Yes, I know what you mean about COVID days, my bottle of hand sanitiser is my best friend 
My neutrophils have been as low as 1.2, but fortunately not picked any infection up other than the odd cold and itās been no worse than a pre ribo cold. I donāt tend to wear a mass and we went on holiday to Europe (so flying). As you said all about being sensible and aware of your surroundings.
Like you have worked full time throughout.
Hi all, thanks for all the sharing. I was quite worried about the side effects of Ribociclib until I came across this thread.
Iāve just started taking Ribociclib 400mg for a week, have mild heartburn and occasional rash. My skin has always been quite sensitive, esp after chemo, so not particularly alarming.
PS. Iām node positive, grade 2, on Anastrozole (switched from Letrozole due to insomnia).
Wish you all have a good week.
How have you found switching from Letrozole? I have found Letrozole worse than Ribociclib and the insomnia is beyond a joke.
BTW I take Ribo (both tablets) in the morning along with Letrozole. Anything to avoid taking at night and making sleep even worse.
I sleep so much better after switching to Anastrozole. I slept through the night in most days now, sometimes waking up once to go to the toilet as compare to waking up five to six times a night while taking Letrozole.
Iām taking Anastrozole and Ribo in the evening (9-ish) after dinner. Iām a night owl and go to bed around midnight and sometimes 1am. So I still have a couple of hours before bed to drink plenty of water. I also feel the muscle aching a bit more (esp my hands) after around 2 hrs taking the drug, so Iād prefer to sleep thru the aches. The fatigue from AI and Ribo seems to make me fall asleep easier too.
Hi all - i think ive just completed my 5th cycle. My neutrophils are low again at 0.9 after a week off. Its the 2nd time this happened so i suspect my dose will be lowered to 200mg.
Im still on monthly monitoring too until we get this sorted.
Iām on letrozole too
I take my tablets just before bed
Ive also experienced constipation 
so now take lactose in the morning
And sage for the hot flushes too
Fatigue is hard as the cycle comes to an end
But for me, at 44, as the side effects are manageable I will keep going 
Hi everyone,
My nameās Kira and I work in the Policy, Evidence and Influencing team at Breast Cancer Now.
Weāre looking to hear from anyone who has received the treatment ribociclib (Kisqali) with an aromatase inhibitor for adjuvant treatment of hormone receptor positive, HER2-negative early breast cancer at a high risk of recurrence. The treatment is being assessed by the Scottish Medicines Consortium (SMC) to see if it should be made available through NHSScotland and we would love to hear your views to help shape our submission.
Weāre looking to hear from people who have experience of this treatment for primary breast cancer, for example you may have received the treatment through the clinical trial, be receiving the treatment privately or have access on the NHS in another part of the UK. Weāre also looking for people who might benefit from this treatment if it were to be approved for use on NHSScotland.
Itās crucial that the SMC hears the voices of patients as part of their assessment. If youād like to share your views on this treatment, please email policy@breastcancernow.org.
Your views will be shared completely anonymously.
Thank you!
Kira
Hi
I have been allowed to move onto monitoring every 2 months!! Woo hoo!
Me too. Two weeks from now on - I think I am cycle 6 or 7. Weird how you lose count
Really helpful to read these updates.
I started ribo last Friday, so far so good. Slightly nauseated for the first couple of days, and my mouth is very slightly tender but hardly noticeable.
Off to the seaside for the weekend with my husband and teenagers. Will be interested to see my blood and ECG results next Friday.
Overall very grateful that I have access to this drug.
Firstly, good luck with your BC journey. It will be interesting to hear your progress.
I had two tumours and eleven lymph nodes removed in March this year, then had 15 days of radiotherapy ending on 10th June. I started Anastrozole in 7th May. I am 62. I am lucky to have private medical insurance and am booked in to have my first blood test on Monday and my first dose of Ribociclib on Wednesdayā¦ so far, Iāve had BUPA approval for the blood tests and consultations, BUT not the actual drug. With good reason, as three years on the lowest dose will cost Ā£900k!!! Three years on the highest dose will cost Ā£1.1 million!!??!?! Sheesh 
so expensive.
However, it has now been approved for the NHS,
Hence my initial question of whether it can now be prescribed by my doctor through the NHS? To be able to cut my chances of reoccurrence by 50% is extraordinary!
I will be watching this thread carefully and would please ask everyone on Ribociclib to keep us updated on symptoms, treatments, things to look out for, just anything really 
I didnāt need conventional chemo, so am also tremulous about this type of targeted āchemoā and its effects. Huge love and strength to all you girls (mainly) going through this, we will prevail! M xx
Hi all, I have completed cycle 1 and had my bloods done on Thursday for cycle 2. I took my first dose for cycle 2 this morning (as usual) but got a call from the hospital at 6.30pm to say my neutrophils were below 1 so I have to delay the cycle and will be retested next week. Im frustrated as this happened with my EC chemo as well (though they reduced the dose to 80% rather than delayed it and down to 75% for the Docetaxel). My mid cycle bloods were fine! So why after a week off was it bad? I dont know how far below 1 it was. I should have asked.
