Ribociclib/Kisqali with Letrozole - Any one on this combo?

Hi everyone

I follow this thread, although I only comment sporadically, as my treatment has been Kisqali/fulvestrant. It's my first line and I've been on it for four years. I may be switching to Kisqali/letrozole in the next few weeks and would greatly appreciate your input as to side effects.

I think it would be useful to explain how I got to this point, so apologies for the long story. Between June and December, 2025, I had recurring bouts of diverticulitis and Kisqali was stopped intermittently for a total of thee months because of antibiotics. I continued on Fulvestrant the entire time. In December I resumed Kisqali at 200 mg for 2 cycles then returned to my normal dose of 400 mg. My MO ordered a Tempus test which showed a low percentage of ctDNA and no actionable mutations. My most recent scans showed 3 small bone mets (I'm bone only) and a small growth of 2mm in an existing met. Two of the mets have already been radiated and the other two have been scheduled for radiation on May 26.

My MO proposed a possible treatment change to Verzenio/fulvestrant, which I refused. I don't think my GI tract is sufficiently recovered from the damage of diverticulitis to withstand Verzenio. I also don't think Kisqali failed - it was simply removed for a long period - and I questioned why she didn't think Fulvestrant is the treatment that failed since I continued that even in the absence of Kisqali. She admitted that, in the case of mutations, there's really no way to tell which medication failed. To her credit, she agreed to discuss the possibility of a switch to Kisqali/letrozole with her colleagues. I was lucky to be able to schedule a second opinion appointment with a very well regarded MO at Johns Hopkins and saw her last week. She said that she would prefer a switch to Kisqali/letrozole rather that Verzenio/fulvestrant and said that she would send a report to my MO.

I am at a crossroads and would welcome comments and suggestions.

@tougholdcrow

Thanks so much for your input. One of my recurring issues throughout Stage IV is that my MO, while brilliant, is relatively young ( my guess is her 40s, but at almost 76, that's young to me) and her responses at critical moments like this sound as though she's reading from a manual. No ability to "think outside the box". I'm hoping that the Johns Hopkins MO, who is much more mature, will add her expertise and creativity to the mix moving forward. At almost 76, with a good QOL, my goal is to maintain that for a few more years before I leave.

@forza Wow, what would have caused those fractured ribs? I had a fractured rib during chemo a couple of years ago when I felt so ill and was coughing all the time. I wonder sometimes if my bones are weaker now despite the Zometa and daily calcium. Sigh. I am SO glad it all came out ok with your scan. Kisqali is an amazing drug. I don't think they really know yet about safe "deescalation strategies" as they call them, meaning whether Kisqali can be lowered or even dropped without consequence after a period of time. I hope the low neutrophils are not making you feel too wretched.

@forza I am training for my little Camino del Norte walk in August. . . only 6 days, not the full deal. I'm walking in Michigan and now on the east coast. And lo and behold I picked up a tick and have to go to urgent care tomorrow to see if I'm getting Lyme disease. Cripes. It's always something. I'll keep you posted on the Camino trip.

@tougholdcrow how fun (not the tick) , I’m sure you won’t get Lyme … don't they just give a few days of antibiotics as a preventative measure ?! Fingers crossed.
Are you doing the last 6 days into Santiago ?
I should be somewhere in the Los Arcos area around the eclipse. But I’m chickening out. I’m very heat sensitive and Europe as a whole is getting hit by heatwave after heatwave. I’d only lose my train tickets to be fair but I’d like to go , just not when the temperature goes over 40C daily. I can also only go for 2 weeks. I ran out of house-sitting time because I went into MS rehab / revalidation for 3 weeks already this year. I do regret doing that , they saw me as a cash cow (luckily I’m really well insured) and I came out the same physically but mentally worse. I kept hoping that stay would be an investment in my future self. Never again. To think foreigners pay lots of money to come here for that. I thought myself so lucky to have access to it practically for free. I digress.
yes Camino 😊😊 we love our Caminos .
So far I did 1 training walk 🤣

Off to get bloods again now to see I managed to get above the 1 or 1000 or whichever measurement they use in different countries. Joy

xx

@forza Joy I find it so weird that you have been stable for so long and now have this neutropenia problem. I guess I was under the impression that our bodies adopted to this medication. I hope that 200 is good maintenance especially since you have been stable for a long time. Some folks have gotten 10 years in the old days of letrozole alone. I hope all things are turning in the right direction soon.

@moderators I'm on a short break because yes, I have Lyme disease. It's very early days, so I should come out of it fine. Just feel a bit fluish. Fortunately, I was near my one week break from Kisqali anyway. Be careful out there. In some places, like where I live, blacklegged ticks are 50% likely to be carrying Lyme. It's turning into an epidemic.

I am not going to Santiago this time, but hopefully next. Ending at the eclipse may be a bit more pagan than Catholic. I chose the north coast in hopes that the heat will be more reasonable.