Kisqali [ribociclib]

Hi Sammy cat.
My neuts were 2.1.
I am enjoying my week off.
It is good the weather has called down a bit…
Take care abd enjoy the days you feel well.
Gina xx

Hi Sammy Cat and anyone elseen on Ribociclib
How are you now?.
Are you coping well with the weather?
Gina G.

Hi Gina

How strange I was thinking about you and up you popped!! I have been off ribiocilib for 15 days now as neutrophils were under 1. Had 2 blood tests with no improvement and just had 3rd this afternoon. Waiting to hear if I can collect my tablets tomorrow. I don’t feel any different when I don’t take them which just goes to show what a big part your mind plays in all this!! Still have my horrible back pain. Have CT and bone scan at end of August so will be scared when I see Oncologist for results!!

How are you gettiing on with it and when are your next scans etc. So comforting to know someone else on it. I love the fact it is cooler now but see heat is returning! 

Hi Sammy .
So far okay.
Have you got your results back?.
Seeing Oncology next week for 2 weekly review.
Still on crutches to keep weight off hips, have minimal pain but have to be careful where I sit.
But am able to walk for miles.
Spent afternoon at community garden, where I volunteer. It was lovely, if I couldn’t go back to nursing it wouldn’t be the worst thing.
I feel so energised when I am there and could get into horticulture!
Seeing Orthopaedic team at end of August.
They will probably want another scan…
Take care and keep hydrated
Gina ??

Hi Sammy cat
I am glad that you are back on the Ribociclib.
Can I ask, is your pain cancer related or is it something else chronic? .
Mine is cancer related and no not taking anything strong just ibuprofen /paracetamol occasionally.
I have been allowed to go to Greece for a week so am excited but a bit anxious as well.
I think you are right we seem to be all alone.
Good to hear from you.
Keep active. Keep drinking (fluids).
Gina ??

Hi Sammy cat.
So good to hear from you but I feel your Oncology team should listen to you more…
Don’t be afraid to bang heads and ask for your scans to be reviewed by bone specialists if you are not happy.
I am under the RNOH as well (google the acronym).
At moment they are monitoring my progress.
I have to say that the crutches have been brilliant.
Take care.
Keep cool. I believe that rain is forecast later on this week.
Gina x

Hi Sammy Cat.
Can keep ask you, are you on Zolendronate or any other bi-phosphanate IV or oral
Or Denosumab injection.
Please ask your oncologist if you are not on them.
Gina x

They really help with the pain.
But oncologist must also give you adcall or calcichew.

Hi Lulu, Sammy Cat and other ladies in Kisqali
I have started 3rd cycle today.
Neutrophils were 1.3 when I saw Oncology last week.
So far I am doing okay and looking forward to going to Greece on Wednesday, although a little frightened. I have my 12yr old daughter with me
Thankfully I know thessaloniki well as my mother is from there. I will be staying with a friend whom I have known for over 40yrs.
Mobility, I still use 2 sticks ( have bought a trendy
I found that Tai chi has given me some if my confidence back.
I look forward to hearing from all you lovely ladies.
Take care
Gina x

Hi Kisqali crew.
I hope you are all okay.
Sammy cat, how was your 1st day at work
Lulu, it is a shame you only get physio 0nce every 2 weeks…have you tried tai chi?. It is very gentle.

I am now back in UK after a fantastic week in Greece. Even needed only1 stick for most of the time, except for long walks…
All went better than expected, even went swimming in the sea.
Ate all sorts of food with no abdo pain.
It was all good.

Gina x

Hi everyone, is Kisqali(ribociclib) available to anyone with sencondaries or is it just first line like palbociclib.

i’m running out of options here.

hugs to all


Hi Ramade and Kisqali ladies.
I hope you are all okay.
I can’t believe that your secondaries were not reviewed properly until 2011.
I believe that Doctors are like sheep and if one says it’s okay then they all go along with it.
It happens too often and yet they don’t like theit judgement being questioned.
As far as we are concerned it is part of theIr occupational remit to get questioned by patients. They are not God.
I hope you are managing with every day activities and can find time to do the things you like.
Have a good weekend

Hi Ramade

How were your results today? I was thinking about you as it’s such an ordeal. I had my latest results last Friday and got so worked up about them. Oncologist said that at the moment he feels I am in remission as long as the Kisqali and letrozole keep working . I had made up my mind to ask for specific information but chickened out!! I still feel rough all the time so my mind can’t quite believe it. Do so hope your results were all

Hi Guys…
Firstly, a big hug to you Ramade.
And Sammy Cat how are you coping at work.
Good to know you are responding to the Kisqali,although you may not be feeling it’s benefits…
Hugs to you both.
Gina xx

Hi Gina and Kisqali ladies

I have been back at work for 1 week and finding it very hard!!! The main reason is my back is torture and sitting down doing admin work is very difficult! I’m also getting very stressed as I feel I am letting my colleagues down as working in a hospital is so manic. Have you thought about going back Gina?

Ramade I do hope everything works out for you. Lulu -How are you getting on?

The Kisqali makes me feel very weary and my mouth is sooo dry! Does anyone else feel like this?

Gina you seem to be getting on very well with it. What were the results of your Consultant appointments in August? so many questions!! xx


Hi yes I too experience very dry mouth and there is tiredness but the tiredness got better after a few rounds. I am careful to eat after taking the medication as I feel nauseous if I don’t eat quickly. Now though my taste buds don’t work too well n don’t taste salt to well but it’s on and off.

I’ve been on ribociclib since August 2017. I was diagnosed with breast cancer 2007. Now with bone mets diagnosed in 2017 April.

Hi Annmat

Glad you to have dry mouth. I totally agree with you about not being able to taste salt. I have been so dry that I constantly drink water for my mouth and have now caused low sodium levels in my blood!! It’s all such a joy. It’s great to compare notes with others.

I saw on another thread that you were asking about PET scan. I would also like one as all my aches and pains are always dismissed as nothing! Keep me posted about your progress

Hi Sammycat01,

Yes it’s nice to hear that you are not the only one experiencing the symptoms and sometimes when the Dr poo poos your remarks I wonder if it’s me being paranoid or he being too casual. I know that my symptoms maybe mild in comparison to others but it’s always at the back of my mind what if…
I was clear of cancer for almost 10 YEARS! Sometimes I can’t believe it’s back!! I start wondering if I did something wrong or should have done more… I just want to bury my head in the sand and pretend it’s not there.
Does anyone experience any hip pain? It makes me wonder if it’s come back to my hip. My bone metastasis was at my shoulder.
Yes keep in touch and I’ll remember you in my prayers. Take care all. Cheers

Hi Sammy Cat and Kisqali ladies.
We are all facing different futures but I feel that we at least we can make plans.
I am now on cycle 3 of Ribociclib and it’s been okay… I am not sure if I will go back to nursing but I have recently revalidated, which has given me hope… I have been òut and about nearly every day.
Today went to London in Bloom awards and our community garden won 2 awards. I