Starting treatment

[susiemarmite]

Started treatment today. Kisqali (ribociclib) and letrozole. Feel sick and got diarrhoea. Will this settle down once I get used to it?

[Tam-56]

Hi Susiemarmite

Welcome to this board but sorry you had to join.

I’m sorry you are not feeling well. I am not familiar with Kisqali (ribociclib). Must be similar to my meds.

I have been on Ibrance (ribociclib)for nearly four years. I had similar reaction when I began treatment but resolved after a couple days.

I hope this is a temporary adjustment period as your body adjusts to meds.

Maybe run by your onc just to let them know symptoms you are having.

Hope you feel better soon.

Maura ❤️

[susiemarmite in reply to Tam-56]

Thanks so much. I have had an anti sickness and some inmodium and that has done the trick so fingers crossed. Just had first zoneta infusion yesterday so feeling a little achey but not bad at all. Chugging water like billie-o

[Hidden]

Hi susiemarmite -

I'm sorry that you're having these issues....and hopeful that your body will get used to the meds.

Take care,

Lynn

[Debbigbang]

Hi Susiemarmite

Welcome to the madness I call it. I have been lucky with my last treatment ibrance/letrozole some diarrhea and mouth sores. This new one fluvestrant/letrozole I get constipated and bladder infections.

From my experience, they do tend to go away, sometimes become an "every now and again". If they become annoying do mention to your onocologyst.

Lots of luck with your treatment !! Stay positive

Deb ❤🙏

[susiemarmite in reply to Debbigbang]

Thanks for this. Best wishes.

[Discocat]

Hi Susie

Sorry that your having some unpleasant symptoms.

I took Kisqali for about 3 months last year. It was my first treatment since being diagnosed in June 2021. I didn’t really have any reactions that I felt but I had to stop taking it as my liver didn’t seem to like it ( blood work showed elevated enzymes) I remember feeling foggy and flustered from the hormone blockers more than anything…but I also used to get rundown towards the last week of the tablets. I’m now taking Ibrance, letrozole and monthly Zoladex implant and Zometa infusions.

9 months in I can say it does get easier. The hormones…or lack of them…seem to have settled. Apart from occasional aches in bones and the odd hot flush its pretty manageable.

Hang on in there, your doing great!

Good luck with your treatments.

Best wishes Zoe x

[Mumberly]

I started 600mg kisqali and letrozole in January, with bloodwork and ECG test two weeks following. I also had my first zelodronic acid infusion at the same time in January. And started calcium and vitamin D supplements.

In those first two weeks I had a rash or hives on my hands, and my white and red blood counts had dropped, plus my platelets. I had also been unwell for a couple of days but I wasn’t sure if it was a gastro intestinal bug or a side effect. There was no nausea but I didn’t feel hungry. diarrhea was the main symptom and just generally feeling lazy.

My oncologist took me off the kisqali for two weeks to give my counts a chance to bounce back and then we tried again.

My two week follow up was last week and my white counts had stayed the same. 🥳. Still low at 2.2 but good enough to keep going on it. I didn’t have any diarrhea or unwellness this time around which was great. And still haven’t at almost three weeks in. The rash came back on my hands but not even a quarter of what it had been and now it’s pretty much gone. But new the second time around, was mouth sores. My oncologist gave me a prescription for ‘magic mouthwash’ and it’s working brilliantly.

This Wednesday, I start my week off of kisqali so I’ll be extra curious about my blood counts at my next follow up on the 15th. 🤞🏻 🙏

I wish you the best with your drug combo.

Kim

[DDIL1 in reply to Mumberly]

I’m considering switching from Ibrance to Kisquali because it’s a stronger drug and can suppress the cells longer. Are you happy on this drug? Is it worth the side effects?

[Mumberly in reply to DDIL1]

I haven’t been on it long enough to know the value vs symptoms and don’t have anything to compare it to, but the side effects so far have been minimal, and definitely better in the second two weeks compared with the first two weeks so I’m hopeful.

My WBC remain a mystery to me. That’s been the thing that affects my treatment plans the most. I’d love to be able to control them with food and fluids as I don’t have the patience to wait for bloodwork to see how I’m doing. I never feel any different when they’re down so that’s the only way I know their levels.

But in the grand scheme of possible side effects, I’m happy with how things are going.

I had a CT scan just before I started kisqali and letrzole and my next one will be in April so I’m looking forward to seeing those results. Although it may be too soon to tell much. We’ll see 🙏🤞🏻

Kim

[DDIL1]

Thank you. I heard Kisquali has a longer effectiveness vs. Ibrance. I’m already getting side effects from Ibrance so I want to be on the best drug that lasts the longest in the first line of treatment. Keep me posted I hope all goes well.❤️

[hurricaneheather]

this body has been receiving Ibrance and Anastrozole since Aug 2015. I recall the initial rounds challenging the body with (manageable) side effects. it did lessen. and, each round is different, pending the body at the time of the round. may the medicine do it’s work to heal the body.