Ribociclib/Kisqali with Letrozole - Any one on this combo?
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@doodler I’m sorry you’re also waiting if you’re back in the treatment game, same here still. This Wednesday I’ll have more blood works to see if my ALT improved. After 9 days off it dropped only to 122 from 157. My neutrophils were also down to critical level and went up and down during the 4 months I’ve been in Ribo. I really hope this works for both of us as I’m ok SE wise with this drug.
edit to add: ALT level went down to 109 after 14 days waiting and the onc decided to steer Ibrance for 2 months and then we can look into Kisquali again. Had a liver scan and found mild fatty liver (unable ti confirm if due to treatment or was there before). Next and unrelated to this topic is a brain scan due to headaches for more than 2 weeks (was told possibly due to high liver enzymes, but just to be sure)
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Hi all :-)
it finally happened. I have a new bone met. It would be my first new whatever since starting Kisqali nearly 5 years ago.
yes I’m confused. The petscan radiologist described it as “new activity” that needs to be followed up. Never seen my oncologist so uninterested. She said it was small , not to worry , stay on same drugs and do a scan in 6 months. So I’ve been getting scans every 3 months and now that they found something… it’s a wait and see approach? Not happy.
I’m *interviewing* another hospital soon , I should list questions , I have no idea what to ask.
help ://
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Hi @forza,
We are sorry to hear of the new bone met. We can only imagine how hurtful it felt for your MO to seem so indifferent to the new metastasis when for you, it obviously is scary. You're likely worried that the Kisqali may not be working effectively anymore, and that is a frightening space to be in. We're glad to hear that you're advocating for yourself, and getting a second opinion on the matter. Please keep us posted with any news as it comes up. We're holding you in our thoughts. ❤️
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Thank you so much moderators 🙏
I am currently in a general hospital with a small oncology department. Going for a second opinion in a hospital that only treats cancer , is a teaching hospital and does research. I guess something can be said for both.
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I'm due to start taking Kisqali, letrozole and faslodex tomorrow and I would like to know if it's easier to take Kisqali at night (to reduce nausea) or if Kisqali interferes with sleep and is better taken in the morning? My hospital recommend the morning but I like to walk every morning and I don't want to feel nauseous or throw up. What's been your experience with SEs?
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@forza I’m sorry about the “new circumstances” don’t even know how or what to call these anymore. I hope you get answers and a plan as soon as possible. If you can and feel like it please do keep us updated. I’m currently waiting on the result of a liver scan, blood tests and an MRI to the brain to see if I can continue Ribociclib on a lower dose or they’ll move me onto Palbociclib due to hepatotoxicity.
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For me K doesn’t cause nausea, so I’m taking it in the morning.
There’s a few here that do take it at night.
good luck starting
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@forza, thanks for your reply. Good to hear it didn't upset your tummy. I guess I'll try it in the morning and hope for the best…
I'm sorry to read that you have recently had a new bone met. I understand why you would feel confused about why your onc would push out your next scan to 6 months from now. It's good that you have an option to discuss your case with the oncs. in a different hospital to get a second opinion.
Thinking of you and sending you ((hugs)) xx
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I've never had any nausea either. I always take my Kisqali in the morning.
Forza, I don't have any suggestions for questions to ask, but I'm glad to hear you're getting a second opinion. My most recent scan also showed a new small spot, 1.3cm, on my pelvis. It's been almost 2 years on K for me. My MO recommended SBRT on the met and stay on Letrozole/Kisqali for now. I had 3 sessions of radiation. Next scan is in April.
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I am new to this combo and have been lurking here for the past few weeks. I was diagnosed in January after they found that I had a plural infusion on an x-ray, because I was becoming breathless at times. I have a few small tumors in my plural space, in my lung and some nodes in my lung are swollen. I am having trouble dealing with the pleurex tube that they put in after my lung biopsy. It is not draining. I was on just Letrozole for three weeks and did fine with that. I just started the Kisqali a few days ago and have a rash on my neck and severe brain fog (which my doc swears isn't from the Kisqali) I am dizzy and unable to drive. I am hoping that these symptoms pass. My question is, do the side effects go away on your week off? Do you ever have a good week. It is scary to think that this is going to be my life.
