Ribociclib/Kisqali with Letrozole - Any one on this combo?
I am starting this new forum for all those who are on this newly approved drug combo. I started on Kisqali/Letrozole combo 6 weeks ago and so far it has been tolerable. Letrozole gives me joint pain and low back pain. My oncologist has asked me to take this on alternate days. Would love to hear from others about their experience with this therapy.
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Hi S3K5 - I just started Kisqali (aka ribociclib) but not with letrozole. Ibrance (aka palbociclib) and letrozole failed me. I'm in a clinical trial with a new SERD that has no name yet. It's called LSZ102 and I take it with Kisqali. I started a topic for the clinical trial I'm on. I'll be following this thread closely. Thanks for starting it up. I'm sure a lot of others on the boards will be watching...
Good luck!
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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?
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Hi Carpe_diem, you have gone through so much! Hopefully, you'll start seeing regression of your liver mets. The clinical trial data shows a longer PFS than Ibrance.
I have tried Xeloda, Affinitor + Aromasin, Ibrance + Faslodex; Ibrance was tolerable when compared to the other two but my blood count was messed up. Scans showed some regression in bone mets. So my onc switched me to Kisqali. So far so good!
Keep us posted!
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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.
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Hi Carpe_Diem, How are you doing so far on Kisqali + Letrozole? I am having low back pain and pain in all the joints due to letrozole, The dr is going to put me on Ibrance again! My blood counts dropped a lot with Kisqali.
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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.
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Hello,
I'm jelly from the UK, I was originally diagnosed in 2012 at the v young age of 28. It's with great sadness I was diagnosed stage 4 bone and lymph mets in May 2017. Since then I've had 4 weeks of radiotherapy, a bone strengthening IV which I'll be having six-weekly and 2 weeks ago I had an oophorectomy (ovaries and Fallopian tubes removed). I started letrozole (femara) a week ago and tomorrow I will probably be adding ribociclib (kisqali) to it.
Am glad to find this thread as ribociclib is very new in the UK (only available on trials) so I have no-one at all to talk to about it. Thank you carpe_diem for posting your experiences so far, it's helped me feel a lot less scared.
JT
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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.
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Hi Jellytot83 - It appears that there are far fewer people on Kisqali (ribociclib) than Ibrance (palbociblib), at least as far as the postings on this site. Ibrance was FDA approved earlier than Kisqali and as a result received the lion's share of the market, so to speak. Ibrance/Letrozole failed me after about a year so I am now on a clinical trial with Kisqali and a new oral SERD with no name yet, just known as LSZ102. So I too have been in search of others to share their experiences with Kisqali. The hard part is that the CDK inhibitors like Ibrance and Kisqali need a companion anti-hormonal to work and that companion drug is a variable (letrozole, faslodex, arimidex etc) making it hard to compare apples to apples. As far as my experience goes, so far I'm feeling very good on my protocol. Most, if not all of the side effects I experienced on Ibrance/Letrozole are now gone. If this protocol keeps me progression free I will be very pleased - not only because it is working but because it is allowing me a very good quality of life. I hope the others on the trial with me are feeling as good as I am and are not seeing progression either. Being in trial is a little lonely. You don't have interaction with the others in the trial and you don' t know how they are doing. I'm in my third month of the trial and will have another set of scans on Sept. 5. I'll let you guys know how it goes.
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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
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Hello everyone! I am being taken off Ibrance/faslodex after about 16 months and my onc wants to try this combo. I'm sad to be going off because my SEs are pretty minimal but there seems to be more activity with all of my Mets, although no new ones, thankfully. I said I would let them know wed if I will take it and in the meantime trying to find out all I can. So far I'm concerned about the heart issues with it. I have never addressed it yet, but I've Ben worried about my heart for quite awhile because I get so winded with what seems to me not much exertion. Anyway, I will follow this thread and contribute whatever I can if I end up taking this. Hope you are all having a wonderful summer! Heidi
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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?
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Hi girls! I am also on ribociclib+Femara.
I was diagnosed Breast Caner Er+/Pr+/HER-. 4/9 positive, Grade 3 in March 2015. 4 FEC + 4 taxanes, radiotherapy. Then Zoladex + Nolvadex.
