@jbb Thanks for the update, I wondered if there would be anything presented at ASCO.
Hi All,
Iāve been reading this thread with interest, as Iām really hoping to get access to Ribociclib. According to the MRHA approval (that has allowed access for private patients) I would qualify as I had two nodes involved (tumour was 4cm, grade 2, no oncotype done as I was premenopausal and always going to have chemo!). I had bilateral DIEP, chemo and radio which finished 3 mths ago.
Iām aware that NICE met this week to agree which patients might get access, beyond the current criteria for Abemaciclib.
Weāre considering paying privately for a couple of months, if it looks like the NHS will agree to it for any node positive. Donāt think we could afford the whole three years though!
Iād thought all my ābigā treatments were done, so this has unsettled me a bit, especially as I was starting to plan my return to work. I work in the NHS and if neutropenic this would impact. Overall though I am so grateful that this might be possible.
Is anyone else in a similar position?
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@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 donāt 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 havenāt 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 ācovid measuresā 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.
Me!
I āqualifyā only if NICE use the same criteria as the patients from the NATALEE trial
Itās v frustrating as I read the NICE current draft and itās querying the COST benefit
I hope in August the final decision a) happens b) is extended to more patients
I finished radio mid Nov so have a few more months (finished chemo early Oct)
I canāt afford to self fund as itās thousands ā¦ the NICE draft also Inc the costs too
it gets approved
I hope you are able to access Ribociclib. I was able to access through private healthcare and am coming up to cycle 18 now. In terms of your job, I understand your concern. I work as an infectious disease scientist and I wanted to return to that role. I had various conversations with occupational health and my consultant. My consultant ended up writing a letter to my work basically saying I could return to my role as they monitor neutrophils each month and if my neutrophils are low, I could be switched to desk based roles for a while. Occupational health seemed to be happy with this. My neutrophils were low for a while, but now have seemed to stabilise between 1.5-2. Everyone is different.
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@idcand49 yes, I hope you get access, definitely too expensive to self fund. I was fortunate to have private health care via work or wouldnāt be eligible under current NHS (intermediate risk,node negative, grade 3).
Breast Cancer Now have called for it to be available to wider group of patients. (We respond to NICE decision to approve adjuvant ribociclib with aromatase inhibitor for only some patients who could benefit | Breast Cancer Now)
Hereās hoping for good news in August.
I didnāt realise Breast Cancer now have down this. 
I am hoping the ongoing delay is due to negotiations / further reconsiderations are being done behind the scenes esp as this is simply down to cost NOT treatment benefits
Hormonal breast cancer is so sneaky and it terrifies me that it can come back mets in 10, 15 even 20 yrs later!
X
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Thank you all for sharing all this information, it is so helpful. I am hoping very hard that NICE will agree the wider criteria, and that some news comes before August-my oncologist seemed to think that might happen.
I suspect it will be down to cost negotiations between the NHS and the drug company.
Totally agree about hormone positive breast cancer being so sneaky-my Mum developed secondary disease 12 years after her primary diagnosis. She died three years after that 
She was actually taking part in a trial of a drug similar to Ribociclib and did really well on it for a year or so.
Best wishes to you all-this is hard to navigate but it helps so much to know Iām not alone.
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