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Kisqali side effects

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meme5
meme5 Member Posts: 43

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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  • moderators
    moderators Posts: 8,285
    edited April 2023
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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

  • eleanora
    eleanora Member Posts: 299
    edited April 2023
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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

  • meme5
    meme5 Member Posts: 43
    edited April 2023
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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?

  • anx789
    anx789 Member Posts: 241
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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?

  • eleanora
    eleanora Member Posts: 299
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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

  • anx789
    anx789 Member Posts: 241
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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.

  • eleanora
    eleanora Member Posts: 299
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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

  • bighubs
    bighubs Member Posts: 34
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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.

  • irishlove
    irishlove Member Posts: 530
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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.

  • bighubs
    bighubs Member Posts: 34
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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.

  • eleanora
    eleanora Member Posts: 299
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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

  • anx789
    anx789 Member Posts: 241
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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?

  • eleanora
    eleanora Member Posts: 299
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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

  • anx789
    anx789 Member Posts: 241
    edited June 2023
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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.

  • eleanora
    eleanora Member Posts: 299
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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.

  • irishlove
    irishlove Member Posts: 530
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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.

  • anx789
    anx789 Member Posts: 241
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    hi there, I hope everyone is doing fine. I’m on my 10th cycle of Kisqali 400 mg. My new MO started tumor marker last month, they are high (less than 100), and they have gone up around 15-29 points from last month. I am expecting it to be high, but wondering if TM should be within normal range during treatment.

  • simple_mix
    simple_mix Member Posts: 1
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    bighubs,

    When I first started taking Kisquali this spring (2023), I started to see swirly patterns on the periphery of my vision in the middle of the night, when I got up to use the bathroom. Went to the opthamologist and was tested, since I am a candidate for a detached retina, but he said everything was fine, and the problem did eventuallly go away. I just started to browse this forum to see what was here: When I read your description of your wife's vision problem, it sounded so familiar, so I joined this forum just to let you know that she's not the only one.

  • moderators
    moderators Posts: 8,285
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    @simple_mix - Welcome to Breatcancer.org! We appreciate you sharing your experience with vision problems with us. It can be of great benefit to those in our community who are facing similar issues.

    Please reach out to us if you have any questions or need additional information from our main site.

    Once again, thanks for joining us, and we look forward to hearing more from you soon.

    Best regards,

    The Mods

  • cintya
    cintya Member Posts: 2
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    Hello, has anyone experienced joint pain or something similar while on kisqali? Thank you.

  • metaclaudia
    metaclaudia Member Posts: 7
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    Hi, all. I’m on my second cycle of Kisqali, and have been taking letrozole for three months. I have had only one day of digestive side effects since starting Kisqali. I have had intermittent joint pain (which I also experienced when I was solely taking letrozole.)

    Very best wishes to everyone out there.

  • paddlinlou
    paddlinlou Member Posts: 11
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    Hi All

    I've been on Kisqali 400mg since August and have consistently experienced ANC 0.9-1.0 therefore my cycle is 3 weeks on 2 weeks off.

    Constipation has been a problem for me. Currently on a Miralax, colace, and an occasional Bisacodyl.

  • metaclaudia
    metaclaudia Member Posts: 7
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    Hi again, everybody. After my first round of Kisqali, I became neutropenic - low ANC count. My MO took me off of it for a week and my ANC rose again. Starting again tomorrow. If ANC drops again, they plan to take me from 600 mg to 400 mg.

    I did not have any noticeable physical side effects from Kisqali.

  • anx789
    anx789 Member Posts: 241
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    Ive been on Kisqali for 12 months now. I’m taking 400 mg a day since 3rd or 4th cycle due to low ANC. I have progression on bones only per scan last month. I have a new Onco and he wants me to go back to 600 mg, my ANC has been 1.0-1.2. He said as long as my ANC will stay above 0.8 it’s okay. Did anyone here stayed on 600 mg with ANC of 1? Any input is appreciated.

  • casey714
    casey714 Member Posts: 11
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    I have been on Kisqali since April. My body adjusted to the med although I am more tired than I was in my before life. The last few days I have woken up very hungry and feel hunger to the point of being shaky. After lunch time, I feel fine. Has anyone else experienced a low blood sugar kind of response? Any food suggestions? I appreciate your input!

  • eleanora
    eleanora Member Posts: 299
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    @casey714

    When are you taking Kisqali? If it's just before bed, that could be the problem. You also say that you wakeup hungry and shaky but feel better after lunch. Aren't you eating breakfast? Perhaps keeping some small protein bars next to the bed to eat right away would help.

    Eleanora

  • casey714
    casey714 Member Posts: 11
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    Hi Eleanora,

    I appreciate your input! I take Kisqali in the morning (2 hours after the Prilosec). I am eating breakfast. I experienced the same symptoms back in August. Both times, after 2 days, everything seemed normal. At the drs suggestion, I am keeping a detailed food diary. Thank you!!

  • eleanora
    eleanora Member Posts: 299
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    @casey714

    Hope things work out in a few days this time as well. Just FYI, I take Kisqali after dinner, which is generally my largest meal, and it works for me.

    Eleanora

  • casey714
    casey714 Member Posts: 11
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    Eleanora,

    I will ask about taking it after dinner. That is an excellent suggestion. How are you tolerating the med? Thanks so much!