Hi @louies-mum - how quickly were you able to get back to work when starting Abemaciclib?
I’m doing really well although I’m aware it’s early days. No side effects at all for the first 2 weeks but now the cramps and diarrhoea have started. It’s not all the time but at least once a day. Tends to be in the afternoon. I’m only on week 3 and I’m hoping it will settle down again. Trying some dietary things. Will update you with my progress!
Not back to work yet. I’m on week 3 of the drug and I’m planning to return in a couple of weeks. I’m hoping to negotiate flexible working as the cramps and diarrhoea seem to be an afternoon issue. I need to get back to work financially and HR are not being very nice. I’m nervous about it but I feel well enough to give it a try.
That’s interesting - thank you for the update. I expected side effects from day one and the body then adapting. Wish we could go straight on to the lower dose like you can with ribociclib
@louies-mum @jbb @sunshineandunicorns
Just wanted to let you know i am now coming to the end of my 24 cycles of abemaciclib, at 150mg twice daily.
It hasnt always been great, i lost about 2 stone in weight and really had to fight to stay on it/maintain current weight. I found toilets at work that were less used and therefore no queue, tracked toilets if i went out, curtailed shopping early and gone back later in the week because of pre-toilet cramps, carry wipes/tissues in case no available toilet paper… i will take loperamide if i go 2-3 times in the day (get constipated if take so dont rush to take every time which is possibly why i had weight issue).
I have had to pause it three times- a few days when i had covid and dental extraction, just to make sure I could fight infection, then back on it again.
However most of the time i have been fine, i have been to seville, hungary, austria this year, been to theatre/musical shows, car rides of 2-3 hours to visit family. I also worked full-time for about 12-16 months of the 24 (although would have struggled if customer facing or restricted from going to the toilet when i needed).
Like most things, you will learn patterns or what upsets your tummy,
Sometimes things are outwith your control such as blood results, so you may have to reduce/stop if your body not coping.
You can have reduced dose which is effective too, if 150mgs just isnt for you.
So you can only try, keep an open mind and see how it goes for you…
To be honest, i would stay on it if it were an option as it feels like an additional measure at holding off recurrence/spread (even if just in my mind),
Good luck
Laura
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Thank you so much for this. It’s being tied to the loo that worries me as I would like to try to have a normal life - as much as I can in the circumstances- after ten months of treatment - chemo, surgery, three weeks of RT. I work full time and not sure how I could do that whilst on the full strength
This also worries me too and being tied to being at home sounds awful.
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I was the same but only thing I was worried about was diarrhoea but as it happened I was fine. I gave up Caffeine and this made a huge difference. In fact only slip up happened when I succumbed to a cup of tea whilst travelling.
I also didn’t drink on the days before I went to work just in case and cut down my alcohol consumption considerably.
I started a week before going back to work. I am doing very well on it and I would say if you can start with higher then do.
One other thing that made a big difference was Imodium melts they are fast acting and if you are worried about a work meeting for instance as the worry itself about diarrhoea could bring it on then these tablets were great to calm everything down.
Also drink plenty of water.
Consider time of day to take the tablets. I found taking them two hours before going to work better.
All in all these meds have great results so hoping they work.
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