Multiple Organ Mets and on Kisqali/Ribociclib (3+yrs)

neikka_cat

I always hear amazing stories from those with dx’d with bone mets de novo on this drug. Curious to hear from those with multiple organ mets or were dx’d secondary who have done well long term on the Kisqali/Ribociclib combo. Where were your mets, and how long have you been on this treatment?

missmonty

Hi Neikka_cat,

I was diagnosed DeNovo with lung Mets in 2017.

Kisqali/letrozole/Zoladex was my 2nd line treatment after Xeloda. It worked successfully for me for 3.5 years. I have since had progression and moved on to different treatments, but 3.5 years was a pretty good run. It was a very manageable treatment for me.

Hope this information helps.

Anna

moderators

Thank you for sharing, @missmonty !

moderators

Bumping this thread for @neikka_cat — can others weigh in?

Also neikka — check out the Ribociclib/Kisqali and letrozole for MBC thread for some experiences from others.

We hope this helps!

—The Mods

seeq

Hi @neikka_cat, I'm not on Kisqali, but I'm on a different CDK 4/6 inhibitor (Verzenio/abemaciclib) and anastrozole. It kicked my large/numerous liver mets in 7 1/2 months and I'm still hanging in there on the first line treatment just over 3 years later.

laguna24

hi, @seeq

I was recently diagnosed with liver and stomach mets. 16 years later after my initial dx with ILC in 2008. Started Kisqali/Femara.

Wanted to ask how are you doing on Verzenio with your liver mets 4 years later? Is it still working?

Hugs

seeq

@laguna24 hi, and thanks for thinking of me. I will have been on Verzenio/anastrozole for 4 years next week and I'm still good. I have scans tomorrow - looking to add another 3-4 months to my run.

I hope the Kisqali is working wonders for you.

laguna24

@seeq Good luck with your scans.

Many years to come

jbradb52

Hi there,

My wife is 22 months into stage IV mbc spread to lung and bones with a PET report yesterday showing avidity in the liver. She's a little over two months into Kisqali. How long did it take for the drug make an impact? I'm just looking for any reason to be optimistic for her, myself, and our kids.

threetree

jbradb52 - Hello. I don't think I'm the best person here to comment on your problem, because I am on Verzenio (a sister drug to Kisquali), but I can tell you my experience. After I started Verzenio, I had a scan at 2 months that showed some slight progression in my bones. Because of that, my oncologist at the time said she wanted to pull the drug and put me on standard chemo. I had read however, that it can take 3-6 months sometimes to tell if the drug is working or not, and she insisted that 2 months was enough. I pushed for more time and she reluctantly agreed to another month. Well, then she went on maternity leave and I saw her replacement and had another scan at more like 4 months. That scan was fine and showed improvement. Subsequently, I have stayed both on Verzenio and with the "replacement" oncologist now for a long time. I've been on Verzenio since May of 2023, so going on 2 years now. I have been stable with now some mild concern about possible progression. I have new scans coming up in March. I think there is a common time frame for Kisquali also, but I don't know if it is the same as for Verzenio. I'm pretty sure that some who are on Kisquali will come along with better info for you than I have, but given my experience, I would say give it some more time! Best wishes to you and your wife.

mswife

agree - 2 months seems a bit early to switch. I understand Kisqali can take up to 9 months to show improvement. Check with onc about liver lab tests and if your wife can perhaps ride out a few more months and re-scan?