Dear sisters,
After 4 1/2 years of taking Ibrance+letrozole, my scan showed just enough progression that requires change of systemic therapy. I’d be switching to Kisqali+ letrozole. Even thought it has plenty side effects, I couldn’t imagine taking abema giving that I’m in a wheelchair.
Please share your experience with Kisqali. How long are you taking it. What was your side effects and when did they occur.
Praying for effectiveness and tolerability.
Wishing you all the best!
Polina
Kisqali & letrosole has worked well for me in keeping my cancer antigens (CAs) within the normal range (under 30 in Canada). I have now taken it for more than 3 years.
In October 2021, my CAs were 179 before I started ribociclib (Kisqali). It took until December 2022 before they fell to 23. They have remained in the normal range since then.
I now am on a schedule of 5 days on meds with weekends off to keep my neutrophils in the normal range. I first developed breast cancer in 2006. I had surgery at the time, and forgot about it until my right arm swelled in 2019. Scans indicated that the cancer had metastasized to my lymph system, bones, liver, etc.
My oncologist prescribed tamoxifen which reduced my CAs (to 49) as long as I took double. I foolishly told this to my oncologist who refused to allow this (not on his protocol). A year of single tamoxifen resulted in my CAs climbing back up to 190. I then switched oncologists.
I am 79 years old with limited energy. I think cancer meds are as much to blame for my energy level as is my age. However, I am not in a wheelchair so I am sorry you are.
Best of wishes, Cindy
Thank you so much Cindy for sharing your experience. I’m happy to hear that you’re doing well.
What dose are you taking? My oncologist starting me on 400mg
Any side effects besides neutropenia?
Hope you’ll be doing well for many years to come
Polina
Hi Polina, I was started on 600 mg, but I soon reduced that to 400mg, so I take 2000mg of ribociclib in a week (5 X 400 mg). Fatigue is the only side effect I notice, but I keep in mind that my age and lack of exercise could be as much, if not more, to blame. I hope you do well on this regime. I'm glad to know some oncologists may be paying attention to the available research. Regards, Cindy
Hi Cindy, it’s so good to hear from you!
Hope you’ll do well on this regimen.
Welcome to the Kisqali and Letrozole combo. I have been on these meds for 3 years. Side effects are for me are; fatigue, muscle pain and joint pain. With the fatigue it was constant because I had just come off infusion chemo of A&C. The muscle and joint pain started about three months and they kicked my butt for over a year. They have lessened a lot but they are still in the background but, I am able to live with them. Others don't have the same reaction that I have to these meds. Good luck with it.
My white blood cell count was low but not alarming and it has steadily gone back up but not back to normal. And yes the pain was strong enough to require pain meds. I have a prescription for Hydrocodone. These days I very rarely take it, unless I overdo it with activities then I have a flare up. I started off with 600 mg of Kisqali, initially 3 weeks on one week off but I was so fatigued it was unreal, so we tried two weeks on and one week off, not much relief and then one week on one week off, which was okay, at least I could work. That schedule lasted for one year and a half. Then down to 400 mg same schedule and now I am on 200 mg for 3 weeks on and one week off.
Thank you! I’ll start on 400mg 3 weeks on one week off. Will see what will happens 🙏
Good luck with it, my dear friend!
Hello warriors… after 3 years of taking Ibrance n Exemestane my recent pet scan showed metastases in my liver. So all above meds were stopped asap n my appointment with onc is Feb 6 but I was told I will be put on Truqap 4 pills a day for 4,days n 3,days off. Faslodex which is an injection
Experiencing high anxiety. The unknown of side effects with these 2,new meds. The same way when I was first diagnosed with stage 4,bc. 3 years ago
I have been on faslodex for over 5 years with ibrance. The injections aren't too bad once you get use to them. Warm them in your hand and try to get the same nurse all the time so you can figure out what works for you.I just went off ibrance after a good run and started truqap a few weeks ago. I was so anxious with reading the side effects of this but I think I have adjusted to it.
Yes there might be diarrhea so have immodium on hand. If that doesn't work they can give you prescription drugs. I only had it one day and that has been it so far. Rash is another side effect. I was told Claritin every day but I got the rash. It went away fairly fast, so I take zyrtec at night and it hasn't come back. To me this is trial and error. There is a group on facebook for truqap that has really helped me. They discuss what they have had and what is helping them.
Good luck on your new journey.
Hi I am on Truqap & Faslodex just a tad of diarrhea. Take a deep breath
Dear BC----How long have you been on this duo? Are there any signs that the combo is working for you? I started the Truqap. last week at half dose. ( i've lost too much weight ). I was supposed to begin the Faslodex this week but I have absolutely no energy. It's complete exhaustion. So, I will begin the Faslodex soon but not yet. I too have had diarrhea but nothing outlandish. Did you have the eshaustion?
Soooo I was on the combo in December for 3 weeks full dose. Rested it cuz I went to Australia. Re-started it when I came back to NYC. Been on it 2 weeks, scan in March. Feel fine, no exhaustion just diarrhea. I have no idea if it’s working but will get blood drawn next week. …to check silent side effects. I pray you get your energy back soon!!
NED with Kisqali
Progression of BC Mets
I am wondering again, what do those of you on kisqali do when your ANC is lower than 1?
A community of HOPE 
