Ribociclib/Kisqali with Letrozole - Any one on this combo?
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I struggled on Ibrance for a year, and even dose reduction and multiple pauses did not make it sustainable due to cytopenia. When I switched to Kisqali, I feared the same thing would happen. But my oncologist got creative and has me taking 200 mg for 5 days on, then 2 days off. In other words, I don't get the typical week (7 days) off, but I do get a total of 8 days off (spread out) in a dosing cycle. That's been very manageable for over 2 years now.
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@aoibheann I just finished week 2 and have slightly low white blood count and neutrophils. I'm assuming that I was still above the threshold as my oncologist didn't lower my dosage. I was told this is a pretty common side effect.
Like @dah925, it seems that many people still have good results on 400mg. Is this your first month? Hopefully your body just needs some time to adjust. 🌸
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@dah925, I'm so glad to hear that you've been on Kisqali for 16 months with good results. Long may it last! 🤗
@lgp1111, Delighted to hear that this has worked for you for 2 years! It's very encouraging. 🤗
@everblume, Good luck with Kisqali! 🤗
It really does seem a brilliant drug. It's brought my markers down from 210 to 40. I started last April on 600mg which was reduced to 400mg and I've bumped along on 400mg with very low white cell count and neutrophils. This time onc wanted 14 days on 400mg and 14 off but I freaked as I don't know what the next drug will be. He says my bone marrow isn't able to cope so now the compromise is 18 days on 400mg and 10 days off.
Have any of you had any digestive issues with kisqali? Onc said there are no s/es mentioned related to weight loss and wind/gas problems and nausea. I've lost over 10kg and there are times when I can't stop letting off wind (prob. too much info!) and I feel more nauseous than normal.
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@aoibheann Yes, the Kisqali has made me gassier than usual, which makes my husband laugh. I also don't feel like eating as much. I have no idea how well the drug will work at the level your onc suggests, but maybe you'll want a second opinion? My neutrophils have been rebounding well in the last month, so I'm thinking of asking my onc if I can go up to 600 again, but I'm not sure if they do that once I've dropped so low over an extended period of time. I know that the 400 dose has proven to be as effective as 600 in terms of median progression free survival. So it seems that if you do respond, you can do well at 400, but I'm not sure of the schedule proposed for you.
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Has anyone had their MO mention taking calcium with the letrozole/zoladex? I read that the Letrozole can increase the risk of osteoporosis and affect bone density. My previous MO mentioned this several years ago with my original BC when I was on tamoxifen, but new one hasn't said anything at all.
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@everblume My MO recommended calcium. I think it may have something to do with Zometa taking calcium from your bones, but don't quote me on that. I'm sure you get calcium numbers on your blood tests. Too much calcium can indicate bone mets because of bone deterioration. I also take D3, which is all the rage in oncology world (not to mention that I live in a very wintery place with long dark days). Anyway, your oncologist can speak to your individual case.
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@tougholdcrow Thanks, I'll ask her. She never gives me much information and I feel like I always have to do my own research, which is frustrating! I've been taking Vitamin D for years (also live in a colder climate with long dark days lol). MO didn't mention the Vit D either. My bone scan was fine but she didn't do a bone density test, which I had last time even though I was pre-menopausal.
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@aoibheann It looks like my dosage may have to be reduced to 400 mg due to an allergic reaction. I have an itchy rash all over. Trying zyrtec and benadryl cream which does not seem to be working. Just started steroids to see if that helps. I don't want to reduce the dosage since the 600mg has worked so well. Glad to hear things are going well for you 400mg. I have heard other people who have gone to a lower dose and it is still working for them. It is all so stressful! Hope everyone has a great weekend!! The sun is shining here in Georgia and it is supposed to be a beautiful weekend!
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@sparklegirl2018 I had a weird rash at first across my chest and used cortisone cream. It disappeared and never came back, but I was alarmed at first. Even had a skin doc look at it. I was never sure whether it was the meds, or something with my port, or some other cause, but it did coincide with my first month on Kisqali/letrozole. I'm on 400mg because of low neutrophils and am doing just fine.
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Hi there, just reading through some posts and seeing that several of you are on the 400 mg dosage of Kisqali. I only made it through my first cycle at 600 mg and then my Onc reduced the dose as I had nausea and vomiting that was not controlled with anti nausea medication. I was devastated. I was so disappointed that I couldn’t handle the high dose. I’m on the 400 mg and tolerating it well. Just wondering if any of you were able to go back up with your dose eventually or will I just need to continue with the 400.
Hope everyone is feeling good and enjoying their weekend.
Hugs,
Lafish
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I was on 600 mg Kisqali for only one month and had to move to 400mg for a month until my neutrophils went back up. I went back to 600 mg and have been on 600mg for over a year with good success. From what I understand once the underlying condition is resolved you can go to full dose. I had some mild nausea in the beginning and found eating very small meals throughout the day helped. I would also have plain dry bread or bagels in the morning to help settle my stomach. I know your nausea is worse but hope this helps.
All that being said, I had a great PET after 400 mg and there has been great success for patients on the 400 mg dose.Sending good wishes your way.
🤗
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The steroids seem to be clearing it up and then will continue with cortisone cream and hope it stays away. So good to know so many are doing well on the 400mg. It might not be a bad thing to reduce it for now. Hope you have a great day!
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Hi @sparklegirl2018 thanks so much for your encouraging words. I decided to try to graze more today by eating small amounts all day and my nausea was not too bad. I track my food intake with an app and I was able to get a good amount of calories and protein by doing that, thank you for reminding me what works 😁
My Onc told me that going to 400 has had good success with other people as well and my recent scan showed a decrease in the size of 2 liver lesions after 3 months on 400 dose, it’s very exciting when you see good results especially when you struggle with the treatment. It’s well worth it.
I’m going to continue on with the lower dose unless I see progression I think, at least that’s how I’m thinking at the moment.
Hope you had a nice weekend.
Hugs
Lafish
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@lafish That's great about your results!! Wishing you continued good results!
I just finished my first month and had to pause because my neutrophils are too low. Was really upset about this as other side effects have been very minimal. We'll re-check in a week and hopefully I can continue on the 600mg but if not I'll have to go to 400mg. I do feel a little less anxious knowing that people have had success even with 400 mg.
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