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

I just finished my first round on Kisqali and letrozole, although it's kind of off-label since I'm way past first line. I started on anastrozole for de novo stage IV with lung mets and had 45 months with practically no side effects before I had progression to my shoulder blade. On to Faslodex - no side effects, but progression to liver. Then Xeloda - terrible Hand Foot Syndrome, but put up with it for a year since I was stable, and kept reducing dosage until liver mets started growing. Brief trial on 5-FU (the end result of xeloda) - real nuisance with continuous infusion pump, and my feet weren't much better. On to paclitaxel - couldn't handle allergic reaction - and moved to abraxane, same drug with a different carrier. That worked for about a year without a lot of problems that were clearly related to the drug, besides hair loss, but meanwhile I developed Afib and leg edema, adding a cardiologist to my crew.

When my liver mets grew and there was a new spot on my T4 vertebra my one suggested Ibrance plus letrozole. However, I'd been following ribociclib since it's a Novartis drug and available to me for free (ifapproved) since my husband is a Novartis retiree. So she did a little research, ran an EKG to make sure long-QT was not an issue, and sent in the prescription off-label. It came through without any problems and I started it with letrozole on April 25. I don't seem to have any of the listed side effects, except that my WBC was down, but still acceptable at 2.8. I don't seem to be getting my hair back, but I can live with that. I even think my Afib is a bit better!

Does anyone know how to pronounce Kisqali?

Think of it this way: I'm still around and enjoying life years after my expiration date. Last week I had two cancer research grad students over for dinner - they help run a town-gown program for cancer researchers and survivors - and this week I'm hosting a choir party for 30-40. Cancer sucks but life is good!

There's even a little fuzz on my head.

S3K5,

So far I seem to be doing well in terms of side effects, but who knows how it's working? I won't have scans for another month, and even then I've heard it may not kick in for six months. I never had problems with bone pain while I was on anastrozole for 45 months and letrozole hasn't been a problem either. I did get worried about blood counts after my first month on kisqali when my neutrophils measured 1.0, just the bare minimum for continuing, so I was expecting a drop after another two weeks on the drug and wondered if I'd have to take a break. Surprise! My neutrophils went up to 1.6 and it was clear sailing to finish the last week. I'm on my week off - just got back from NYC where I walked on the Highline, attended a play and a concert, visited a museum, and ate out four times, including at the Russian Tea Room. I'd have done more, but my feet weren't up to it.

I go in on Monday for bloodwork and another EKG. I hope my good luck continues, and I hope Ibrance works better for you. I hear the results are pretty much the same.

Hi jellytot!

I'm so sorry to hear about your progression and hope Kisqali/letrozole works for you.

I had a small additional bone met show up on my CT and bone scans last week, but my oncologist doesn't think it's enough to change treatments over, especially since I have no bone pain. She did suggest repeating scans in 8 rather than 12 weeks, but that would be just before our planned trip to Portugal and Spain, and I'm not planning to cancel for anything less than hospitalization. (I do have trip insurance.)

I'm still feeling great and hope to have more positive results in October.

Hi all, I haven't updated my med history but suffice to say I have exhausted all antihormonals, the last being Ibrance/Faalodex. I am now on Kisquali/Faslodex. My MO said Kisquali is a newer slightly different version of Ibrance so he is hopeful is will work. I did very well with no SE on Ibrance but Kisquali is hitting me much harder. I have constant stomach issues, extreme fatigue and just feel crummy. I hope it's hitting the cancer hard, this is just my second month. If so then it will be worth it, I just hate losing my summer to stupid cancer!!! Good luck to all of you

I'm off Kisqali for an extra week, and not because of low neutrophils, or maybe that was a contributing factor. I called my oncologist because of a moderate fever (101.5) and before I was done had run it up to 104.7 and a pneumonia diagnosis. That didn't show up on the X-ray at the ER, but fortunately the PA realized that with an implant and pleural thickening related to mets, I needed a CT scan to make sure. Lo and behold there it was! Fortunately, the ER doc started me on an antibiotic on the basis that a temp that high in an adult is likely to be bacterial. I had concerns about Levaquin, because it is also implicated in long QT, but apparently so are most antibiotics. This all started on my week off K, so current plan is to finish Levaquin and then restart Kisqali.

