Abemaciclib causing diarrhoea with sweet or fried food - anyone had this?

Hi Fight 

I’m sorry to read about the side effect you're getting while taking abemaciclib. I haven't had this drug but noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

I presume you've contacted your hospital team about the diarrhoea it's causing as, although it's a common side effect, this information from Macmillan about it suggests you should speak to your hospital team.

While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

I didn’t notice any particular reaction with fried foods and I eat very few sweet things. Salad, green veg and pulses caused the diarrhoea i had in the first 6 weeks. I can eat these things again, but avoided them for a while. I still cook veg a bit softer than I used to. I’ll be 12 months in at the end of this  month, but have had 22 days off for infections, longest spell being 10 days when I had Covid last summer- worse than previous 2 times of having Covid before I had cancer!

I notice from post above that you’re having a break, I hope you get settled perhaps on lower dose and manage to have a good holiday! xx

Hi, it's a case of trial and error, what effects one person might not effect another. You should be given anti diarrhea drugs, but if you are noticing that these foods cause it, then don't have them. If that's a struggle or you know you are going to have them, then take the anti diarrhea drugs before you eat. I have IBS , and also had c-diff, so I can't take the anti diarrhea drugs, I am on a very restricted diet, and tend to stick to the same things, especially for breakfast and lunch, when the drug is at its highest in your system. By tea time, I can eat a bit better, but still have to be careful on what veg I have. Hope this helps. I have been on the drug for over a year now. Hope you enjoyed your holiday. If the high dose is causing you too many problems, they will drop it down. It will still work. I am on 100g twice a day, and someone I knew, could only manage on the 50g and still took 2 anti diarrhea tablets every day. 

Hi everyone

jumping on here because I am day 3 into taking Abemaciclib and in the night the side effects started….woke up with a mild cramp, went to the loo and whooosh. The cramps were then so bad on the loo my partner had to come in and sort me out. The sudden diarrhoea I was prepared for but I also had a flash fever, sweating, shortness of breath, went white pale and dizzy. Then my hands and feet cramped up and were locked up in a spasm- that was really scary. My speech was also a bit slurred. This all only lasted about 10 minutes, during which my partner was able to get 2 loperamides and some electrolytes down me. Then I recovered quite quickly and went back to bed, albeit a bit shivery. I feel fine this morning.

im going to call the nurses today to report this reaction, but wanted to see if anyone had had the hand and feet spasms? Im wondering if it was kind of a panic attack linked to the cramp pain, or if the drug itself caused them. 
its useful to know that diet can help manage that diarrhoea - perhaps chilli on my stir fry last night was not a good choice! 
Thank you 

Hi, yes definitely call the nurse, and probably what you ate the night before was not a good idea. I have had bad diarrhea, but never during the night, and never as bad as that with the cramping hands and feet. Cramping stomach pain yes, and needing to go several times, but that was usually within an hour of eating, and did end up in hospital once for 24 hours because I became dehydrated, because I got to the point where I couldn't keep fluids in. Then got told off for not taking the lopimide. I then had the tablet reduced to 100mg. 

Most people find eating raw veg, or  veg only half cooked a problem, spicy food and greasy food. But, it is mainly trial and error, keeping a food diary might help, to see if you can see what you ate and when you get diarrhea. 

I know I am not the normal as I had antibiotic induced c-diff last year, and now I am not allowed to take the lopimide, so I am managing by diet alone,  so I don't have much fruit, bananas or cooked apple. My veg is all cooked to mush, and is limited, because there is a few that caused me problems. I also eat smaller portions and snack in-between, mainly dry biscuits and crisps for snacks. But until I had c-diff, I was told by someone from McMillan not to be frightened to use the lopimide, it is safe to use.  I do know someone who took 2 every morning, then dealt with any consequences in the evening when she was at home. 

So my advice, report to the nurse, keep a food diary. Then if still struggling when you see your consultant, ask for it to be reduced, if the nurse hasn't said anything different. Take care and good luck. 

Hi Fight,

I also noticed increased diarrhoea with fried foods. I don’t eat a lot of fried foods but when staying in bed and breakfast I ate the fry ups and it wasn’t until the 3rd time that I linked the fry up with the severe episodes of diarrhoea which followed later in the day. 
I have managed 21 cycles of Abemaciclibat the 150mgs dose. We are all different but I’ve found this drug challenging at times.  I am on my second day of reducing my dose down to 100mgs so I’m hoping this relieves the symptoms and makes the last 5 cycles more manageable.
What I have found that has helped manage my symptoms, has been taking loperamide prophylactically if I was going out for the day. I also bought Imodium instant from Boots, which I used if I was out and getting cramps or diarrhoea. These tablets are £3.20 for 6 tablets which you place under your tongue and they act quicker than the tablets or capsules of Imodium. I also wear a panty liner as the rectum is not built for holding fluid and on a couple of occasions I have leaked a little fecal fluid. I apologise for being so graphic but in 21 months this has only happened twice and fortunately the panty liner did its job. 
Some ladies do not have diarrhoea when on this drug and all our experiences are different but I feel the potential benefits of this medication outweigh the side effects. I wish you well 

Hi new to this group, have in fact been waiting for abemaciclib to appear!! I managed a week but felt terrible, diarrhoea, sickness, tired, loss of appetite, see cancer nurse tomorrow in the hope she will reduce the dose.

Also taking letrosol which I'm managing ok up to now, you just wish after surgery , chemo, radiotherapy when will it end  you just want that life back, but we will carry on because we will persevere and get there it in the end!!!

Love and hugs to everyone, hang on in there.

Yes definitely speak to the nurse, who will speak to your consultant, so hopefully it will get reduced. Just try and drink plenty of fluids, to stop you from getting dehydrated. Love and hugs to you too. I can't say it will fly by, because I have struggled, and now can't wait for February next year. Now I am struggling in the heat too.

Many thanks for your reply Pooh Bear,  will have a word with my cancer nurse tomorrow

Gx