Ribociclib/Kisqali with Letrozole - Any one on this combo?
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Good morning everyone,
Seems like Kisqali+Zoladex+Faslodex+Xgeva are working for me. My PET scan showed 'almost complete remission' after 3 cycles of hormonal treatment and 2 cycles of Kisqali (which was delayed because I had a back surgery).
Anyone here is experiencing pain in their nails, teeth and gums? On my second dose of Kisqali I felt a strange weakness in them (the strongest was on the first 1 of the dose and it decreased by time) and now when I'm eating it feels food are hurting my gums.
I know that teeth problems are associated with Xgeva but mine started with Kisqali. Any idea what is this and if you have experience making it better?
Thank you <3
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What excellent news for you @radiation_cinderella. Good news is a wonderful way to begin the day. I have had no teeth issues on kisqali/femara other than previously existing issues.
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I had a complete response with kisqali and letrozole - diagnosed De novo- with Mets to bone and breast tumor 5.5cm. Today tumor is gone -100% gone!
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@alexisdesai, what excellent news - was your response a quick response or over a period of months/years?
Since beginning this combo 6 months ago - just started cycle 7, my tumour markers have gone down to 12. Scans showed some regression - but I have only sclerotic bone mets so it is harder to assess progress. Breast tumours seem to have gotten smaller - but onc is focussing on bone mets.
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@alexisdesai What a wonderful share! We're so happy for you!
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@alexisdesai this is amazing news!!! Thanks for sharing, very happy for you and wishing the same for everyone here <3
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Joining this thread. I have been on Kisqali for two weeks and my neutrophils today are 1.07. Even when I was on AC-T chemo they never dropped that low. REALLY hoping this doesn't mean a treatment delay. Heartened by @radiation_cinderella 's and @alexisdesai 's news!
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@tougholdcrow my last lab work before my 3rd cycle of kisqali showed neutrophils 1.78 . The doctor said it's fine and I think they will accept a certain level of drop because it's expected. I wish you all the best with Kisqali and I hope it give you NED <3
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@tougholdcrow my wife's neutrophil count always hovers right around the cutoff range (1.00). Last time she went in for monthly blood test they were something like .850 the day before she was supposed to get new monthly meds. Doc called and asked her to re-test the next day (in the morning before her appointment in the afternoon) and they'd shot back up to something like 1.35 (which was the highest they'd been in a long time). Her doc doesn't get worried when they are low as they don't cause any apparenty issues, but the literature says if they are below that 1.00 amount then they have to hold or reduce dosage for an extra week. He has told her to exercise briefly right before the blood draw (by walking up and down the stairs a couple times) as it artificially raises the neutrophil count for a brief period. It doesn't solve anything long term, but it means it's more likely to be over the 1.00 cutoff amount so he can continue her on the therapy. This is one of, if not the most common, side effects of the CDK4/6 inhibitors. They adversely impact normal cell processes in addition to the cancer cell processes. So things like neutrophils have a harder time reproducing when you're on them. It also explains why other cells in your body which have a high metabolizing rate (like mucosal cells in your mouth and GI tract) will have a harder time and result in mouth sores occassionally. The cells just can't reproduce like normal while you're taking the meds that actively inhibit that normal activity.
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@bighubs Thanks so much for that reassurance. You are a font of knowledge. Nice to meet you
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Liking your good results.Yes nails have been miserable for the nearly 5 years I’ve taken K. I try to keep them short not to bump into stuff. I’m jealous of people with beautiful nails. Oh well.
Also have teeth aching when brushing with certain toothpastes. I vary pastes. Just brush with water or (I know it’s disgusting) don’t brush at all.
I’m sure it’s not the xgeva because I tend to skip that a lot . Mouth sores though : no.
Still no update on my possible new activity. The breast lump was a dud on ultrasound , so false alarm and I’m pretty sure a note in my file I’m neurotic.
The petscan to check previous petscan is is scheduled for May. I got into quite a discussion with my oncologist. I guess it had to happen at some point. I know we are not bed ridden cancer patients , doesn’t mean we should get ignored until we are.
Had a little breakdown earlier . Tomorrow day 1 again. I want a break from those pills , I was enjoying this week off . Pffffff
nanight 🫶0 -
I have had tinnitus for years, ever since I saw a rock concert in a closed space that, at one point, had a bunch of drummers on the stage. Oh, the follies of youth. I have a very slight hearing loss in my left ear and a hissing sound in both ears. When I was going through AC-T chemo not long ago, I developed a new sound in my left ear, an irregular thumping, as if one of the drummers had taken up residence there. It comes and goes, and suddenly has gotten worse, and I'm wondering if it is a side effect of Kisqali (I'm at the end of my first cycle).
