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

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Comments

  • forza
    forza Member Posts: 150

    hi Hamer

    I’ve been on Kisqali for 2 years now. The first 3 months everything shrunk massively (most mets even disappeared) and I’ve been stable ever since. Had some problems with blood counts early on but since I’ve been reduced to 400 , I scrape through. Also my kidneys play up regularly in my bloods. I’m on 3 monthly scans now . Thanks to covid my bloods and “a talk” have also gone from monthly to 3 monthly.

    Ah what I wanted to say , that 24 month median of how long you can get out of this drug has been greatly extended. I had some mails and a phone call with Novartis regarding “the vaccine” and they sent me a link with the latest results , yep can’t find it now 🤦🏻♀️ You’re going to have to take my word for it. So much for my big announcement. This combo is very promising


    hi all !!!! xx



  • Hamer1l
    Hamer1l Member Posts: 36

    Hi Forza

    Thank you very much for you reply. That's exactly what I needed to hear today as having one of those days where my head is spinning with questions and what ifs!!!

    I am so pleased this drug has worked well for you and you are now stable. It gives me great hope.

    I had my 4th cycle of tablets issued yesterday along with my Denosaumaub injection. Bloods were really good they said so I am to stay on full dose. Just waiting to hear what my marker figure was on this blood test.

    Do you keep an eye on markers in between scans?

    Thanks for the much needed boost.

    X

  • forza
    forza Member Posts: 150

    Aha that’s great. I’m always impressed by people who stay on full dose.
    My lazy bone marrow just can’t keep up making new blood cells.
    My markers were normal from day 1 so they can’t use it for anything . (Yet) . Don’t think it’s ever been higher than 20. Every time they do my bloods they keep ticking that box though. Apparently that happens with some people.

    Yes I was also very happy during and after that call with Novartis. It was a big leap even , obviously more people have been taking it for longer so they are gathering more data. I’m very optimistic once this fails , there’s something new developed.

    :)


  • traii
    traii Member Posts: 379

    hi everyone,

    My CT scan shows stable. 2 yrs 3 months I started this combo and remain on 600mg. I asked to see if we could reduce it but my bloods have always been good we remain on 600mg.

    Blood tests moved to every 2 months meaning my appt with onc will be every 8 weeks now. Xgeva still remains at every 2 months.

    Hamer, as Forza mentioned while some peoples tumor markers don't mean anything as theur markers dont change or havent been high from day one; my markers were in the high 200s and are now lingering around 32-38 mark. Within the first 3 months my markers reduced dramatically. I too hope you do well with this combo. Ithank my lucky stars that I'm still on this after 2 years. Stats mean nothing to me, we are our own stats.

    Kanga has been on this combo longer than I have and is a wealth of knowledge to this site

    Fingers crossed to everyone that this combo gets as many MANY years as first line TX

    hugs to you all

  • Hamer1l
    Hamer1l Member Posts: 36

    Hi Traii

    Thanks for your reply Re the markers. When I was admitted in March my markers were around 1200 (pretty scary). Then on blood test in May they were 694, then on bloods last week they were 592.

    I know you shouldn't focus on markers too much but I was relieved they had gone down again.

    I am very happy on this combo and fingers crossed I remain on it. I'm so glad everyone on here has seen great results.

    Forza I think I have found the article you were referring to with up to date data from Novartis, its fantastic news. It gives me more hope.

    Thanks all

    X

  • nola70115
    nola70115 Member Posts: 61

    What markers are they testing for? Is it part of CBC or a separate test? The only ones I see on my history are CEA and CA 15-3.

  • Hamer1l
    Hamer1l Member Posts: 36

    Hi Nola

    The markers my nurse updates me on are CA 15-3.

    They have said these are only used as an indication. I asked my nurse to update me on these in between scans so I could see if things were goi g in the right direction but I appreciate scans are needed as well for the full picture.

    X

  • forza
    forza Member Posts: 150

    great news Traii about the stable scans !!! And yes I agree Kanga is a fountain of knowledge here.

    I have an appointment with my new oncology Thursday (since I moved house Im now finally also moved completely medically) They want bloods but I’m mid-cycle so it’s bound to be rubbish. Ach. So I don’t have the 3 monthly scans booked yet.

    The infamous ca15-3 . Easy for me to say it means nothing because mine were always normal. I’d highly likely freak out if they were high.


    Question Question . My neighbour tried to make my hands look nice with gel nails. I hate my ugly cracked short nails. But the gel/varnish just won’t stay on , no matter what she tried. Now I checked , it’s not allowed when you’re on chemo ????? Anybody experience with this ?

    Jenn

  • traii
    traii Member Posts: 379

    I have SNS done on my nails over my own nails and shellac(gel) on toes Forza and I've never had a problem 🤷♀️

    I don't think its an issue if you dont have your 3 month scan right on 3 months, especially that you've been stable throughout...mine are pushed to 4 months. Hope you like your new onc Forza 😊

  • forza
    forza Member Posts: 150

    thanks !

    I’m not really a girly girl so have no idea about these things. My nails were really bothering me. And now with the best of intentions it’s looking even worse. To be honest everything has been bothering me the last couple of days. I’m thinking I might crack every day now. Just had an argument with the bank. I hate banks ! They are all sweetness if they can lend you money , but if you simply want your address changed it’s 3 phone calls , a Twitter row , a chat via app and result : an appointment booked … in another city … next week. Ach !!!
    Sorry , I’m just soooo tired

    x

  • sunnidays
    sunnidays Member Posts: 166

    Hi, I have a question about the side effects. I have a few minor ones but I seemed to have developed very dry skin not all over just patches has anyone had this and do the side effect get worse over time? or do they settle down and that is it.

  • kanga_roo
    kanga_roo Member Posts: 303

    hi sunnidays!

