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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I am also on this Combo. Today was my first day. Have been on Ibrance/Letrozole for 2 years but did not qualify for assistance with Pfizer this year. I'm stage 4 but currently in remission. Feel like I'm starting all over & worried about Kisquali side effects being I'm 75. Glad you are doing well.
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@wvgreatgrandma2 Sorry to hear about your diagnosis, but welcome here. You'll find answers to any questions you might have. I'm doing really well on Kisqali at the 400 dose, and other than some fatigue, I am living a full life.
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@everblume my onc. put me on a calcium supplement with vit. D.
My neutrophils and white cell count tanked again and my hematocrits dropped also. I had to have an iron infusion and am now on iron tabs. Onc warned that I'm very susceptible to infection. So I had to stop taking kisqali for a couple of weeks. I'm back on 400g again but dose is 18 days on and 10 days off. My onc. initially wanted me to do 2 weeks on and 2 weeks off so we compromised. I'm very worried that my cancer markers will rise/I'll have progression and that I'll have to stop. What is the next treatment after kisqali does anyone know?
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@aoibheann Really sorry to hear you've been struggling with kisqali. It's such a powerful drug. My neutrophil levels have stabilized after many months at the 400 level dose. Hopefully this will happen for you. As my onc tells me, it's a matter of finding the right dose that works with your body. Not sure what would come next. I think that depends on the specifics of your cancer. But wow, you've had a long haul on treatment.
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@aoibheann Sorry things have been difficult. I only just started and had to have a 2 week pause after month 1. We re-did bloodwork and was able to restart on 600mg but if the neutrophils drop again will likely have to go down to 400. Worried that they'll drop too much again but fingers crossed that they won't. I was told that side effects can settle down after a while once your body has adjusted.
I'm not sure exactly what the next line of treatment is but there are clinical trials if Kisqali is not working or not tolerable. Hopefully you're able to continue on the 400mg.
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To Everyone - thankful for this thread and the women here. I was upset about pausing the kisqali for 2 weeks and a couple of people didn't really get why it would be a big deal. Also, I am really adamant about trying not to get sick for obvious reasons but sometimes the response I get makes it seem as though I'm just choosing to be super cautious and don't really have to be. And yes it's my choice but it seems pretty black and white to me. I find myself constantly explaining to help them understand, which is exhausting.
So anyways, thanks for making me feel seen here. HUGS.
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@everblume, I totally get why you want to be proactive and look after yourself and yet some people seem to feel that you're being 'precious'. It can be very irritating. I no longer bother explaining.
@tougholdcrow,glad to hear your neutrophils have stabalised and hopefully you'll have a long run on Kisqali. And yes. I've been hanging on here a while alright, touch wood!
Well I'm back in hosp tomorrow for treatment, fingers crossed my bloods will be ok. I hate being on such a reduced dose. I had a flexible cystoscopy on Mon to check if cancer had spread to bladder - last scan seemed to show my bladder wall had thickened - but all seems to be normal tg. Onc can't figure out weight loss and digestive issues. My GP suggested trying the FODMAP diet which is so difficult. I pity anyone who has IBS.
Apologies for such a long moan. I guess I'm really stressing about tomorrow. I'm off to bed now. Sleep well, everyone xx
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Welcome to a caring and compassionate group. I read here frequently, but haven't commented as I'm on Kisqali with faslodex injections, a different protocol. Having read the last few pages though, I think my experience might be helpful, so here I am.
I started Kisqali 600 mg in August 2022 and immediately tanked with horrible pain and uncontrollable diarrhea. Stopped for a week and started at 400 mg. Still rough, but improved over 3-4 months. My MO prescribed bentyl, which is used for IBS, and I used it 4-5 times as a "rescue" treatment. Still have some gastric issues but controllable with Imodium and Phazyme. My neutrophils go up and down, but never low enough to stop treatment. Fatigue varies, but I feel as though I live a reasonably normal life for someone who will turn 75 this year. Find it hard to believe that I'm on my 33rd round with stable scans. Scanxiety never goes away though.
Stick to your guns! You have every right to do whatever you need to protect yourself.
Will be thinking of you tomorrow and hope everything goes well.
Glad to hear that you're doing well.
Virtual hugs to all,
Eleanora
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@eleanora 33 rounds, that's great! I'm sure your experience will be helpful here. I think it's only recently that many people are prescribed Kisqali, rather than Ibrance, so it was a bit lonely at first.
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Has anyone heard from @forza ? Just wondering how she's doing
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@tougholdcrow hello !! just had this on email , very sweet .
I’m ok , can’t complain. Still on Kisqali which is my first line treatment still … celebrating 🤢🤢 my 6th cancerversary next month.
I’ve not had scans since my last post so have no updates on myself. I had spots appearing and disappearing. So who knows. Somehow they suddenly worry about too much radiation. Those of you who had biopsies under CT like me know how hypocritical that sounds.
However finally hit rock bottom mentally , never saw that coming. I don’t believe in depressions so : bad mood , angry , sad , lonely. Make of that what you will.I shall read up here now to see what’s going on. Seeing they’re prescribing this combo to everybody from stage 2 onwards now this group must have grown a lot 👍
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@forza Sounds ike everything is going as well as can be expected. I know you were worried about a few things, and then went on the great adventure, so I'm very glad to hear from you. 6 years is a great run! I hope you can find more adventures of whatever kind to keep you loving life.
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Wow! Six years on kisqali. That gives me such hope, thanks for sharing. I will be on Kisqali/fulvestrant for 3 years in July, fingers crossed! In the words of Bob Dylan, "Long may you run"
Hope your mental state improves. I haven't read much on the long-term cumulative effects of treatment, but I feel them.
Take care
Eleanora
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Hello all! I’ve been a silent reader of this topic since starting Kisqali and Letrozole this past February. In January, I was diagnosed de nova stage 4 with mets in lungs, bones and lymph nodes. Having no cancer in my family history, this was a great hideous surprise. But, here I am making the best of an unimaginable situation. Just turned 65 - crazy!!
I have learned so much from you all - thank you big time!! ♥️ The itchy skin calmed down finally which was a great relief. I keep it under control with moisturizer daily. However, my digestive issues are a concern considering I have a history of diverticulitis. I have trouble telling difference between a flare up vs pretty bad gas abdominal pains I think may be from Kisqali. I was off it for 2 weeks while I dealt with a bad flu (yup, it’s been fun here 😆). I started up again this past Monday and I’m getting a flare up or Kisqali saying hi again.
So, my question is, for those who say they have gassy issues, are you finding gas pains in your abdomen along with the embarrassing farts (the cough from the flu has been making me sounds like a teenage boy!) ?
I am happy to report that I no longer have any pleural effusion and can get my PleurX drain removed - it was put in January. That is the only clear indication I have that the drugs are working. My MO won’t scan me again until I have been on both drugs for 3 full months. My wbc and abs neutrophils did go down the 1.5 and 1.0 respectively at end of my second cycle. Those numbers are back to normal now after my 2 week vacation but that won’t last. My next scans won’t be till June now.
Thanks for being here and for your support and input!
Have a good weekend! juliana xo
(Hi @tougholdcrow and @Elenora)0
