Afinitor/Everolimus - best time of day?

[13plus]

Hi everyone,

I start this drug today. I wonder if anyone found an optimal time of day to take it?

Thanks!

[BaileyJames]

Hi There, I just started this a month ago. I take it at night before I go to bed. Good luck wishes to you ❤️ 🙏

[13plus in reply to BaileyJames]

Thanks. I ended up taking it after dinner but the whole mouth wash expectation is what I’m finding tricky now! If I use the mouth rinse after eating, I wonder if it’s ok to then follow that with Eg a cup of tea? I don’t wish to leave that taste in my mouth more than I have to! How are you going so far?

[BaileyJames in reply to 13plus]

Hi There, I do the rinse due to mouth sores, ugh awful..I use it as everyday after my coffee . I also do warm water and salt rinses as well. And I brush my teeth with peroxide and baking soda..Not a fun journey, my last medicine regimen stop working. I'm praying that this works. I have MBC was stable for 2 plus years and it now spread to my bones. I stay positive and strong and active. I'm only 59 and have so much life in me. I have been battling cancer for 3 years.

Sending lots of love and prayers your way. Sorry didn't get your name. God Bless 🙌 🙏

[13plus in reply to BaileyJames]

We are close in age and spirit though my body hasn't been moving so well recently but I do what I can and keep moving. I would've thought peroxide in the mouth would be an irritant to the gums? I've been told to use this dexamethasone x4 daily. I'm wodnering if that's the norm - seems a bit excessive but what would I know 😄

[BaileyJames in reply to 13plus]

That's what my Dr prescribed the dexamethasone,however it has a steroid in it and I can't use it at night because it keeps me up. Have a wonderful weekend. Stay Cool 😎

[Kerryd22]

I took mine in the morning at the start but then found it was better to take it at lunchtime as I wasn’t waking up at the same time every day. I don’t think it matters what time of day as long as you take it around the same time each day.

[13plus in reply to Kerryd22]

Yes I’ve always avoided pills to early in the day for exactly that reason! I’m more of a night owl 😂 Did you use the mouth wash religiously?

[Kerryd22]

No I didn’t use anything at all after the first four days. I’m not recommending that and the CNC who rang to see me how I was going with it was quite alarmed. It worked out okay for me but there’s no guarantee with anything. I just decided that going back and forth 9 times a day looking at my mouth was not for me! Beside the mouthwash there was teeth brushing through the day and there was something else too but I’ve forgotten what that was. 😂

[13plus in reply to Kerryd22]

haha I know, it’s a lot! Which is why I was very curious how often you did it . I’ll see how I go trying to stay to protocol for now

[Kerryd22 in reply to 13plus]

Thats a good idea and really I should have too but I was early in my treatment. I looked at the results from the trial and only 60% of patients had the mouth ulcers so in my innocence and naïveté I decided that meant I wouldn’t have to worry as 60% meant that not everyone would get mouth ulcers. Why would I? Side effects don’t work like that though. 😂. I know that now so while I share my own experience, I don’t actively encourage it as getting mouth ulcers simply because you didn’t take the opportunity to get ahead of it by taking precautions would lead to regret. Regrets? I’ve had a few but not this time fortunately. The CNC told me that it generally occurs in the first six weeks and hopefully you’re one of the 40% who don’t get the mouth ulcers!

[13plus in reply to Kerryd22]

Lol, that's pretty funny, I can see your logic though 😂

[Whitaker]

I’ve been taking that combo for almost a year at night and just read it’s better to take in morning. Does anyone know why?