    I can't see whether u r on an AI like letrozole or similar, which seems to be the one that causes itchy skin etc because it drops our hormones very low.

    I'm going to say this with humour, but most of us develop ways to reduce the skin problems. I “dab" by bum rather than wipe it, extend time between washing hair to reduce scalp itchies, lavish moisturiser all over my body after showering. Water and detergents dry out your skin, so look for gentle solutions.

    When my skin gets really itchy, I take a Telfast tablet which works really well for me. I also stick to a low carb diet… sugar seems to trigger the itchies and other side FX for me.

    My side FX are not constant… one week it will be itchies, another week minor nausea. I also get random aches an pains that come and go.

    Make note of all the side FX you experience and chat with your Onc.. sometimes they come up with solution that you may not have thought of. I'm sure others on the thread will add their idea

  • forza
    forza Member Posts: 150

    Kanga : Lol at dabbing. Yes ive been dabbing , then switched to baby wet wipes , now dabbing with baby wet wipes.

    I never washed my hair a lot before this cancer so that’s nothing I need adjusting

    creams , I can’t get on with them . No patience ! But Sunnidays : dry and / or itchy skin seems such a common side effect nobody even talks about it anymore but rest assured , we all have it come and go. They hit us very hard with hormone blockers. Moisturising ! I don’t do what I preach but I believe unscented creams are probably a good idea.

    No updates from me , skipping scans. Bloods showing higher cholesterol but nothing to worry about. Good , because I’m sticking to my cake a day rule 😄

    great holidays all

  • kanga_roo
    kanga_roo Member Posts: 303

    Got the results back from my latest CT and bone scans.

    ALL GOOD <sighs with relief>

    My TMs dropped from 42 back down to 30 - only blip was my cholesterol was up slightly, but given I live on a keto diet, not surprising (still in the OK zone). White and red blood cell counts all good

    My liver cancer can still be seen on the scans, but holding steady at 8mm.

    Onc will test my bloods again in 3mths, but no more scans now till next year! 💃🏻💃🏻💃🏻💃🏻

    Hope you are all keeping well!

    Cheers,

    Jackie.


  • ncyogi
    ncyogi Member Posts: 45

    Jackie!! Love the good news! I was just about to bump this thread to see how everyone is doing (as I am just getting started) so you read my mind. 1 week in on Kisqali & all is well. I’m also on zolodex & faslodex but that thread is not very active so I have been keeping my eye on my fellow K sisters here. Love all of the info, positive vibes & especially STABILITY. ❤️❤️❤️

  • nola70115
    nola70115 Member Posts: 61

    Good News Jackie!


    I’m at MDA right now waiting to get scans following my first 3 months on this cocktail. Fingers crossed it’s working

  • ncyogi
    ncyogi Member Posts: 45

    Nola, just sent up a prayer for you. Please let us know! I’m in the process of getting a 2nd opinion with Dr Tripathy now…

    Best wishes for good news!! ❤️

  • nola70115
    nola70115 Member Posts: 61

    No change in the mass in my armpit, but the lesions in my liver have shrunk by 50%. I think that’s a win, right

  • kanga_roo
    kanga_roo Member Posts: 303

    Nola! I’m doing a happy dance for you💃🏻💃🏻💃🏻

    50% reduction in liver mass is amazing! No progress in the armpit is good news too! Looks like kisqali is working its magic on you! That really is a fantastic result after only 3 months!!

    Cheers,

    Jackie

  • ncyogi
    ncyogi Member Posts: 45

    That’s definitely a win, Nola! Especially after 3 months. How are your side effects?

    Here’s to continued success!

  • Hamer1l
    Hamer1l Member Posts: 36

    Hi Jackie

    Congratulations on your good news! It's fantastic you have been on kisqali for so long and things are still stable. ❤️

    I had my 2nd ct scan last week and results are due this coming Tuesday, I'm very nervous but it gives me hope when I read good news like yours.

    I'm feeling really well so I'm praying this this is a positive sign.

    I will update on Tuesday.

    X

  • ncyogi
    ncyogi Member Posts: 45

    Thinking of you Hamer & praying for good news!

  • Hamer1l
    Hamer1l Member Posts: 36

    Thank you.

    Thankfully it was good news!

    Really pleased that there has been further shrinkage in my liver and also some shrinkage in the bones, the bones are starting to heal too.

    Lymph nodes were also clear again and no new activity detected.

    I'm very very relieved!!!!

  • ncyogi
    ncyogi Member Posts: 45

    Hamer…. Hooray!!!!!! I love hearing good news from my fellow K sisters. 🙏🏼🙏🏼🙏🏼 Sleep well tonight.

  • kanga_roo
    kanga_roo Member Posts: 303

    Hamer, wonderful news!! 💕

    Now relax a little! You know that stuff is working it’s magic on you 😀

    💃🏻💃🏻💃🏻💃🏻💃🏻


  • Marytherese
    Marytherese Member Posts: 2

    I’m

    I’m on letrazole + ribociclib since January 2019 and I’ve just started to get patches of white skin on my hands. Does anyone know about or experienced this condition .

  • kanga_roo
    kanga_roo Member Posts: 303

    Hi Marytherese,

    I haven’t, but I’m thinking it may have something to do with the letrozole reducing our hormones.. they may be like age spots that usually show up on hands first. Check with your doctor….. another one to add to our long list of side FX

  • Marytherese
    Marytherese Member Posts: 2

    Thanks for your reply Kanga Roo


  • forza
    forza Member Posts: 150

    happy for all the good results here

    *waving

  • traii
    traii Member Posts: 379

    yes Forza mine were great box 30 something 👌😊 every 2 months xgeva and bloods and chat to my onco!

    Hope you're doing well too x

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