Ribociclib/Kisqali with Letrozole - Any one on this combo?
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@airlinegal Thanks for the update, and my best wishes for a successful treatment.
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@airlinegal, it is always interesting to see how different oncs approach treatment. I hope the new approach works for you.
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Thanks for your update @airlinegal !
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I'm getting freaked. 3months ago radiologist reported seeing 'something' on my CT in the general area of my abdomen. I had an endoscopy which was normal. However after CT last week radiologist again reported seeing 'something' which might be dilated bile ducts. I'm having an MRI in a couple of weeks to investigate that. It all seems to coincide with when I started taking kisqali. I've had gallstones for years which could be a factor. Then there's my recent weight loss and gassy issues. I know something's not right and I'm terrified it could be cancer of the bile ducts.
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hey forza, and everyone else, thanks for the kind comments.
I'm still doing really well on my reduced dose of kisquali, still NED.
I had a terrible time with a UTI, ending up in hospital and 5 different lots of antibiotics to try and get rid of it. I got referred to a urologist who put me on to a product called Hiprex which has given me my life back.
my iron count has been really low and have had a couple of iron infusions. they really aren't sure what's causing it..have had a endo and colonoscopy and everything seems normal there. beyond that, life is pretty normal…I'm still eating mainly keto/very low carb, and feel good. ill try to pop in more often just to catch up with you all and answer any questions you may have.
sending you all gentle hugs <3
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@aoibheann The unexplained symptoms are scary, but I hope you get answers very soon and that everything is ok.
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@aoibheann, I had something similar, but it was definitely my gallstone(s) causing the problem. Although the status of said gallstone(s) changes every scan - first scan said I had 1 very large stone, next one mentioned several stones and obvious gall bladder issues, last scan we are back to only one stone and gall bladder looks fine. I also found that ALP blood levels can be affected by gall bladder issues. I also note that until I was told about my gall bladder issues, I had no pain or problems with it - as soon as I knew about it, instant gall bladder attack. I have come to the conclusion I am a hopeless hypochondriac - lol
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@tougholdcrow, thank you
@malleemiss251 , did your docs do anything to resolve your gallstones (medication?) or are they planning to operate? I know my onc is very reluctant to sanction any surgery on me. I thought gallstones could be shattered by ultrasonic waves or something. My own doc (GP) has put me on a sort of FODMAP diet (no wheat or dairy etc) but it isn't making any difference. Fingers crossed for both of us that things will improve.
Hugs
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@aoibheann, they have done nothing for the gallstone(s). I have no faith in the scan readers. I just keep on trundling along. Oncologist did let slip that she is watching my blood work very carefully - it seems my body is a bit different. Good luck with your gallstones - they can create havoc with you body to mention nothing of the pain of an attack - seriously not fun.
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@malleemiss251, well it's good that she is watching you carefully. I hope your gallstones are not causing you pain any more. Did your cancer markers go down and stay down? As I said mine are rising again so whether onc increases dosage to 600mg or changes drug waits to be seen. I'm having an MRI in a couple of weeks though I read that a MRCP scan is better for imaging probs with bile ducts, gallstones etc.
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@aoibheann, my CA15-3 was 10 last time it was taken and CA125 was 5. My liver and kidney numbers are good and my ALP is well within normal range. My neutrophils are just below normal - 1.9 last time taken. CRP is back to 0.8 and ESR is down to 30. Because I have a separate issue with appetite my urea levels are below normal - indicating I am not getting enough protein - they are watching that closely. So am I, because I am doing resistance training and I need more protein to build muscles. I hope you have a very good day.
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@malleemiss251, that's great news about your markers! I'm sorry that you are still having issues about your appetite and I hope they figure out what the cause is very soon. Have a good day too
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It's so nice to hear about your trip @forza :)
I'm currently in a trip mixed between work and holiday. I traveled 2 days after my faslodex+zoladex shots and will come back on the day of my next one. I'll go from the airport to the clinic. I have Kisqali with me and I found a hospital where I can run my tests…my husband doesn't think it's a good idea to do it abroad but I booked and I will see how I feel on the day. I still in my first MBC year so I would be so scared to stop any medication that I wouldn't be able to enjoy my time.
It has been a few months since I reduced my K. does from 600 to 400 because of QT intervals going crazy, however, my last scan was in October and I'm in remission now, 9 months after starting treatment. I'm so relieved yet in hyper-vigilance state of mind and I'm struggling to know how to 'live' 'normally', as the doctor said :)
Much love to everyone here <3
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@radiation_cinderella Welcome to remission and may it remain so for a very long time. Enjoy. I slowly began to feel that I could start living life again, although life is not quite the same. It's the "new normal," and I wish you much love and joy in this phase.
