What to expect from Kisqali (side effects)?
Hi, I'm a caregiver to my mom, who was diagnosed de novo with metastatic breast cancer just last month in August 2024. She has metastases to the bones, liver, and lungs, and she's scheduled for a brain MRI next week. She's started on Letrozole, which was paused while she's been undergoing palliative radiation therapy to her leg and hip for pain management. She'll be restarting Letrozole and starting Kisqali after radiation. Kisqali will also be a slow ramp, starting with 1 pill per day, and a check-in with the oncologist after the first week.
My mom is concerned about the side effects, and although we know everyone's experience is different, I'm wondering if anyone here has been on this treatment (or are caregivers to someone who has) and what your experiences were with side effects?
Also - thank you to this community for the active and supportive discussions you have going on! If you have any other suggestions for someone in our situation, they are welcome. My mom's primarily caregivers are myself and her sister, and we're very much in a busy time of diagnostics, early treatment, and finding her support that she needs.
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Hi, sorry about your mom diagnosis.
I had letrozole and kisquali as my first line of therapy. It's the combo that put me back on my feet after moths in bed with 3 broken vertebrae. I hope it will work well on your mom!
I had some pain to my knees caused by letrozole, and nothing really caused by kisquali. Other than morning blurry vision and spinning head for few minutes when I was getting up, but only after 10 months I used it.
I found it very easy and very effective, as my PET initially looked like a Christmas tree, and after 10 month was solid black, and my multiple liver mets disappeared.
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I was on the same combo since late January until just recently. I had the 600mg dose at the beginning. I had low neutrophil levels in my blood test results, which was a big concern, so I was eventually changed to 400mg per day. The low neutrophil levels were still a problem, and I was moved down to 200mg per day.After a couple of months at the lowest dose, I have progression of the tumours in my liver, so I’m off kisqali now. New treatment plan to be given to me by the oncologist this week.
I had minor issues with mouth sores and a rash (first on my fingers, then on my neck). Those went away as my dose dropped anyway.
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Hi @inspectorspacetime, I am on my 12th cycle of letrozole/kisqali and they have been very kind to me, in that I seem to have had minimal side effects. The side effects I did get lasted for about 2 days each and have not raised their heads again. My bloods are taken every month and my neutrophil levels range from mild neutropenia to very low normal. This drug combo has seen my tumour markers drop over the past 12 months - ca15-3 dropped to 10 last time. I feel so good on this combo that I rejoined gym and am doing weight resistance training. My family have commented that they haven't seen me look this well for years. But everyone has different reactions to drugs. I know that various members of this site have had good results with the lower dosages, as well. Wishing you and your mother well and in your pocket with support.
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Thank you so much @amel_83 , @doodler and @malleemiss251 ! This is so helpful. I know everyone's experience can be different, but it is encouraging to hear how kisqali worked for you all. I believe my mom will also be put at ease to hear what real people have experienced. Also, @doodler , I wish you the best with your new treatment plan.
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Thank you @inspectorspacetime … it's a setback, true, but not the end of treatments, that is for sure. I should note that the kisqali did at leas stop my bone mets… they're good and stable now. I just had some mixed results after a few months. I wish your mother all the best with her treatment.
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@inspectorspacetime I've been on Kisqali for five months now at the highest dose. I don't have many side effects except for an occasional drop in my neutrophil count. I feel good. In fact, I feel better on my weeks on Kisqali than my week off, on letrozole alone. Of course, every case is individual, but I would not fear these medications at all. They are miracle drugs.
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@doodler I'm glad to hear your bone mets are stable now. Thank you for your well wishes!
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@tougholdcrow Thanks for your message. That's great to hear you feel good. These medications are definitely amazing. My mom started her first pill today. Fingers crossed!
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Hi, All
I am on Kisqali/letrozole that worked wonders for me in three cycles, but… the last week on my 3rd cycle I developed rash that is not easy to control. With heavy antihistamines (those that go over brain blood barrier, like Zyrtec, Claritin or Benadryl) I am sleepy and weak the day after, and Allegra - the lightest anti-histamine, doesn’t help. Any thoughts?
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Has any kind of topical treatment been discussed? I was a pharmacist before ribociclib came out (retired early) but filled plenty of prescriptions for creams or ointments over the years…
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Hi @laguna24 I had a rash for a few weeks on the palm of my hand and the inside of the fingers on one hand, and then later it popped up on the sides of my neck under my ears. A 1% hydrocortisone cream was recommended to me (over the counter). The rashes went away during my "week off" from the medication, but I ended up getting a lowered dose due to other side effects though, and the rashes disappeared entirely.
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Thank you so much for your response. Today is my first day off after my 3rd cycle. Yesterday I had rash all over my chest and neck in addition to hands and feet. Even though I took Allegra two times and Zyrtec overnight I still have hives today, not as visible, but still itchy. Hopefully it will go away this week. But I guess I will have to go lower in dosage next week. By the dates I see that you are off Kisqali completely.
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@laguna24 Yes, I ended up having a change in medication, I'm now doing the chemo. Sounds like the rash you are experiencing is quite different from what I had… the rash I had was sort of dry and scaley and itchy, but not like hives. Different appearance.
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hello. I’m here for helping to support my sister.
She is stage 4 with recent Mets to bones. Found out in May after incidental finding on CT of abdomen.Unfortunately she was unable to tolerate Kisquali due to low blood levels ( not sure exactly if WBCs or baby neutrophils?) I believe they reduced her down from 600 to 400.
She is now trailing Ibrance but as of yesterday after a week her labs don’t look good.
questions.
1. Has anyone had similar experience? Did anything help tolerate this targeted therapy better2. What is lowest dose some titrated to and still found beneficial?
She isn’t handling it well because she feels like she is out of options. I’m hopeful that there are other options such as metronomic chemotherapy, and looking outside to supporting herself by seeing a naturopathic oncologist.
thanks for listening and support.1 -
@sisterslove1, lots of people have the low neutrophils issue. I did but I use cacao in almond milk (allergic to dairy) to give them a boost after reading a study about Lindt dark chocolate and its effects on neutrophils. But I couldn't face Lindt chocolate early in the morning, so I thought cacao, which is the key ingredient of chocolate would likely be as effective. My neutrophils are now in the very low normal range, or just below. The bonus of cacao is that it has a "bliss" factor. Even though I limit myself to one cup a day, I fear I am quite addicted to the feel-good effects of it. I doubt I could stop drinking it, even if I wanted to. This is the website holding the study - but I am hopeless at making these links work. If you google Lindt and neutrophils it should come up in the list of websites. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5835384/
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I was diagnosed at stage 4 last December and on the letrozole/Kisquali protocols (600 mg). I feel great but have started to get frequent UTIs and my hair has begun to thin. I’m now wearing wigs when I go to important events. See my Oncologist in two weeks.
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