My temp's back to normal but I still feel dragged through the wringer. Is it good news that my WBC and neutrophils are way up?

My bloodwork is only done once a month, usually, so it's hard to track, but the first two months when it was done every two weeks, neutrophils were lowest the 4th week (1.0, but we continued anyway), and then week 2 of month 2. That was 1.1, so I was sure it would be too low at the end of the month, but it popped back up to 1.6 and it was clear sailing.My last reading was 3.3, but that's with pneumonia. No fun, but maybe all those extra neutrophils and WBC will zap the cancer cells. I can hope.

Thank you, Carpe Diem and AnimalCrackers! You calm me down a little bit...the problem is that my baseline values of WBC and Netro were too low...this is the reason I am following my blood to closely (having in mind I had a febrile neutropenia during the chemotherapy 2 years ago).

Hugs, girls!

TinyTurtle--I'm right behind you in time frame and the same as far as the overheating, though mine is from Arimidex. I started on Arimidex in July and am now waiting to add ribociclib, which I'm told will be delivered via the mail from a specialty pharmacy. So much to learn since I was completely uninformed re cancer. I'll follow your comments w/interest and hope it goes well.

Starbrightlyshines, I just started faslodex 4 months ago and my most recent scans showed progressive disease despite the faslodex. So my MO is looking into starting Kisquali/faslodex for me, too. She's not sure if my insurance will cover it since I was already on Ibrance (was on Letrozole/Ibrance for 2 years and then failed that). If they won't cover it then we'll probably go to aromasin. Thank you for sharing your experience on this combo!

Good Morning All!

I have recently received news of a diagnosis of MBC in my lungs. 9 years after my battle with BreastCancer I thought I had it beat. Not so.

I will be starting therapy next week, the Kisqali/Letrozole combo. My main concern is side effects. I have read all the literature however I really like to hear it from those actually taking it.

Can you let me know what is most common?

Cheers

Hi Everyone - so glad to have found this thread. I have just finished my second round of Letrozole/Ribocib as part of a Clinical IIIb Trial. The first round left me nauseous, tired, etc. (felt like classic chemo), then we had to stop for several weeks while they drained the pleural effusions that had developed before treatment. They did that four times and then put me back on the combo (there was a time limit for doing that) . Happily, on the second round the effusions started to dry up. Im still coughing and short of breath but it's much better. It's such a relief though to have a "week off" from the combo. The chemo fog dissipates somewhat, I have more energy, I can get things done and can look forward to doing other things I like to do in my life. Im hoping that at some point the lung effusions will completely disappear and I'll just have the side effects of the medication to deal with.

Re: FDA approval - I'm in Canada but know that the FDA doesn't set the "standards" for entry into a trial, the drug companies do. This trial is deliberately aimed at post menopausal women - there are beginning to be trials for pre-menopausal women but I don't know what other companies have initiated them. Maybe someone else on this thread has come across that information?

My name of MJ DeCoteau and I am the executive director of Rethink Breast Cancer.

We are looking for woman with HR-positive, HER2-negative advanced breast cancer who have been treated with ribociclib (Kisqali) to talk about their treatment experience.

You can find more information in the Stage IV and Metastatic Breast Cancer forum or please send me a private message if you would be willing to participate.

Hi Parisalways - getting "drained" twice a week is not a lot of fun. My "mets" is in the left lung. Otherwise we are on the same regime. I started in July and am in my 4th Cycle. I didn't think the fluid would ever go away but this week, it is well and truly gone. I cough occasionally, and get breathless if I walk too fast. The fatigue catches up with me at the end of the day. I'm so much better. I hired a cleaning lady and she's been worth every visit because I can focus on other things. It's so nice to meet you and find someone else with lung issues/ treatments. Have a great day!

Suzan