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

@forza I would love to do that hike. I knew someone who did it and kept a beautiful journal of the experience. Now that I'm two years out and stable, I might think about that since I've always been a great hiker. And you don't talk too much!

hi @eleanora ☀️

I shouldn’t give people hope , I’m just lucky. I do nothing extraordinary to deserve being this long on first line treatment.

Oh and I was never on zometa , English is not my first language. I tried to say if zometa doesn’t agree with people there are other options. Xgeva is easier on the body maybe because it’s monthly and not 3 monthly. Easier for me without a port and invisible curvy veins.

You have every right to stretch these meds out longer. It’s your body. I was originally told I could only take Xgeva for 5 years … yet here we are. I skip the odd month , I inject myself and don’t always have syringes in the house.

Keep well

A beautiful image, @forza . I'm reading The Canterbury Tales again, so hopefully I will get even more inspired to do this.

@raysal I went through this thing with low neutrophils and they lowered my dose to 400 well over a year ago, and I'm doing fine. My neutrophils still dip down, and I worry about an even lower dose being prescribed, but I have a superstition that I do better if I have my blood work in the afternoon. My onc says there's no scientific evidence for this, but it works for me.

I had several cycles with an extra rest week to get my neutrophils back to 1 or a 1000 or however they write it up. Been lowered to 400 and 6 years later it’s still doing the job. So don’t stress when they lower it 💪

If Kisqali wants your neutrophils down, they’re going down. The real magic is in the week off and if needed : a dose drop — not the food aisle. (This is meant to be comforting , sorry I’m no poet)

Hang in there 😎

@forza 6+ years. That is amazing and heartening. I'm glad you are still around for the journeys and are making the most of this precious life. I had genetic screening right away, since my daughter was worried. It turned up a CHEK2 gene of indeterminate danger (there are variations of the gene). I told my immediate family, since they knew of my cancer anyway. Then I had to decide whether I should tell cousins, and worry them.

good morning! I had the genetic screening right at the start, I asked for it immediately but probably would have had it anyway since I have children. I am negative across the board. My adult kids were thrilled to hear tho know it is no where near a guarantee - look at me.
My closest friend died of BC back when we were 39. We learned afterward that she carried both BRCA genes and her 2 daughters also inherited them. They were 4 & 7 when she died. OMG - what a terrible time and I can’t believe it was over 25 yrs ago now… 😢
Her younger daughter had a preventive mastectomy at age 31 (last year) and her older daughter is waiting to get pregnant first but has a team at Sloan’s keeping close watch. My friend would have lived if she were diagnosed now, I am positive of it! Needless to say, my diagnosis from out of the blue freaked us all out.
Long story short, I found my MO at Sloans through my friend - wild coincidences one after another that resulted in my choice of doc! It is one of those stories that help keep mediums in business 😂 @forza Your success with this combo of miraculous drugs keep newbies like me clam and inspired. The great scans I recently had help too 😊 Thank you!

Hope everyone enjoys the 2025 summer’s end! juliana xo

my inspiration here was Kangaroo ??

There’s more of us *oldtimers out there and on here. I hope I don’t come across as smug , nobody knows if it’ll work or not. Maybe my pet in December goes all yellow , who knows 🤷🏻‍♀️ there’s micronodules in my lungs that come and go without any intervention. The day will come, but NOT TODAY !!!

x

It's my two-year cancerversary, and I'm very happy to be alive. I've been on Kisqali for 19mos of that time, after 5 months of AC-T chemo. The big ground-breaking Monaleesa-2 trial for this drug suggests that those who have had chemo have worse outcomes, but I'm not sure why. Maybe they have had a much longer time with the disease. (My bout of chemo was an error, since it took them 6 mos to figure out that the spots on my PET were actually bone lesions. Oh well, water under the bridge.) I have some good things going, since it appears I have bone-only metasasis (after worry about a lung nodule which has remained completely stable), I'm in relatively good shape for a 68-year old, I was de novo at diagnosis. But the statistics are pretty good for everyone. The OS at 18 months is really good, according to the Monaleesa-2 trial, with 60.9 percent still alive at 48 months. That's an amazing thing! Some newer real-world studies are putting progression-free survival at 34 months, with a 3-year OS of 86 percent. Just amazing. When I first had a lumpectomy 25 years ago, they thought it was benign, but my breast tumor just happens to be in exactly the same place. I am glad that it had not spread 25 years ago before this wonderful science had come along. Sure, I have fatigue and joint pain and thinning hair and all that, but as I always say, it is better than the alternative.

@tougholdcrow So happy you are here to crow about your success at keeping this beast under control! 😊 I find you inspiring and pray your good health and wonderful outlook continue for many more years to come! Party time 🥳🥳 Thank you also for reporting the great news regarding the effectiveness of these drugs. May all our outcomes using these drugs be just as positive and result in even better survival stats as the years go on!! To life! L’chiam!

@tougholdcrow I’m happy to hear the news. I was hoping for good news myself; however, after 4 cycles of ribo,, plus 3 zometa infusions, pelvic MRI showed progression of lesions, broke through bone into outside tissue. I’m very sad right now and I haven’t even heard from the dr.

I saw MO on Friday. She tried to show me the largest lesion on illiac wing but was struggling finding it on the MRI. Evidently, it’s much harder to pinpoint things on MRI vs CT. She eventually found it. Her recommendation was see radiation oncologist to try to lessen pain, took blood sample to send to Guardant mutation testing and stay the course with Kisqali/Letrozole/Zometa until after Oct. CT. Maybe look at switching to Faslodex instead of Letrozole. I’m going to be reading up on the radiation and Faslodex. If anyone has any feedback, I’d really appreciate it.

@eleanora I'm on kisqali + faslodex + letrozole. My neutrophils and platelets are low so my kisqali dose has been reduced to 400g 18 days on and 10 days off.

My digestive problems are increasing, nausea and vomiting, constant 'bubbling' sensation in my stomach combined with belching and worse! Does anyone else have these symptoms and what do you take to ease it? It's difficult to plan as I never know when I'll be sick or what triggers it.

@aoibheann These are common struggles for all of us who take Kisqali! I also have taken the reduced dose for about a year now. I eat and drink tons of probiotic foods: lots of yogurt and kombacha, ginger tea before bed. For neutropenia, I put a tablespoon of unsweetened chocolate nibs on my yogurt everyday. I try to do as much aerobic exercise as I can, which is supposed to help. My numbers have improved.

@ radiation_cinderella, I take kisqali after breakfast too. I hope you are feeling ok. Take care of yourself. Hugs x

@tougholdcrow, I've tended to drink peppermint tea but I'll try ginger tea instead. Also the unsweetened chocolate nibs (once I source them).

Apologies ladies but I thought I'd posted my reply. Hope you're keeping well. Thank you for your advice.

My GP thinks I have chronic constipation and that's causing my digestive problems. She's px laxitives - movicol and senakot- for 6 weeks. I've thrown up twice so far since taking them (2 weeks). The nurse at my hospital today told me to stop taking the laxitives and to change from esomeprazole to a different PPI and to increase dosage from 40mg daily to 80mg daily.

Also today the same nurse decided not to access my port and took my bloods from my veins. She said I didn't need to have my port accessed until every 8 weeks which was news to me. Who knew! So now I'll attend the nurse at my GP's surgery for my faslodex injections and to have my bloods done every 2nd month.

Take care xx