Kisqali side effects and timing

@newfmamainoregon I've really had a relatively easy time with Kisqali. I take it in the morning because I read somewhere (possibly on the Kisqali site?) that it processes through the liver better that way. Fatigue is just a constant, so pace yourself and don't be nervous to ask for help. People want to help and that is good. I find that if I expend a lot of energy over a few days (ie. taking care of my grandchild), I need a few days of gentle activity and rest. I don't like this loss of strength and energy, but it is what it is.

Hi all, I’ve been lurking and learning. I’m also on Kisqali since February but due to some illnesses, had to take 2 2-week vacations from it while on antibiotics. I just finished my first full cycle of K since March. I believe I am feeling more side effects this past month than when I first started - itchy dry skin, some dizziness, chills followed by hot flashes, insomnia and of course body aches and fatigue. Truthfully, some of these side effects are also found from Letrozole so it’s a toss up 🤷‍♀️

But - from a big picture perspective- I feel great! I am out and moving and will keep on keeping on as long as I physically can. I would never have believed that I would have such quality of life with stage IV bc - especially while under treatment. God bless all the folks that helped develop these drugs to help us fight this monster so effectively.

I do have a question for those who have been on K for lots longer than I have. As @tougholdcrow mentioned, she takes the drugs in the morning. I have been taking them at bedtime but am thinking of changing to the morning. I think my insomnia stems from taking them so late. Since I do not get any stomach upset, I am hoping this change will be an easy and good change.
Thoughts? Advice? Thank you!

Wishing everyone an easy happy healthy week!

I take letrozole and Kisqali between 9 and 10 am. About 90 minutes later, I can feel a distinct wave of fatigue that lasts about an hour, but then I recover from it. I've been on the drugs since March 2024 and I'd say there's a cumulative effect of achy joints and just general overall achiness and I need more recovery time from a lot of activity. That said, I road my bike nine miles on Sunday and did an hour of reformer Pilates class yesterday. Pilates has kept me going through this whole thing because it stretches out my joints and muscles and makes things more bearable. But it's also quite challenging. How long I'll be able to do it, I don't know.

@newfmamainoregon

I also experienced distorted vision at the beginning, and again after a few months — but it has stopped now (I hope).

I used to see an arc in my field of vision with zigzag edges that lasted for a few seconds.

As for me,

I take Kisqali after breakfast, as my doctor told me it’s the best time to take the medication.

Here’s how I do it:

After having breakfast and coffee, I wait for about 30 minutes, then I take my stomach medication (PPI), which I absolutely can’t go without — I’ve been taking it consistently for the past eight months.

Then I wait another hour before taking Kisqali.

I also make sure not to eat anything again for at least one hour after taking Kisqali.

This routine has worked best for me.

Thanks all for your timing info for the drugs - it was good info to process. I’m in my off week for Kisqali, so decided to try taking Letrozole in the morning yesterday (I skipped my bedtime dose the night before). I spent yesterday day in a fog, lots of dizziness and so fatigued. I was out all afternoon regardless but decided to go back to bedtime for Letrozole. Since I’m going on a 3 week trip next Wed, I also decided to try changing my Kisqali timing in July when I back home and settled. Better the devil I know for now…

Thanks again for your support!! juliana xo

@raysal Good morning! I saw your question about timing of meds on a different topic convo & wanted to introduce you to this topic for some info. If you read these two pages (it’s a newbie topic 🐣), you will find some good info by folks currently taking Kisqali, some for years!

As you know, everyone has different side effects or different side effect strengths. For example, I cannot take Kisqali with food or even within an hour of food - others can’t take it without food. 🤷‍♀️

Hope your tolerance with Kisqali is an easy path! Keep in touch!

@hippmark I am happy to report that my dizziness and serious fatigue has subsided - why I don’t know but I am so happy. I am on my off week so who knows what my next cycle brings. Hope your tolerance gets better the longer you are on the med. And so you know, @tougholdcrow inspires me greatly too! As soon as I get home from my trip, I am going to start reformer Pilates as well along with a spin class ( my fave!) and the all important strength training (my nemesis 😝). I will do my best to stay healthy while away so I come home healthy and able 🤞🤞🤞🤞

Wishing ALL a comfortable fun weekend!
juliana xo

Hi all! Just popping in here to provide some helpful information on this topic:

https://www.breastcancer.org/treatment/targeted-therapy/kisqali

We hope this helps!

—The Mods

@hippmark

I have occasional dizziness and lightheadedness. I have been on 400 mg for 3 years now. In the beginning it took months for me to adjust. Give yourself time and grace. Had an EKG and echo a few months ago, and all's good with my heart. My hemoglobin and hematocrit are consistently low, but not too far outside the normal range and my MO sees no need for supplements. I take the drug right after dinner and don't feel any immediate SE's.

I don't know where you live, but I have always been very sensitive to heat, and I think Kisqali makes that worse. At this time of year I stay indoors as much as possible and drink a lot of ice water. You can be dehydrated without realizing it.

Hope this helps.

Eleanora