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Ribociclib/Kisqali with Letrozole - Any one on this combo?

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Comments

  • kanga_roo
    kanga_roo Member Posts: 302

    The supplement dilemma can be truly stressful, and what you can and can’t take will depend on the type of cancer and the treatment you are on.

    Some people spend $1000s per year on supps that may be doing more harm than good.

    I was very scared when I was first diagnosed, and stopped taking all supps until I understood their interactions more fully. Every time I add a sup, I check with my oncologist, whom I respect highly. So here is what I have learnt, and been told is OK for ME to take:

    Vit D3 = improves uptake of calcium

    Vit E

    Multi vitamin

    Magnesium citrate = helps with cramps and constipation

    Exercise = I try for 20 minutes per day, even a slow walk is better than nothing

    Water, water, and more water

    NOT Ok:

    Calcium (can cause hypercalcaemia) = feeds cancer

    I also went on the Keto diet (see my Keto thread for more info) to reduce inflammation and allergies.

    I think the aches and pains are a result of the femara, as it reduces the hormones that keep us supple. Like Ida, I find stretching helps.

    Because I have liver Mets, I am aware that everything I eat or drink has to go through that organ, so I try to reduce the stress on it as much as possible. I like a glass of red wine occasionally, and try to limit pain killers where possible.

    Sending gentle hugs to you all!

    Jackie.

  • forza
    forza Member Posts: 150

    I can only speak for myself on the calcium/vit D (Steovit) . I got the prescription from the oncologist , not randomly taking supplements at all.

    Having bone mets , they will give me monthly Prolia or Xgeva ..... my understanding is that the Xgeva takes all the calcium from your blood and sucks it into your bones ??? Sorry , I sound like a horror movie. So the supp is necessary I guess. Also my mother had early onset osteoporosis so the odd bone density scans were already on my never-ending list of scans before this cancer mess.

    Hey Kangaroo : I could't go Keto . I live on carbs and coffee ^^ and I'm 95% vegetarian . Eaten some chicken on week 1 of Kisqali , determined to get more proteins in but haven't eaten meat again since :( I can see how keto could work well for people but I can't face all the meat and no potatoes ... Ach , we're all different. I'll try again with some chicken or fish soon. Will definitely check out your link , any tips are good ThumbsUp



  • Dragonfly46
    Dragonfly46 Member Posts: 13

    Hi Kanga I can't do keto either as my oncologist has told me to eat a plant-based diet eg the rainbow diet and it suits me as I am not much of a meat eater.

  • forza
    forza Member Posts: 150

    Hi Dragonfly

    I just saw you are in the UK. I thought Kisqali wasn't approved in the UK because of cost. I've lived in England for quite a few years and never got past the GP for anything. I'm impressed.


  • Dragonfly46
    Dragonfly46 Member Posts: 13

    Yes Kisqali was approved in the UK over a year ago in cases of advanced or metastasised breast cancer.

  • forza
    forza Member Posts: 150

    Hey all ,

    just found a Kisqali pill on the table. Yep , I managed to take 2 instead of 3 .......

    I knew the schedule would go all wrong :( Feeling really really stupid now :(

    I guess I'll just take 3 again tomorrow morning.


    Also bad tummy ache again , not sure that Zoladex agrees with me. Are their people here that just get their ovaries removed instead ??

    I have a phobia for operations but I guess seeing I agreed to get 4 'difficult' wisdom teeth taken out in August , those tiny ovaries is a lot easier. ? Ach :(

  • laine615
    laine615 Member Posts: 102

    Forza you made me laugh!! I fell asleep last night and missed my entire dose of Kisqali.

    I haven't had my ovaries out but I get Lupron and not Zoladex.

    Hope your tummy gets better soon!

  • traii
    traii Member Posts: 379

    forza/hope I thought I was bad I set my alarm in case I sleep while watching tv and miss my tablets! You girls are funny.

    I was on zoladex at initial DX only because I wanted more kids.

    But Stage IV DX I was like take the ovaries!!

    Luckily I did because with this bitch of a beast I had micro mets in 1 ovary!!

    If you can do wisdom teeth, you will ace this op.

    I was in & out same day. 4 key hole holes and pain was minimal. I hate painkillers anyway so panadol was enough for me.



  • forza
    forza Member Posts: 150

    thank you so much for that. Hug !!!

    don't really have anyone to vent about this. Either they faint or start crying (whilst I'm the sick one) or they go on and on about how eating this that or the other will cure me .

    Going to ask about those ovaries on my next Kisqali cycle consult thingy

  • maaaki
    maaaki Member Posts: 105

    Hellou ladies, I will be joining you soon. I had two metastases in 2017. One in liver, was resected succesfully and the liver is still clean as of July Mri. And one in TH 10 vertebra, that was stable on exemestan for two years and reactivated in March 2019. I started faslodex and had cyberknife on vertebra to zapp it. And was approved Kisqali to add to faslodex and zometa. My question please is. How do you travel on this drug, I live quite active life with good quality and now I am afraid of side effects. Is it manageable?

