Abemaciclib - normal diet or restricted diet from day 1

Hi Libwithlob  I’ve been on it for 20 months, only 4 more to go. I haven’t had to change my diet at all. Always eaten healthily - not too much red meat, plenty of fruit and veg and protein.

Stomach was a bit dodgy in the first month or so but it didn’t affect my appetite. If anything I’ve started eating a  bit more than I did before - purposely - to support my return to strength after cancer and my quest to get muscles back.

Best wishes x

Hello, I'm on cycle 12 of Abemaciclib, main issues have been fatigue & diarrhoea. I had a dose reduction at cycle 7 which helped a little.

It's seens to vary widely, I have had to alter my diet unfortunately, as fruit, salad, veg & whole meal & lots of fibre cause problems. I can't wait to get back to normal! But lots don't have these problems, I think you just have to see how it goes

My hair grows slowly & is much thinner & my nails rubbish,but I truly hope this drug helps give me a cancer free future.

Best wishes x 

Thanks NBl for responding and giving me hope that I might be able to enjoy food.

Thanks Kitty1 . It does seem that the experience of taking abemaciclib is so varied. Just not knowing how my body is going to react is the worst bit.

Hi, I started on Abemaciclib last October - I wasn’t great on the 150mg dose but have tolerated 100mg pretty well. I haven’t had to change my diet because of the medication (also a bit of a foodie ). I have occasional bouts of diarrhoea but it’s not linked to a specific food. It looks like we’ve all had wide ranging experiences with Abemaciclib - I’m happy to stick with it if it’s giving me a better chance of avoiding recurrence.  Good luck with it. Xx

Hi. I’m on dose 13 and struggled in the beginning. I ended up being hospitalised because the diarrhoea was uncontrollable. My dose was reduced twice as a result and I have been fine in the main, since.  

at my last appointment I suggested going back up a dose as I’m doing so well but my Oncologist said there would be no improved benefit. Apparently once your body has the dose that it can cope with there isn’t any evidence to say there is less protection at a lessor dose so no point in increasing again.  

I should say, food wise, I never noticed any particular triggers. 

Hi, I am really struggling with taking abemaciclib. While I am at home I seem ok, but then I worry about going out and getting caught short. I have changed my diet to keep it as low fibre as possible because it caused problems trying to stick to my normal diet. If I go out I take a lopermide before lunch and try not to eat or leave it as late as possible, and only eat a small amount, but then I suffer the next day with constipation. I just don't know what to do. Doesn't help that I have piles and have really suffered with them. I have already had my dose reduced and as I said, when I am at home I am fine. 

Hello Libwithlob.I read your post from a year ago ,and it could have been me that had written it as so similar. I have gone through chemo,mastectomy with reconstruction and 15 sessions of radiotherapy and have managed pretty well through it all. Life has been getting back to a reasonable normal - My hair is growing back well ,I did 3 aquafit classes last week and I'm happy that I look OK in a swimsuit and clothes but mainly that I feel so well .We had a wonderful family holiday 2 weeks ago and have a holiday booked for Menorca at end of Sept .However ,the fly in the ointment has been the suggestion that I take Abemaciclib for 2 years .Everything I read about it absolutely terrifies me with side effects similar to chemo ,and reading awful stories about diarrhoea. I started taking Letrozole 3 months ago and have had no problems with it .I had thought that after a year of treatment and some long term medication ,I could put it all behind me but then up comes the prospect of another 2 years feeling awful & a continuous series of hospital appointments. I had a pre-assessment appointment today when I was hoping to be able to ask a consultant some detailed questions .Unfortunately, it was basically just a tick box exercise with the aim of getting me on the drug after briefly rattling through side effects. I said that I need to know a lot more about Abemaciclib eg,why so many people have to have doses reduced ,why is letrozole not considered ok on its own now ( Abemaciclib is a fairly new drug in medical terms), people are told reduced doses are still effective so why be given high doses that it seems the majority of people cannot tolerate .Even the chemo nurse today said they have 'some people' who manage ok ,so that hardly filled me with confidence. 

Anyhow ,I have asked for an appointment to see either the oncologist or someone with indepth knowledge to answer my questions before I decide to go ahead with taking it. I have been very positive throughout my treatment, but last night and this morning have felt so  low at the thought that this is all going to drag on for another 2 years.Even just going through the door of chemo unit today made me want to cry ,but never felt like that when actually going in for chemo.

Sorry to go on so long ,but what I really wanted to know is if you arecstillnon Abemaciclib and how have you managed with it ? Thanks 

Hi Caff1 

Wow where has the year gone. I am still on abemaciclib. Half way through the two years of treatment, on cycle 13 I think. I won't say it is an easy experience but it has been better than I feared. 

I have had a dose reduction so I am on 100mg. The dose was reduced at cycle 4 or 5. The evidence shows that it still works. Probably the research was on the larger dose with the option to reduce it to help with side effects. 

My tummy is a bit fussy now. So I avoid eating dairy and anything greasy which seems to set off the diarrhoea. So no cheese, cream, fish and chips etc. Do still have milk in cereal and tea and coffee. Luckily the dairy free options don't upset the tummy. If I do have an episode of diarrhoea it is usually first thing in the morning so I dose up with one loperamide and I am ok for the rest of the day. If it is really bad two do the trick. I can usually tell when it is going to happen as I get an uncomfortable tummy. Or I know I ate something that might flare me. 

I have hardly had any issues when I am out of the house. But my breast nurse did offer me a card to show people if I need access to a toilet quick but I haven't taken it. I always carry loperamide with me just in case.

Yes the monthly trips to the chemo unit to get the tablets are a bore but they do my zoledex injection at the same time. I have worked out the optimum time to go 4.30 on my day off. This disrupts my life the least but it did take a few months to get to that point as you do need to have bloods taken regularly for the first 6 months.

For me it was the reduction in the risk of the cancer returning was big enough to give it a go. But I will be glad when I can relax a bit on what I eat. 

Maybe I have been lucky to that it hasn't been too bad. I hope you are too if you decide to go ahead.

Sorry for the long reply.

Hi Pooh bear 

Sorry you are having such a hard time.

I did find it did take a while to get the balance with loperamide. I find one tablet is better to than two. Two does make constipation more likely. I only use two if I have multiple episodes of diarrhoea in quick succession. I haven't tried taking before I experience symptoms as I think I am quite sensitive to it. I prefer to avoid trigger foods. 

My flares are dairy and greasy food and usually it will be first thing in the morning so I can dose up and be ok for the rest of the day.

My piles have been better whilst taking abemaciclib but maybe that is related to the diet. 

Hope things improve and you find a balance that works for you.