Hi, I’ve had my first round of Ribociclib treatment which was 600mg tablets a day for 3 weeks. My blood tests showed my neutrophil level was low so my next round of treatment was put back a week. I have gone today to be given my next round of ribociclib and it’s been changed to 400mg for 3 weeks.
No one had told me this was going to happen and when I saw oncologist 12/12 they said treatment wouldn’t change but I’ve been told today that after my blood test on 18/12 that a it was decided to change it.
Is this normal to have treatment changed/ reduced so early on? After lots of other muck ups at the hospital I don’t quite trust things!
Yes, lots of people go down to 400 if their neuts don’t recover after the week off. It seems to be as effective as 600. Some even go down to 200.
All the best
Kinden
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I too went quickly down from 600 mg Ribociclib to 400 and then after twice on 400 to 200 because neutrophils always took an extra two weeks to recover . My understanding is that long term there is very little difference in outcome so do t worry .
. I still take two extra weeks to recover even on 200 mg so I may not be able to continue but I am a little unusual I think .
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Hi,
I started on 400 as it was just before xmas 22. Neutrophils dropped really low so now on 200mg and have been ok for 1 year with Stable CT scan results.
Hope that helps
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Thank you all for your responses, reassuring to hear it’s fairly normal. Hopefully it’ll start to make a difference. 
I wish the hospital had informed of me beforehand though!
Totally agree with the others. I can understand your upset though from not being properly told about it. Can you email the breast cancer nurses? Or when are you meeting your oncologist next? Are you every monthly as they review your blood results. I would just like them to explain it to me personally.
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I don’t see the oncologist next until the end of Jan now, after this next lot of treatment. I’ve got the secondary BC nurse phoning me this week so going to discuss my concerns with her.
Found out that my neutrophils were already very low on a blood test on the 06/12 so not sure why the oncologist didn’t bring it up then and said treatment wouldn’t be changing! They didn’t wait to see what the extra week off would do before reducing treatment either. Maybe it would have all have made sense if they had just explained it to me! 
I think you defo need the nurse to explain it all albeit that I imagine it was the decision of your oncologist/that team. See what they say when you speak to them. I’ve had 3 years of managing neutrophil levels. I’m on palbociclib, but it is similar.
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