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

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Comments

  • forza
    forza Member Posts: 150

    Very promising !!! Thank you

  • BrisVegas_Gal
    BrisVegas_Gal Member Posts: 21

    Hi Nopink,

    My hair slowly thinned out for a few months then stopped but was so much thinner and became curly. It’s been dead straight all my life - except for fuzzy perms when big hair in the 80s was fashionable. I’ve been on this combo for 3 and a half years now and hair is still like that. And like Forza my nails are beyond sad.

    We continue to have good news about Covid here in Aus but take good care of yourselves elsewhere

    Annie xx

  • maaaki
    maaaki Member Posts: 105

    Hi, thanks for words of encouragements, I will start the SBRT to the vertebra soon. The two new lesions are very small and may be they will re-irradiate the old one as well. Than I may be will follow with verzenio, it is stronger CDK4-6 inhibitor and continous. I went also for Foundation One liquid biopsy, will see what comes out of it. I wish you all looong run on kisqali...it was so gentle treatment for me

  • nopink2019
    nopink2019 Member Posts: 384

    If you are also on Kisqali with Faslodex, look at active topics. I'm trying to get a conversation for those of us on Kisqali and fluvestrant.

  • missmonty
    missmonty Member Posts: 71

    Hello Everyone,

    I just wanted to post quickly to let the group know that after 28 cycles, with one little lung blip in April, that was resolved with SBRT, I am still stable with no radiological evidence of metastatic disease. I’m still taking the full dosage, and overall feeling good. I complained to my MO of some minor aches and pains that seemed new, and over and above the usual Letrozole joint pain, and his response was that this was not unusual for someone my age..50! Lol.

    I know I always appreciate seeing posts of longevity of treatments and this combo has been a good one for me. Hope it gives others hope.

    Now we just need to get this Covid situation under control. I’ve got things to do, places to go and people to see. 😊

    Hope everyone has a great weekend.

    Anna

  • nopink2019
    nopink2019 Member Posts: 384

    MissMonty-is 28 cycles 28 months? That's great news.

  • tangandchris
    tangandchris Member Posts: 934

    NoPink- where is the topic you mentioned?

    I have recently been diagnosed at the end of October with recurrence on the mediastinal lymph nodes, lung nodules, and abdominal lymph nodes.

    MO wanted to start me on Ibrance with Faslodex. Insurance will not cover Ibrance so he thinks we will try Ribociclib.

    To make things more complicated we are in quarantine as dh tested positive for covid. My test was negative, but I have all the symptoms.

    I'm worried about SE's of course. But many of you seem to be doing well.

    Take care!

  • missmonty
    missmonty Member Posts: 71

    Hi NoPink,

    Yes, 28(ish) months. It’s hard to keep track.😊

    Tangandchris, sorry to hear about Covid affecting your family. Hope you don’t get it. And sorry about your progression and the insurance issues. That’s always frustrating. I don’t think there is too much of a difference between Kisqali and Ibrance, so either would likely be a good option. (In my non medical degree opinion...;)) I don’t have any experience with Faslodex. I guessing thatyou’ve been taking preventive Letrozole since your initial diagnosis, which is why Faslodex is being considered. Good luck with the drug coverage.

    Anna



  • nopink2019
    nopink2019 Member Posts: 384

    tangandchris- I started a new topic in Stage 4 re:Kisqali & Fasolodex a month ago, but got no responses.

  • forza
    forza Member Posts: 150

    just checking in , with nothing to say ... thinking of you al


    Be well xx

  • AngelaM8019
    AngelaM8019 Member Posts: 1

    I am new to this just diagnosed and a little scared- I am 44 years old and had no idea I would one day be here. Just want others opinions on how this combo of drugs has effected you.

    Thanks

  • missmonty
    missmonty Member Posts: 71

    Hi Angela,

    Sorry that you find yourself here. I’m sure you are experiencing a lot of emotions and being scared is totally expected. The first few months will be the hardest, but hopefully things will level off for you. I was diagnosed in 2017 at 47 years old, and have been on this combo since September 2018. It has been a very good combination for me. I currently don’t have any measurable metastatic disease, and overall I feel pretty good. We all respond differently to drugs, but you’ll see many members part of this topic and on the boards overall who are living their lives and thriving despite a Stage IV diagnosis.

