Yes - started on 150mg - and just begun month 5. they are monitoring bloods closely as ALT are rising, but so far so good.
Also - want to add that I think I know why my upset stomach took hold. I waited half an hour until I took 2 x loperamide - but you are meant to take immediately … my excuse it was middle of the night and I wasnt awake properly !
You’re doing well then being on max dose. I’m starting on 100mg , end of the week. What time do you take your tablets @jolou ?
I take at 10am and 10pm.
Good luck - hoping it will be manageable for you!
xx
I’m just finishing my third pack & it’s not been easy. For anyone reading here’s a few thoughts from me so far:
So that’s a few thoughts-welcome support from anyone else struggling but also really want the good news & how to manage it better stories please 
this is certainly an amazing drug but it’s hard on the body. I will keep going though xx
Hi @whataloadof
I haven’t been on these forums for a few months, as I’m trying my best to put all this behind me! But for some reason came on today and read your post.
I’m about to start Cycle 9. And have to say that suddenly the whole 26 cycle thing seems completely achievable. But back on Cycle 3 I was having a complete nightmare and had diarrhoea almost every day, it didn’t matter what I ate or didn’t eat, and I was really worried about how it was affecting all my other tablets (letrozole, adcal, ibandronic acid). It was never more than 3 bouts a day (4 loperamide) but it really affected my way of life, and I felt more housebound than I ever did during chemo as I was scared to go anywhere or do anything with the diarrhoea being so unpredictable. I felt like I might as well drink coffee and eat takeaways because why not when it doesn’t make any difference how “good” you are! So when I had my monthly phone call that month, I told them exactly how I felt - I wasn’t sure the diarrhoea was “bad enough” for them to do anything, but they gave me a 2 week break, then my oncologist phoned me (it’s normally a nurse) and dropped me to 100mg no quibbles at all.
Since then it’s been so much better. I do take 1 loperamide pretty much every day as a precaution (they are happy with me doing this). I have maybe 2 or 3 bouts of diarrhoea each cycle, sometimes just because, and sometimes I’ve tried a food that doesn’t agree with the tablets. If I’ve taken 2/3 loperamide one day I then have a day or two off them before I go back to 1 a day. But basically I can live - I can go out for meals, shopping, cinema, walks and not worry, which makes it feel a lot more bearable.
My bloods have been fine throughout, even when I struggled mentally with Cycle 3. My nails have had black spots appear but they seem to be growing out. I think my hair is ok, it might have slowed up but it’s thick and definitely growing if a bit out of control at the moment! My energy levels are also ok, I’ve been back at work since a few weeks after I started, but I am only part time and don’t know if I’d manage full time. I do have the energy for gardening and housework on my days off, and cooking evening meals - silly things, but they all help you feel normal. I’m normally ready for bed around 10, but am an early bird and am still waking around 6 - 6.30am and feeling rested. I don’t need naps or rests during the day at all.
I definitely struggled with fitness early on, I lost a lot of fitness last year with the surgeries and chemo, and think the radiotherapy must have hammered my lungs as I felt very much like I was recovering from a nasty bout of flu breathing wise. Lots of wheezing and gasping! But I have slowly and surely been building up walk/hike lengths through the year and there has definitely been a massive improvement - so keep plugging away at that, you will get there. I think it’s easy to underestimate what we have been through physically, and what an invisible toll it must have taken on our bodies.
I honestly think you should try the lower dose if you can - it works just as well, and we deserve to have our lives back! I feel so much more like me now - more positive, and very much have a “17 more cycles? No problem!” attitude. I’m also confident if I did need to drop again at any point, they wouldn’t argue with me. I’m still having monthly bloods and phonecalls, so know the team are keeping a close eye on me.
I think you will be amazed at the difference a lower dose can make both physically and mentally - it’s not a sign of failure, lots of us can’t tolerate that high dose, and I really wish they’d just start us all on 100mg.
