Kisqali/ribociclib, Faslodex/fluvestrant & Xgeva combo - Anyone?

@amybear Best of luck with this combo, it's working well for me. I also get a burn with Faslodex shots if they are cold and if I don't take antihistamine, so I usually ask whoever is with me to hold the syringe in the palm of their hands for a few minutes + take off the counter medication (claritin).

Hi,

This is my first post. 

In December 2024 i found out my original breast cancer from 2020 had returned, metastasised to my sternum & lungs. 

I started Kisqali in January 2025, halfway through cycle 2 I had to stop taking my tablet due to acute raised liver enzymes, I am currently 4 weeks off the tablet, my ALTs are starting to reduce at last although still very high at 750.. (normal range under 100), my oncologist expects it to take a few more weeks to reduce to normal range before I can go back on a treatment. I continue to get my Fulvestrant & Xgeva injections. 
Has anyone been off their Kisqali before for a few months?

I have been on fulvestrant/xgeva since May, 2022 (Kisqali was delayed until August, 2022 to allow for SBRT of bone lesions in my skull and pelvis). I've acquired a few tips on the injections over the past three years. I lean over the recliner that's in the room and put the knee of the side being injected on the seat to remove as much tension as possible from the muscle being injected. Even though the fulvestrant is no longer refrigerated, I insist on having the tubes to warm up for 10 minutes or so (one in each armpit works well 😉). The Xgeva tube is small, so you can warm that up in your hand. Request plastic bags with ice cubes (not those shake and cool first aid packs) and put one behind you on each site for the car ride home for 20 minutes or so. One of the nurses explained to me that before you try to get the medicine to disperse, you want to minimize the muscle trauma from the needle. This has made a big difference for me.

I started Kisqali in August, 2022 and had to stop the 600 mg halfway through the cycle due to debilitating pain and diarrhea. Waited 10 days and started 400 mg. Still had SE's but less intense. These improved going forward and are now very manageable with occasional Immodium, Phazyme and Pepcid AC. I have intermittent bone and joint pain, but I'm in my 70s and have arthritis, so not sure of the cause of the pain. I take celebrex for arthritis and gabapentin for nerve pain.

I am thankful that I'm able to live a pretty normal life. I ride a stationery bike every morning for 45 minutes and walk outside when the weather permits. I help care for my grandchildren. I use resistance bands. Since my Stage IV diagnosis, I have been trying to check off bucket list items as fast as I can and have visited 15 countries and several National Parks. I try to focus on every success and each joyful moment, no matter how small, because I want to live as much as possible before I die.

None of us know which medicines will work for us and for how long. I am grateful to have had a good run with this combo, but I still know that the "other shoe will drop". My "scanxiety" is intense, and waiting for the results of my monthly bloodwork is always a "white-knuckler".

I wish everyone here success with this treatment and manageable SE's.

Healing thoughts and virtual hugs

Eleanora

Diagnosed Stage IB with micro metastasis in 1 node 6/2022

4 rounds TC, 16 rounds radiation, endocrine therapy since March 2023 (anastrozole then faslodex)

Diagnosed with lung and chest lymph node mets 6/2025

kisqali 600mg and fulvestrant

Have questions about anyone experiencing the lung-related side effects like shortness of breath. I'm not sure if I'm hyper vigilant and it's anxiety or if it's truly side effect related. It is very, very mild right now. Has anyone experienced anything like this? Does it get better (this is only my 1st week of my 1st round) as my body gets used to the medication? Any feedback would be appreciated.

I start my 3rd round of Kisqali today. Started with Ibrance, but insurance wanted a switch to Kisqali, so I guess I'm technically starting my 4th round of treatment, with 4 months on fasoldex and 2 zometa treatments. Kisqali dose reduced to 400 due to WBC drop down to ,7, so I've had a week's delay after every round. My oncologist thinks this will settle down as we go along. At 600, I had nausea all day, but at 400 it's less than an hour, so that's a big improvement. At 400. my last count was 1.0, so still low but better. Now I have itching, but it's not terrible.

I believe it’s a risk mostly in the first few treatment cycles - I think the guidelines from the drug company are to discontinue surveillance ekgs after the first few months? So it shouldn’t be a cumulative effect over time. Having said that, many many drugs can also cause qt prolongation (especially antidepressants and antinauseants).