    Some side effects you may notice could be joint pain, insomnia, hot flashes and hair thinning. The severity will vary person to person. The side effects haven’t been too bad for me.

    If you have any questions you’ll find that the members here are very helpful. I’m also happy to answer questions, if I can.

    Take care,

    Anna

  • traii
    traii Member Posts: 379

    Hi Angela

    Sorry you're here but Glad you have found us😊 We all have been where you are now, scared of the unknown. Just like Miss Monty said the first few months will be the hardest adapting to the new normal but you will get there and we are here for you.

    The side effects haven't been too bad for me, hair has thinned and joint pain at times.

    I still live a busy lifestyle. Diagnosed at 40 years old at Stage 4. I'm on box 24 from memory on 3 tabs a night plus letrozole. I prefer taking my meds at night not long before I go to bed...this worked better for me and you will find what time is right for you.

    Feel free to ask questions and vent away.

    Tracey

  • missmonty
    missmonty Member Posts: 71

    Hi Everyone,

    I was looking up some information in preparation for an appointment with my MO and came across this article. Encouraging results so thought I would share.

    https://www.novartis.com/news/media-releases/novartis-kisqali-demonstrates-nearly-five-years-median-overall-survival-metastatic-breast-cancer

    Anna

  • tangandchris
    tangandchris Member Posts: 934

    This is wonderful and exciting news!!

  • forza
    forza Member Posts: 150

    Hello miss monty , Also came across that whilst trying to find out if Novartis had any news on combining with Covid vaccines. Sounds great !

    Not 1 doctor here has any idea IF , when or where they’d vaccinate me. This is progress. Yes really. From a simple NO , they’ve gone to NO IDEA.

    After 10 months of lockdown , I’d like to see less covid infections and deaths , not more . We are not an island 😞 And people just keep flying around the world.

  • forza
    forza Member Posts: 150

    oh , question.

    If anybody on our combo gets a covid vaccine , could you please post about it ???


    thanks

  • missmonty
    missmonty Member Posts: 71

    Hi Forza,

    I spoke with my MO on Friday and he told me that (most) cancer patients will not be de-prioritized from getting the vaccine. He told me that as long as I am still stable and on the same treatment I should get the vaccine as soon as it is available to me. He guesses here in Canada that will be sometime in late spring or early summer. He did not think I would get priority treatment because of the cancer. Too bad.

    My province is back to a state of emergency so it’s pretty frustrating. People just aren’t staying home. I want to be able to enjoy my life while I am still feeling good!

    Hope you start getting some more definitive answers.

    Anna

  • forza
    forza Member Posts: 150

    oh thanks Anna , sounds promising.
    I don’t want priority , I just really want one this year.

    I'm so frustrated that Belgium is completely in chaos over this. How hard can it be to just get on with it. There's thousands of vaccines in freezers instead of arms.
    Daily in the press : one 100 year old getting vaccinated who in the following interview then keeps saying she definitely wasn't vaccinated. I give up

    Oncology hasn't a clue !!! Not even hospital staff is priority here. I'm having scanxiety : need to take several trains to get scans next Monday whilst this British covid strain is out of control here. Need to be sober for the liver ultrasound and then quickly drink 2 liters of water for the bone scan 😞😞 Requires several toilet visits I'd rather not have in hospital 😳😳 The labs also not looking forward to.

    Repeating to myself : some people are so much worse off than me , stop complaining

    ^ Jennifer


  • nopink2019
    nopink2019 Member Posts: 384

    MissMonty - You made my day with the update from SABCS about Kisqali OS! I KNOW they are just stats but when commercials mention OS, I can't help but count out the months. Especially with the isolation of this last year, we all feel like time that was short anyway, has been stolen.

    Re: vaccine, my MO said take it. (I'm on Kisqali & Fasolodex, not letrozole. I started a thread for that, but there don't seem to be but 2 of us on this combo, so I read this one)

  • kkcita
    kkcita Member Posts: 24

    I'm on my 11th cycle of Kisqali 600 mg / letrozole. I received the Pfizer COVID vaccine, first dose on Jan 2. Second dose is coming up this Saturday. I got the vaccine from the hospital where I am a provider on staff. My MO said it was fine to get the vaccine, and is encouraging her patients to get it when it is offered to them. My blood counts are little low but I guess they are not worried about it for now. I am excited to be vaccinated. It doesn't really change much for the precautions I will be taking so I can protect others in my family, but I feel some relief for my own personal safety and that something is happening!

