Kisquli Tolerance ?

72 year old woman, 3rd return of breast cancer after 25 years - old breast cancer moved into my lymph nodes - rejected chemo (due to my age) and after diagnosis started on AI that reduced cancer size which was successful, had surgery and they removed 20+lymph nodes with 6 showing cancer. Then had radiation 16 treatments for mop up. Then the oncologists suggested the CDK4/6 along with continuing AI. My oncologist was very enthusiastic about the CDK so agreed. Took for 1 month - it was very rough - within a few day felt like I had food poisoning - spent most that month in my bathroom/of course sleep was disrupted due indigestion - did start feeling better on the 2/3 week however became very depressed (never have struggled with depression in my life previously) which was scary. Noticed my strength was noticeably reduced. Then to add insult to injury - was charged $2000 for first year of the drug (non-refundable). I stopped this drug after a month - just could not tolerate. Another alarming side effect was a significant White Blood Count drop to under 1000. My oncologist tried to talk me into CDK for 6 years instead of 4 - but still resisted. It has been a year now - still on AI and taking ZOMETA infusions every 6 months to prevent the cancer from moving into my bones. Also my white blood increased to 1200 - still low but better. I am feeling pretty healthy - able to walk/hike 6 to 7 miles daily so have my strength back. Wishing you luck with this drug if you decide to take - make sure you are monitored for WBC drop that can be very dangerous - do your own research on artificial intelligence - I find GROK very healthful with evaluating my medical information, also enable me to ask the right questions.

Wow. Sounds awful. I am afraid of drug drug interactions. I am on a laundry list for heart issues, blood pressure, cholesterol, acid reflux, anxiety, migraines and insomnia. I wonder why my onco didn't suggest I have a consultation with an oncology pharmacist? Before I left she just briefly said "you have 5 medications that will cause drug drug interactions". And didn't say anything else, the drug has been approved by my insurance company. But now what? Anyone have a success story to share?

Thanks for posing this question. I am not there yet, ( having to decidecide about ribociclib) but the decision will be coming up within next 2-3 months.

I have had such difficulty with MSK pain- should rotator cuff tendinopathy ) on letrazole that I had to stop after 4 months. General MKS pain manageable but those xhoulders! I need to decide what otherr hormone blocker to try before I get into CDK4/6 inhibitors. (Oncotype 11, Stage IIb? Initial lumpectomy November 2025 one node discovered involved and removed 8 months after dx. ) This has turned out to be a really long haul ( Dx end of Aug 2025. )

I will be following this thread closely. Thank you

@judithgrossman
the protocal where I am is to take ribociclib 3 weeks out of 4 and monitor blood work monthly to catch neutropenia low WBC etc and adjust number of weeks permonth on the drug based on blood test restuls. They say that after monitoring closely for 3-4 months they stop monitoring so closely becuase they have established how you react and how many weeks off you need a month.
Thanks

@judithgrossman Your breast cancer picture sounds a lot like mine. BM in May 2025 so I am 13 months out. The decision to start Kisquli must be made soon as it works best within 1 year of your diagnosis/surgery. If you are on cardiac medication (as I am) this is very tricky re: side effects which can be very serious. And also any benzo's for anxiety/sleep which I am on also.
So I must do more research. The oncologist pharmacist (who called me today) has advised me to speak with my cardiologist and psychiatrist. I hope they will be informed...no guarantee on it though. Medicine likes to stay in their own wheel-house. Hopefully I will get help to make the best decision I can. If there are any more thoughts out there, would love to hear it.
Kind thanks.

I was diagnosed de Novo stage 4 in January 2023. I'm now 72 years old. I was put on letrozole and Kisqali with plan to have DMX and radiation in a year. Kisqali did lower my neutrophil count and dose was reduced from 600 to 400 to 200mg daily. We all metabolize drugs differently and interactions can play a role. That said, research has found dose reduction to 200mg due to side effects has no affect on outcome. My neutrophils would go as low as 0.8 (800 depending on scale). They still can but recover better. After surgery and radiation my lymphocytes tanked and 18 months later are still low. But, I'm otherwise fine. As a pharmacist, I would recommend reviewing all meds with a pharmacist. It's also important to understand that the list of potential side effects are just that, potential. Drug interactions are more likely but a lot depends on how well you metabolize drugs in the first place. That's different for all of us. Since interactions can slow or speed up drug metabolism depending on the drugs, monitoring iss best. The CDK 4/6 inhibitors, like Kisqali, have been the most significant change in therapy and outcomes for breast cancer.

Yes, I understand what you are saying. I take it - you are now off Kisqali and letrozole?
Since I am on medication for cardiac microvascular disease nothing really can be adjusted if started on Kisqali.
I am already on the lowest dose possible with excellent effectiveness. My sleeping aid and medication for panic disorder (PTSD) are also effective. I have already spoken to one pharmacist who works directly with my breast oncologist and, frankly, he seemed not alarmed re: side effects for me. But, as you said, no one really knows, until you are actually on the drug to see how one tolerates it. I am on exemestane and Kisqali would be an add on...the % of helping to stop a reoccurrence? I was given a number of 10%. My onco said this is "huge".
The cardiac side effects are most frightening to me. I would be monitored with blood work and EKG every 3 months. The drug is given for 2 hears. 21 days on and 7 days off. Dosing would be 200 mg. twice a day.
You already posted my numbers, i.e. oncotype # stage, etc.
Perhaps it's not fair to ask you but you are a pharmacist - I know you already took it - but what you know about me re: my posts, do you think it's the way to go for me?
Kind thanks for your thoughts.

I've taken Kisqali for about 18 months (started March 2025). The 1st month I had to have weekly EKGs and blood work. Now I get monthly blood work and EKG only when I see cardiologist. It's known that Kisqali will change some blood values. As long as the changes aren't too big and the values don't change much, all is OK. But the medical oncologist must keep an eye on this--which is why I have see her monthly, along with the blood work.
One important thing to note: Kisqali interacts with atorvastatin, raising liver enzymes. I did not know this (and neither did the cardiologist who prescribed it). I had to stop both meds, until my liver values settled down. Then I resumed Kisqali with no atorvastatin and all was well. If I didn't know my blood values were a little "off" I wouldn't otherwise know I was taking Kisqali. For me, the medication has zero side effects. Try it. You can always stop.

@briarrose Have you spoken to your own pharmacist? I've found they can be very helpful. We can share our own experiences here on Connect, but don't give medical advice as we're not medical professions. I hope you are getting some good feedback, but to make the decision a pharmacist might help. Did you ever see an oncology pharmacist? I think you mentioned that possibility.

Thank you Peggy.
From what I understand Kisqali could possibly impact the heart, lungs and liver. And, of course, your blood counts.
I have heart disease. No problems with lungs or liver. I am 71. I am not on atorvastatin but 2 other statins.
I will be talking with cardiology and was advised to see a pulmonologist and hepatologist for a consultation re: this drug. I know about the liver values...and long term damage to lungs.
It's scary to me. The jury is still out for me...will get more information. Maybe I am overthinking?
But thank you again for sharing your experience, I appreciate it!