Hi everyone
I'm about to start abemaciclib 100mg twice a day. I am on 2.5 mg letrozole. No major problems, morning stiffness and tinnitus. No hot flushes, sweats or tiredness.
After going through forums and reviews I'm petrified. Watched few vlogs on YouTube (those should be in horror section).
I'm mostly worried about extreme fatigue, some describe it like "half dead"  also some experience pain ( childbirth level
). I have talked with oncologist but she dismissed my worries. Oncology nurse gave me very rosy version - nothing will happen, walk in a park situation.
Can someone please give me realistic medium? Or just realistic 
I'm ILC stage 3c, 51 old, double mastectomy and axillary clearance done.
Thank you
Hi, I am 18 months into the 2 year course. I would advise you to take each day as it comes. Many good days but urgency does happen. I haven’t so far had an accident but I won’t lie it is a concern. I do have fatigue but this has been complicated by thyroid problems I developed last August. Abemaciclib lowers your immunity and I developed thyroiditis as a virus attacked my thyroid gland, but the good news is it resolves in 90% of people, but can take a year. Despite these hiccups I am still on 150mgs.
Those of us who are on this medication are highly motivated as we are high risk of recurrence. We have frequently already endured chemo and the thought of another 2 years of treatment is daunting. I’m sending you a virtual hug. You will be closely monitored and can have dose reduction if your symptoms are severe. Wishing you well.
Hi, I started on abemaciclib just after my 70th birthday 11 months ago. 10 days in i had the dramatic diarrhoea, but only had to stay near the loo for a couple of hours in the morning. That settled well in just over a month, but I did avoid lentils, salads and crunchy vegetables. What lasted 2-3 months was astonishingly painful abdominal pain with wind. I really thought that I could not possibly put up with bouts of that for two years! That settled as well and though I’m still more windy than before I eat everything I used to snd don’t have the diarrhoea- no danger of constipation however!
I’ve not had a great winter- 2 coughs, sinusitis and stomach bug with nausea, but no vomiting. 2 UTIs, which could have been the letrozole.
Nearly a month now since I had an ailment on the go and I’m feeling positive. My blood tests have been good and I’m still on the 150mg dose.
I definitely get a bit tired. My nails and hair are dry and brittle and my skin very dry. I have numb tingly fingers and some numbness in my toes. However people on threads about letrozole have these symptoms too. I’ll be on the letrozole for at least 3 years after I’ve finished abemaciclib, so I may find out if it’s been the culprit or not!
Anyway, I was appalled by the leaflet the oncologist gave me about abemaciclib, imagining dreadful symptoms for 2 years . It hasn’t been like that however and I think I’ll manage the next 13 months, hoping to be more ailment free next winter.
All the best. xx
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