Have to try Ribociclib again and getting stressed

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Hello

I was diagnosed with grade 2, ER positive breast cancer last year and had a radical mastectomy and axillary lymph nodes removed in August.  This was followed by radiotherapy. I was feeling great, ready to get on with my life and then came the medication; Letrazole, Adcal, Ibandronic Acid and Ribociclib.  I went downhill very quickly after starting the Ribociclib and was advised to stop the medication half way through the second cycle. I also had to stop the Ibandronic Acid because it was irritating my hiatus hernia.  This is now going to be administered through infusion.  Two months on and I still have some of the effects from the Ribociclib, however my doctor wants me to start a lower dose (200mg) and I know this is to prevent the cancer from coming back but I'm really not looking forward to it.   

  • Hi, I can only imagine how anxious you must be given your first experience. Wishing you the best of luck for the lower dose and hoping it doesn't have the same side effects for you. Best wishes 

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  • I moved on to a lower dose after experiencing a level of side effects that I found too difficult to deal with. It made a real difference. I hope you find the same. 

  • I had a horrendous time on the 400 dose. Not sure your exact side effects but I had really bad mental health on that dose, to a point where I didn’t want to come out of my room.  I was advised to stop 400 dose and have a break (after only 2 months) Having moved to the 200 dose it’s much more manageable but taking some meds to help with some side effects. Hope it works out ok for you 

  • Hello Force10,

    i have just finished my second cycle of Ribociclib.  You probably don’t want to hear this, but I have experienced minimal side effects on a 400 dose.  However, my body is not actually playing ball and I’m on weekly blood tests and reviews, due to the effect it’s having on my white cell count.  I don’t feel unwell, haven't caught any illness of late, but my oncologist is going to review on Thursday if my dose is to be reduced or stopped altogether.  I must admit I’m very concerned presently, (that it may be stopped), as my cancer was grade 3, and Ribociclib (along with Letrozole), gives me a much improved rate of non-reoccurrence, up to 29%, I believe.  Unfortunately, all these treatment have side effects, and I very much hope you are able to tolerate a lower dose going forward.  All the best x.