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

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Comments

  • traii
    traii Member Posts: 379

    Hi Kanga

    I've been told to take Calcium/Vit D only because the first time I had the xegva injection my calcium was low so I couldn't have the next round.

    I don't take it every day to be honest and I've told my MO that. She was ok with that because my levels were in the normal range thereafter!

  • Idajakoc
    Idajakoc Member Posts: 71

    Kanga I was told not unless I have really low calcoum numbers! Cos according to one of my docs it causes nausea!

    Hope this helps!

    Ida

  • forza
    forza Member Posts: 150

    Hi Kangaroo !

    Changing their mind on the calcium ?? That's never reassuring. I've been going through all my blood results (from way before cancer) and my calcium has always been just fine. My only problem ever was low vitamin D (only just) but I'm a winterperson so try not to leave the house in summer :D

    I've been told to start taking calcium once I start the Xgeva type injections. Which I can't have yet. Wisdom teeth out next week. So it's coming closer .....Also been told I can take the calcium now if I want to but I don't need to yet. I have a script and a bottle but ach .... I take enough crap as it is these days so I'm waiting it out. I'm feeling rebellious and hoping my bloods are bad on Monday so they can't extract those wisdom teeth. I wish that was a joke.


    Hello everybody else too !!

    I'm in the rest week after 2 boxes of Kisqali. I don't even need to see the bloods on Monday , I can tell just by how I feel they'll be ok enough this time to keep going. OK , that might be complete fiction. But definitely cycle 2 was a lot easier on me than cycle 1. I'm thinking I could actually keep going on this forever without nasty side effects. Hoping the petscan after cycle 3 shows a stop to spreading nasties.

    Today I had my hair cut. Shock horror !!! I'm a bit of a hippy and had 70 cms cut off today ...... Admittedly it's still not short short but having bone mets + hair that I regularly sit on didn't quite connect. Must grow up.

    I'm getting my house organised to sell it. Am I crazy ??? Had 3 estate agents in to value it. Cleaning up to the essentials is hard work on such low energy but I'm determined to sell and go rent somewhere nice. It would also give me the money to do some bucket list trips. I'm that woman who has zero savings but owns my home. Been weighing up life expectancy to renting/ travels and in my head it seems logical. My parents are in total shock but ach ...

    How did others organise "their affairs" ? Admittedly I have no children to leave anything to , so ... I really like to *Marie Kondo* everything and not leave that mess for others. It empowers me. Again : Am I crazy ??

    Oh and be honest , always


    Thanks , love and light my lovelies ( changed my pic because of the shorter hair , short for me)




  • laine615
    laine615 Member Posts: 102

    Forza,

    You are NOT crazy my dear. You sound a lot like me. After I received my diagnosis I cut my hair to chin length(it was down to the middle of my back)and colored it red, sold my house and bought another one, and have taken a couple of trips so far.

    I'm in the process of making my funeral arrangments, have made arragements for the transition of my ownership in my practice upon my death, and have let my daughters pick which items of mine they want when I'm gone. I am now free to LIVE without worring about loose ends.

    My husband and I carry on as usual and will until my health changes.

    I'm living as I always have. I was not guaranteed tomorrow before I was diagnosed, no one is. So, I don't focus on my cancer. I still treat patients, go shopping, to the movies, out to dinner, and play with my grandchildren.

    Don't get me wrong, fear can creep in at times but for the most part I live normally but with a heightened awareness that I am mortal and will meet my end one day.

    Do what makes you happy and brings you peace. As long as you are not harming anyone do what makes your soul shine.

    Sending love and hugs your way

    Laine

  • laine615
    laine615 Member Posts: 102

    Kanga,

    Have your calcium levels dropped? This could be the reason your MO is suggesting you take it. If not, they may be worried about osteoperosis due to the medications we take.

    Are you able to email or call your MO to find out why the new recommendation?

    I was told I don't need it now but may in the future.

    I hope you get an answer soon!

    Love and hugs to you

    Laine

  • forza
    forza Member Posts: 150

    Thanks Laine ,

    I guess that's my reasoning , once everything is sorted , I can go back to "normal".

    It's the "healthy" people around me that think I've given up. This is not giving up ?? I find it quite the opposite. Those same people want me on around the world holidays or being in bed all day. For travelling one needs money first , to spend all day in bed watching tv I have absolutely no patience (never have).