Is there anything I an do for future cycles to stop them dipping so low? I dont want to be on more dose reductions.
I feel fine in myself otherwise.
Hi @redruth , Iām on cycle 19 now at 400 mg a day. The first 6ish months my neutrophils were consistently sitting at 0.8-0.9 and Iāve made it my mission to work out what will bring them up. I expect it is different for each person, but what I find helps me is an exercise session the day before bloods (medium to high intensity, if this is safe for you) and having my bloods taken in the late afternoon. I also eat a square of 85% dark chocolate each evening, but I think the first two are what actually helps. I hope trying these helps
Hi Jess. Thanks for the reply. I do a 20 minute bodyweight exercise on a Wednesday and a Thursday (day before and day of my bloods). So I will keep that up. This set of bloods was 1.30. My next oneās are 10am and unfortunately school pick up would preclude later bloods. I will try the 85% chocolate 
Hopefully theyāll bounce back.
@bordercat thank you for the reassurance. Im sorry youāve experienced issues but im glad that youāre still getting the treatment. I hope it is now a settled routine for you. Wishing you all the best too.
Hi Mels, Iām seeing my oncologist on Thursday to consent to starting ribociclib and will also be going via Bupa so am very interested in their approach. Iāve found them difficult from my diagnosis on tho so wont be surprised if they are again with ribociclib especially as itās expensive but now on the NHS as well.
My hope is to start on Bupa then transfer onto the NHS once the initial cycles have settled, which my oncologist has said I can do after the NICE guidance in July now includes my diagnosis (stage 2A with 3 lymph nodes positive, 3 weeks radiotherapy, no chemo either).
Ā£900,000 for 3 years sounds like a health care provider is making alot of money off this treatment tho as my oncologist said heād seen a quote of Ā£238,000 for 3 years and even that he seemed surprised at. I understand the NHS pays a much discounted rate tho.
Hope you get your Bupa approval through for Wednesday and it all goes well.
Happy Sunday 
I think I have seen the monthly cost at around Ā£2.5k up to Ā£5k a month so that Ā£900k seems way out of the normal range. Even with oncologist appointments, tests and scans. Also there is talk that they will reduce the recommended three years to two years - like Abema. Even so itās far from being affordable.
I forgot to mention that my neutrophils dipped to around 1 at first, but now consistently around just 1.9/2.3 on day 28. Checked and on cycle 7.
I have (touch wood) no other issues - apart from insomnia and fatigue. My eyebrows have grown back. I still have thick curly chemo hair so have noticed no difference to my hair.
Even my joints have gone back to normal but could be change in Letrozole brand and doing a more exercise on top of 8k steps a day (I donāt manage that every day - sometimes I just want to veg on the sofa (and I work full time)).
I do try to manage a healthy plant diet - anything to boost my immunity - lots of fibre and protein - Greek yoghurt and pumpkin seeds are now my friend. I avoid supplements just in case there some unknown contradictions. I miss sharing a bottle of wine with friends but just canāt risk it. On the week off I do have a glass or two over the week. That is my biggest change and my biggest resentment and constant weight management due to AIs
BTW I was Stage 2A and two positive lymph nodes but had neoadjuvant chemo which ākilledā the active cancer in my nodes and significantly reduced the tumour. Wish I could have avoided the chemo!
So glad I have this drug and have avoided Abemaciclib - for now.
X
My insurers offered me a monthly payment to transfer to the NHS for treatment. Right now if I can keep going on my insurance (ie working) and saving the NHS the cost I will. However at some point I might have to.
My whole treatment - chemo/surgery/RT has been via work insurance - even my first āGP appointmentā was over the phone via the insurers helpline. I got a scan straightaway during which I was told 95% sure it was cancer even before the biopsy results. Two weeks later I started chemo.
I have been very very fortunate and why I keep working rather than retiring.
Morning all
Bit of a strange one but has any had hayfever like symptoms on Kisqali. For my 6th dose, at the start of week 3 of treatment I thought I had a cold. However, then developed into more like hayfever, stuffy nose, watery eyes etc. now on 7th dose and same thing starting week 3.
Not sure who is waiting for nhs approval but I was whizzed into clinic yesterday to do the consent
I start 12 sept!
400 mg (is that too high?)
I was read the long list of what can happen & now wondering what am I signing up for!
I will be 9 1/2 post final active treatment so just pipping in
Work f/t so hope it wonāt floor me
Any tips welcome x
I started ribociclib yesterday. Iām nervous about side effects, but happy I got approved for it as my health trust was very strict about who can have it. Apparently it costs Ā£3k per cycle! Iāve got a lot on this next week with going back to work, going away and getting kids back to school, so hoping for minimal side effects! How has it been for everyone so far?