@imb as @jbb said, looks like NICE are now not expected to give an update till 6th August (was meant to be June), which is really frustrating and will delay people getting ribociclib. The original decision in April (https://www.nice.org.uk/guidance/GID-TA11090/documents/draft-guidance) recommended early access to the drug on the NHS via the cancer care fund. This is just in England. However only for high risk which they defined as more than 4 lymph nodes or if 1-3 nodes, had to be grade 3 or greater than 5cm.
It is hoped that this scope will widen when revised decision is made. I am in Scotland and the Scottish medicine consortium don’t even seem to have a date for when they will publish anything!
At the moment (for private patients) you can get the drug up to 1 year after last treatment ( I was a year post radiotherapy) so might be worth waiting to see what happens in August, rather than self funding. As you will see in the guidance it is very expensive.
Hopefully some folks reading this who are healthcare workers and on ribociclib and can advise if any problems working while taking it. I am working full time but home based. However, I haven’t had any issues with my low neutrophils and infection and I am out and about and have also been on flights/holiday in Europe. No real change to lifestyle, other than I have resorted back to ‘covid measures’ and copious amounts of hand gel!
Hope you can get access soon and that we can get a decision soon that includes the intermediate (including node negative) patients that the clinical trial showed there was benefit for.