@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.
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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
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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.
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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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Yes - very expensive. Iām on 400mg per day and on top of that would have to pay for the regular monitoring - blood tests, oncologist etc.
Means those of us with insurance will have to carry on working until the treatment is finished unless the NHS approves.
I would qualify under the draft rules but itās the same as Abemaciclib, which as youāve all mentioned doesnāt help those who are node negative. What is the point - same price and same group. This was meant to widen the net
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Yes I read it was delayed and also quite specific in that there has to be lymph node involvement.
Hi All,
Iāve noticed that the NICE website has updated, with the new guidance due to be published on 23rd July. This is my sonās 19th Birthday so Iām hoping thatās a good sign!
Fingers crossed for us all
@imb Thanks for update and fingers crossed it is good news for all.
Hopefully Scottish Medicines Consortium will state a date (currently TBC) when NICE makes their decision.
Thanks for posting this
I will look out for this as I should qualify based on the trial results but so far NICE hasnāt widen the net !
To have the chance of reducing my risk of reoccurrence further would be amazing x
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Amazing news ladies-ribociclib is approved on the NHS for the full marketing authorisation-so any number of positive lymph nodes, and also high risk node negative.
Iām so happy! Have an appointment with my oncologist the week after next to discuss it.
Isobel
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I have an appt with mine in Aug to discuss this as he was waiting for approval too
I would love to hear how the women here have been tolerating it
Iām up for anything to reduce the chance of distant reoccurrence
X
@imb amazing news!! Thanks for the info, checked on Monday but nothing. Just looked at the product characteristics and looks like it is every group that was in the Natalee study. So, so pleased that folks have access to this now on the NHS. Hopefully Scottish Medicines Consortium will agree and recommend as well.
I am getting on fine other than my liver is grumbly (high ALT). Not causing any symptoms but just causing lots of treatment breaks. I should be on Cycle 8 but currently on Cycle 6. I have also reduced to 200mg. Hopefully can get this resolved or they may have to stop.
Wishing you all good discussions with your oncologists, hope treatment goes well and fantastic to have another drug to try and reduce our risk of recurrence.
Amazing news!! 
Iām OK, but the monitoring in the beginning does mean a lot of hospital visits, weigh ins and blood tests. Iām now down to hospital check-ins every other month - on cycle 6 of 36.
My bloods have held up really well - but I still fear an infection of any kind. I made sure I was up to date on all my vaccinations - flu, covid and pneumonia (only managed one shingles) before I started.
I also get very tired but that could be the insomnia from Letrozole.
Good luck with your upcoming oncologist appointments
PS I am on 400mg a day
Thanks all.
@jbb thatās really helpful to know, I was about to start planning my return to work, but I donāt think Iāll be doing that during the first couple of cycles (I work in a Childrenās Hospital and often get coughed/spluttered on!). A good reminder to get my pneumonia vaccine done, I was offered that last winter but was mid chemo at that point so couldnāt have it.
I should be on 400mg too.
@jbb Good to hear all going well with ribo. Yes the initial monitoring is quite intense. I live about 1.5h drive from the hospital as well. Fortunately, they do the bloods and tablets on the same day and I can work there while waiting for the results. Hopefully when my ALT settles, I can go every 2 cycles.
Agree good to get all the vaccines, although the shingles one is a bit of a brute!
@imb good luck
I wouldnāt worry about what cycle youāre on - just apply good hygiene (washing hands etc) and be aware if you sense someone might have a cold.
If Iām on public transport Iāll wear a mask and try to avoid crowded places (itās a bit like Covid days). Just happy itās summer as so much easier.
I have worked full time throughout all Ribo cycles and itās fine. Probably the easiest treatment Iāve coped with over the last 15 months.
Just try to make sure you get enough rest when you can.
Your lowest immunity will be just before your week off. It then picks up before you start the next cycle. I do love my week off. If you have something important during a month try to coincide it with the end of your week off. My cycle starts on a Tuesday.
Apparently we may only need to take it for two years like those on Abema to have the same effect. Hoping thatās what research will show
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