At what time of day to take (or not to take) enzalutamide?

[Firespring65]

Hi,

I’ve been reading with much interest lots of threads in this forum – it’s lovely to see all the sharing of information and thoughts of care for each other.

My husband (69) has been diagnosed with metastatic PC at the end of May. To begin with he was on bicalutamide for a month, then switched to enzalutamide standard dose of 160mg. He also gets an injection twice a year (I’m away from home just now so can’t check the name of it).

He has various SE from the enzalutamide which he copes with fairly well but only because he gets acupuncture nearly every day, at least every other day (I’m an acupuncturist). His SE are mainly restless and twitchy legs (which make falling/staying asleep difficult) as well as hot flashes. He’s also quite tired and needs more sleep. He also suffers loss of appetite and occasional nausea.

We were told by the oncologist the time for taking enzalutamide didn’t matter as long as it was regular. However, having just taken a deep dive on the internet I found various articles (including the report of a research study at MIT) that make it very clear that based on circadian rhythms the time of taking a drug does matter VERY much indeed, including all the many drugs (including enzalutamide) whose metabolism is mediated by the cytochrome P450 enzyme. However, while this is well documented, I couldn’t find anything at all to tell me when the best time would be to take enzalutamide. The interesting thing is, it seems that dependent on the time when taken, drugs can be metabolised quicker or more slowly. In my humble understanding that would mean (and I could be wrong, of course), that in terms of SE there should be better and worse times for taking enzalutamide (and other drugs).

So my question is: does anyone on the forum have any experience with this? While according to the articles I read the knowledge about chronomedicine is there, it is still not factored in in patient care (even though, according to one French study reduction in chemo SE apparently can be as much 50% less depending on the time when chemo was administered).

And another question: has anyone experimented with different times of day for taking enzalutamide? If yes, did you notice an improvement (or worsening) of SE depending on the time you took your enzalutamide?

Thanks so much in advance to anyone for posting a response.😀🙏

[Broccoli24]

Hi, I take mine in the evening, theoretically to avoid fatigue blighting my day. I was getting restless legs... but the more exercise I do, the fewer the side effects seem to be.

[Firespring65 in reply to Broccoli24]

Thanks so much Broccoli24, that's really interesting about exercise reducing side effects...but does make sense😊.

[Tinkudi]

dad takes relugolix in the morning on an empty stomach and xtandi at night before sleeping

[Mascouche]

I take orgovyx and xtandi maybe half an hour before breakfast. Never tried to take them before bed so I can't tell whether the time of day makes a difference.

[God_Loves_Me]

I tried different time but at night works really great for me

[Firespring65 in reply to God_Loves_Me]

Thank you so much. I'd be curious what the difference was??

[Clippedwingz]

I take my Xtandi and Orgovyx at 3:30pm which seems to be the sweet spot for me. I then get some hot flashes out of the way before going to bed. Never had restless legs, but definitely hot flashes and restlessness and general anxiety at night which can impact sleep.

Also never had bad fatigue, but exercise at least 30 minutes every day. For sleep, I now take RYZE mushroom “hot cocoa” that has melatonin too. Sleeping much better on that with less anxiety and restlessness

[Firespring65 in reply to Clippedwingz]

Thank you Clippedwingz! Interesting - sounds like you did experiment with timings. My husband takes medicinal mushrooms too - alternating mesima, reishi, chaga and cordyceps - but we get the individual mushrooms as powder. I've been reading about melatonin...we're seeing a naturopath next week - he specialises in integrative cancer care so we're waiting for his recommendations re supplements.

Wishing you all the best and thanks again for your thoughts

[MooseJawg]

I started out taking it in the morning but switched to evening (9:30 pm) in hopes the SE would be fewer but so far 13 months, I can’t say I’ve noticed any difference.

[lcfcpolo]

I started out in the morning but for the past 4 years have taken Enzalutamide around 6pm in the evening. I think I read something on here 4 years ago saying taking in the evening was best.

[Firespring65 in reply to lcfcpolo]

Hi there, thank you. By what various folk have been posting it seems evening is the better time...my husband will try that and see how he goes...hopefully less twitchy legs, fingers crossed!!

[EdBar]

Take it in the evening, its main SE is fatigue. I’ve been taking it for nearly 10 years.

Ed

[PELHA]

Not exactly the same but husband takes apalutimide before bed.

[Eagleandme]

Thanks for the post, and for all the replies! I learned some stuff from them. My oncologist didn't have a preference as to time of day to take Xtandi. I've been taking it for about 18 months now after experiencing cancer recurrences both after chemo treatment and multiple rounds of radiation. After experimenting, I landed on taking Xtandi after dinner with several other medications. The main SE from Xtandi for me is cognitive difficulties, so by taking it after dinner the major impact of those difficulties occurs at night. I also experience major fatigue from taking Lupron injections every 90 days which also brings on hot flashes. Both of those SEs are minimized if I exercise every day. It's a challenge when one feels fatigued, fuzzy headed, and (in my case) impacted by severe heart disease.

[Mgtd in reply to Eagleandme]

Keep up that exercise! Glad to read it is working for you.

[FaithOverFear104]

My husband is currently on Enzalutamide monotherapy on an intermittent basis. His main SE has been significant fatigue. However since diagnosis/start of treatment almost three years ago, he has also experienced sleep problems - which generally make the fatigue more severe.

He had been taking the Enzalutamide before bed up until he restarted it a month ago. He decided this time to try taking it in the morning and has found his sleep to be much improved and the fatigue is as well.

I should also note that he also takes a low dose of Amitriptyline (Elavil) for sleep and that is helping too. He had previously tried Trazodone for sleep and that did not work for him.

I hope this is useful.

Wishing all the best for your husband and you as well.

[Mgtd in reply to FaithOverFear104]

Curious does he exercise daily?

[FaithOverFear104 in reply to Mgtd]

Yes - he does. He has always been someone who works out daily - weights, cardio at gym and sports like running, tennis and pickleball, etc. Even when he doesn't feel 100 percent, he still forces himself to work out. His MO feels like this has helped a great deal in his journey so far.

[Miccoman]

I was told, when I began Xtandi, that the main side effect was fatigue and it was best to take it just before bed so that I would be asleep during the most severe fatigue. Worked great for me for 6 years. I was on 160 mg dose, and I'm sure the dose does make a difference. It just knocked me out for the night.

Have never seen anything about it being better metabolized if taken at a certain time of day.

Of course we are all different so YMMV

[raoulmaher]

In the A.M. - D3 and K2 seem to keep the sweats down !!! kindest Raoul