I hope that helps you a bit. Big hugs xx
@bramble1 Oh my goodness it’s like you heard my bat signal for help today! This is exactly what I needed to read-every single detail is exactly what’s gone through my head & was thinking through. You’re so right in so many ways here and truly couldn’t have read anything more helpful today, I’ve got my bloods on Monday (start of pack 4) so my nurse call on Tuesday & after reading this you’ve confirmed that I want to switch to 100mg from pack 5 onwards. Thank you so so much & please do stay in touch in the coming months & I’ll keep this updated too with how I feel after the change. Big hug xx
I’m so glad it helped! Hope the bloods go ok on Monday, and let me know how they respond to your request to drop dosage xx
@whataloadof that sounds incredibly tough for you. I knew that I was not prepared to go on the max dose as I’m working full time and already still very fatigued from all the treatment this far.
My oncologist was in complete agreement to start at 100mg, he said he doesn’t put people on 150mg as very few can tolerate it.
It’s a fine balance between taking the meds to help prevent reoccurrence and quality of life. Please don’t suffer, talk to your team and discuss reducing your dose.
It’s so encouraging to hear your experience @bramble1 , thanks for sharing. I start abemaciclib tomorrow. I’m so apprehensive about the prospect of going back to chemo days. After reading your experience, I feel more positive about things.
@trixie17 Good luck for the coming days. I had some nausea in week 1 but that passed quickly. Really interesting to hear your onc’s view & comfort at 100mg dose. Our bodies have been through so much & then we layer in something else that is really hard. I am so grateful for this drug & the extra protection it’s giving us but 2 years is a fair amount of time to have to grin & bear it. I simply couldn’t get up this morning so missed my fitness class but I’m giving myself a break. Bloods in a bit. I actually had a completely normal poo yesterday which has been missing since starting this-the things I’m excited for now!! On a day like yesterday I think I can do this but then this morning reminds me how compromised my energy really is & I’m not back at work yet so I am going to accept the dose reduction offer. With chemo I was at 80% of dose from round 2 on as simply couldn’t function at all after EC round 1. I just want to get through this & feel strong & full of beans again-I’m such an active do’er & just want to be back to that & I have to go back to work as I’m single so have to pay the bills! Thanks ever so much for your kind support-stay in touch xx
Hi there,
I have posted before on my reccies for managing so hope not repeating so here goes; I am coming to the end of the two years and feel I got through it pretty well. One thing on the efficacy, this drug completes its job after two years and any longer is pointless (my oncologist said) as I was worried about coming off. Just thought it would be good to share that. Also this was a big breakthrough drug so hoping it works for me long term. Here are some tips;
-Be mindful of Alcohol. Like anything it really affects digestion so going to lower alcohols works best such as Prosecco instead of wine and being careful.
-Definitely no caffeine this was very helpful so I switched to caffeine free drinks.
-Be mindful that milk can be a trigger too although was ok for me.
-Watch the amount of olive oil as I didn’t know this was a known cause of diarrhea too. (Only when it comes to a lot in salads for e.g.)
-I would sometimes take my morning dose after a meeting if I was concerned as nothing worse than stressing if you might have a cramp.
-The Imodium that’s on prescription worked way better for me even though it’s the same. I took one tablet every evening as a preventative and it was great.
-I also had the Imodium fast melts in my bag just in case.
-For me an Abemaciclib cramp was very different than a normal bout of diarrhea. I would get a strong pain and then have to go within 3-5 minutes and so there lies the problem. Thankfully in nearly two years I had only two nearly moments and learned from them.
-It did make me tired and my fingers were also very dry and no amount of cream could fix my pealing fingers. My nails were bad too.
All in all however I feel very lucky to have got this drug. For me the side effects were way more scary than the reality and with a bit of preparation and consideration of diet it makes it a whole lot more manageable.
Also interested to hear from those who are now finished the course and how they are doing?
Good luck!
Hi, thanks to all of you who contributed your top tips, would love to hear from those who have finished 2 years or are nearly there.
My update is that I only managed 2 weeks on the 150mg - things never really settled down, so I when I went back for my first review, I was expecting that they’d want me to stick with it for another couple of weeks, but no, she said to stop taking them immediately, to have a 2 week break, and then drop down to the 100mg. I actually ended up having a 3 week break (it was my birthday at the weekend 
) and I’ve taken my first 100mg today. I’m anxious but hopeful. Back to keeping my food diary.