    Hi Angela - I am also 44 years old. diagnosed with bone mets only February 2020. I was having "back pain" for most of 2019, did a lot of physical therapy. Then hurt my knee and got my diagnosis. This medication combo has been pretty easy for me. I do feel joint aches every day, which are better when I move around more. I was also experiencing a lot of swelling in my legs and feet lately. I just started eating low carb / keto 9 days ago, and I dropped 10 pounds in water weight and my ankles and feet are skinny again. and I feel so much less achy. So, I will trying my best to avoid sugars and refined carbs because I feel so much better physically.

  • tangandchris
    tangandchris Member Posts: 934

    I am on Kisqali and Faslodex, but there aren't many here it seems to be on this combo.

    I am finishing my 2nd cycle and my blood work is showing high liver enzymes. Could this be from the Kisqali?

  • kanga_roo
    kanga_roo Member Posts: 302

    Hi everyone!

    Checking in to let you know this combo is still working for me. Had a bone scan and MRI last week, and all clear:)

    The main side effect for me is lethargy. I feel so tired, so my Onc has said to take a 2 week break instead of one week. I have done this on two other occasions, and it has really revitalised me, so I’m looking forward to that!

    Hope you are all safe and well!

    Cheers

    Jackie

  • missmonty
    missmonty Member Posts: 71

    Kanga_Roo....glad to hear the combo is continuing to be effective. I agree with the breaks. I actually had to take a 4 week break prior to radiation last year, and there was a verynoticeable difference in my energy levels.

    Tangandchris....high liver enzymes have not been an issue for me on Kisqali, but they were from time to time on Xeloda.

  • traii
    traii Member Posts: 379

    Jackie great to hear combo still working for you as it is for me. Just had scans and TMs at 31 normally 38ish so super happy. No bony disease evedent just lungs still showing some scaring which onc thinking its the Ribo but not changed for over a year. So we're happy! Box #26 on Monday.

    Enjoy your extra week break..might bring that up next month! So tired lately. Thought it may be a combo of being on the go all the time and too much jetskiing on the lake and beach this summer! But my off week I want my bed even more!

    Hope everyones keeping well.

  • forza
    forza Member Posts: 150

    thanks kkcita , great news about your Pfizer vaccine !!! I’m very happy for you.

    Kangaroo hello !! Me too had the 3 monthly bone scan which showed stable again (always that same stubborn bone met) , liver ultrasound was clear.

    Now I’m trying to change hospitals because I moved house and the journey is too long.

    This new hospital / oncologist wants to change my entire treatment plan. I never had a lumpectomy or anything else. It was all cancelled because of the mets. This different hospital wants to do the lumpectomy after all ?!?! At the same time they want to take out my ovaries ?!?! And they want to burn my stubborn bone met with radiotherapy ?!?! Are they kidding me ??????
    I don’t think so. She said it would give a better prognosis long term. Since when ? No , not happy . I’m not doing it.


    hi everybody , I’m always a mess update I think I’m on box 21 Kisqali on 400


    ^jennifer


  • forza
    forza Member Posts: 150

    Traiii

    Jet skiing ?? Spot the Australians 😊

  • traii
    traii Member Posts: 379

    Great news on the scans too Forza👌

    Wow, new hospital new treatment plan! Maybe taking out the ovaries you'd stop Zoladex(i did that so 1 less needle😁) I wouldnt want them stopping Kisqali though when its working well for you! Zapping a few of my many bone mets(more so ones giving me grief at time of mets dx and ones that werent giving me grief- it bet having a steel rod placed in femur or a hip replacement that i didnt need that they wanted me to do JUST INCASE!!! Um no we can save thar for further down the track if need be!)

    I guess you have some thinking to do lovely!

    Yes Aussies and their jetskiis haha I'm not letting my Stage 4 dx's stop me while I still can still enjoy it!😉

  • forza
    forza Member Posts: 150

    not doing it 😒 last time they sedated me they biopsied the wrong hip . I don’t trust any of them .

  • traii
    traii Member Posts: 379

    oh no Forza, you poor thing for having that happen to you no wonder you sound so against surgery!

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