Hi
I’ve was diagnosed with several Secondary mets in Liver and one in lung during this summer , six years after my primary.
I started my treatment plan 3 weeks ago. 12 days in I became quite unwell could barely think or move , heart pounding and had a high temp.After A visit to a&e I was given intravenous antibiotics .
I was then taken off Ribociclib 600mg by the Oncology nurse on Tuesday and put on a broad antibiotic. My CRP had gone from 10 to 38 in a couple of days. I’m not neutropenic.
My nurse has reassured me I can get back to the plan after a 2 week break but may need to drop to a lower dose.
I suppose I’m hoping that all this is normal for Ribo and that some of you lovelies out there may have some reassurance and stories of your own . Took ages to get a diagnosis and into treatment ( 15 weeks ) and now I’m off the gold standard treatment . 
Hi … I have secondary breast cancer in my hip & spine ( diagnosed Jan 23) and now have significant mobility issues. Initially took months for a diagnosis & after being sent to different hospitals. I was initially put on Ribociclib 600mg in March 23 for first monthly only …After blood tests I went down to Ribo 400mg from April 23 to now …Like you I was initially very concerned that my dosage was dropped (after blood results) and wanted to go back to 600mg. However I have been assured that with daily Letrozole and Ribo (400mg ) all is stable and no spread to date. Now I feel grateful to still be on Ribo ( even at a lower dose)
My advice is to keep a record of what you where prescribed, dosage, Scans (brief outcome) and any breaks in treatment with dates. I have had really excellent support from Christies ( Manchester), the Breast Care Nurses & the Maxmillan team - however I have seen lots of different Consultants, Doctors, Nurses (AP)…I feel more confident to advocate for myself when i know where I am up to with my treatment and will email my consultant when needed. I go to BCN monthly support groups and have picked up loads of very good advice - all of us are on different medications and dosages and very different experiences however i try to concentrate on what information is useful for me going forward …hope this is helpful
I very quickly went down from 600 mg - of Ribociclib to 400 mg - only had 1 cycle of 600 mg then because of frequent neutropenia ended up on 200 mg and had over 8 months total on it.
From all my googling and research I did it seems that 400 mg is as effective as 600 - there isn’t much research in 200 mg but I had no choice .
I hope things settle down for you soon
Thanks Jennifert74
It is helpful .
I have started a file and keep and ‘ diary’ of symptoms and drugs etc .
I hope you continue to do well and receive continued good support. It’s early days for me but I too would like to be actively engaged in my treatment decisions.
All the very best
Thanks Gillmary.