    I do realise if it all goes wrong very quickly I've spent my last months cleaning Devil

    So thank you again Laine, I guess I need some input from people in the same situation.

  • laine615
    laine615 Member Posts: 102

    Forza,

    You're most welcome! Let the ones that love you know that this is what not giving up looks like for you. It could look much different for them if they were in your place but, for you...this is what it looks like.

  • rethink_breast_cancer
    rethink_breast_cancer Member Posts: 6

    ****Breastcancer.org Moderators have approved this posting. Please note that Breastcancer.org is NOT responsible for, and is not endorsing any studies.****

    My name of MJ DeCoteau and I am the executive director of Rethink Breast Cancer (www.rethinkbreastcancer.com) – a Canadian patient group dedicated to building community for young women dealing with breast cancer and providing support and resources to help them live the best quality of life.

    The Canadian government will soon be reviewing the use of Kisqali in combination with different drugs including aromatase inhibitors like letrozole to treat HR-positive, HER2-negative advanced or metastatic breast cancer. Rethink Breast Cancer will be making a submission to ensure that patient voices are represented and considered during the review process.

    Does this survey apply to you?

    We are looking for woman with HR-positive, HER2-negative advanced or metastatic breast cancer and women who have been treated with Kisqali (ribociclib) to talk about their treatment experience.

    YOU DO NOT NEED TO LIVE IN CANADA TO PARTICIPATE.

    If you are interested in talking about your experiences, we would like to ask you to complete this survey: https://www.surveymonkey.com/r/kisqalisurvey

    If you would like to speak with us directly about your cancer or treatment experience, you can contact Shawna Rich-Ginsberg at shawna@rethinkbreastcancer.com.

    MJ DeCoteau

    Founder + Executive Director

    Rethink Breast Cancer

  • kanga_roo
    kanga_roo Member Posts: 303

    Gday all,

    I've had a really stressful week, so thought I would share thinking some of you may go through this at some time in the future.

    My CA 15.3 tumour markers were elevated after my last blood tests. Initially they were around 25, then 27, then 30... 32... and the latest was 41!!!!! My oncologist sent me off for a nuclear medicine total body bone scan and a CT scan. Whilst waiting for my results I read up on what may have caused this, and decided for my own sanity, that it was probably just a blip on the radar. What I did learn is that tumour markers are not very reliable and can go up or down for many reasons.... so I kept my fingers crossed and took some temazepam to settle me down at night.

    I saw my oncologist this morning and everything is normal!! Not only normal, the cancer in my liver has reduced again! I can't begin to tell you how relieved I was! I wanted to do my happy dance!

    But, and there is always a but, my onc still thinks there may be something happening somewhere, but it is too small to show up yet. She says if it is a new lesion it must be very slow growing. With this in mind, I'm getting my bloods checked again in two months time.

    NOT TODAY CANCER!

    Love to you all

    Jackie.

  • laine615
    laine615 Member Posts: 102

    Jackie,

    I'm so happy that you received good news!! I love your NOT TODAY CANCER attitude.

    I'm doing a happy dance for you💃

    Love and hugs,

    Laine

  • forza
    forza Member Posts: 150

    Hello lovelies

    After round 2 , I'm having an extra 10 day break because my white blood cells didn't recover AGAIN. Boohoo :( I'll be going on 400 in future. And my wisdom teeth extraction has been postponed 9 days too.

    Oh Kanga , wish I had something sensible to say about that marker. Mine was 18 when I got diagnosed. It was 18 yesterday .... Totally normal. Great news on shrinking baddies.

    Having the full pet soon too which is ridiculous , with all these extra breaks I'll only have taken 2 cycles of the Kisqali.... They should have postponed that too, but no , they somehow didn't want to. Ach.

    Jennifer

  • laine615
    laine615 Member Posts: 102

    Jennifer,

    Sorry about the WBC dropping. Hopefully, 400 will treat you better.

    Best of luck to you on the wisdom tooth extraction. I had my cut out when I was 17. No fun at all. How long will you be off Kisqali in order to heal?

    Good luck on the scans as well!

    Laine

  • lisapizza
    lisapizza Member Posts: 8

    hello all,

    I’m on cycle 3 of letrozole/kisqali. I’m on 400mg as the kisqali gave me terrible nausea and diahhrea in cycle 1. I’m totally fine on 400mg. Working 40+ hours a week. My neutrophils are around 1.4 at the end of each cycle but they reckon they only stop if I went below 0.8. Liver met is unchanged. No bigger. No smaller. I’m probably getting it cut out. Surgery number 9 in 4 years. Yikes!

