Thank you for this. My insurer isn’t BUPA unfortunately, but it’s still worth a go. Kisqali is cheaper than Abemaciclib so they would be saving in the long term. This has given me hope.
I’m due to sign the consent forms next week and then take the medication on site. I’ll raise this now before the appointment
@jbb Good luck and all the best
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Hi everyone, hope everybody had a good Christmas and New Year.
I have been quiet on here waiting for everything to be put into place. I have heard today that I have to pick up my first course of Ribociclib on Wednesday from the hospital pharmacy.
Not going to lie, feeling quite anxious about the side affects, although reading through the posts it has reassured me, so fingers crossed it won’t be too bad.
Any tips will be gratefully received 
Am I right in thinking that the pharmacy should give me anti sickness drugs at the same time?
Thank you
xx
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@puglover56 That is good news, hope all goes well. Yes, I got the anti sickness medication at the same time, fortunately not needed so far.
No real tips as just month 1 for me. One of the nurses suggested I write down any symptoms and the day of the cycle, then can see any patterns and plan accordingly e.g if always get a headache on Day 2, then don’t plan anything for then. So, doing that.
Good luck
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Hi
Could I please ask if you have private health insurance and they have agreed to cover for primary BC?
I am building up to a debate with my insurers (and oncologist)….
Thank you
Hi @jbb - I think my situation is a little different to everyone else here in the fact that my breast cancer is inoperable because of subclavian vessel involvement. My oncologist is using Ribociclib as a neoadjuvant treatment along with Letrozole to hopefully reduce the cancer so that they can operate.
I believe Ribociclib is licenced to be used as a neoadjuvant treatment pre-surgery on the NHS. I hope this helps. 
x
So sorry to hear you are going though this. Sending positive thoughts x
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Hi all,
I think I can offer some Ribociclib reassurance here
Long story, but I’ve been on and off ribociclib for 5 years, initially prescribed for stage 4 which turned out not to be stage 4 (long story), went into remission on the meds alone then came off everything to try for a family, relapsed as stage 3 (breast tumour returned and in some lymph’s) and have now had surgery and radio and am back on Ribociclib for the 3rd time to prevent another reoccurrence…!
I was terrified the first time I took it and was started on the 600mg which was v v hard going. I kept getting low neutrophils, had to constantly have weeks off, couldn’t eat etc. I think a lot of it was anxiety based. I dropped down to 200mg eventually during my first round with it.
I’m on the 400mg now, and based on my experience of it the last few years, it really is very tolerable! I get headaches the first few days of the cycle, and have had hair thinning (minor, along my hairline and lashes / eyebrows) but nothing significant. My nails are a little brittler and my skin is dryer. I never take it on an empty stomach, and always take it at night now. Drinking a sh*t load of water really helps. I used to obsessive about taking my temp the first time too but that’s totally gone out the window now I just avoid ill people and make sure if I do get ill, I’m conscious of how I am feeling. I take vitamins and some supplements to support my system, keep my gut healthy and get outside walking and in the fresh air as much as possible. I’ve traveled internationally on ribo with no issues too. There is a really good FB group for ribo users at all stages (lots of Americans in there as they have it for stage 2/3) and it’s very refreshing - loads of great stories and women living great lives on it.
Hope that helps! X
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Hi Claire, good to hear about your experience with Ribociclib and thank you for your reassurance that it is tolerable and not as bad as we all initially fear.
I’m only on my first cycle, week two, and did have headaches the first few days which seem to have settled now so maybe, like you I’ll get them at the beginning of each cycle.
I have been taking it first thing in the morning on an empty stomach and then getting quite bad heartburn/indigestion later so your comment about not taking on an empty stomach is interesting, I’ll try taking it after food and see if that helps.
Do you also take an aromatase inhibitor? I’m on anastrozole, which I take in the evening but wondering if I should take them both at the same time, I’ll ask my oncologist at my check up appointment next week.
I too take supplements - pro-biotics, omega 3 , biotin (for hair and nails), glucosamine (for aching joints) and prescribed calcium with vitamin D. Not sure if they are all needed and as they are very expensive I’m thinking of changing to just a good multivitamin. I read articles by Dawn Waldron, a cancer nutritionist (dawnwaldron.com) who writes very interesting articles under the title ‘Uncoupling Cancer’ and she suggests caution with over the counter supplements.
Thanks again and best wishes to you and all contributors to this thread. X
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Hi Claire
Gosh, what a journey you have been on, I hope you continue to be well. Thanks for all this info, good to hear coping with it and not too many symptoms.
I am on Day 3, Cycle 2 and like you and Valanne, I get headaches first few days.
@Valanne I am on Anastrazole as well and I take it, the ribociclib, omega 3 and glucosamine, all with my breakfast. I used to have Kefir for breakfast most days, so am going to restart now I am on Cycle 2 , gut health impacts so many things!
Thanks again to both for info and all the best
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Hey Valanne,
No worries at all - first off, do not take them on an empty stomach! Trust me - on a full stomach is the only way to go. I take letrozole too and zoladex as I am pre menopausal. I take both tablets after my dinner on an evening. Oncologists will have varying opinions on this but I think they push the morning as people are less likely to forget. Taking them on an evening has definitely reduced the impact they have - I like to think the “worse” stuff happens when I’m asleep and my body is resting so can deal with it.
