I am in my late 40s, diagnosed in February 2022 - 7cm tumour left breast, 4 positive lymph nodes. I had chemotherapy (4 x AC and 12 x Paclitaxel), breast reduction surgery and radiation (16 boost doses). Started Zoladex in August 2022, Letrozole October 2022 and Abemaciclib January 2023. Changed Letrozole to Tamoxifen in May 2023 due to my thumb spontaneously dislocating. Changed back to Letrozole in March 2024 because oncologist believes Abemaciclib works better with Letrozole and we will monitor the effects on my thumb. Diagnosed with Lymphoedema of the hand January 2024. Diagnosed with osteopenia of the spine April 2024.
I believe Abemaciclib is not widely used in Australia because of the cost. My oncologist would not have recommended it for me unless I was able to get on an access program, which I did.
Side effects:
- Diarrhoea: initially but settled after 6 months. Gastro-stop used intermittently.
- Nausea: settled after 12 months.
- White cell count: increased to normal after 12 months.
- Reduced kidney function: test results show reduced kidney function but oncologist says it’s a pathology error - function is not actually reduced and test results will improve when I stop Abemaciclib.
- Low vitamin D/hyperthyroidism: taking Caltrate (Bone Health) and extra vitamin D.
I know of two people on Abemaciclib. One stopped after a few months, one is still on it. The first one stopped because they didn’t like the abdominal side effects.
Overall, I’ve been happy with Abemaciclib. I mask and distance at work, and my colleagues mask during meetings with me. My job does not allow me to work from home. I avoid crowds and stay away from people who are sick. I haven’t knowingly had COVID-19 and have kept up with vaccinations 6-monthly.
My oncologist describes Abemaciclib as the gold standard of treatment - if you had all the money in the world that treatment would buy, Abemaciclib is it (along with the other treatments I’m on).