    Took the day off work as feeling tired and miserable. But I guess that’s to be expected.

    Sending you all best wishes


  • kanga_roo
    kanga_roo Member Posts: 303

    Hi all,

    Jennifer, sounds like you have had a rough start to the kisqali combo. Hopefully you will be able to settle into a routine soon. On my last visit to the onc I asked her if maybe we should increase my dose back up to 600. She told me more wasn’t necessarily better, so you should get all the positive benefits from 400, and some quality of life.

    Thanks to everyone’s feedback on the calcium. I started taking it again, and immediately became constipated, so I have halved the dose. I still don’t feel totally happy about it....I’ll do some more research.

    Lisa, hope your sideFX disappear. I think the first few months are the worst. I don’t know how you can work so hard! I feel so lethargic by 3pm. I see you are fairly new, have you checked out the “Australian Sisters” thread - our numbers, unfortunately, are increasing!

    Ida, I’m feeling a bit jealous of the beautiful weather you must be experiencing in Italy - it is freezing cold here atm!

    Jackie.

  • traii
    traii Member Posts: 379

    Hi ladies
    Hope you're all doing ok.

    So happy for you Kanga. Happy dancing for you

    I've just had my CT scan last week and need to wrap my head around things, even though I've been told not to over think things .. Well it's kinda hard!

    So, my scan came back with 'something' on top of both sides of lungs.
    My onc asked if I've been around sick people lately!(Well it is winter here, my DH & DS & numerous colleagues have been sick with viral infections & flus)So of course my answer was yes!
    My symptoms are mild, little cough here and there, no fever, little sniffly. Nothing out if the ordinary and started a few days before my scans! She said maybe we just scanned at the wrong time!

    She was going to put me on antibiotics and rescan in 8 weeks but thought she'd seek info from the respiratory team. Upon advice and what she believes would be best to treat this properly is to have a bronchoscopy!
    Has anyone had this procedure?

    I received a call today from the respiratory unit which asked a bunch of questions and my history again & stated that my lymphocytes were a little low which leads them to believe it may only be an infection I'm trying to fight off.

    Has anyone else had anything like this?
    Has anyone been a little short if breath with letrozole?
    He said it may be the meds I'm on.
    He said that perhaps I'm only showing mild symptoms of infection but without this procedure it's hard to know exactly! I get that but I'm shit scared!
    My heads over thinking constantly. I don't mind this combo so I think that's why I'm more scared if I need to get off. Am I being crazy?
    I know it's the nature of this disease but I'm just like kanga stated
    NOT NOW CANCER!!

    My TMs when I started was 240 in January and they were down to 46 in July and 49 a month later(which I was told is nothing to be concerned about!)

    Sorry this is so long. Need to vent & I know you ladies get all this anxiety from scans and procedures so I know I can 'talk' to you xx

  • Operahouse
    Operahouse Member Posts: 44

    Hi Traii,

    I too had a lot of symptoms, low fever, cough, out of breath, runny nose, yellow phlegm. They just come and go. My oncology team thinks it sounds like a flu, if it gets worse, they will action. Luckily I was always getting better after. No extra treatment or test has been done.

    I think because your last scan showed something new so your oncologist is concerned to find out the cause.

    Don't worry too much. I have had a lot of symptoms or side effects since on this combo. I was always anxious and thought things were going the wrong direction. Distract yourself with something you like.

    Take care ❤️



  • BrisVegas_Gal
    BrisVegas_Gal Member Posts: 21

    Hi all,


    Sorry that I don't post often but I read your posts all the time and love the information and advice. I was going to answer you Jackie about the calcium but the topics seemed to move on before I had an opportunity. But for what it's worth...I am on calcium and vit D because denosumab lowers calcium levels, I think.


    Traii, I had a very similar result to you on my last scan in June. It showed a shadow or density of uncertain cause in the right lung. My oncologist had a good look at it and seems comfortable that it is a viral related thing and I will just have my usual scan in October. In my darker moments, I feel scared and like you I'm pretty panicked. Especially as I haven't had any evidence of colds or flu and just lately I get breathless walking up stairs. I've just completed my 26th cycle and I'm worried the combo might stop working for me soon.


