Kisqali [ribociclib]

Hi. I was diagnosed last Setember with secondary breast cancer with mets in bones,liver and lungs. I was originally diagnosed in 2011 when I had large local removal of lump and radiotherapy. 

I have completed six cycles of EC chemotherapy. I have just been put on a new drug ribociclib together with Letrazole. I am very anxious to hear from other ladies wh are on this drug to compare notes and experiences as I am feeling very alone at the moment!


Welcome Sammy!  You will find the bone met thread very active where most of us hang out. Ribociclib is a very new drug, but I do believe someone here is on it. I did pabociclib/letrozole for 21 months. Letrozole made my knees so painful I tried crutches. Pabociclib weakened my legs muscles. Since coming off this combo my knees are back to normal and my legs are regaining strength. This combo really knocked back my lung mets. I asked to try ribociclib, but the verdict wasn’t out yet last year if it would work after pabociclib. I’m willing to give it a try. I feel whatever they give us is a gamble. You never know what will or won’t work. Everyone responds differently. You could also try an American site called Inspire. This can be a very lonely journey. Others just don’t understand. The ladies here do. I wish you the best. Come join us on the bone mets thread. Hugs, FF


PS I am from the states so you might find me posting at strange times or saying things differently.


Hi Funny Face .
I am about to start it today.
I read too much into it and now and am super anxious.
I will be in contact with you soon. I promise.
Best of luck
Gina G

Hi Sammy.
I am about to start Ribociclib so I will be touch with you soon . This is a very new drug and I had read too much into it and now I feel anxious.
Take care.
Gina G

I am starting this drug also
And I am anxious about it.
What sort of experience gave you had so far.
I have over thought about this drug and now have decided to take it from next monday.
I don’t want you to get lonely

Hi Sammy cat.
I will contact you again by end of next week.
The stupid thing is that I am an Oncology nurse and I have worried myself sick about taking tablets! !

Hi Gina

I also work in healthcare so that is why we overthink these drugs!! My honest opinion is that I personally don’t want to start the the next course!! The thing is I have very bad lower back pain since original chemo . Despite steroid injections it is no better so maybe if I could at least sit down and rest I would not feel so bad!! I am blaming the tablets for feeling bad but maybe it is the constant pain I am in!! Who knows! Don’t find anyone who can answer that.My Oncologist has said he will reduce the dose to 2 tablets for the next course. I think 3 is too many as I weigh eight and a half stone and I am 5ft 7 so sure it is too much as they would prescribe the same amount for a 15 st woman. I think the Onc. thinks I am making a fuss about nothing.

When I am taking them I get very shaky which is weird. Like you I don’t like to take drugs and know too much to just take them without question. Have you got bone mets?

Sorry to have woffled on. I would say to you to give them a chance and if you have no other pain in your body you will probably be fine.

I expect like you I just want to get back to my old lovely working sporty life and can’t believe any of this.x

Hi all, I was diagnosed with bone mets in autumn after 6 months of agonising back pain.


One of GPs I went to regularly assured me my cancer hadn’t come back (breast cancer 2009) as the x-rays didn’t show that, only collapsed vertebrae. She was quite dismissive until I managed to see a GP who was so concerned about the state I was in, she ordered an urgent scan. Three days afterwards, yes, extensive and agressive bone mets in my spine. Oncologist was getting worried by December as I continued to deteriorate losing weight and inches and admitted me to hospital for a few days. The worst thing from that time? The pain! Like some torture I had to go through as the medication continued to be changed and increased.  


I was probably the first at my local hospital trust to go onto the Letrazole/Kisqali combination and starting on my 5th dose. I’m on strong pain medication (Oxycodene) so don’t recognise the joint pain that some complain from Letrazole. I’m in a lot less pain but it’s a constant background hum and I cannot walk very far unaided. 


Initial prognosis was 6 months, which has been extened to two years. I don’t dwell on this, just putting it out there.  I’ve lost over 4 stone and 5inches in less than a year as my spine collapsed. Hate, hate, being short at just over 5ft. I used to be almost 5ft 7" as a teenager!


My bones are now healing due to the monthly zometa infusions! Letrazole and Kisqali are stopping the cancer from spreading. I am being referred onto a back surgeon to see if surgery can help with the pain. I need to come off the medication if surgery is the preferred option but only for a max of two weeks.


Sorry for the long preamble, when I only wanted to say that;

Kisqali is very well regarded by my oncologist and the cancer nurses. My side effects; being physically sick after taking them the first few days, feeling tired, sledgehammer tired. I’ve learnt not to take them on an empty stomach but occasionally feel nauseous. Also, the week off from the tablets usually morph into two weeks because my blood count for neutrophils (type of white blood cells) is low. I’m constantly being reassured though that isn’t unusual.


