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Bone, secondary cancer

Secondary bone cancer is cancer that has spread to the bones from a primary cancer somewhere else in the body. This group is for people affected by secondary bone cancer to share experiences and get support.

New treatment for me. Faslodex (fulvestrant) and ribociclib (kisquali) has anyone had this combination

greengirl74
Posted by

Im getting a transfusion in Saturday but only started kisqali on Wednesday as my bloods were low as i said.  Ive been sick once. Xx

Karen

Evette
Posted by

Hi so glad to find people going through the same thing on here. It just helps to talk to people with the same treatment. I'm going to be positive going through this I don't know if you feel the same

greengirl74
Posted by

It definitely does. There is nothing else for it.  Be positive. 

Karen

Evette
Posted by

Nice to hear from you and with the same attitude keep in touch thank you for replying xx

Lollipops84
Posted by

Hi I’m on this combo did you want to know more about it? X

greengirl74
Posted by

Yes. I started on 3 tablets it wrecked my wbc they stopped tablets after two weeks. Second month, last month i got to week two on one tablet. They have now stopped them while covid19 is ongoing. Still getting the injections i was there today x

Karen

Lollipops84
Posted by

I’m on my second cycle of Ribo I started it last Tuesday, after my first cycle I had to have a few extra days off as my wbc was also rubbish but after a few extra days and eating lots of veggies mine shot yo enough to start my cycle. I still had my Fulvestrant and zoladex between the tablets. I’m still on 3 tablets a day for 21 days but I won’t be shocked if that changes, did you ask for yours to stop or did your onc suggest it? X

greengirl74
Posted by

They told me to stop it. How is your haemoglobin? Im going for my third transfusion this morning in 3 months x

Karen

Lollipops84
Posted by

I don’t know my Hemoglobin but my chemo nurse said mine were fine that’s all I know! I know my wbc was 0.4 after my first cycle but in the few extra days I was off meds it jumped up to over 3 ( I thanked my Nan for making me eat lots of veg haha ) I hope your blood transfusion goes well. Are you happy being off meds? I don’t think I would be but that’s my own personal choice and I know everyone is different xx

greengirl74
Posted by

Not my choice.  I dont understand why its ok?  Ribociclib stopped xx 

Karen

Lollipops84
Posted by

Hi Karen, 

did your onc not say why it’s been stopped? Is it because of the virus? I’m sorry it must be so worrying for you, I can only think that your onc knows or is confident to stop it and knows it won’t effect you to much otherwise I think you’d be carrying on with it xx

greengirl74
Posted by

They said benefits outweighed the risks. I dont understand that when they prescibe the two together. I now have noticed breast tumour seems bigger again this happened in November when they said treatment wasnt working, also been plagued with left had side of face, especially lip ans teeth kinda numb and tingly!  No idea if its related. Im due back for fulvestrant next Tuesday.   How are you keeping? Xx

Karen

Lollipops84
Posted by

Hi Karen, 

do you think your Breast tumour has got bigger or is it maybe your head making you think that? I know my head tells me lots of stuff that’s not real. So your carrying on with the fulvestrant Injections still? If so then from what I’ve read that will also help control the cancer, are you on letrozole or tamoxifen? Or zoladex? If your cancer is er+? If your onc says the benefits outweigh the risk then they must be confident for you to not have the ribociclib xx

greengirl74
Posted by

Yes as it grew in November it feels the same again. Im on fulvestrant, zoladex and denosonab although i never got it last month.  They have stopped the ribociclib because my white cells were too low and then the virus hit.   God knows il see what they say next week. Yes, she said the fulvestrant works on its on along with zoladex and that im still on treatment just not optimal treatment.  Time will tell xx

Karen

greengirl74
Posted by

Yes our heads to make us think things are moving etc at times i dont think that can be helped! Xx

Karen