    I had my ovaries removed together with liver resection. All was done laparoscopically. Not problem at all, I was physically fit in week or two. Emotionally -it was different, since I did not have liver biopsy before

    Thank you

  • traii
    traii Member Posts: 379

    oh Forza don't we love how everyone starts talking food and how taking this and that will cure us!!! 😏😏

    Vent away here! We all hear you & here for venting👍

    Maaaki, I find this combo very manageable.

    I take meds at night 600mg kisqali & 1 tablet of letrozole as I find during the day I was tired and it didn't work with me working and running a household keeping active with my son & all his sports activities he does after school & weekends etc etc

    I sleep off my side effects and wake up ready for the day 😊 I get little aches here and there but tolerable and not constant.

    When are you starting?

  • laine615
    laine615 Member Posts: 102

    Maaaki,

    I'm on my 5th cycle of kisqali and letrozole. I find it to be very manageable so far. I am able to work and have an active social life.

    Like Traii, I take mine in the evening before bed.

    I've had some blurred/double vision if I wake up at night, feel foggy if I don't get a full 9 hours of sleep, and a few aches and pains that come and go. That's about it.

    Forza, vent as much as you need to, whenever you need to, for as long as you need to. We are here for you.

  • Lolis
    Lolis Member Posts: 294

    Forza,

    I have contemplating removing the ovaries as well but I think I am too young to do that, just 38.

    Although we are in menopause because of Zoladex the ovaries are still offering some benefits to us. I personally am a bit worried with the effects the removal would have on my brain and heart. Talk to your doctor and see what they say. Then decide what makes more sense foe you.

    Lolis

  • forza
    forza Member Posts: 150

    Slovakia : ha Bratislava dix points Singing I have no particular side effects on the Kisqali. I get all groggy and tired from the Letrozole / Zoladex though. However this might be subjective and not truth ?! I had a 2 week Kisqali break and these side-effects didn't improve so that's why I blame the hormones. Just my opinion, only on cycle 2.

    All the rest , sorry , names ....... I asked to take my tablets before bed and they kept saying no , gotta do it in the morning. I will insist next time. Would fit into my lifestyle better. I'm an insomniac and not a breakfast person so it needs 3 alarms to remind me to take a couple of silly pills.

    Lolis : effects on brain and heart ???? Do I need to google ? I'm 46. Never had kids so those ovaries have caused me 35 years of grief for nothing.

    On the food : if it only were that easy. Same on bucket lists : no I don't want to jump out of a perfectly functioning airplane or swim with dolphins Medicating

    Sorry about the emojis , they are a bit much Happy


  • Idajakoc
    Idajakoc Member Posts: 71

    Hello ladies!

    Forza you cracked me up with the fainting and crying thing! As for the removing the ovaries I am with lola on this consult with a couple of doctors cos they might give other problems, as for the benefits I cant say anything!

    I was told to take the pills just in the morning and no discution (they treat me like their own child tbh 😅)

    Maaaaki I have a super busy life too: two jobs, traveling to italy every month, yoga, swiming. But you can do it. I mean you are going to have to do everything around the pills and what is left you after them but you can do it! Just give yourself time to adjust to the normal you!

    Oh as for the try this try that you have no idea how much I get during the day! It is annoying!

    Hugs

    Ida



  • traii
    traii Member Posts: 379

    I guess reading our stories each MO is different in their own ways & set in their own ways. And whatever works well for us as an individual.

    My MO pushed me to take ovaries out. I'm only 41, was 40 at time of removal😏 I pushed to take zoladex again but didn't win 😉

    Kisqali I was told to do morning's but could trial nights so she wasn't really worried when I took them so long as I took them! Nights worked for me so she was happy for me to continue at night.

    I guess what I'm trying to say is everyone's different, every MO is different, each country may have their own ways of doing things.

    So long as our miracle pills are doing what they are meant to do whatever time we may be taking them 😊

    Hope everyone is Enjoying the weekend girls 🥰

  • kanga_roo
    kanga_roo Member Posts: 302

    Hi all,

    Reading the comments about when to take your pills and thought I’d just tell you how I do it (with full consent from my onc)

    I was initially on a kisqali trial and found taking the combo in the morning made me feel nauseas or very tired. I asked the trial onc about this, and he told me it didn’t matter what time of day I took it as long as it was around the same time every day and taken after food.

    I take mine after I have finished eating for the day, usually around 7pm and usually don’t eat anything until around 10am, which gives me a 15hr fast without trying hard.

    I have installed a pill reminder app on my phone, which syncs with my Apple Watch just in case I forget.