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My wife takes hers at night because she found taking it in the morning increased her bouts of nausea. Since taking it at night she hasn't had those issues.
@knx11
My wife is on this combination (3 weeks on 1 week off) and swears the week off is very noticeable. Her brain fog diminishes, she has energy, is motivated. Basically feels like her old self, only to know it's relatively short lived as the cycle starts anew. For her the side effects, even when they are at their worst, have subsided to mostly just annoyances now, but she is still noticeably better during the week off. I hope you experience the same.
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@mozuke1 second opinion onc also thinks I should stay on the Kisqali, fairly textbook guy. He’d rather I have an earlier follow-up scan done . Doesn’t understand the 6 month either 🤷🏻♀️
Whilst examining me he thought he felt a hard patch in my “other healthy” breast so he also wants me to have an echo.
Can’t find my original biopsy report , they never uploaded it in the system , so comparing future biopsies should be fun.
Now I get to phone my normal hospital to get these things organised… joy !!
@aoibheann thanks , all textbook really , the met that lit up on petscan might not be a met ?! But maybe there’s a lump that didn’t light up on the pet. I really don’t have brain fog here 🙄🙄🙄
@kxn11 the end of the recovery week and the entire first week on Kisqali are the best. In my case. Never heard of rashes here ? It’s hard to pinpoint what causes what after taking different meds together. Just hearing our diagnosis causes brainfog !! Thinking the brain is so busy processing it all , it thinks : #%^ it , I’m having a snooze
💜💜💜
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Hi everyone, I’m new here.
sorry @forza about the new met and the medical mess that you need to navigate. Sending you much love.
I’m on my second cycle of Kisqali and I keep looking for answers as to what people do with the fatigue! I also have shortness of breath but I had this when I was on nolvadex when I had stage 2 BC in 2020. I have bone Mets, diagnosed mid January.
im also taking Zoladex/faslodex/xgeva every 28 days, before I have my lumbar decompression surgery. So I’m struggling with knowing which thing is causing which side effect.
so far the week off of Kisqali is the same as week 3 on Kisqali. The worst for me is the first week of taking the pills. First pet/ct is in 1 month. I take it in the morning, tried without food had nausea but changed to right after breakfast and it went away.
im 37 and I’m wondering how I’m going to manage work, if I’m going to play sports again or have a life while I’m so exhausted!
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Targeted Therapy
Hormonal Therapy
DX 1/2024, other, Stage IV, ER+, PR+, HER2-
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Welcome @radiation_cinderella
I guess you didn’t want to find yourself here . That combination of drugs is completely standard for us. Give it some time. It has great results from what I read here. Amongst my medical mess , this is still my first line treatment , I’ve never had radiation or surgery , everything melted away within months albeit with some extra breaks and bloodwork early on.
you’ll make it work 💪
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@radiation_cinderella, welcome again to Breastcancer.org. We're truly sorry that you're here for this, but we're glad that you've found your way to us. We hope that you'll receive responses from other members soon, offering tips, experiences, and words of encouragement. In the meantime, here are other topics you can explore, and some links to our main site that you may find helpful:
- Bone Mets Thread
- What to expect when taking Kisqali
- Adding Kisqali Improves Overall Survival in Younger Women With Advanced-Stage Hormone-Receptor-Positive Breast Cancer
Please feel free to take a look at it whenever you have time, and if you have any questions, please don't hesitate to ask. We're here for you!
Sincerely,
The Mods
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Having minded my small grandson for a weekend both my dh and I came down with a v.nasty chest infection. We're both currently on antibiotics.
I had my first fortnightly bloods and ECG check-up for Kisqali today. The nurse rang to say that though my ECG 66 was deemed ok, my CRP was raised, showing that an infection present and that my neutrophils were low. Consequently Prof has decided to stop Kisqali for a week and have bloods done next week to see if my neutrophils 'bounce' back. I told her that I had a chest infection and just had my last antibiotic but she ignored that.
I feel v.anxious as I'm scared that the chest infection and antiobiotics are skewing my bloods. However I see that some people also experienced low counts and I'm wondering if anyone had an infection that could have affected their bloods? Is it just kisqali that causes the low white cell count? Is there's anything I could do to help raise them in the meantime, diet-wise or ??
