Using brand names for ease. I’ve been taking Kisqali 400 mg for 4 years for recurrent breast cancer IDC ER/PR+ HER2- BRCA2+ CHEK2+ Ki-67 50%. Had a double mastectomy the first time around, stage 1 but genetic mutations. 7 years later recurrent BC in chest wall. Removed tumor, positive margin. 37 radiation treatments then started Kisqali and Letrozole at the same time. Can’t do chemo because of pre-x neuropathy. Because the BC is so aggressive my oncologist felt some cells likely got away before surgery. Once the tumor was removed, nothing large enough to show on CT scan. 4 years later still nothing showing except the non-related lung NETs neuroendocrine cancer — 50+ slow growing tumors.

Originally took 600 mg Kisqali but immediately had the dangerous heart rhythm QT prolongation. Lowered dose to 400 and it stopped. I have had paroxysmal afib since 5 days after starting Kisqali. My worst side effect. Ongoing issue. First year or two extreme fatigue and trouble staying awake. The fatigue is less severe now than the first two years. I still run out of energy quickly. I now have serious insomnia issues rather than sleepiness but that could be the Letrozole. Hair thinning. Lower BP. Aggravates my neuropathy. Some joint pain probably from Letrozole. It lowers immunity. I wash my hands a lot and avoid sick people but am not overly concerned about lower immunity. When I catch a bug, I’m sicker and for longer than in the past. It sounds awful when I list it out but I will stay with the treatment as long as it’s effective. I still enjoy life and am still here.

Everyone reacts so differently to meds. One person has severe side effects and another has none and everything in between. I’m typically prone to adverse side effects with most meds.

Why Kisqali? My oncologist chose that over Ibrance and Verzenio because the clinical trials showed all 3 meds extended progression free survival time but only Kisqali showed an increase in overall survival. Ask your oncologist to show you the latest clinical data for each.

I do not like the heart rhythm issues from Kisqali but want the most effective med. Verzenio commonly causes severe diarrhea and that’s a quality of life dealbreaker for me. Just my preference. I would love to take a break from meds but don’t want to risk it. Lastly, I started octreotide for my lung NETs 2 months after the Kisqali and that compounded the original side effects. Hard to know how much fatigue and hair thinning (not bald) each med is causing.

Hope this helps. Prayers for your decisions and successful outcome.