Early Stage Breast Cancer - anyone on Letrozole and Ribociclib?
Wondering if anyone has been diagnosed with Early Stage Breast Cancer and on AI/Ribociclib regimen?
I’m going to start after radiation and wondering how your treatment is going and if there are any tips out there!
Thanks in advance!
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Hi. I am on letrozole and starting ribociclib in a couple of days for IDC left lower inner quad stage 2 B. presumed positive internal mammary node. Had lumpectomy and completed radiation a week ago. A little nervous about starting the ribocicoib . Have you started it yet?
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Hi musiclover1.
Congrats on finishing radiation! I hope you are feeling okay? I was zonked the first week after radiation - really exhausted, full body soreness, and a hard time staying warm. I started the Kisqualis on Wednesday and so far it seems fine? I haven’t noticed anything yet, but it could be early days. Maybe I’ll notice something after week 3? I was also diagnosed stage 2 node negative.
I had an EKG done before I started the meds, and will do it again in a couple weeks as well as blood work every three weeks.
I’m not sure what the new normal will be or what it will feel like. My surgeon said give it 4-6 months so trying ot be patient and just listen to my body.
Take care,
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Hi lukasmom. Thank you! I just started the Kisqali tonight. Will see how it goes. I am on medical leave from work. Should head back in a few weeks after starting Kisqali. The oncologist advised me to wait before going back. Feeling guilty about nit working.
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i was diagnosed with Stage 1 with multi node positive. i will begin radiation in a couple weeks and then the doctor has recommended Kisqali and an Aromatase. i am quite alarmed by reported side effects and i already have AFIB. i'm thinking of not doing kisqali as the side effects vs the recurrence improvement don't read significant. My oncotestDX score was 10. My recurrence risk at 10 years with adding kisqali appears to be a difference of 3.5-5% recurrence without Kisali to a 2.5-4% recurrence with Kisali. What am I missing? I've only spoken to the oncologist 1x but she said she was recommending it. Feedback on side effects or other experience with similar details would be most helpful.
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Hi magnoliajoan!
I listened to the podcast linked in this article and felt it was worth it.
I currently don't have side effects but have only taken it for a month. Maybe get a second opinion if you are low risk?
I had a mamaprint test, and my results returned as high-risk Luminal B. I feel better trying this medication for the recommended 3 years as long as I can tolerate it.
Take care!
Lukasmom
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Hi magnoliajoan
I also am doing okay after 2 1/2 weeks of taking the Kisqali . I am high risk for recurrence stage 2B with presumed positive internal mammary node. Maybe a second opinion would help.
All the best,
Musiclover1
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Musiclover1 -
Thats great to hear you are doing okay after the 2.5 weeks of taking Kisqali.
Lukasmom
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I have taken Kisqali for a year and a half. I've had no adverse side effects except thinning hair. Each hair seems thinner and breaks easily. In my view the 25% reduction in distant recurrence is well worth it.
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tnsplayer-
Thanks for sharing this! Do you take hair vitamins? Or just keep your hair short?
I am neutropenic so taking a little longer break. Did you ever have this issue?
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My hair is medium length. I try the so-called thickening shampoos and conditioners with biotin. I don't think they really work. My oncologist suggested minoxidil. I'll try that next. I take Kisqali and anastrozole, not letrozole BTW.
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My oncoscore risk was 15% chance of recurrence in 9 years if I took anastrazole. A second opinion oncologist looked at my records and said he estimated 10%. In any event lowering those numbers by 25% is worth a little hair. I also exercise (tennis and walking) which is said to lower the risk of recurrence by 30%.
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I agree and also am trying to exercise more. Going to the gym doing strength training , walking and swimming . I have to work on my dietary habits and try to lose some weight.
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i'm still on the fence. i exercise at least 250-300 minutes per week. eat well. am at good weight. my oncotest was 10. i understand the concern is my nodal involvement. mammograms and ultra sound missed my cancer more than 1x.
i may see how i tolerate Kisquali but if it impacts fatigue, digestion, hair i'm struggling feeling poorly for 3 years. i love to travel and the blood tests will definitely impact my ability to do what i love. being new to cancer diagnosis i'm likely over thinking this as I haven't even started the radiation that will be followed by aromatase so I still have some time to better understand. i really just want to feel strong like i do now.
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Hi, I had a double mastectomy on 12/21/23, followed by radiation. My cancer was missed on mammogram 2x, I found it because of an inverted nipple. I had extensive lymphovascular invasion and a micromet in one node. I've been on letrozole for almost a year, doing fine on it. Doc just recommended that I start ribocyclib (kisqali) and Zometa infusions for osteopenia. I'm struggling with what to do, but think it might be worth seeing how I tolerate kisqali because I certainly want to do all I can to prevent metastatic disease. I'd love to hear from those on both drugs.
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I'm back on my second round of Kisqali, and so far - knock on wood- it's been fine, except I was neutropenic. I finished radiation on 12.31.24, and I was wiped out, so I'm thinking that also was part of my neutropenia.
I haven't had diarrhea, and while I was fatigued during my first couple weeks of Kisquali, I feel much better now. Honestly, I think the fatigue was from radiation. I do exercise regularly, and I was so worn down during radiation that it was hard to go on walks.
But now I'm back to the boxing gym and taking and teaching lots of yoga.
My mammaprint came back Luminal B high risk, so I am Kisquali has been approved, and I also wanted to do everything to prevent metastatic disease.
I was super nervous about the side effects, but so far, it's okay, so hoping I can stay on it and stay strong and healthy.
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I’m on the second month of ribociclib. I am noticing dysgeusia or bad taste in my mouth. Also some urinary frequency but no other symptoms of a UTI. If it gets worse I’ll reach out to my oncologist. I’m trying to drink a lot of water.
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I've just had a local recurrence of stage 1 BC after 7 years. I am going on Aromasin and Kisqali (400 mg) in the next two months. I am petrified of the side effects. I know I'm being vain, but I am most concerned about hair loss. I haven't told anyone other than my husband about the recurrence and don't plan to unless the side effects force me to do that. I just don't want to worry family and friends. Any experiences to share here?
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I am sorry to hear about your recurrence. I hope you are recovering from your treatments. I finished chemotherapy on October 2 and have been using Amla oil and taking hair supplements with Biotin. My Southeast Asian friends recommended the Amla oil and I do think it works. I lost all my hair during chemo. Its been pretty robust coming in - I've had to get two trims already so it doesn't poof out weirdly. The hair supplements are on pause right now as they detected primary hyperthyroidism on my last batch of blood work. Biotin can elevate the T3 or T4 numbers so I'm taking a little break from the hair supplements. I haven't not noticed any hair loss yet and have been on letrozole and the kisquali for 2 months. Keeping fingers crossed!
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Dear @cards1978 sorry to hear about your recurrence. I have also been on letrozole and Kisqali for 2 months . I have noticed any hair loss either. I just have a metallic taste in my mouth . My nutritionist recommended Metaqil mouth wash . I will give it a try.
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Thank you so much for your insights. I appreciate it.
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