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@aolbhean, I can't comment on how the infection might impact your neutrophil count, nor on ways to actually increase them, but will say that low neutrophils is one of the most common side effects of ribociclib. While it intentionally interferes with cancer cell reproduction, it also unintentionally interferes with normal cell reproduction as well, so you are, in a way, suppressing neutrophils while on it.
That said, our oncologist tends to treat the cut off line (1000 as I recall) as relatively arbitrary and so long as the low neutrophils aren't causing any issues, he won't stop the treatment just because they dip below that magic number. He did say that a little exercise right before drawing blood will increase your counts temporarily. I don't know how that works, but he always advises my wife to walk briskly to the lab or go up and down a couple flights of stairs before having her blood drawn. Not because it actually fixes the problem, but if the count comes back above the magic number, he doesn't have to document why he is continuing the treatment. If it comes back below he does. You could try that if you're up to it.
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I have tried many things over the past 2 years to attempt to raise my ANC. Nothing dietary moved the needle for me. I had also read that exercise will improve the counts, and I did notice that my counts were higher on mornings when I had run before my blood draw. (Something about neutrophils sticking to the sides of veins and being dislodged by vigorous activity and showing up in sample better) Another tip is to have labs done later in the day. I have switched to afternoon labs (I am not required to fast) and this also seems to result in higher counts. As stated above, this isn't really "raising" the neutrophil count, only showing higher results. My MO is also not concerned about anything above .8, as I have not had any issues with increased infections or illness while on Kisqali.
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@aoibheann, I take a daily dose of cacao, but never with a sweetener. There are some interesting studies about it and one about how Lindt dark chocolate increases neutrophils. I can say that since beginning to take the cacao my blood counts have improved, although I will be interested to see if it helps deal with the damage anti-biotics will have done to them cos of dental treatment. I get blood work done next week and finish anti-biotics on Thursday.
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@malleemiss251 , Do you take cacao nibs or cacao powder? My neutrophils went up to 1 so I'm back on Kisqali. I can hardly stay awake these last 2 days, not sure if it's the Kisqali or valoid
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Hi, @aoibheann, I take two tablespoons of cacao powder in either, warm almond milk, or mixed into my breakfast smoothie. I am allergic to the proteins in dairy - so i use almond milk. I know everybody is different, but I find it works for me. Good luck😀
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@malleemiss251, that's great, tks. I'll order it now and hopefully it'll work for me too. My onc calls any supplements 'leprachaun droppings' so I don't expect much support from him when I tell him why I'm taking cacao! Tks again x
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@aoibheann, yes, most regard supplements as a waste of time. But reputable studies do show interesting effects from cacao. It is the only reason I use it, and when I began using it I was very skeptical - but it works for me and my onc was so happy with my recent bloodwork that when I told her I was using it she did not tell me to stop.
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@malleemiss251 , I read that study on Lindt dark chocolate which supports the theory that dark chocolate/cocoa improves neutrophils counts. Your bloods would appear to support that study so I am definitely going to give it a go as I'm nervous my neutrophils will drop again once I'm back on kisqali. I just hope I can take it. Thanks again for the info
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I've finished a further week on 600mg kisqali daily and my neutrophils today had dropped to 0.8. Onc. has px 400mg daily and hopefully this will work and my neutrophils will rise. I've ordered cacao and will be adding a couple of spoons of that to my diet. Onc. pharmacist advised that it shouldn't cause neg. interactions if I take it in moderation. Also my weight has dropped by 2.7kg from last month. I've been feeling quite nauseous despite taking valoid.
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Hi @aoibheann, I also checked about possible interactions and it seems no issue with interactions - you need to be careful with kidney crystals/stones if you take too much. My blood work today so we will see if it helps to offset damage caused by anti-biotics last week. I will get results either tomorrow or Tuesday. On a positive note, Ribociclib seems to be as effective on the 400mg daily dose. I have seen a number of members talk about the success they have had on this dosage level.
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Hi @aoibheann, I had a phone consult with my MO yesterday, she would not have guessed from my bloodwork that I had taken anti-biotics. The blood work was really good and my tumour markers fell again - so I am really happy.
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That's great news, @malleemiss251, I'm delighted for you. What are your neutrophils at?
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At the time the blood was collected - last Wednesday they were 2.4. That was in the middle of my "off" week.
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