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Kisqali (Ribociclib), Faslodex (Fulvestrant), Femara (Letrozole) - is anyone on this combo?

After many years on Faslodex and Femara, my onc has decided to add Kisqali to the mix as my tumour markers are rising to the 100s although my ct scans appear stable. I haven't noticed anyone posting about this particular combination. I'm very nervous about the side-effects and I'd love to hear how people are doing. Is it better to take the kisqali in the morning or the evening?

Comments

  • mizbrauss811
    mizbrauss811 Member Posts: 1

    Hi @aoibheann

    I won’t be able to offer much long range info to you yet because I just started a similar regimen

    I had a Lupron shot about a month ago (to force menopause) which I believe is a similar style injection to fulvestrant.

    I’ve been on Letrozole for just over a month and started kisqali last week. So while we are on similar meds, I’ve only been on them a short while. So far, I just feel anxious and tired at the same time which is very annoying. Slight headache and nausea but it comes and goes.

    I’m more commenting to offer support and let you know you’re never alone. This is some scary stuff to navigate and sometimes even a kind word can mean a lot, I hope you’re hanging in there. I am…. Barely 😅

  • malleemiss251
    malleemiss251 Member Posts: 50
    edited March 23

    @aoibheann, stay strong and be kind to yourself. I am in my 6th cycle of femara/kisqali after being dx as de novo stage iv. No bone strengtheners for me yet because I have had extensive dental work. So at least another 6 months before I begin that but am very lucky cos my bones are strong according to DEXA scan. I have been lucky with side-effects, they come for about two days and then go. My tumour markers - CA15-3 - are coming down and now are at 14. My onc says that it is likely that my base CA15.3 number is quite low so we shall see how much further down it goes, if at all. My bone scans actually show some regression - but radiologists playing it safe and saying stable - I can live with stable very happily. They were peeved because it was almost 5 months between scans. I have talked my onc into 4 monthly scans instead of the normal 3 months. My bone scans are problematical because I have sclerotic lesions only. So progress can very difficult to track.

  • aoibheann
    aoibheann Member Posts: 250

    Hi @mizbrauss811, thanks for checking in. I'm just about hanging in as I caught a chest infection from my little grandson just a week after starting kisqali and had to go on antibiotics. When I went in for my two-week check-up my neutrophils had dropped to 750 and my CRP levels were raised so my onc has taken me off kisqali for a week. Hopefully my neutrophils will have risen enough to allow me take kisqali again when I go in next wednes for blood tests. I'm concerned because though I've finished my course of antibiotics I cannot shake this cough. Hope you're doing ok.

    @malleemiss251, it seems like you're having a positive result from kisqali, which is great news! Delighted to hear that your tumour markers are so low - 14, and especially that your bone scans are stable. For the two weeks I was on Kisqali my main se was nausea and unless I took a valoid midday I couldn't eat.

  • cure-ious
    cure-ious Member Posts: 2,723

    aoibheann, Did you get a Guardant genetic test? For example, if the cancer has developed an ESR1 mutation(s), then it might be better to move to an oral SERD plus CDK4,6i…

  • aoibheann
    aoibheann Member Posts: 250

    @cure-ios, I did have a genetic test but I don't think it was the Guardant test. I must look for it. My dh files everything away and then I can't find stuff…