Hi, I'm due to start taking Abemaciclib next week and have been warned the main side effects are diarrhea and tiredness. I know I can take immodium (or similar) for the diarrhea but I wanted to know if anyone had any tips or advice for trying to lead a 'normal' life while on it. I know that about half the people who start Abemaciclib decide to come off it due to the side effects so I want to try and be prepared as much as I can as I really want to give it a good chance. Thanks x
Hi, I finished 24 cycles of abemaciclib 8 weeks ago.
As you say, the main problems for me were chronic fatigue, especially towards the end & tummy problems.
I adjusted my diet to low fibre which helped a bit. But it was a hard slog for 2 years. I just hope it has done some good & I don't have a recurrence
Some people seem to tolerate it better than others. You just have to see how it goes really. I had a couple of dose reductions along the way.
I hope it works out OK for you
Best wishes x
Hi, I’m a year into the 2 year course. I’m still on the full dose of 150mgs but it isn’t easy but I reckon it’s better than a recurrence which would mean treatment for the rest of my life. However I am having a relatively normal life. I have normalised the side effects and I take imodium before going out to prevent diarrhoea if I’m travelling or going out walking or cycling and toilets won’t be at hand. I have Imodium with me at all times. My advice is don’t think too far ahead. The first couple of months I found the most difficult. We are all different and our bodies react differently to drugs. Initially I felt light headed, had nausea and lost my appetite but these side effects have passed, although I do still get fatigued and have watery eyes.
I was really anxious before I commenced Abemaciclib but I can honestly say so far it hasn’t been as bad as I feared. I hope you have minimal side effects and I am sending you a virtual hug.
Hello, I started on Abemaciclib and I had the higher dose and did have side effects e.g diarrhea, after speaking to my consultant he reduced the dose, I asked the usual questions, is it less effective? he said no it works just as good and I haven't had any side effects other than recently watery eyes, I lead a normal life. good luck
Hi there. I'm almost a year in and still on the maximum dose. I've had very few side effects - the only serious one is consistently low neutrophils which the team monitors carefully but it hasn't made me ill. I do get occasional stomach ache (no diarrhoea though) and sore crusts inside my nose. Otherwise I feel completely normal. I feel lucky to have got off so lightly.
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