Breast cancer

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Hi, I was diagnosed 28th Feb 23 with stage 3 breast cancer. Which had spread to my lymphnodes too. I had chemo then a mastectomy and lymphnodes removed.  Unable to have reconstruction due to radiotherapy. This ended 21st Dec. Now I am on Abemaciclib and hormone therapy too. Iam really suffering with side effects, this is really getting me down to the point I stay in bed all day. Is anyone else in same boat. Thanks 

  • Hi Sharon121, I’ve had a similar journey to yourself,  breast cancer diagnosed January 2023, had a lumpectomy but in 2 lymph nodes and now also on hormone therapy and Abemaciclib. You don’t say what your side effect are, but I presume it’s the diarrhoea. This journey is so difficult. I am now on cycle 4 and for me diarrhoea has improved but side effects from letrozole have worsened. I try and keep my mental health in good order by getting outside for some physical activity, but with the anxiety of recurrence being forever present it isn’t easy. If you are staying in bed most days try and get some support from Gp or  oncology if symptoms are from your medication. My oncologist informed me I had grade 1 diarrhoea. He said grade 2 was when you couldn’t leave the house, grade 3 you couldn’t leave the toilet and grade 4 you were in hospital. As I’m sure you are aware we all react differently to medication and with Abemaciclib it is very common to have dose reductions which doesn’t appear to have a negative impact on the medications effectiveness. Hoping your side effects improve soon. 

  • Hi. When I first started Abemaciclib a year ago. I had terrible side effects. Extreme fatigue, food and drink tasted foul, , weight loss, sore mouth. Diarrhoea. I went from my bed to the sofa for weeks, I was so fatigued that my morning shower was all I could manage.   After 8 weeks of this I told oncology I couldn’t do it anymore so they reduced my daily dose from 150mg twice daily to 50 mg twice daily (the lowest dose).  Since then I’ve been fine, still get mild side effects but very manageable.  Some have had their dose reduced to 100mg and they’ve coped ok but in my case my side effects were so severe it was decided to go straight to the lowest dose. Speak to your oncology nurse, they may suggest  either a break for a few weeks or a dose reduction.   I hope you feel better soon.  Take care. X

  • Hi, had my meds reduced last Wednesday so now on 100mg. My worse side effect now is tummy cramps and tiredness. I'm guessing we have to learn to manage the side effects and our time. 

  • Hi, it may take a little while longer before you see the benefit of your dose reduction.  Did they not advise a break before taking the lesser dose?  I was given a break but maybe they do things differently now.  Anyway, give it more time to settle down and hopefully the side effects will somewhat subside.   All the best M x

  • No they didn't. Yes I will only been a week. Take care