Abemaciclib, how are you all doing ?

Hi Dollydimple glad to hear a dose reduction has helped some. I’m also on 100mg and this seems to suit me. I’m now fast approaching the end of my time on Abe, as I finish my 2 years in December. Not that I’m counting or anything!

Neutrophils have been up and down, reached the heady heights of 2.4 for a couple of months, then around 1.9 for a while and this month 1.2. Think it’s just the way it is.

I’ve previously commented that I’d felt a bit fatigued but I didn’t actually realise how much until I had a two week break in April (for symmetry surgery). I really noticed how much more energetic I felt during that break, even after GA/surgery. And then I also noticed the fatigue return as soon as I started taking it again.

I guess when I started taking it in Jan 2022 I wasn’t at full strength after a year of active treatment and perhaps didn’t notice because it was just ongoing maybe?

Other than this I think I’ve been very fortunate not to suffer other SEs. 

iIt’s also given me a little hope that when I finish later this year, I might get a bit more back to being me.

Fingers crossed….and the same for everyone else taking it xx

Hi, I'm just finishing cycle 11,so neatly a year lol. I had dose reduction at cycle 8 which helped calm diarrhoea to twice a week on average, but still a bit fatigued 

My hair grows slowly & has thinned, my nails are ridged & break.

I just hope it does the job and I don't get cancer again!

100mg twice a day is better for me. 

Not easy when mixed with anastrozole & Zoldronic acid infusions.

Best wishes & keep going x

Hi Dollydimple

I am coming up to 6 months on 150mg twice daily. Only side effects so far are having to rush to the loo now and again but I have learnt what to avoid eating and when so only have issues when I deviate from this. Luckily I haven't had any fatigue issues but my hair has not really grown back properly since Chemo so I am thinking now that this could be the Abemaciclib but difficult to know. 

Best wishes

L

Hey 

Oh wow you must be on the countdown for sure ! Amazing you are nearly done with it  

Interesting what you say about the fatigue , hopefully you will be back to yourself  quickly 

I think I notice the fatigue because I have had breaks in taking in due to infections and I realised I had more energy being off Abe 

anyway , I am grateful to be on it and it’s so fab reading your story and how well you have coped with it  

xx

Hey that’s so good you’ve managed to tolerate the 150mg dose in the main  , I spent most of the time in the loo at that dose ! 
Yea I’ve found my hair feels thinner , it was growing back quite well after chemo but it does definitely feel less full now 

all the best to you xx

Oh wow nearly a year , that’s fab  

my hair and nails aren’t great either actually but like you say worth is to hopefully stop the cancer !

No definitely not easy to cope with with the other drugs too huh 

keep on keeping on xx

Hi,

I think I’m on cycle 10 and doing pretty well. I dropped to 100mg dose after my first cycle as really couldn’t tolerate the 150mg. Bloods have consistently been good and I’m having fewer exploding bum episodes.
My hair has thinned significantly but I don’t have any obvious bald patches yet. My energy levels are good at the start of the day but I’m completely knackered by mid evening. I had a 2 week treatment break for my holiday in June and OMG the difference in my energy levels was incredible!   Still, I am happy to carry on with Abemaciclib - I feel incredibly blessed to have it as a treatment option. 

Good to see everyone else seems to be doing well xx

Hi, I'm on cycle 5 and already counting down! I'm tolerating the 150mg twice a day, and compared to some, don't feel I'm too bad.

Bloods have been good up to now, getting used to what food sends me to the loo very quickly so avoiding some things altogether now. I can honestly say that my entire life I've never needed the loo so quickly, I can be sat having a chat, absolutely fine, then literally within seconds.... got to go! It doesn't happen often though, thank goodness!

It's affected my taste and I've gone off a few foods, and my eyes water loads, that's been the worst thing for me. I work full time, so I can't really tell when I'm worn out from work or if its the tablets, and I used to nod off before I was on them. Some days are better than others.

Overall, I definitely know that I felt much better before I started taking them, but needs must. 

Hi, yes I'm on cycle 7 get watery eyes too having a break off Abe coz I had weak legs onclogist said go off see if it's the tablets.  Don't we all have to go through alot really lets hope it's worth it all