Abemaciclib

Sorry no one has replied, this will get you back to the front where hopefully you will get answers.  love from Ann

Hi

cant offer advice on the side effects but I am glad to see this drug is becoming available so quickly and more and more people are being offered this over the last week or so. I hope this will be available for me very shortly. 

Let us know how you get on with it xx

I don't think this has been approved in Wales yet but I hope it is soon as I am high risk x

due to start after radiotherapy.  All I really took in was that it can reduce the likelihood of reoccurrence in those that have had lymph node involvement to 6%. Good luck with it. My onco said 4 or more nodes and you may qualify

Thanks.  I will do. 

Yes its 4 or more nodes or

1 to3 nodes with grade 3 disease or tumour greater than 5cms . 

and to have been started on an oestrogen blockers no longer than 12 weeks ago.

Onco said main side effect is diarrhoea which settles after a few weeks. There is a whole list of other side effects on.the literature but it's worth a try if you get offered it. 

Xx

Hi Bobbiboo I’ve been on it for nearly 6 months now. Seem to be managing ok so far.. I responded to another post about it a few days ago;

https://community.macmillan.org.uk/cancer_types/breast-cancer-forum/f/new-here-say-hello/241663/abemaciclib-and-letrizole-new-approval

You should be monitored very closely to start with, to see how it goes. I’ve just moved off blood tests every two weeks, to monthly. 6 months down, 18 to go! 

Hi NBI

are you on it for primary bc do you mind me asking? Or are you private care to have been on it six months? I’m glad it had been going well for you. Xx

can I ask please if you have had any hair loss? mine is just started teeny sprouts x

Hi hev999 and Hel39yes, I’m on it post primary breast cancer and yes, I’m receiving it privately. I don’t meet the full criteria under NICE guidelines but my oncologist recommended it - so my insurance company are paying for it. 

No head hair loss - that seems to be growing well. I cold capped during chemo last year and didn’t lose it all, it  just went thinner but it’s recovered. Hair on my legs and arms is a bit sparse but that’s a bonus I think!

I was terrified when I first read the side effects - I know I’m fortunate to get it in the circumstances but at first it didn’t feel like that. I agreed to give it a go thinking I would stop it if side effects were too much but so far it’s not interfering with normal life and I feel well.

And hopefully it is only for 2 years. Yes, I’m still frightened of recurrence and I do think about the “what ifs” if it does, having already taken something that is also used for secondary treatment. Try to push that to the back of my mind as much as I can.

I hope you have the option to try it and get on with it ok xx

Thank so so much for taking the time to reply and I'm pleased you are having a positive experience with it, we are learning from you x