Ribociclib/Letrozole Combo - How long have you been on this plse?

Hi @elisewjk I have been on the ribo/letrozole combo since April 2019, I have bone Mets in m spine x 2 and my pelvis, my spine ones are controlled by the combo but my pelvis one has started to grow. All in all I’ve been on the 600mg daily since I started don’t get much nausea anymore, have low neutrafils but just in the limits, very dry skin on my hands which peels like a sunburn and fatigue other than that I’m good on it. Now looking at possible radiation on my pelvis met

thanks Elise that’s very helpful

Hi @hopeful_cath01 I was diagnosed as Stage 4 Denovo with bone mets in Oct 2018. I started the same regime of drugs you have Ribo's, Letrozole and Denosumab. The protocol is/was to start you on the highest dose of 600mg. The studies showed that a large proportion of people just can't stomach that dose due to side effects, the most common being nausea and low neutrafils. I too suffered immensely on 600mg with nausea even with the maxelon and neutrafils went too low. So after some trial and error, many side effects, down to 400mg then down to 200mg. My body found my happy place was 200mg with minimal side effects, no nausea and I've been on that dose since then. The lower dose is just as effective as a higher one, its just that your body has to find the happy place where it can deal with them. Please discuss this with your Oncologist... When I started the drugs were still fairly new so I went thru several cycles to try and find the sweet spot for me and I had varying and different side effects each cycle til I settled. Please note all your side effects and discuss them with your Onco...  your quality of life is important too. :) Best wishes, take care. Hugs Elise

Hi, started on ribo600mgs, letrozole and bone inj. my problem has been the ribo makes me nauseated and vomiting even with antiemetic, ribo ceased , but i am to start again on 200 msg on monday. Has this happened to anyone else ?

Hi, this seems to be quite common. Mine are often lowish and my netraphils hover around 1.0-1.2. I have to stay above 1.0. I'm on 200mg Ribos for 29 cycles now. Was de novo with bone/spine mets, diagnosed in Oct 2018. How that helps some? Hugs 

My question is only started ribociclib and blood test came back bit low in white cells has anyone had this 
I have no problems taking that tablet so don’t want it to stop
have cancer in breast and bones in back 

Hi @christa still going strong - last scans all good. De novo with tumour at T11 which was pressing on my spinal nerve so it was removed and I had radiation - all ok. Still have pain which is managed with some good drugs...

I feel the same as a lot of the ladies here - I am past the 2 year mark on the Ribociclib 600mg/letrozole/denusomab combination and wondering how long a can keep the nasties at bay for. Great to hear @Deebs is 33 months in and stable :) 

Hi everyone,
Still here and going strong 😀600mg Ribociclib + Letrozole and 6 weekly denosomab 33 months and stable disease.

Hi @elisewjk,  I’ve had skull and spine mets since my initial diagnosis March 2018, which I had been taking Ribo/Letro combo for since June 2018. But when third skull met came up August 2020, my Oncologist changed me over to Tamoxifen. The effects are similar ie it makes me feel menopausal - run hot and cold. Less tired....I think...who knows really. And initially it made me feel like I was coming down with the flu - but that seems to have eased. I hope the effects are minimal for you and that it works. Have a good weekend. Hugs back. :)

Hi @LucyDee - I'm sorry to hear about your skull mets, how will they be treating those? And I'm glad to hear your T11 radiation has been somewhat successful. I too have a spot in T11 amongst many others along my spine - at this point still relatively small and stable. May I ask how you are coping on the Tamoxifen? I understand that will likely be my next treatment also... Take care of yourself, hugs! :)