Anyone on elacestrant (Orserdu) and ribociclib (Kisqali) for MBC?

Hi @rigal, I modified the title of your discussion to reflect your question about elacestrant (Orserdu) and ribociclib (Kisqali) for metastatic breast cancer. I believe @dalehagglund @zolamiller7 have experience with elacestrant. Several members like @mom23boys @ampeltekian @pbnew @leeann66 are talking about ribociclib here:
- Ribociclib: Looking for information about efficacy and side effects
https://connect.mayoclinic.org/discussion/rebociclib/
Rigal, how long have you been on the treatment regimen? How is it going?

Currently on xeloda. Tuesday 11/14 I start the new regimen. Thanks for asking

My oncologist have me on both Kisqali and Orserdu It's been a month since started. The side effects that I have lower back pain, depression and anxiety. I have so many emotions going on. I just feel kinda of lost at this point.

I just started with both for about a month. I have lower back pain, depression and anxiety

@matevagrover9

Make sure you talk to your oncologist about side effects. You may not want to add another medication, but sometime a anti-depression / anxiety med will help you get thru the day. That is what I had to do.

My Ribociclib experience- its brief.
Diagnosed 1/2022. Started Ribociclib full strength mid March. After 19 days I nearly passed out on the grand staircase in the Milan train station. Had I fallen there I probably would not be writing this. Blood test showed low white blood cells- neutropenia. Waited until mid May to restart at a lower dose. I quit 9 days later due to sharp head pains. Refused to try it again. Next blood test showed elevated liver enzymes AST and ALT near 1200. 35 is normal. Liver ultrasound was clear. I felt fine but doctors panicked and put me through hell including 10 days in hospital which came with a side order of Covid, 24 hours IV and a strong regimen of steroids. The steroids had a ton of side effects, some of which I’m still dealing with. Neutropenia and liver issues are listed side effects of Ribociclib. The liver Dr was certain Ribociclib was the cause.I was very reluctant to start the Ribociclib and I regret doing so. I did not have the emotional side effects you speak of. Everyone has a different experience but I think its important to be aware of them all.

I am on Ribociclib and Faslodex (I believe Orserdu is an option if one has the ESR1 mutation) for the past 3 months. My WBC tanked for cycles 1 and 2. It picked up a bit at cycle 3. I have been feeling down and angry, but I guess most of it is due to the diagnosis :/

For WBC: Try to walk every day, move a chair at a sunny spot and sit down. A nutritionist recommended eating garlic, so I'm adding it in everything I cook. Dark chocolate is also recommended. I haven't had an acupuncture since I started this regimen, I think I should.

I hear from fellow patients on this regimen that dose reduction is an option and effective. (Too bad they automatically start with the highest dose) Ask it to your onco. If available, palliative care team sometimes have gems about how to handle side effects. Keep them on hand.

I've been on ribociclib since june 2023. Neutropenia has been my biggest problem and im now down to lowest dose (with letrozole since April 2023). I was diagnosed de novo stage 4 bone mets. Never had surgery. The other thing that's happened is I am now NEAD. The 3 tumors in my right breast (largest 5.4cm) are no longer seen on breast MRI. The affected lymph nodes no longer light up. Bones have never lit up but now the lesions have shrunk, some no longer visible. So neutropenia has been a problem but I think the positives have outweighed the risks for me. Kisqali works this well for many patients I take to so I wanted this information put there as well.

I’ve been on Kisqali and Letrozole for over 3 years now. Blood counts always wax and wane but yesterday my neutrophil counts dropped to a new low in the danger zone, so neutropenia. I was originally told I would have to stop Kisqali if my count went below 1000 and it’s at 910. Now he said if it’s still low next month I will have to stop, but watch for infections. I know any minor cuts have become infected and very slow to heal in recent months. We already reduced my dose from 600 to 400 in the beginning due to QT prolongation. I read I would have to go off till normal blood counts then try reducing Kisqali dose to 200 now, but is that dose effective? Has anyone been on 200?