Kisqali side effects and timing
I was diagnosed with stage four NBC earlier this year and just started a combination of anastrozole and Kisqali. I am three weeks on with one week off. I have experienced some persistent nausea, but most concerning is my serious fatigue. I’m wondering if this improves over the months as you continue with the Kisqali? I’m also wondering if the third week of the three week Kisqali is the hardest as far as side effects go.
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Hi @kidbooklover, and welcome to the community!
Certainly, nausea and fatigue are tough side effects to deal with. We're sure other members will chime in with their tips and shared experiences on kisqali and nausea too. Until then, we have helpful sections on managing nausea and managing cancer fatigue that might give you some tips to feel better. Hopefully, others here on the same meds can share their experiences with the third week.
Hope this helps. Keep us posted, and remember, we’re here to support you! 😊
The Mods
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Fatigue is pretty common for us with MBC no matter what the treatment. I did find that a dose reduction of Kisqali to 400 mg made a difference in my overall energy and well-being. Also, keep moving if you can. I find that when I'm really tired, if I can push myself into a walk outside, it really helps.
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Hi @kidbooklover , which dose are you on? I have been on Kisqali since October, on 400 mg. Given the sorry state of my liver, my MO decided not to try a full dose.
I have slight nausea from time to time and I find that having a light breakfast helps. For me, fatigue is more pronounced by the 3rd week of the cycle and I echo @tougholdcrow advice about moving. It does help me, even if I have to push and drag myself through the first half an hour.3 -
Hi @kidbooklover, I am currently on cycle 16 of 600mg of kisqali. I have been extremely lucky as I have had only minimal side effects. Nausea was never an issue for me. As @tougholdcrow suggests, keeping active seems to help deal with fatigue. Strangely, the times I felt fatigue were generally in the first 2 days of the off week of the cycle. Low grade neutropenia can sometimes be an issue for me. Last blood work was the worst - still above dose reduction point, though. Onc is happy for me to continue with the higher dose. In your pocket with support and sad that you have joined the MBC club that nobody wants to join.
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I have to start My 6th cycle of kisqali on January 5th.
At the same time my five sessions of radiotherapy will start next week or the week after (I haven't gotten insurance approval yet)
Kisqali usually needs to be paused 3-4 days before starting radiotherapy to avoid toxicity,
The problem now is that My oncologist will not be working on Sunday, and this will leave me very confused and do not know what to do.
Should I take the medicine on time, and when they tell me the exact time of the radiotherapy , I stopped (This means I may only take the medication for a few days),
Because the method of taking the medicine and doing radiotherapy is done in the following manner:
If I am taking kisqali for example on 5 jan 2025,I have to stop 3 or 4 days before the sessions, and Sessions are five every other day, that mean it will take up to 10 days. After all the sessions are over, I must also stop 3 to 4 days before going back to kisqali,
This means stopping taking the medication for 16 days.
Will the medication cycle be correct this way, i.e. starting for a few days, then stopping for 16 days, then starting again to complete the cycle?
Has anyone gone through the same thing?
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Hopefully you'll be able to start to radiotherapy midway in the off-week for Kisqali so you don't miss too many days overall. Many of us have had to take an extra week off from a CDK inhibitor at the end of a cycle because of neutropenia, and it's been fine. So I wouldn't be overly worried. Are you working with a scheduler at your medical facility? Make sure that person knows the situation so that you can be scheduled in the off-week if possible.
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@tougholdcrow
thank you for your reply,
This is exactly what I will do and what my husband advised me to do, I will start the 6th cycle of Cascali tomorrow, and try to postpone the radiotherapy until the week off the medication.
And that's exactly what I did when I had my previous five radiotherapy sessions.
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Thanks to all of your for your suggestions about fatigue. I guess I have to take action myself — no shortcuts. I do feel very fortunate to be able to take this medication and to extend my life. I am almost 69 - both my mother and my sister fell to cancer many decades earlier in their lives.
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As for my personal experience,
I faced some challenges when I began my first cycle of Kisqali. I developed a rash and redness on my face, particularly under my eyes, on my cheeks, around my nose, and on my chin. However, this issue was resolved after my oncologist recommended usingsunblock. In the second cycle,
I experienced the rash again, but this time it appeared on my chest and torso. Fortunately, it disappeared after five days of using an ointment containing cortisone.