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tougholdcrow, Thumping tinnitus that sounds like it keeps time with your heartbeat is called pulsatile tinnitus and is a SE of many different meds. My doctor could hear it by listening with a stethoscope on my neck and was able to get rid of it by adjusting my blood pressure meds dosage.
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Thanks @maggie15 ! I only take the cancer drugs, and don't want them reduced, so I guess the percussion instruments in my head are a small price to pay. I will have my onco listen for it.
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@tougholdcrow I have the hissing tinnitus and it started years ago after I was on antibiotics for a feral cat bite.
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Good morning @forza
Thank you for sharing how it was/is for you with Kisqali and for suggesting how to deal with nails and teeth issues <3
I'm also so happy it turned out to be a false alarm, and I hope your next PET scan will turn out clear…sorry that you had to start again while you needed a break. Sending much love all the way from Egypt <3
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Started Kisqali in January along with Letrozole. In March, had to stop Kisqali due to Drug Induced Liver Injury. I feel horrible, have swollen belly, and look terribly yellow. It has been seven weeks off, and have been to hematologist and told treatment is stop drug and heal. Anyone else have this response?
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@cgs19 I'm sorry that you are having to deal with this liver issue and I hope you are on the mend soon and can resume treatment. I wish I had some advice, but I know the letrozole is a good drug even by itself.
@radiation_cinderella I've gotten lazy about this and my nails are a bit brittle, but while I was on chemo I would put a good lotion on my hands and cover them with cotton gloves and sleep that way. That seemed to work ok though I still have two blackened toe nails.
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cgs19,
I’m so sorry that you’re experiencing liver issues with Kisqali and feel so awful. I can certainly relate. I had a drug induced liver injury after 3 cycles of 600 mg Kisqali, My initial line of treatment for MBC was Letrozole, Kisqali, and Xgeva. After 3 cycles of 600 mg of Kisqali, my liver enzymes started to rise and then skyrocketed even though we stopped the Kisqali. I was hospitalized and they ran every test imaginable with the conclusion being a drug induced liver injury. At the time, they treated me with high dose steroids which led to other serious complications (I developed avascular necrosis from the prednisone). It took about 10 weeks for my liver enzymes to return to a normal range. I felt horrible but attributed it to the steroid taper. This was 2 years ago so hopefully there is a better understanding of how to handle liver injuries from this drug now. I really wish that I had never taken the steroids if the numbers would have come down on their own. I was also told to eat a healthy diet of whole foods and to stay away from alcohol, fried foods, and anything that would be hard on the liver. I felt so bad that I really had to force myself to eat.
I really hope your numbers are trending down and that you start to feel better soon. I was able to switch to Ibrance after my liver enzymes returned to a normal range and it seems to be a much easier medication. Hang in there – I’m wishing you all the best!
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I have just finished my 7th cycle of ribociclib/letrozole @cgs19 and @mc22. I take the 600mg dose of ribociclib, although lots of others have written to say they have had great success on the lower dosages. You make me feel incredibly lucky as, so far, I have not had any real issues with the drugs. The only thing I have had to watch is neutrophils - but I think just about everybody has that issue at some point. Sending good thoughts to you both.
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Sending lots of hugs and positive energy to all 🤗.
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So glad it is successful for you. It was my one's first choice, so I think it is good. Continued success for you!
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I’m sorry you’re experiencing liver issues on the meds. It happened to me after 3 cycles of Kisquali. My liver enzymes were not terribly high it seems but about 5 times the base line. That made my ONC stop treatment and she offered either to start at a lower dose or take Ibrance, as this drug is affecting the liver less. I went ahead with Ibrance and agreed we’d revisit the option to take Kisquali later down the line. So far so good, and after having a break of 5 weeks and taking only Leteozole my scans were stable (before that after the first 3 months of treatment I had a decrease in tumour of 22% with Kisquali). I hope I’m making some sense, my brain is not working as it used to when I was 41 and not on cancer meds. Laughing so I won’t cry. I hope you feel better soon.
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Here's something y'all might want to know: I was told by my oncologist to make sure to get the latest Covid vaccine because Paxlovid can't be taken with Kisqali. Paxlovid is the drug you take to relieve severe Covid.
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I will never take another Covid vaccine.
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@tougholdcrow that is very interesting information, and we appreciate you sharing it!
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Thanks to everyone for the posts. I am stage 4 Er+ HER2- with one bone Met. I have been taking Kisqali for 6 months. First PET at 3 months showed tumor shrinkage and no new Mets. Second PET Scan at 6 months showed no change, no new Mets. Has anyone else experienced this? Wondering if it could start shrinking again.
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@dah925 I'm only on my second cycle of Kisqali and can't really answer your question, but it seems your news is good, and I do hope you see even more success with this treatment.
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Thank you. Wishing good results for all.
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