Verzenios / Abemaciclib experience

I've just started week 3, had review yesterday, my bloods were fine, I've had a couple of times where my tummy has been a bit wobbly but nothing major & resolved with 1 diarrhoea tablet.  No hair loss.

Next review in 2 weeks x

I read it as 3 years from starting the drug, but id have to go back and re-read the paper to be sure.

Thank you- I re-read it, but still can’t work it out if I’m honest. If it’s from starting the drug then that’s really promising.

how are you getting on with being on an AI now? I finalllly managed to get my onc o agree to switch me from tamoxifen to one this week. Have to wait another four weeks but I’m worried I’ll look a pain if the side effects are so bad that I’m then asking to go back to tamoxifen after all my mithering about it x

I am finding the AI OK. I have had to fiddle around with brands as coatings make such a difference to side effects. My poor body was a bit shell shocked the first couple of months and I was super tired. I quickly adjusted and am now much better and more often than not my normal self these days, just pacing myself a little. Perhaps the most challenging thing for me is the genitourinary symptoms. There are some great creams for that, all prescribable by GP, including the YES brand. Something internal can be helpful at times too. My oncologist is already suggesting swapping back to tamoxifen. every so often to give the vaginal mucosa a break. I am so not ready for that yet! But maybe in a couple of years, I might agree to a month or two off (but on tamoxifen) and then back on again. Who knows?!  Theres also the skin and eye dryness, easily sorted with eye drops and eczema creams. Little by way of joint pain, which is a common complaint and can be quite uncomfortable for some of us. Exercise helps with that strangely. I find high fat foods, and sugar exacerbate any joint twinges.CBD tablets help with hot flushes and mood, but they may not be your thing. Honestly it is fine but needs a couple of months to get in to a rhythm with it, and if a brand doesn't suit you, try something else. I keep my prescription on the "spine" now so that I can shop around to find the right brand. I am using the teva brand of anastrozole. Others say accord is OK too. Sunpharma is one to avoid.If its all too much, don't feel bad about changing back to tamoxifen. It has to be a balance between treatment and quality of life. You can always give an AI a go in another couple of years or even 5 years time and you might find the experience very different. The oncologist will be very understanding with what you decide based on how the AI affects you and what you can live well with. You've done so well to get this far and its great to still have options looking ahead too xx

Its a tough one re abemaciclib - to take it now for 2 years or reserve it for later. I wish there was a test to show who would benefit now and who it wouldn't!

Thanks for the advice. I’m definitely more nervous about starting abe than AI- I joined a fb group for verzenzio and people are writing about loosing their hair and eyebrows all over again on it and not making it to the bathroom on time. Sounds awful. Very apprehensive. And it is a tough one as might be taking it all for nothing. I’ll be keeping an eye out for the 4/5 years results if they publish.

yeah, I think I’ll do the AI for 5/6 years then go back to tamoxifen as I believe it has a longer half life so offers protection for a few years after you finish taking it, whereas I’m not sure AIs do that. I don’t know. Guess I’ll see where I get to and how I feel in a few years. 

Xx

Hi, I'm just completing my fourth week on abemaciclib. No hair loss......had a few wobbly tummy moments but resolved with a diarrhoea tablet.

I'm really hoping I can take for the two years as I'm a high risk if recurrence & oncologist says that the first two years after diagnosis are the most crucial.

So, anastrozole for 10 years, zoledrinic acid infusions for 3 & abemaciclib for 2........see how it all goes

Beat wishes x

Thanks- I’m really nervous about the eyebrow s and hair after just getting some back. I know it’s not the main thing in all this….

also worried about working In the office of the stomach issues are as bad as some have said.

I’ll stock up on immodium before I take it. All the best to you too xx

I was really worried too, my hospital gave me anti sickness & diarrhoea tablets when they gave me the abemaciclib tablets.

I thought they were worth trying & if not suitable could stop. I'm being really closely monitored too.

Good luck x

Hello, I finally started on abemaciclib today. I was also given a supply of anti-sickness and loperamide in case of GI side effects. I’ll keep posting here with updates on how it’s all going. Xx