    Jackie

  • BrisVegas_Gal
    BrisVegas_Gal Member Posts: 21

    Hi All, it's been a while since I posted but I always read and keep up with what you're all up to. I love the comments about all the well meaning advice and life saving tips we get. You've got to keep your sense of humour otherwise we would be overwhelmed.

    I take ribociclib and letrozole in the mornings but the nausea seems to be getting worse shortly after, even though I've recently reduced the dose from 600 to 400. So I'm going to try what some of you do and take it in the evenings. I keep forgetting to check with my oncologist but I can't see why she would object. The pharmacist at my cancer clinic said all the ribociclib research was focused on morning doses and therefore he was reticent about me changing but from what has been said here I don't think that it is an issue.

    I've just returned from an amazing holiday in Alaska (from Australia) and now I'm planning our next big one to Italy in another year. Got to have something to look forward to.

    Take care everyone - Much lov and healing energy from me to all of you

    Annie

  • maaaki
    maaaki Member Posts: 105

    Hi all, thanks so much for the valuable inputs on time of eating the pills. I should start next week, after the blood tests and ekg. It is great to hear that you are traveling and being active on this drug. I am runner, nordic walking instructor and I dont feel like changing by habits soon. Sending healing vibes to all of us. Maki

    PS Did you read the ASCO reports that Kisqali actually had positiv impact on survival 😊

    https://ascopubs.org/doi/10.1200/JCO.2018.78.9909

    https://www.drugdevelopment-technology.com/news/novartis-kisqali-monaleesa-3-data/

  • moderators
    moderators Posts: 8,614

    Hi Everyone, and sorry to jump in, however we're looking for insights/experiences from women who are pre-menopausal and are taking Kisqali. We really appreciate any information you have to share on how this treatment has affected you, specifically.

    Thank you!

  • laine615
    laine615 Member Posts: 102

    Maaki,

    Let us know how you do on Kisqali. I hope it treats you well!!

    I did see the new information on the drug. It is very promising.

  • laine615
    laine615 Member Posts: 102

    Hi Mods,

    I am premenopausal and taking Kisqali.

    I am currently on my 5th cycle and 6 months out from a De Novo bone only dx.

    I have experienced NO nausea, vomiting, diarrhea, mouth sores, or rash.

    I have experienced very mild fatigue and blurred vision. The lowest my ANC has fallen is 2.98 but usually stay around 3.2

    My first scans revealed evidence of healing on the bone met and 50% reduction to 1 affected node.

    To date Kisqali has been incredibly kind to me and, should it be God's will, I pray it continues to be.

    Hope this was helpful.

  • moderators
    moderators Posts: 8,614

    Thank you, MRelesag for sharing. VERY helpful. We are sending you positive thoughts, and so happy it is working!

    Medicating

  • Idajakoc
    Idajakoc Member Posts: 71

    Hello mods!

    I am on cycle 22 of kisqali. I am pre too! Kisqali has been a God sent for me. I had just one met and it is gone now. Also the breast mass is reduced more then in half.

    I am going to be honest on the sideffects. I do feel like twice my age, nausea, fatigue, joint pain, muscle pain, headache, water rings on my vision are my everyday problems.

    But I can say that I am living a normal life and it does let me enjoy it. I think that is the most important

    I hope this is helpful!

    Hugs

    Ida


  • moderators
    moderators Posts: 8,614

    Yes, very! Thank you so much for your feedback Idajakoc!!

  • Lolis
    Lolis Member Posts: 294

    Hi Mods,

    I am pre-menopausal but taking Zoladex which has put me in menopause.

    First 3-4 months were a bit rough with nausea, bone aches and fatigue. After that the effects subsided and just some bone aches and hair loss. I just started cycle 21.

    Lolis

  • maaaki
    maaaki Member Posts: 105

    I guess I would count as pre-menopausal, too. I had ovariectomy two years ago at age 43. I will start ribo next week, so I will write my experiences afterwards

  • moderators
    moderators Posts: 8,614

    Thank you, All!

  • forza
    forza Member Posts: 150

    pre here, I'm 46. Hence that monthly Zoladex implant.

    I'm like someone up there ^^ a de novo victim , so ageing boobs and stroppy hair still here.

    No side effects from the Kisqali , cycle 2 , only tummy aches comparable to menstruation cramps so I'm blaming that Zoladex.

    And fatigue and nerve pains but I also have MS so difficult to judge ...

    Can't wait for my first pet scan check , I 'm imagining mets everywhere so would be good to see I'm overthinking it .



  • kanga_roo
    kanga_roo Member Posts: 302

    Hi all, saw my Onc yesterday, who told me I should be taking calcium (which contradicts what she told me before) - anyway would be interested to know what others have been told about this.

    Jackie

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