Throughoutmy treatment, I have also experienced low platelet, neutrophil, and platelet counts.
Additionally, I havesuffered from severe stomach pain, to the point where I could not consume hot beverages and had to cool down my tea and coffee in order to be able to drink them without pain. However, with the use of PPI drugs, I have been able to manage the pain. In fact, I have relied on this medication for the past sixmonths of my treatment. My oncologist advised me to take the PPI half an hour after breakfast, followedby Kisqali an hour later.I have also noticed that Kisqali often causes me nausea, but I have found that closing my nose while taking the medication helps alleviate this side effect.
This method has beeneffective for me.I forgot to mention that I have been experiencing roughness and peeling on the tips of my fingers , as well as the appearance of longitudinal white lines on my nails. Additionally, I havebeen having a strange vision in my right eye, which appears as a crescent shape with jagged edges ,my oncologist said it’s one of the kisqali side effect
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Thanks to all of your for your supportive comments and helpful information. I will start to move more!!!
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@kidbooklover I am 67 (66 when this all began), so I too am grateful to have lived this long, and my heart goes out to younger women struggling with this. Still, I hope we have years ahead.
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i was diagnosed in late November. I had lumpectomy and genetic testing (clear) and OncotestDx (score of 10). I'm hormone positive (ER 100% and PR 90%). Chemo is not recommended but due to node spread and EN i will have radiation of breast, axilla and supraclavical. Also, will be on aromoatase for 7-10 years. Yesterday the oncologist through a wildcard and wants me on kisquali. 3 years. Blood tests bi weekly at first moving to monthly. My cancer was Staged at 1. The side effects sound horrible and I already suffer from AFIB. I'm trying to weigh the benefits vs. side effects and heart risks. Any feedback would be appreciated.
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Hi @magnoliajoan and welcome to Breastcancer.org!
We're so sorry to hear of the reasons that bring you here, but we're really glad you've found us. You're sure to find our community a wonderful source of advice, information, encouragement, and support — we're all here for you!
However, this thread is specifically for members who are metastatic (stage IV), so their experience is likely very different than what you're facing. We'd suggest you join and post this thread on the Stage II forum about Kisqali for early-stage disease.
In addition, you may find it helpful to read the research news announcing the early-stage indication for Kisqali, so you have some context around why this medication has been suggested for you:
We hope this helps. Please let us know how else we can assist you, and welcome again!
—The Mods
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I was on 600 mg of kisqali for all of 2 weeks and my liver enzymes went a little haywire. It’s been a month and they still haven’t normalized completely so we will be switching to Ibrance. I hope the side effects haven’t been too bad!
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@kidbooklover and. @tougholdcrow
Just read your comments about feeling fortunate to be dealing with this later in life and I totally agree. While I'm not as strong as I was when younger, I do not need to care for children or hold down a job, and Medicare covers most drug costs. I also agree with the comment to get up and move, even when you don't feel like it. It helps mentally as well as physically. I'm in my 70s and I live a normal, active life.
My Kisqali dose was lowered to 400 mg halfway through the first cycle because of excruciating pain, and that was almost 3 years ago, so I believe the studies that say the lower dose is just as effective.
Here's to a long run for all of us!
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@alden722 , Hi there. It took a little over 10 weeks for my values to return to normal. I was placed on high dose steroids to address the liver inflammation and then I had a serious adverse complication from the steroids so our situations may be a little different. I think it's great news that your numbers are trending downward, and hope you're back in the normal range soon. It sounds like you've been through a lot with surgery and radiation on top of this. I hope you're doing okay and that Ibrance works well for you!
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Hi all. Joining this thread. Mets to lungs in March 2025 after only 3 years. Serious shocker that is still messing with my head. MO started me immediately on Faslodex and I can tell it's working because my neutropenia is back in my fingers.
Started Kisqali 3 weeks ago and knew my body would not manage 600, so started on 400. However, I did 13 days on 200 (my choice) to ease myself into it. 200 mg was nothing. For a week now, I've been on 400 and what a difference in how I feel. Knew every single side effect going in and have every medication at my fingertips.
Taking it in the a.m. after a full breakfast helps. But wham, just a 1/2 hour in and I feel dizzy for a while, weak, but with only minor tummy upset. I've had really bad fatigue while on Aromosin, but this jacks that up! I do force myself to exercise every day, even a 1/2 hour. I also drink a lot of water.
