Abemaciclib

Katie46

Hi all, I started taking abemaciclib a few days ago, and I have a few questions. Do you dispense the tablet from the blister pack into a little cup and take it (I've been given some)? Also, what do you do when you go out? I'm not always going to be at home when I need to take it, and it's going to be a real pain carrying little cups everywhere for 2 years. The information on line seems to say you shouldn't touch it, and wash your hands immediately, which I find bizarre for a tablet you need to take twice a day over a prolonged period of time. Obviously I wash my hands a lot, but what if I'm not near a tap. It would be good to know what everyone else is doing.

arpie

Sorry to see you join the group @Katie46 - feel free to fill us in on your diagnosis/surgery/treatment up til now to get a 'fuller picture' of your story so far.  

I didn't do chemo or take those tablets - but I reckon, with a bit of practise, You should be able to just 'pop' the foil on the blister pack and drop the tablet from the pack directly onto your tongue?  They may just be taking precautions in case the protective coating 'breaks down' if someone has washed their hands & 'melts' the coating & the active ingredient then comes in contact with your flesh? (I am just guessing, really! )

Or you could just drop it onto a tissue & pop it into your mouth?

Maybe also ask your Onc and/or chemo nurses (or Breast Care Nurse) about it!  Sounds pretty extreme to me!

Info from others (who've taken it) is here .... you may be able to glean some info from them?)https://onlinenetwork.bcna.org.au/search?domain=all_content&query=Abemaciclib&sort=-dateInserted&scope=site&source=community

take care & all the best xx

Katie46

Thanks @arpie, it did sound a bit extreme, and I'll ask my oncologist the next time I'm in there, maybe the nurse was being super super cautious. I never thought of using a tissue! 

After all the various treatments, to be annoyed about carrying a little cup around also seems a bit extreme, but here I am, feeling defiant and tantrumy. 

On the bright side so far none of the long list of side effects have appeared yet, although it's early days.

Katie46

I spoke to my breast care nurse and they said that preferably I should be the only one to handle the tablet and to wash my hands after. Keeping the pack in my handbag in a zip lock bag was totally fine and safe practice. If around kids make sure they can't access it, which applies for all drugs anyway. 

I'm into my 4th week and getting low grade diarrhoea, which I hope will settle down as I otherwise feel fine. 

melways

That's interesting I've been on it 6 months and was never told anything about not touching it etc 😬 I dispense all my meds into a weekly tablet holder that comes in a little carry case so I can take it with me as needed. 

Katie46

Hi @melways, I think the nurse who originally gave it to me was being super cautious. I asked my breast care nurse and she was more relaxed about it she said ideally other people shouldn't handle it. She said it was fine to have it with me in my handbag, just to be careful if kids had access to it, which I assume would be the same advice for all drugs.

I'm taking a break from the abemaciclib at the moment, the low grade diarrhoea never settled down, and I was starting to feel awful, so I have 4 weeks off and will try again with a lower dose. I  was on 150 x 2 a day and they will drop me down to 100x2 a day. Hopefully I'll be able to tolerate it better at a lower dose. 

melways

@Katie46

I was on 100mg 2 months fine then increased to 150mg 1st month ok second month awful diarrhoea etc. back on 100mg for 2 months now and I'm fine again so hopefully you will find relief on the lower dose too

Katie46

That's good to hear @melways, fingers crossed the 100mg works for me too.

Katie46

Hi @melways, I've been on the lower dose abemaciclib (100x2 per day) for a month now, and it's so much better. None of the nasty side effects I was getting on the higher dose, which started a week or so after I started taking it.

I seem to be able to eat normally without consequences, although my appetite it reduced.

I hope you are still managing to avoid side effects.

melways

@Katie46 that's so great to hear. My SIL actually started on them too but same issue on 150mg she's now on 100mg and doing great. 

I'm still doing well and it's working on my Mets which is so good so hopefully that continues and I stay clear of side effects ☺️