In June 2017 - 8 liver mets.
Now I was included in a phase 3b study ribociclib+Femara. I finished the first 3 weeks + 1 week rest. But today my Neu are 1,1 (too low, the cut off for discontinuation is 1,0). Now according to the protocol I should continue the study but I am so afraid for my Leu and Neu. Generally my Neu did not restore after the chemo- and radiotherapy in 2015. And I had a terrible life-threatening febrile neutropenia after the first cycle of chemo in 2015.
What about your experience? During which week the count of the leucocytes/neutrophiles is lowest?
Hugs, girls!
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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.
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Same as Carpe Diem - I only get blood work once a month now. I have found that Kisqali (ribociclib) has not been as hard on my neutrophils or WBC as Ibrance (palbociclib) was. My numbers have stayed within the standard range for neutrophils and WBC since being on Kisqali so I am very happy about that.
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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!
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I'm brand new to all of this -- I've only been dealing with this for 2 months .. and only knew I was stage 4 for a few weeks. I've been on Tamoxifin for 1 month. Just started Kisqali/Femara yesterday.
Main side effect is that I seem to just be overheating a lot. Friends last night brought it to my attention. Boyfriend noticed it too. I was so happy to really start some sort of treatment -- but also very nervous about side effects -- and since this drug is so new, there's not a lot of personal stories out there (which means I'm super grateful for this thread). Am I right to assume side effects build over time?
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Welcome, TinyTurtle-
We're sorry that you've joined the club, but we hope this community acts as a source of support and encouragement for you as you continue with treatment.
The Mods
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Tinyturtle, I have not received the kisqali yet, but I have been on ibrance which is very similar. On that one, some side effects started right away, then went away. Some side effects didn't start until months being on it. with most meds I think your body gets used to it and side effects lessen over time. It's shocking and devastating but it does get a lot easier. Getting hot flashes is very common, and with ibrance/faslodex I had severe night sweats. I still feel good overall though, and still work FT. Stay here and ask questions. You will find all the info you need here. There are so many of us, even if you have a very rare side effect it's likely someone else here has had it too.
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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.
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Update: itchy skin and instead of being hot last night I was cold bundled up while everyone else in my house is wearing shorts .. ha. I'm also mentally slow- I freeze up on simple things I usually know how to do. I guess it's impossible to tell what drug is causing what.
Can't wait to get checked in a month to see if it is making a difference. I'll let you know
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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!
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Well my ins is not approving Kisqali because it's only meant to be given first and not after Ibrance. It looks like my choices will be afinitor or xeloda. I already refused A the first time he wanted me to take it and I probably will again unless he is willing to start me at 5mg. Good luck to all with this new drug!
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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
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I've just started my second month on Kisqali/Femara -- so far main side effects are hot flashes along with splotchiness and some tiny acne but biggest change to my life has been the fatigue and dizzyness. I've also lost 10 pounds. The lack of interest in food may just be depression, it is hard to tell. I think the side effects are totally manageable.
I'm frustrated because I was given sample boxes of these meds but now insurance won't let me continue because I'm not post menopausal. I did get my first injection of Zoladex and my fingers are crossed that it will stop my period. If the periods stop, then doc says insurance will let me have it. I was thinking of just lying if I do get it this month. Does anyone know why it is only FDA approved for post-menopause?
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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?
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Thank you CanaLoon -- That never occurred to me .. thanks to you I found this:
The CompLEEment study is evaluating the safety and efficacy of Kisqali plus letrozole in men and pre- or postmenopausal women with HR+/HER2- advanced breast cancer with no prior hormonal therapy for advanced disease. This open-label, multicenter, Phase IIIb CompLEEment-1 trial is currently enrolling participants.
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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.
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Good Morning,
My recent diagnosis is MBC in the pleura of my right lung. I have been getting "drained" twice a week and the fluid is receding and I hope to stop this soon.
I am currently on the ribociclib/letrozole combo. I only stated October 4 and will be starting my second cycle November 1. My side ffects are fatigue, diarrhea and loss of appetite but manageable.
Cheer
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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
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