I now have my week off and I would imagine my numbers will be ok since I was on a half dose for 2 weeks. I hope I'm able to pick my head off the pillow by the 3rd week!
I've read that it can take a few months but side effects may ease. This second cycle will be the real test however. Not too much you can do to escape those low WBC's. And praying those liver enzymes hold up. It's all kind of a crap shoot, right? I've read people who almost sail through.
Hope to speak with everyone and see how they are doing and gaining any insightful tips!
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@hippmark I've been on Kisqali for over a year and have had very few troubles. I started at 600 but was bumped down to 400 because of neutropenia. I've found it very manageable. I'd say the the biggest challenge has been sleep disturbance and fatigue, but I have ways of managing the insomnia and I rest on days my body tells me to. Sometimes, I can beat the fatigue by moving around, taking a walk. Life is mostly normal. You'll get used to the cycle, I think, and let's hope it works for a long long time.
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Thank you! Makes me feel hopeful. I'm thinking of trying the next cycle at night. I also have ways of managing insomnia, so I'll give it a go!
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Question please. Has anyone lost their appetite on Kisqali? I started losing weight (I only weigh 108) before I started taking it and packed on the calories but couldn't gain an ounce (wasn't really hungry but ate anyway). I also started Faslodex in March. Now that I am on my full 400 dose and taking it at night, I have zero appetite. Especially in the morning. I am not nauseous per se, but full even after a couple of bites.
Has this happened to anyone else? I know it can be a side effect. Going to ask Doc for an appetite stimulant but can't stay on that.
Got Megestrol today and it takes 3 to 4 weeks to work! Ack!
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@hippmark I haven't lost my appetite, but there are points in the Kisqali cycle when my appetite is reduced. I don't control what I eat, other than that I don't drink alcohol anymore. Is nothing tempting?
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The only thing I can get down is protein shakes. And I sip those throughout the day and get full very fast. I read this Megastrol is not really an appetite stimulator but is also some type of cancer drug that can increase appetite. But that's weeks away. I've read THC helps and I do have some medically, but it also knocks me out!
Discouraging because I think Kisqali is working. But I can't keep losing weight and not be hungry. I've always been thin and was teased as a kid. So it's messing with my psyche too!
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@hippmark I'm chubby. I went to see my GP last week and she said, "Hmm, you've gained a few pounds since last year." I looked down in shame and she said, "No! THat's good!" First time in my life I could feel ok about that. Weight is so psychologically complicated in our world, isn't it? Anyway, I am wondering if a bit of exercise might increase your appetite? Like just a longish walk if you are able. If you are getting protein shakes down, maybe ice cream? I could possibly live on that myself. Hugs to you.
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Yes, it's strange the way we see ourselves. But mine is not a healthy weight at all. Id love to have a few extra pounds. Like say 15. My shakes are healthy and have 900 calories each. But I'm sick of them after 6 weeks.
I do exercise at least a 1/2 hour every day, no matter how I feel. Used to be more, but my back is not playing fair right now.
Part of this might be psychological at this point. Who knows? I used to love coffee and couldn't wait for my morning cup. Now, I don't want it.
Thanks for the ice cream reference. I don't do sugar a) don't like sweets b) tumors love sugar.
Hoping this megestrol kicks in and I can join the "you could lose a few pounds" club!
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Yeah, I get ya. Trying to imagine life without coffee. Thank goodness for medical science that has something that might help and I hope it does and that you feel much better soon.
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Thinking healing thoughts for you and fingers crossed that the medication works.
I'm with you on the coffee! Still have mine every morning sitting with a book in my favorite chair. When I was first adjusting to Kisqali with awful intestinal cramping, I had to give it up for a week or two and then slowly re-introduce it with lots of milk added.
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@eleanora Kisqali gives me acid reflux, so I probably shouldn't be drinking the coffee, but fortunately if I take just one omeprazole and the occasional Tums it clears it up for the month. I'm very susceptible to drugs in that way. But yeah, my jones is a large whole milk latte and I buy a super mellow roast from my local coffee roaster. Definitely no Maxwell House. My husband once got aspirational pneumonia from acid reflux and was in the hospital for 10 days, so it's nothing to mess with.
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