Ribociclib

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Metastatic breast cancer to bones. Diagnosed 12/21. No cancer history.  Excellent health.  No conditions and no meds.  Started Letrozole January 29 and Ribociclib March 24. Just finished first cycle.  Please share your experiences with this drug.  Side effects big and small.   Is it any different after several cycles?  Thank you!

  • Hi sorry to hear about your diagnosis, hopefully it was caught early.  I noticed you hadn't had any replies and by my replying to you it will bump your past back to the top whjere someone on simillar meds might see it this time and reply to you. 

  • How are you doing? Are you still on Ribociclib? I was on it for 6 weeks. My side effects were constipation and migraines. I have been taken off it as I developed liver toxicity. My numbers are still going up even though I stopped the drug 4 weeks ago. I won’t be able to go back on it now. The doctors have said we can discuss other options once my numbers have normalised but it could take 3-5 months. 
    Interested to hear any views or experiences. 

  • Sorry to hear this.  I had similar liver problem. AST and ALT hit 1200.  I had no symptoms so I refused a liver biopsy.  First 2-3 meds did nothing. It took steroids to bring them down.  Took about  4-6 weeks to get numbers below 100.  The worst part for me was side effects from steroids. I was hospitalized for 10 days for the purpose of 24/7 drip.  Managed to catch Covid in the hospital. Fortunately  I had no symptoms from Covid.  

    First month (April) I stopped full strength Ribociclib after 19 days for neutropenia. Took a couple weeks for  those numbers to be corrected.  Then (May) I took the lowest dose for 9 days and quit on my own. I was getting sharp pains in my head. A couple weeks later the liver problem showed up.  No Letrozole was allowed during liver recovery. Oncologist wanted me to start abemaciclib after liver problem corrected. I refused.  My first post diagnosis scan showed no cancer on May 31.  My second scan on September 19 showed no cancer after no Letrozole all summer.  Now the oncologist wants me to continue with Letrozole. I won’t do that.  
    I hope you have a better experience with the drugs you choose next.

  • Correction:  Letrozole was NOT allowed during liver recovery.

  • So interesting to hear your experience. I read an article about steroids being used to bring the AST and ALT down. I was going to ask them about that on Monday. My secondary cancer is liver and bones. I also have had no cancer previously, just straight to Stage 4. It’s amazing though that the cancer has gone when you haven’t been on any meds. I have my first 3 month scans next week. I was diagnosed 19 Aug. God I hope they show an improvement. So glad to hear your good news - hope everything continues like that for you.