Do ask any questions, but of course we are all different and have different needs for our bodies. I am in a much more positive place than last summer.

Hi Gina and Funnyface

You two have really been through it! Just can’t believe what you have both been through. The back pain is so awful but I just keep getting told it isn’t the mets that are causing it!! They just say it’s the weight loss.

I really don’t like the letrazole kisqali combo as I just feel really ill all the time and I was shocked to see what it does to your blood results. I keep saying that if my back didn’t hurt then I would have no problem taking it. Nothing gets rid of the back pain and I am now having an epidural in August with yet more steroid injections. I have also developed crazy anxiety which is something really alien to me. Do any other of you feel this way? I think a lot of t is that I don’t actually believe what the Oncologist tells me as he said I had it in T10 and T11 but when I read MRI result unknown to him it said also T12 and L1 and multiple other bony mets!!

Thats my moan over for todayso please keep in touch and Gina please take the meds as we are all so different

Hi Gina


You sound really positive! I find the fizzy water really helpful. I start my next dose on Friday at 400 mgs so will let you know.Good luck I’m sure you will be fine with the tablets. I’m sure I would be if I could get the pain under control. Sitting here typing with tens machine on. It’s really good and wish I’d tried it before. Hate pain meds as they make you crazy!! Look forward to hearing from you at end of week.

My long and detailed post to everyone disappeared when I had to correct a spelling mistake. My profile shows I’ve made two posts so goodness knows where it’s gone.


Essentially thanks to funnyface for details of the kyphoplasty, sorry to hear that sammycat is having problems with the letrazole kisqali combo and good luck to Gina starting on the combo



Hi guys.
I have almost completed my first week of Ribociclib.
I feel okay.
I take around 1030 each day with food.
I eat a little and often, but am surprised how much I do eat.
I sip on fizzy water and lemon throughout the day, occasionally with ginger cordial.
I can take in about 1.5l in a day.
I even went to a party last night and allowed myself a small glass of wine.
I hope ladies are out enjoying the sunshine and the Vitamin D for our bones .
Have a good weekend.
Gina xx

Hi Gina


That is brilliant! I have delayed taking my next lot as my neuts were 0.5 and I felt rubbish. I also want to go away for a couple of nights from tomorrow and don’t feel safe driving strange places as they make me very slightly shaky! Be really interested to hear your blood results after the 3 weeks. I seem to have one good day and then the next day is rubbish again. Just shows how different we all are. I would love to enjoy the beautiful sun but don’t feel confident without my wig and it is so hot and annoying!! Wish my hair would hurry up and grow! It looks delightful at the moment ! Its all black and white and frizzy! Where did my blonde straight hair go??

Thinking of you

Hi Sammy Cat.
Hope you manage to get away for a bit…
I am due to have bloods on Wednesday, as I have only just started the treatment.
Will be in touch by end of week.
Take care and try and get out even if you need to cover up a little.

Hi Gina

Just wondering how you are getting on with the new drug? Were your blood results ok on Wednesday? I am now 6 days into my third lot and only taking 2 tablets. I tend to feel sick and strange about an hour after I take them but it passes. I have started to take them later in the day as I have been on the american site for ladies on this drug and a lot of them say to take it in the evening as you then sleep through the worst part! I was wondering if you know a reason why we are told to take them in the morning?? A lot of them are also complaining of hair loss but touch wood mine is still growing back well after my intravenous chemo which ended in Feb.

Hope you are enjoying this beautiful weather. I walked for miles this morning as its the only thing that keeps my back from hurting!

Hi SammyCat.
I am still ok.
I take my Meds around 10:30-11:00 in the morning with toast.
My white cell so far has been ok…
The Letrozole I take in the afternoon.
I am enjoying the sun and being in the green house.
So far so good.
I am glad you are back on them.
Have a good week.
Gina ?

Also I think we are told to take them in the morning so they become part of a daily routine Not because of any clinical reason…
I am continually sipping on fizzy water/ginger ale, which has kept the the nausea away.

Also I think we are told to take them in the morning so they become part of a daily routine Not because of any clinical reason…
I am continually sipping on fizzy water/ginger ale, which has kept the the nausea away.
Also it is so good that you are able to walk and get out and about…
Gina ?

Hi Guys.
Have just finished 1st cycle of Ribociclib.
It was okay. Nothing too bad to report.
On my week off…
Are enjoying the warm weather?.
Keep hydrated and graze throughout the day.
Gina x

Hi Gina

Great that you didn’t have any problems. This month I have been much better and I am beginning to think it is the letrozole that is causing my aches and pains. How were your bloods after the 3 weeks? I go next Tuesday for my bloods and my neuts are always about 1 which is quite worrying. Do keep in touch snd carry on enjoying your greenhouse!!