Re: supplements, when I was first diagnosed I went a bit crazy and did the whole “How to Starve Cancer” protocol - I was on about 30/35 a day, it was way too much for my system and my wallet! I’ve narrowed down my protocol over the years to basically - vitamin C, vitamin D3, zinc, pro/prebiotics (I use Symprove now rather than tablets as it’s easier and cheaper). I also sporadically take turmeric when I remember and I have mushroom powder that I put in coffee, again quite sporadically just if I feel a bit like I need some extra support.
Obviously there are various schools of thought on supplements, and having gone one extreme to none at all, I like my little balance - feels like I’ve got a bit of control over my system!
These meds are so strong, but I know lots of stage 4 women who wish they’d been able to access them at an earlier stage, so we have to see the positives as much as possible.
Oh also - if you’re struggling on them, you can ask for a dose reduction. 200mg has the same benefits as 400mg, they just like to start you on 400 as the NATALEE trial was based on that and it’s the standard, also once you drop you can’t drop again so to speak. You can also ask for breaks - I know a lot of women travel on this and I have but I’m going to SE Asia in a few months and I’m taking a break for a month as I don’t want to be worrying about picking infections up! X
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Hi Claire,
Thank you that was so helpful and insightful 
I am on day three of my first cycle - 600 mg a day. I feel a little headachy and icky as well.
I am going to invest in some supplements and a dosset box so I don’t get confused!!! . I have also joined the FB group you mentioned - any good news stories and positivity welcomed right now 
Thanks again and sending good vibes to everyone xx
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I have requested Kisqali instead of Abemaciclib based on all your comments. Waiting to see if I can get approved. Seems like the side effects are less severe. I am worried about effect on immunity - hate going back to masks in public transport and steering clear of gatherings, but if that is what it takes…
On supplements there is a study - forget what it’s called - but recommendation is not to take individual vitamins. Only supplements that didn’t seem to have a negative effect were a multivitamin and vitamin D3. It might not be conclusive - self reporting. Worth a google. However that’s all I take now. The multivitamin that was recommended to me by my cancer nurse contains talc so I’m looking for an alternative (that delivers only 100% of daily recommended levels - we don’t need more and I worry about the study). Please let me know if you have a good quality one.
Re Kisqali my oncologist said to take it with Letrozole in the morning and then you know you’ve done your medication for the day. I currently take my multivitamin and Letrozole in one go straight after breakfast. This seems to tie in with “remember to take it” rather than when is best. My sleep is awful so the less I take near bedtime the better.
I buy kefir and then forget to drink it! Note to self
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Hi All,
I’m SO glad I found this chat as I have just started Ribociclib and Letrozole but was finding it difficult to find anyone to talk to because it’s so new in it’s use for us. I’m incredibly happy that I have the opportunity to take it but also having that bit of anxiety about waiting for which side effects might hit and when…
Just wondered if anyone has encountered any effect on their blood counts yet? My bloods did pretty well through chemo but they are a bit low starting right now just from starting blood test so i’m worried they will drop quickly - I really don’t want to have to have too many breaks from the treatment if I can avoid it. I get a bit weirdly obsessed about my blood results - I hate that everything hangs on them and there’s nothing I can really do to boost them (and more than the exercise, sleep and healthy eating I am already doing)!
Lovely to e-meet you all 
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@hikera Nice to meet you, wishing you well. I didn’t have chemo but understand now the obsession about blood results!. I have seen an effect but so far not caused problems. At the cycle 1 week 2 results my white cell count had dropped and my neutrophils were 1.5 (ref is 2-4). I had a cold at this time but no worse than when not on treatment. At start of cycle 2, white count had gone up a bit but still low but neutrophils dropped to 1.3. The team haven’t said anything about them, think only ‘comment’ if below 1. Will have week 2 bloods on Wednesday so hopefully no worse. Few headaches and bit tired but at the moment not impacting ‘work or play’
All the best to all
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Hey, regarding low blood cell counts my neutrophils have been low a few times (0.8-0.9) and they have said they will need to delay starting the next cycle. But I go back a few days later and they are above 1 which is the threshold for starting the next cycle. I’ve been on the treatment for about 9-10 months and I haven’t picked up anymore colds/flu than usual and haven’t been ill more often, which is good. If your neutrophils are very low often, they can drop the dose down to 200 mg a day
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@Jess_1 Thanks for that information, that is encouraging and good to know.
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Hi @bordercat - thanks so much for responding, definitely gave me some reassurance. I hope your bloods on Wednesday go well. Also great to hear you’ve had fairly minimal side effects so far - fab that it’s not impacting work or play, that’s the dream!
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Thank you @Jess_1 - really useful to know and chilled me out about things. Very aware I need to try and relax about blood counts! Really good to know you haven’t picked up any colds etc more than normal too. Hope you’re doing well.
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Hi, I understand the anxiety around the bloods. I am on Cycle 1 and having my first two week bloods on Wednesday and can feel myself getting slightly obsessed about it.
I so want to stay on 600mg and feel pretty fine in myself.
I have been trying to drink as much water as possible and eating plenty of protein and iron-rich foods i.e. kale, spinach, apricots etc - not sure if any of that helps to be honest 
I can imagine I am going to be like this going forward around blood results!!
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