I’m due to finish my 2 years on abemaciclib at the end of April. I’ve been quite tired, but not too afflicted by the diarrhoea and abdominal pain as it settled down really well within the first 2 months. I have had various symptoms and infections and a tendency to watery eyes, sinus headaches and UTIs.
I will carry on with letrozole for nearly 3 years more, but I’d been taking it for nearly 5 months before the abemaciclib and I hadn’t had much problem with it.
Anyway, I’d be interested to hear how it’s been for people who’ve completed their 2 years- I’m a bit worried that I’ll feel just as tired etc as I do now as the letrozole will have more effect on me than it did before.
I’ll obviously find out I suppose and might take more interest in which brand I get if I’m finding I still have a lot of symptoms..
Hello Cynoptimistic … I think I read an earlier post from you regarding abemaciclib and potential symptoms of peripheral neuropathy. I did have some mild symptoms of this from paclitaxel … I have about another 8/9 months to go on abemaciclib … I am very fatigued, hair and nail issues but I am experiencing increasing tingling from my feet to ankles and around calf muscles - very noticeable at rest if waking up in the night or on waking in the morning. This worries me - I can’t seem to find out how serious this could potentially be. Do you or does anyone else have info on how peripheral neuropathy is staged enabling me to make a decision regarding future mobility vs continuing treatment ? Many thanks, Bunty.
Hi, like you I had some peripheral neuropathy after paclitaxel. It eased up a fair bit and in my case I don’t think the abemaciclib has made it worse.
My last check up and blood tests while on abemaciclib will be April 2nd, but I guess I’ll just have to see how much better I’ll feel, once I’m not taking it.
Some symptoms could be down to letrozole as well. I will ask how far I can expect improvement, but I’ve got a feeling that it’s all going to be very individual, just like our reactions to drugs and treatments in the first place!
Thank you C - my understanding is that abemaciclib symptom of fatigue is accumulative and can be expected to continue post treatment. My oncologist assured me that the results for being on the lowest dose was still as affective as the taking the higher dose. I had to stop letrozole due to some tendon issues with fingers on both hands and also with exemastane so I take tamoxifen despite being 68 years old. I am starting to ache quite a bit - I walk my dog regularly but fail a bit at other exercise due to fatigue but know I should push thru as I am becoming stiffer. I will try and speak to a professional about the peripheral neuropathy but in the meantime I will endeavour to plod on as the prevention of reoccurrence by taking abemaciclib and endocrine therapy is about 34 per cent - that’s high. I will continue to weigh up quality of life but in the meantime congratulations on almost being at the end of abemaciclib’s 26 cycles. I still find it hard to properly understand continuing to take endocrine therapy into our seventies - again one has to weigh up the disadvantages vs benefits. I have heard that exercise is so key - as important as the drugs - unfortunately on the drugs I seem less able to exercise. All the best, Bunty,
My oncologist told me I will have way more energy when I finish Abemaciclib so hope that helps. I am managing most of the symptoms but the watery eyes is the one that is very irritating and also because it has affected the look of my eyes. Anyone with any solutions?
Please keep us posted also on finishing this drug. I was initially worried about finishing but my oncologist assured me that it takes two years to kill the cells and coming off it is because there should be nothing left to kill.
Great to get to that stage of finishing the very best of luck!
Thankyou SL, this sounds encouraging. I’ll be happy if the watery eyes and runny/blocked nose move on when I finish and I feel less tired. Improvement of my thinner hair and brittle nails, would be good too, though I know that letrozole might play its own part in affecting those.
I actually started the pills on my 70th birthday, a Monday, having had a good meal out with family at the weekend. I had said that I would feel more like celebrating my 75th- and I feel quite positive that that could well work out, especially if I get back as I was on no prescription meds at all.
All the best as you continue with the treatment, I do think it’s one that’s very worthwhile doing if it’s tolerable. xx
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