Enzalutamide (Xtandi): Anyone have experience with this drug?

He said Daralutimide, or others with Chemo in the far off future Maybe PL 177 if I qualify
He said there are many choices and more coming

I am 78 Feel great Some back pains sleeping May be getting L2 intensely radiated again

MRI next week

Noting the comment that oncologists expect Xtandi to run its course in 18 months, What are possible treatments or meds that could be prescribed post Xtandi

Daralutimide, or others and even chemo PL 111 if qualify

Hello friends,
My father has been diagnosed with stage IV prostate cancer that has metastsized to his back bone. He is currently on Xtandi which he has been on for 3 weeks. He is doing better than before he is able to walk better and move better. The only major concern he has right now is the Xtandi side effect of insomnia between sleeping hours (10pm to 2am). He cannot sleep but whats worse he has this empty hollow feeling (he describes it as if he is falling into an abyss). We are going to reach out to our physician. But just curious what our community thinks about this side effect. Anyone experience this with Xtandi? He is taking Xtandi 160 mg a day.
Any comments will help.
Thanks a lot.

Hello @jonyme90 and welcome to Mayo Clinic Connect. I am sorry to learn of your father's diagnosis. I was able to find a discussion where members are sharing their experiences with Xtandi so you will notice I have moved your post here:
- Enzalutamide (Xtandi): Anyone have experience with this drug?: https://connect.mayoclinic.org/discussion/xtandi-2/

Members such as @melcanada and @markheuer have recently been discussing and may be able to come in to share more with you.

How long since starting to take the Rx did the side effects appear?

I take an antidepressant at bedtime that has the effect of putting me to sleep for about 7-8 hours. But insomnia is a side effect listed for Xtandi. The antidepressants is not habit forming so that is a positive. It is called Mirtizapin.

The other side effect is not something I have heard of regarding Xtandi. My main side effect is chills in the am

It started right away from the start of taking Xtandi. Thank you.

I took Xtandi for 26 months. Sorry your father is experiencing insomnia. I never had it. I had fatigue and some swelling in my legs. It’s a wonderful drug and if you look at the data from Prosper trial you will feel confident your father is on the right treatment. I owe to Xtandi that I have been in remission for 4 years now. Wish the best to your dad and your family.

My oncologist started me Xtandi beginning of year after being on biclumate for about nine months. I am Stage IV and have been receiving lupron injections every 12 weeks as well as Zytiga infusions since APC diagnosis. Prior to this I was receiving lupron/elgard under an Urologist care intermittently for approaching five years.
I've learned several things while under this menu; the tolerance for the drugs is individualistic and it gets better over time
The Xtandi makes me a bit goofy shortly after injection, but that passes in maybe about an hour. I take them after breakfast and that helps for me. Also, I kindof like goofy
I do get fatigued in the afternoon, but an afternoon siesta handles that. I would suggest AM injestion with an early PM nap, so as to be ready for nite-nite whenever your regular sleep time is.
I have a hard times staying up through the late night talk shows, lucky to get through the monologue.
The results on just Xtandi have just been outstanding, it's truly a wonder drug for us APC patients. At my last oncologist consult, just prior to poke & pump I offered to do an Irish jig for General Bruce (my nick name) & internist. PSA dropped to 0
30, from 0.70 two weeks prior and 3.3 10 weeks prior to that.
The General had me get a bone scan (not fun) before latest consult and the radiologist read was several areas visible in cartoon from a year prior leading to APC diagnosis had lapsed to non-detect. I was flummoxed, hence the offer to dance. I had no idea the metasticized cancer would do that, I only wish they would apply some stats to it, rather just eyeballing it. The 1st scan was termed a Chtistmas tree, but in my case a few lights have burned out - hurrah@
I am continuing to lead an active life style, albeit the type of activities I have shifted to low impact, weight bearing, just like our oesteo sisters. Lot of walking and dancing when I hear live music which stirs my soul. Gettimg some aquatherapy from some PT folks which I like. Have also been through a CBT course & consult as an alternative to using Rx narcotics for pain management.
It's working for me, enough so I am about 2/3rds way through a x-country train trip now
Can't say enough good Xtandi driving down my baseline. Thankful that Pfizer adjusted their pricing strategy, with a little encouragement from Congress, to make it available to more than just wealthy APC patients. The US taxpayers paid for the research for this break-through drug.
Peace & tranquity to all my APC brothers, happy to tweet experiences and tks to Mayo Clinic for providing the forum to do so.

Also have not heard of insomnia. Fatigue yes, and it is awful. It is not like drowsy. More like unable to function, mentally or physically. Seems some people would like to dispute it but seems to be effective.