Out of interest, is anybody else getting nose bleeds? I have had a couple which is unusual for me?
Thank you 
Iām glad I am not the only one @puglover56 
I am doing the same with diet - not sure it really makes any impact (my oncologist said not really) but it makes me feel like iām doing something which helps!
Also saw your other post - I havenāt had any nosebleeds so far, but I am only on week 1. I did have some nosebleeds as a side effect of chemo though so I wouldnāt be surprised if it is from Ribociclib.
Hi ya, yep Iām on week one as well - I heard that it could happen on chemo so it probably is linked.
I had a search on the Ribociclib Facebook group and it appears quite common along with dry nose 
Hi, Iām on week 3 and have also started getting slight nose bleeds, which is the same as I had during chemo.
I also woke this morning to blood in one of my ears - I went to have it checked at my GP surgery but nothing untoward was found. I see my oncologist on 30 Jan so will discuss these bleeds with him then.
Otherwise I donāt seem to have too many side effects as yet - although I am very itchy all over and as suggested by claire401, Iāve changed to taking the Ribociclib after a meal instead of on an empty stomach which has helped with the reflux/heartburn symptoms 
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Yep I try to have a decent brekkie then take all my meds. I then go off food for the rest of the day so try to drink as much as I can until dinner. Meds make me feel a little icky. I havenāt had heartburn but then I take omperazole first thing with a cuppa.
Hi All
I have been approved to have Ribo!!! Thanks so much for your advice.
Iāll be following your experiences and will update you once I start. Thinking of getting my shingles booster and pneumonia before - am up to date on Covid and flu. Also just had first Zometa - ugh
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Hi @bordercat, thanks for starting this thread! Iāve started on Ribociclib too, and was almost one year on from starting hormone therapy.Unfortunately my neutrophils plummeted to 0.5 after my first cycle! My consultant has reduced my dose to 200mg to see if that is more manageable. Would be interested to hear if anyone else experienced the same! Best of luck to you all x
@ali2023 Good to hear from you. I started about 16 months after starting hormone therapy and about a year after radiotherapy finished, just snuck in!
Sorry to hear about the low neutrophils, hopefully the lower dose resolves things and supposed to be similar benefit. My neutrophils dropped to 1.5, then 1.3 and now at 1.2 at start of cycle 3, so hoping they stabilise. Bizarrely in the middle of Cycle 2 my ALT went slightly out of reference range and at start of cycle 3 it is 83. Not causing any issues, not been raised as a concern (think just if it goes over 105) so hoping that behaves as well!
Any else seen increased ALT (I know it is a known side effect)
Good luck all
Thank you! Hope the next check of your ALT is ok x
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Hi everyone, just wondered how everyone is getting on 
I am now day 6 cycle 2. Iām finding the first five days of a cycle the trickiest with feeling icky and absolutely no energy, not tired so much just fatigued.
My neutrophils dropped to 1.1 in my seven days off but oncologist was happy for me to continue 
Otherwise not much else to report. Bit paranoid about picking up a bug - roll on some sunny evening 
Any tips for the fatigue would be good.
X
Hi Claire
Thanks so much for such a detailed response. I hope Iām not overstepping by asking this, you said you stopped medications to try for a family? Were you able to get pregnant and start a family before recurrence happened?
Thank you 
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Hey,
No worries at all - I did actually fall pregnant after only having three periods (Iād been off my meds for about a year) but I lost it unfortunately, we didnāt really want to try again after that. It was very sad but Iām lucky I got the chance to try xx
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so sorry to hear that Claire
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Glad all not too bad, yes you do notice more in the first week. I find going for a walk helps with fatigue, even if just a short one, feel better for being outside.
Hope the neutrophils behave.
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Iāve been able to access Ribociclib through my work private medical insurance (Bupa) for the past year, they are changing provider to Vitality from the end of March. Iām obviously pretty concerned as I want to still have access to Ribo, is anyone with Vitality and has been approved for this drug? Thanks
Sorry to hear that, you were very brave to try and amazing you were able to, despite the outcome,
G x
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Hi All,
A few days into cycle 2 and finding myself more tired on the first few days of this cycle - hoping it eases in a day or two. I did have the flu that was going around during my break week - my neuts were a bit low (0.8) but oncologist was happy for me to continue so also probably explains why Iām a bit more tired!
I am trying taking it in the morning this time (I did evenings on my first cycle) - thought it would improve my sleep but downside is Iām now more aware of side effects and tiredness during the day. Anyone tried both? Which worked best for you?
Iām up and out doing some exercise which really helps me with fatigue - though some days I do have to really make myself!
Iām on BUPA insurance so Iām not sure about switching - hopefully if you have been on it for a year they would just continue? Maybe you can get a letter from your oncologist for them (I know mine writes to BUPA on my behalf as and when needed).
Hope youāre all doing well! X
Hey @hikera , Hope this cycle goes okay for you. I found the first couple of cycles the hardest as my body was adjusting I think. I have tried taking it in the morning, lunchtime and evening. For me personally, evening works best as I feel I sleep through any major side effects. When I took it in the morning/midday I found myself feeling nauseous throughout the day. My oncologist said doesnāt matter about time of day, but during each cycle make sure you take it at the same time each day. Thanks for letting me know, I will speak to my oncologist and see if he will write a letter so I can continue.
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Hi All, I am in a similar position to bordercat, where I have private health care and they have agreed to prescribe ribociclib for primary breast cancer. My oncologist said I have to start within the year of starting Anastrozole, which is in April this year, so will be starting Ribociclib at the end of this month (March).
Obviously concerned with regard to side effects etc, but think Iām prepared to give it a go to improve my chances of avoiding secondary cancer.
Hopefully it will be approved by the NHS so everyone in our position can gain access to it.
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Hi All
I start Ribociclib tomorrow - consultation and bloods in the afternoon.
Any thoughts please on time of day I should take? My sleep is awful - lucky to get six hours a night and never sleep through. I work full time so really donāt want to feel tired or sick during the day. However I donāt want to make my sleep even worse.
I take Letrozole in the morning.
Thank you 
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