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

@tougholdcrow thanks for the info….has it finally gone away

@airlinegal i had to go on 1 pill for a couple of days because on cycle 4 I started having QT prolongation on 3 pills…I had to interrupt, took a longer break, then back on 2 pills for cycle 3, had to go to 1 pill because my heart was still not handling it well. My oncologist and I wanted to give 2 pills another chance and now I’m on it and it’s fine. I started cycle 7 on Monday.

I’m attaching the table from Novartis that has the guideline on my issue.

Cycle 1-3 had no heart issues. No idea why it started showing up on cycle 4. I was worried when the dose was reduced to 1 pill but I guess if they can do it then it works still.

Best of luck ❤️

@airlinegal I think every body is different…My first two cycles on 3 pills were really difficult, but I was also at the beginning of my hormonal treatment and I was recovering from a back surgery…so it was too much on me. Cycle 3 was better but my heart started acting out on cycle 4 as I mentioned.

To be honest, for me, there’s a huge difference in how I feel between 3 & 2 pills. I didn’t feel a thing on 1 pill. 2 has been tolerable so far and I hope it continues this way.

Best of luck with your doctor, I’m sure you will reach something you’re comfortable with. May you get all the benefits from the drug and May it be kind on you <3

@tougholdcrow, there are lots of posters who have had success with the lower dosage of Kisqali. I agree with you - truly wonder drugs. They have given me 11 months of very good quality of life. My tumour marker increased by one last blood work, but that may be normal bouncing around, the cold I have, or the probiotics I started to take last month. It is still well within normal range. We will see what the next labs say in 2 and a half weeks.

I am peeved at the cold because it has stopped me from going to the gym - working on the better to be safe than sorry principle. I have an immune system, but it is right on the bottom end of the normal range. I am guessing I caught the cold at the gym - a good many retired guys have decided to join the gym, all of a sudden. I am thinking they have been influenced by olympic fever and want to improve their physiques a little - lol. On the downside, they have no idea of gym etiquette - grrr.

In everybody's pockets for good news and a wonderful day.😀

Also De Novo Mets to bone. On Kisqali/Letrozole combo 9 months. I had to pause after first round for 12 days, then 400 for a month. Have been on 600 since then with minimal side effects . Oncologist said everyone’s bodies adjusts differently. I had a great scan after my month of 400. There has been good success with lower doses. Remember just because our journeys are different doesn’t mean they all can’t be successful in this battle. 🤗

@airlinegal so sorry you are having such a rough start on these meds. I hope your body adjusts and you get into a good rhythm. The good news is that if this drug doesn’t work out for you there are others that have worked better for some patients. Wishing you better days ahead.

@tougholdcrow, my GP and onc were very much - "no Gym" for 11 months. My numbers are all on the very low side of normal, so they agreed to resistance training as long as I didn't take risks. I am not sure onc has forgiven me yet for saying no to denosumab. I have my reasons and they are rational, but I have no doubt it will be raised again in the future if my bone density reduces. Hence my push for resistance training - anything to keep my bones strong. I thought it best to take time off till cold resolved itself. I am a creature of routine and find it difficult to restart after stopping for a while. I am back to it today.

It is bizarre - after beginning the probiotics I felt dreadful, it might have been the cold or the probiotics - it has taken a month for me to feel back to normal. Onc definitely wasn't concerned about increase of ca15-3 - it went from 11 to 12. She was so unconcerned about them that she talked about not doing next scan until November - which would be 6 months between scans - my idea of heaven. Now all I have to do is to convince her to move to appointments every two months - lol. But I am feeling good now - I hope everybody has a wonderful day 😀

@dah925 I had radiation to a 1.3cm lesion on my pelvis in Jan. of this year. Do you know anything about the protocol they are proposing or what their goal is? Sometimes radiation is done for pain relief. Mine was 3 sessions of SBRT done on a single met that popped up after almost 2 years on Kisqali. The hope was that this oligoprogression could be treated and nothing more would show up so I could continue on Kisqali. I've had 2 clear PET scans since the radiation and it appears to have worked, giving me more time on this treatment.

The radiation itself was a piece of cake. One mapping session, 3 short sessions of radiation. I was fortunate that the lesion was on the crest of my pelvis so there was no collateral damage. I had no skin issues and no fatigue, just lots of stress worrying about my progression and if the radiation would work!

I have been on Ribociclib since March 2021 and have been stable.

My white blood count has gone down but always only just under normal but suddenly in the past few days I have been freezing and very tired and today it was so bad I thought I might have to pull the car over as I thought I was going to fall asleep.

I have spent much time in bed over the past three days and still feel tired.

I am going to contact the oncology team tomorrow as I would say I am neutropenic.

 I am wondering has anyone else white blood counts suddenly got worse after years of being on Ribociclib.

@doodler Thank you for sharing it is very helpful to know what to expect. Do they know what caused your neutrophils to drop? I hope they go up so you can increase your Kisqali dosage. Best of luck at your appointment.

I'm officially off kisqali now. The 200 mg/day has stopped working. A recent CT scan showed bone mets as stable, but liver mets grown and multiplying. ALP and ALT jumped up sharply on this morning's bloodwork.

MO said to stay off the kisqali (it was my week "off"). He'll go over a new treatment plan with me Wednesday.

Just around 7 months on the kisqali, in total. Well, we tried it.

Onto the next medication combo…

Wellllll…..gotta go off Verzenio too. My liver enzymes are on the rise again. Only was able to get through two weeks. Not sure what next step is, but sure wish I could tolerate the CDK's.

I just started kisqali and faslodex last month. I have stomach issues, diarrhea off and on fatigue and I feel crummy too. I’m on my week off kisqali right now and I’m not feeling much better. I did go through a lumpectomy with chemotherapy and radiation 2 years ago.
this new treatment is really taking a lot out of me. I’m trying to stay positive.

maldivamd, Just to say I found the initial 600mg kisqali dose hard to tolerate - neutrofils very low - but after a break, onc. reduced dosage to 400mg which neutrofils seem to be tolerating. Cancer markers are finally dropping. Keep the heart up, hopefully you will begin to feel and seen an improvement soon or onc might decide to reduce your dosage which may help you tolerate it better. I still am much more fatigued than before I started on Kisqali but I'm hopeful.

I'm on a combination of Kisqali, Faslodex and Femara (and Zometa periodically). Is anyone else on this combination? My problem is that I've been losing weight since I started Kisqali - about 22 lbs in 5 months. My tummy is constantly bubbling and burbling and I'm full of wind. I haven't changed my diet or walks, in fact I'm walking far more slowly these days. I don't know if this is coincidentlly some new cancer symptom or an interaction between my meds. My onc has been ignoring the weight loss, concentrating on the dropping markers. Anyone any ideas, suggestions or advice please?

I am on Kisqali 600 mg and Letrozole for 11 months . I take meds in the morning with a half a plain bagel and eat small meals every couple of hours. This has worked for me. Hope it helps.