    But then I think I have a great oncologist who knows her stuff and I've got to trust her. She is very straightforward and wouldn't sugar coat anything I don't think. So I'm feeling optimistic for me and for you. Let's keep our fingers crossed.


    Stay well and happy everyone


    Annie
  • traii
    traii Member Posts: 379

    Thanks opera house & Annie

    You girls have helped with your stories.

    I trust my onc so much but it's so hard when your thoughts go to places they shouldn't! I know she is thorough. I guess I just wanted to run with the course of antibiotics and rescan instead of a procedure!

    That's why I come here, I know you'll all help through darker days!

    26 cycles Annie that is fantastic. It's good having oncs we can trust. I hope both our outcomes are good and we continue on this combo for a very long time.

    Every single one of us

  • lisapizza
    lisapizza Member Posts: 8

    Traii - I hope you get answers soon. Yes we all understand, to a certain extent, the hell of scanxiety.

    Not sure if a bronchoscopy is like an endoscopy but I had one of those - under “twilight” sedation - and it was totally fine. It’s like you are knocked out. Thinking about it - one is the stomach, the other is the lungs - so cant be too much different? Anyway got the results straight away. I hope you get that soon so you know where you are.

    Best wishe

  • traii
    traii Member Posts: 379

    Thanks Lisa

    I'm scheduled for Sept 10th at this stage. Semi under apparently. So just keeping busy (which is not hard not too anyway haha)

    Hope everyone's doing well x

  • forza
    forza Member Posts: 150

    hey Laine and Kanga

    The thing is , I really never felt too bad on Kisqali , just those white blood cells are still only at 0,7 after the rest week , if that means anything to anyone ?

    Not sure I'm actually having an even longer break from Kisqali with the wisdom teeth ... I think they scheduled it on day 1 of my next cycle. Well , let's hope I get put on a new cycle. Bloods and full pet is Thursday , teeth are Friday , results of the pet are Monday ?!? I mean I can't shrink this cancer by myself , I need some sort of drugs you would have thought. Admittedly its the third date for those wisdom teeth , I will really lose the plot if they move it again because of whatever blood results.

    I ALSO WANT MY LIFE BACK! I need a bit of a routine without constant unexpected extra or cancelled appointments , I finally want to go on a holiday this year , I want to move house ..... all impossible with sliding appointments that seem never-ending and always cover the same ground . Sorry/ not sorry on venting again. You know you spend too much time in hospital once you start guiding random lost people to their destination.


    Euh .... forgot who it was ! I get shortness of breath easily too since the Kisqali/Letrozole , even in rest weeks. Not a cold in sight , very much summer here and I avoid people at the best of times. I was told it's the dip in my red blood cells. Something about oxygen not getting around ??? I really need to read up on these matters to be fair. I guess what I don't know won't stress me out. At least I found this little corner.


    Thank you all for being here. Stay strong xxx



  • forza
    forza Member Posts: 150

    Oh !!!!! And don't you get annoyed when you cut over 70 cms off your hair , is that 30 inches ? And nobody mentions it , probably because THEY are still shocked over the cancer and rather not be reminded ...

    Ach


  • laine615
    laine615 Member Posts: 102

    Hey Jennifer,

    Sorry to hear your counts are still low. I haven't had that problem yet but, many people do. I'm betting your WBC, ANC, and RBC will tolerate the 400mg much better and you'll be smooth sailing very soon. I can imagine it's incredibly frustrating to not have a steady routine yet.

    Honestly, I don't know how you're keeping yourself sane. It's a testament to your internal fortitude and grace. Kudos to you!!

    About the hair..when I cut mine(12 inches) my daughter had a fit. She told me she hated it and it made me look old(I'm 46). I was shocked by her reaction at first. Then, I realized she was having a hard time processing my cancer diagnosis and was lashing out at the cancer, not at me. I'd have preferred it if she said nothing at all🥴

    I'm glad all of us have found this corner too. We can vent, laugh, scream, cry, and cheer together.

    Sending positive and healing energy your way.

    Laine


  • forza
    forza Member Posts: 150

    Ach Laine ..... I suppose people are scared to say the wrong thing so they say nothing ?? I'm 46 too , none of us look 20 anymore. Your daughter will discover this herself one day. I'm not a fan of short haircuts on women myself , still shoulder length me , clinging onto that.

