CommunitiesLiving with Metastatic Breast CancerHas anyone experienced low white blood cell count with KISQALI?

Has anyone experienced low white blood cell count with KISQALI?

DE

Community Member

a year ago

I was diagnosed with MBC 1 year ago today. Ever since then I hang been taking KISQALI. I started out with 600 mg for 21 days and then off for 7 days. As my white blood cells continue to decline the Dr would extend my 7 days of by another week and then start me back up on KISQALI. I’m now down to 100mg for 21 days and off for 7 or plus days if needed to get my white blood cell count back up. My questions are, knowing KISQALI affects your white blood cell count; 1. Has anyone else experienced this while taking KISQALI? 1a. If so, what was your treatment plan 2. Did Your Doctor completely take you off KISQALI ! 2a. If so what are you doing? My doctor wants to take me off Kisqsli and wants me to start liquid chemo. I feel there are multiple options out there for me to try before doing IV Chemo. I just don’t not else other options are available and my doctor does not share any info with me so any info you would like to share would greatly be appreciated.

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accepted answer

Accepted Answer

Neutropenia (low white blood cell count) is a common side effect that many patients experience with KISQALI, and dose reductions or treatment breaks are standard approaches doctors use to manage this. It sounds like you've been working closely with your care team to find the right balance, and many community members here have navigated similar decisions about treatment adjustments - hopefully others will share their experiences to help you feel less alone in this journey.

3+ patients found this helpful

NN

Community Member

6 months ago

Hi.. I am new to MBC diagnosis and treatment but some questions that come to mind are: has ur mets sites remained stable? If u have any bone mets are you on anything specific for that? Has ur tumor biology changed? As there may be specific meds for that. There is really good recent talk by Dana Farber on YouTube that I will post here and it goes over various lines of therapy. Like you I thought chemo comes later.

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NN

Community Member

6 months ago

https://youtu.be/9lWpFoF7Lu8?si=hyrvkcAbNWga9joW

NN

Community Member

6 months ago

And another general talk about overview of treatments https://youtu.be/MB2pGWuyjUg?si=HxjEkZf6ftO8js7_

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DE

Community Member

6 months ago

Thank you! I really appreciate it.

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HS

Community Member

6 months ago

I was diagnosed with stage four metastatic breast cancer that had spread to my lungs and some lymph nodes in my right armpit. The cancer was in my right breast. I did not get a mastectomy. I started chemotherapy on September 16th and had my last chemo treatment on December 23rd. Every Friday I had my treatments and every three weeks I received Herceptin and Perjeta. On New Year Eve I was told I was in remission and that I was done with chemotherapy. I will have immunotherapy treatments every three weeks for the rest of my life. Herceptin and Perjeta. I have been in remission now for 2 years.

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DE

Community Member

6 months ago

Congratulations and I’m so excited to hear about your remission. It gives me hope. Was your cancer administered via IV. What exactly is Herceptin and Perjeta. Are they pills, shots or infusions?

JO

Community Member

6 months ago

My white cell count dropped drastically after just 2 1/2 weeks on Kisqali . I became so sick I had to go in the hospital. My doctor discontinued the Kisqali .Now I'm taking letrozole and my tumors are shrinking I'm having very good results!

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VM

Community Member

6 months ago

I have MBC ER+ for almost 9 years. I've been on Kisqali for 1.5 years. I had severe disease in Sept and we reduced the dose. Now I have inflammation in my lungs. I had a successful 7.5 years with Ibrance. Started with Ibrance and letrezole; then, Ibrance and fluvestrant. Now, Kisqali and exemestane. I'm currently just taking exemestane. You are your best advocate. Ask more questions, use this app to learn the NCCN Guidelines for your diagnosis to write down your questions. I leave space between questions, so I can write down their answers. You can do this! If you don't like the answers find another oncologist. I had an oncologist ask me my pain level "2". She prescribed oxycodone, because I was going to need it. I don't! She is no longer my oncologist. I take 90mg Cynbalta daily. It helps bone pain and depression. Also, take someone with you to your next appointment. Keep you on task, maybe write down the answers. Prays coming..

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JS

Community Member

6 months ago

I’m about even with you. I’m on xeloda for a while. If I’m starting to feel really bad they give me an extra week off. I don’t want to go liquid chemo.

VM

Community Member

6 months ago

I've had alot more side effects from Kisqali than Ibrance.

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RM

Community Member

6 months ago

Virginia knowing your taking Cymbalta which is a SSRI I took it for 7 years but for mntal health today I take effexor which helped me I never had hot flashes. But what I was going to say Cymbalta is a great SSRI but the w/d's are for me the worst drug I've had to get off of please don't just stop taking it the dr has to help you safely get off. I take pain meds but for reasons that have nothing to do with cancer. When I have the money I'm going back for my medical mmj card RSO takes so many side effects away and there is no w/d's.

RM

Community Member

6 months ago

https://marijuanadoctor.com/blog/rick-simpson-oil-what-it-what-rso-used

GW

Community Member

6 months ago

You need a new doctor

JF

Community Member

6 months ago

I was dx with stage 4 this past June and in July started on 400 MG Kisqali + Letrozole. My neutrophils dropped like a stone over a couple of cycles to a low point of 1.2 or maybe even 1.1. But this is a common side effect of Kisqali. My dosage and timing were not reduced because I never fell below the magic number of 1.0. Since then over the past few cycles my neutrophils have gone up, most recently to 1.7. I'm going to ask if I can be increased to 600mg. But I'm happy to say that even at 400 MG the Kisqali seems to be working well, and I don't have any side effects whatsoever

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LB

Community Member

6 months ago

I’ve been on Kisqali 600 mg and Femara since Aug. 2023, and my wbc has been low from the beginning. My last labs showed them at 23, and neither of my oncologists (Memphis and MD Anderson) have been concerned with that number to lower my dose, which I’m perfectly fine with! They’re just watching my numbers and telling me to be cautious in public places. Do you know what your wbc is?

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NN

Community Member

6 months ago

Hi Leigh, my wbc have also been lower than normal range but my doctor says only cares about neutrophils... I have a dental appt next wk and due to low wbc I have been given antibiotics to take prior to appt.

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JH

Community Member

6 months ago

Hello Deanna, kisqali was my first round of treatment back in October when I started cause I have MBC stage 4 spread to my lung and some of my lymph nodes. I had to go off of it in December because of my liver enzymes being too high. It’s taken five weeks for my liver to return to normal . I’m starting on Ibrance tomorrow.

PW

Community Member

6 months ago

I've been on Kisqali for about 3 months now and I haven't really had any bad side effects other than joint pain but I take MSM daily and it really helps

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CA

Community Member

2 months ago

Neutropenia (low white blood cell count) is a common side effect that many patients experience with KISQALI, and dose reductions or treatment breaks are standard approaches doctors use to manage this. It sounds like you've been working closely with your care team to find the right balance, and many community members here have navigated similar decisions about treatment adjustments - hopefully others will share their experiences to help you feel less alone in this journey.

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