. evening. Any thing to look for with the side effects upon taking it? I know with the brochure says, every side effect under the Sun so looking for more common personal experiences. Thank you and have a Happy New Year!

[RyderLake2]

Hello, I have been taking Xtandi (enzalutamide) since September 2017. Three years and four months. Touch wood it is keeping my PSA down and extensive bone metastases in check. Everyone is different but a common side effect of Xtandi is fatigue. Best to take the four pills at night, just before bed time. Hope that helps!

[GoNapoli in reply to RyderLake2]

Thank you!! Greatly appreciated

[Shooter1 in reply to GoNapoli]

See my other posts..everything under the sun except death. Able to tolerate 80 mg dose, still on it. (2 pills at 9 PM daily.) Best of luck--some of us can't handle the full dose.

[GoNapoli in reply to Shooter1]

Thank you for the reply, how soon after taking the 4 pills did you realize you couldn't handle the whole dose?

[Shooter1 in reply to GoNapoli]

Finished Chemo/xtandi at end of Feb. Didn't improve. Continued Xtandi and by the beginning of June I was a complete invalid..So about 6 mo. before it was killing me.

[dhccpa in reply to Shooter1]

Do you take with a meal or without?

[Shooter1 in reply to dhccpa]

Without...

[tallguy2]

Watch for what appears to be (and is) a seizure. My father had one while on Xtandi.

Best wishes!

[2dee]

MY experience is that all the expected side effects haven't really occurred yet beyond the best one of driving my PSA down rapidly from a quickly rising 9.1 to .4 yesterday since 5/18.Fatigue has increased. More mental confusion.

All other side effects were all ready affecting me from ADT Lupron started in mid 2018 due to my Dx of stage4 fully metastized with PSA>1300.

I'm excited by what Xtandi is doing for ME.

2Dee

[larry_dammit]

Good morning Warrior, I have been on Xtandi now for 48 months, I found that taking it in the evening worked better for me, I could sleep through some of the early side effects. Yes it has a lot of side effects, especially when taking other drugs . I had a terrible time with pain drugs , ended up on Ms Cotin and Dilaudid. For bone pain. All in all it’s not that bad and works for me. Keep up the fight 🙏🙏🙏

[EdBar]

Definitely take it in the evening, I take it a couple of hours before bed. I’ve been talking it now for about five and a half years. I had to reduce the dose by half a couple years ago due to escalating side effects. It has still been effective at half dose and some guys are able to do that if cancer is under control.Side effects for me have been fatigue, cognitive issues, headaches and BP issues. I’ve worked with my doctors who’ve prescribed medications to help with these. I also exercise daily (important), eat a healthy diet and try to get a solid, routine amount of sleep every night.

The side effects are significant, but tolerable and it has been very effective for me. Be sure to be forthcoming with your doctors about side effects they may be able to help, and monitor BP regularly.

Ed