    I'm not sane at all, trust me. Just had a lot of practise in faking it after my ms diagnosis 20 years ago.

    Finding it frustrating that I can't feel it myself that my blood counts are fine or not. This time I'm really hoping they're ok. Won't be able to deal with it if they were to put another new date for those frigging wisdom teeth forward. Summer has been and gone. Hopefully once they're out and I'm on that 400 , I can go to monthly appointments only and actually go on holiday somewhere.

    Yes , coffee and positive vibes for everyone


  • laine615
    laine615 Member Posts: 102

    Jennifer,

    Come to the US on holiday, lots of places still have summer weather here.

    Let us know whow you do with the teeth extraction. Praying it goes smoothly for you.

  • forza
    forza Member Posts: 150

    Actually Rhinebeck , sheep and wool festival was on my bucket list way before they threw that bucket at me. I'd need locals to help me out though, logistically mainly.

    Is there a "couch sharing for stage 4" thread ? I don't live all that far from Bruges and would happily swap a spare room with someone who's always wanted to come here ... but is paying for hotels or finding the local planning a bit too much. Ach.

    I did have a weird phone conversation yesterday when they phoned me to confirm my appointment at the pet centre. I thought it was the vet appointment for my kittens today so we argued over the date for ages until I realised "pet scan" not "fluffy pets". Honestly. "The pet centre" What a name. Medicating


  • laine615
    laine615 Member Posts: 102

    The Pet Centre is hilarious!!! I just imagine how that call went, 🤣

    If there's not a couch sharing thread you should start it!! I've seen rooms for $17 on air bnb. I don't know if they are that cheap in NY or not. Give it a look and see.

    And LOL at throwing the bucket at you. Kick it back to them and tell them you plan on being around for awhile.


  • maaaki
    maaaki Member Posts: 105

    Hello ladies. I just finished second week of 1 cycle of ribociclib. I am taking it with faslodex and zometa. Doing ok, I managed doing sports and all my activities as well. My neutrophils had dropped to 1.4 but MO said it is still ok to take full dose for the last week. Since yesterday I feel like sinus infection, runny nose and sinus headache but no fever. Did anyone experienced it? I will not see my MO for a week. I also plan to add COC protocol. Had consult with London clinic. So far I am on metformin, I should add doxycyclin and statin. Is anyone doing it together with ribociclib? Thanks. Maki

  • laine615
    laine615 Member Posts: 102

    Maki,

    Glad to hear you're doing ok. I have experienced the runny nose, runny eyes or dry eyes, and an occasional sinus headache since starting Kisqali/Femara combo. My MO says it is to be expected from Kisqali. I've started taking 5mg of Claritin twice a daily and it's really helping.

    I can't speak to the COC protocol as I have no experience with it. Let us know how you fair with it.

    Wishing you the very best.

    Laine

  • forza
    forza Member Posts: 150

    Stupid little update , whilst I'm a bit lucid.

    I had an allergic reaction to the fluids for the petscan. So 3 different anti-whatever products pumped through me. Great !!! Still , they only noticed when I came out the scanner so I still get my results talk on Monday. I looked purple after my previous petscan too but this time was a lot worse. Having to prove you can swallow for hours on end is very annoying !!!

    And my wisdom teeth have left the building Happy , well actually I have them in a container ... my initial thoughts : why are there 7 teeth in here ? Well 1 clearly fought back. I'm on cold coffee , ice cream and tonic water now. Should be good for my waistline. I'm also on industrial strength antibiotics because of the still not that fabulous white cell count. They now even do allergy screening before giving me new meds ??? Seriously , a quiet normal life is all I want.

    Maki : Not had runny noses or anything since the Kisqali but I only had 2 cycles on 600 and started cycle 3 on 400 today. Early on I did have a sore throat and some weird mucus after brushing my teeth ?! That stopped after a couple of weeks. And to be honest could have been any of the hormone treatments. Hard to say when you start 3 new meds in 1 day. From what I've experienced myself you need to be over 0,8 after the restweek to continue at the same dosage so you're doing great so far. And no , had to google that COC protocol , never heard of it before. Good luck with it !


    Laine : I've never done an air bnb ..... I have stayed over with people I'd only met online though ... Seeing I'm supposed to rest for a few days and my mouth really hurts I will investigate this further !!!


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