Kisqali side effects
Hello.. I am on week 3 of the first cycle of Kisqali. I have had the dosage lowered to 400 due to gastrointestinal side effects. The stomach cramps are terrible. I have tried dycyclamine, mylanta, gas x, pepto, and other over the counter and nothing helps. I also use a low setting heating pad which does help. I do have minimal diareah and nausea but not to bad. I want to know what anyone else does to deal with stomach cramps. Please help. Thank
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Dear meme5,
We're sorry you're experiencing such uncomfortable side effects. Until other members post about their experiences, there are some links from the main Breastcancer.org site that can help you:
Gas (Flatulence): https://www.breastcancer.org/treatment-side-effect...
Abdominal pain: https://www.breastcancer.org/treatment-side-effect...
We hope you find this helpful!
Best wishes,
From the Mods
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Hi Meme
I'm a few months ahead of you and had the same GI problems. Even after my dose was reduced from 600 to 400 mg, the issues persisted.
Ask your MO for a bentyl prescription. It's for IBS symptoms, which is exactly what we have! I decided to stick it out, as I had read other's stories about SE's eventually improving, which is what mine did. I no longer take bentyl, but have an "emergency" supply.
I also limited my diet to bland foods and limited fruits and vegetables, which was particularly hard for me as a vegetarian. I found protein drinks helpful.
You need to make the choice that works for you, but in hindsight, I'm glad I hung in there.
Gentle hugs,
Eleanora
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Thank you for sharing. The generic for Bentle is dycyclamine which is what I am taking. It helps but not enough. I am almost out and can't refill until April 19. I have placed a call to my oncologist to call me in something stronger. Hoping he does. I had my dosage reduced to 400 as well. How longer before your cramping went away?
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Hi, I’ve on Kisqali & Faslodex, I’m on my 6th cycle, last month I noticed one of my nail is getting brittle and cracking. I always have strong nails. Anybody has this issue? Will Biotin helps?
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@meme5
Sorry, didn't see your comment until now. I took Kisqali after dinner so that the worst of the side effects wouldn't interfere with my day. I also significantly reduced my fiber intake - which was hard for me, as I'm a vegetarian - although I was amused at the thought that white carbs could be eaten "for medicinal purposes". I took Phazyme for gas and still do occasionally, usually in the third week of the cycle when the effects have built up. My gas and bloating were so bad that some of my pants didn't fit.
I found that it gets better over time, but slowly, because even though you're on a lower dose, your body is trying to recover from the higher one.
@anx 789
I have begun to have issues with my strong nails as well. I have taken biotin, but not consistently enough to give it a true test.
Someone on another thread recommended a paint-on called Nail Tek, which is available on Amazon. I haven't been using it long enough to judge. It's $15 a bottle, but looks like the bottle will last several months.
Hugs to you both
Eleanora
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thank you Eleanor, my dosage was also reduced to 400 mg after 3 cycle due to low ANC, I usually take my Kisqali during lunch. I have occasional constipation.
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@anx789
Read an interesting article talking about how the drug manufacturers only submit the data for the maximum tolerable dose to the FDA for approval. Lots of women have required dose reductions in many of the drugs, and now the FDA is requiring clinical trial data for at least one level below the max before they will approve a drug. That way we will have more info when making these choices.
Eleanora
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I don't mean to hijack this thread on Kisqali GI tract side effects, but didn't see another thread for the topic. My wife started Kisqali along with her hormone therapy in late April 23. She is on her second cycle right now, so still early on. She hasn't had the bad GI side effects, but has had one that we aren't aware of ever being reported elsewhere. Specifically, she is having issues with her vision when she first wakes up in the morning and in low light scenarios. It's hard to describe, but she says it looks like things moving are moving through water/creating a ripple effect. Brought it up to oncologist who was equally puzzled, but referred her to an opthamologist to make sure there were no eye mets going on. Eye doc said her eyes were perfect. This side effect started about three days after beginning the Kisqali, and our first real clue that it was related was that it stopped about 2 days into the one week rest period. The real proof came after resuming the Kisqali last Sunday (21 May). Sure enough, three days later (yesterday) she woke up and the aural hallucinations were back.
I write all this to say, if you're on Kisqali (ribociclib) and you start noticing issues with your vision, it might well be an unreported side effect of the drug.
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Hi ladies using Kisqali. I am on Ibrance and new to MBC. I just started my 2nd cycle of Ibrance. The MO had prescribed Kisqali, but Humana Medicare Advantage Gold HMO would not approve it. My question is, if you don't mind me asking, what insurance coverage you may have that did approve Kisqali?? I'd like to make a change next enrollment if possible to cover either drug.
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Irishlove, our insurance is Tricare which is provided through the military. I don't know about the cost of Ibrance, but Kisqali is exhorbitant. I believe it's roughly $300 per pill, so $900 per day for a 600 mg dose. We had to get preapproval but it was pretty easily obtained. The MONALEESA 7 study showing the marked advantage of Kisqali over Ibrance should be enough, but I know insurance companies like to go cheap where possible.
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Irishlove
I have a traditional Medicare plan with a part B supplement through Aetna and a part D prescription plan through Wellcare. Had no trouble getting approval, however I will pay between $10,000 and $12,000 per year. Can't wait for 2025. Thank you Joe Biden
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Eleanora,
I take 400 mg/day,l and my ANC continue to go down, currently at 800, im only on my 7th cycle. Mo advices me to take a break and he wants to give me nephrogen(?) asap. He thinks of reducing the dosage to 200 mg or change medication. Is 200 mg good enough? Anybody here had experience 800 ANC? Is it really that bad?
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Anx
Had my blood work done 2 days ago. My ANC dropped from 2390 to 1340 in a month. Haven't heard from my MO yet.
I was concerned when my dose was reduced to 400mg, but I see posts from people on the lowest doses of Ibrance and Verzenio and they seem to do well. Some also take breaks like what has been suggested to you.
Have you noticed any change in how you feel?
My husband and I are leaving for a cruise on the Rhine river on 6/18 - another bucket list item checked off - and I am determined to go, low anc or not
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Eleanora, yes this cycle is a little tough, more tired and my allergy is worst. what day do you usually do your blood test? I did mine on the 13th day, mo seems to not care about the timing of the blood test but I read that recommended day to do blood test is the beginning of each cycle.
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ANX
My blood work is done on the first day of the third week of each cycle. My MO doesn't seem to care about timing either. I have also been feeling more tired and my allergies have been worse as well.
I think the medication your MO is recommending is called neupogen. Perhaps do a search on here and see if others have commented.
Have a good weekend.
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eleanora and bighubs, Thank you both so much for your response. Ibrance may be working well for me. I just picked up on the fact that Kisquali has a much better survival rate and extended survival time (can't recall the proper terms used for those measurements). I also saw Ibrance users go backwards on any progress after discontinuing the drug. I'm no knocking Ibrance, but Kisquali seems like a better first line treatment plan.
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