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@radiation_cinderella Congratulations on your remission! Wishing you a long and joyful remission 😊
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I was taking Kisqali 600 mg. For 4 months. It was shrinking my tumors. Then a PET scan was done in December and there was fluid in my left lung same side where my breast cancer started. I January I started having trouble with shortness of breath when going up my stairs from 1st to 2nd floor. My oncologist recommended testing for heart lungs. Etc. I had 14.4 milliliters of fluid drained and tested. Now they believe the cancer may be resistant to Kisqali. So, I am waiting for more detailed testing to know what course of treatment may work. I am going weekly to have fluid drained from my lung. I just pray that a solution is found soon. I am a bit discouraged and getting tired.
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Thank you @tougholdcrow & @dah925 for your beautiful wishes <3
@malldivamd I'm so sorry to hear about the fluid in your left lung, I hope and pray that your medical team is able to find a good way out of this problem, and I hope you have support during your weekly visits. Sending you much love <3
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thank you for the love and support. My sister goes with me to my appointments. I don’t know what I would do without her.
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Hi everyone - I just started kisqali (600mg) + letrozole/zoladex last week. No side effects yet but I'm thinking they might creep up as I continue.
It's been great to read that the kisqali has worked well for a lot of people. In my situation, we need to shrink the mass (breast cancer mediastinal mass) enough that it can be fully resected. It's in a sensitive area and positioned in the way that doing surgery right now would be complicated. I'm staying hopeful, and again reading that it's worked well is helping.
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@everblume I'm doing really well on Kisqali, a year out. I am not sure whether it's the letrozole or the Kisqali, but I do have some fatigue. I'd say that's the only real side effect, and I go about all my usual activities, including lots of walks. I feel strong, given all that's happened.
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@tougholdcrow Glad you're doing well on it. Don't know how long I'll be on it so that's great to hear! Thanks for your response :)
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Hi @everblume et al,
I’ve been taking Kisqali/Letrozole for 3 cycles. For me the side effects are manageable but they are there in the background. Fatigue is a big one for me but I have decided not to feel guilty and rest/nap when I feel exhausted. I’m envisioning my nap time as a time for my body to focus on healing. I’ll have my first PET scan mid-March since being on Kisqali/Letrozole combo. I feel like I’m getting all amped up about seeing good results even though I know not guaranteed. Whatever the scan says I’ll keep going but do hope things are stable or improved.
Thanks for creating this space!
Best wishes & healing vibes🌸
History: First diagnosed in 2014, with Stage II, invasive ductile carcinoma. Lumpectomy, chemo & radiation. 2024, recurrence with lung mets. Treatment: 600mg Kisqali, 2.5 Letrozole & monthly Lupron injection.2 -
@threecathouse Thanks. I don't have much fatigue yet but it's only been a week. I'm glad you're listening to your body and doing what you need to do. I'll do the same.
I'm wishing good results for you!
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@threecathouse I am sending you good vibes for good scans.
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Hi All, I am on Kisqali/Letrozole combo for 16 months. My body has adjusted to the medication and I only have occasional fatigue. My tumors continue to shrink and I have no new progression. Wishing everyone success on this combination.
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It is so good to hear of the great results on Kisqali/Letrozole! I was diagnosed stage IV in October and started the combo the end of October. My PET scan in January did not light up at all and the nodule in my lung shrunk!! I definitely get tired earlier at night. I fall asleep on the couch around 8:30 but I am still working full time. And my stamina is lower. I recently developed a rash that gets worse in the sun and when I am hot. The Dr. gave me steroid cream to use. My eyes have also been really dry and blurry. I am working with an ophthalmologist to find a treatment that works. But as long as the meds are working on the cancer I will deal with the side effects! I hope this combo continues to work for all of us for a long time!!
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@sparklegirl2018 @dah925 so great to hear that it's working well for you! Thanks for sharing, it's helping me to stay hopeful. I'm only on week 2 so it's quite early and I have days where I get anxious about how well it's working.
Wishing everyone continued success with this combo!!
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question about Xgeva….how does it help and how often should it be taken…thanks for any info
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Hi folks, My body continues to struggle and I'm curious if others have similar issues. My neutrophils have dropped again to 0.6 and my white cell count is 1.5 so my onc has cancelled this month's kisqali. He's waiting for my white cell count to rise again and then he's reducing my dosage to 2 weeks on 400mg and one week off. I hope it'll be enough to be effective.
My platelets have also dropped to 76, vit B12 is 270 and folate is 2.9 and I still have digestive problems. Onc. insists all these issues are unrelated to kisqali yet they coincided with taking it. He also has no idea why this is happening. Has anyone else had anything similar?
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@aoibheann
I had low white blood cell count and low neutrophils after my first month on Kisqali. My oncologist paused my Kisqali and restarted at 400 mg for a month before resuming me to the full 600 mg dosage. My PET Scan still showed tumor shrinkage even on the 400 mg dose. While I have had some ups and downs, my body adjusted to the medication and I just completed my 16th month on Kisqali on the full 600 mg dosage with good results. That being said, there has been great success for patients on the 400 mg dose . I hope your body adjusts to the meds and you fall into a good rhythm. 🤗
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