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

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Comments

  • purplespirit
    purplespirit Member Posts: 4

    Hi All,

    Many thanks for all your messages and lovely posts on the forum. It gives a lot of encouragement to see this forum for ALL of you who are doing a great job fighting this beast yet living your roles as mothers, wives, sisters, friends, aunts etc. At least till recently when I discovered this forum, I would keep searching those ‘scary’ Dr Google stats!

    I’m reaching out for my lovely mum of 58y, diagnosed with de novo metastatic breast cancer. She is HR+, HER2-, Grade 1 and ki67 of 15%. She’s been on this combo for 4 months, and I would love to hear any opinions and experiences on:

    1. What happens in case of shrinkage? Do they continue the treatment till there is eventually a progression?

    2. Do you know of people who went NED from this trial? I know that Mets can’t be cured but has this trial led to long term remission as the medicine is fairly new to our part of the world (Asia)

    3. Does anyone know typically how long does hormonal therapy work? Our oncologist said it could be 2y but would like to hear any thoughts

    4. Any food or natural supplements that help this, is reading about a ketone diet, and one with high wheatgrass, curcumin, reasonable to do our best?

    Sending good vibes and strength to you all lovely ladies out there

    Cheers,

    Mumma’s boy who’s a 32y old man!



  • kanga_roo
    kanga_roo Member Posts: 302

    Hi Purplespirit, I don’t know about NED, but shrinkage and no progression seems to be the norm. My understanding is that if you reach NED you would probably stop the Kisqali but continue with the Letrozole.

    As indicated by this recent report, Novartis had up to 35% of their research group continuing with Kisqali after the study end point. In a subgroup analysis, Kisqali and an aromatase inhibitor showed a 30.0% decreased risk of death compared to an aromatase inhibitor alone. Many women have had success just taking letrozole. Apparently you can take it up to 10 years so adding Kisqali to it is the new “gold standard”

    https://www.biospace.com/article/asco-novartis-kisqali-combo-dazzles-in-breast-cancer/

    I felt terrible on this combo to start with. My sugar levels skyrocketed, I was lethargic and put on weight and generally felt unwell. I went on Keto at the beginning of this year, and feel better, sugar has normalised and have lost the weight I put on. I started a thread called Keto on this site if you are looking to explore this further.

    Your lovely mum has become one of our sisters living with stage 1V. The big change will be things like having regular scans for the rest of her life, working with sideFX of treatments, setting her own challenges.

    The good news is that she has begun a “first-line” treatment. If this fails her, there are so many more treatments out there. She is so lucky to have a daughter to help her through.

    I think most of us would agree, that the worst part is the horror is the initial diagnosis. Once your mum comes to terms with that, and gains an understanding of her situation, she will be able to take back control of her life and feel better (so will you😊)

    Give her a gentle hug from all of us,

    Jackie

  • Operahouse
    Operahouse Member Posts: 44

    hi all,

    I am starting cycle 7. My tumor marker (ca153) has been decreasing from 41,40,41,31to 29. Just wondering what your tumor marker is. After how many cycles it will be within the normal range (under 25). thanks.

  • laine615
    laine615 Member Posts: 102

    Hi Operahouse,

    My Ca15-3 was 14 before I started treatment jumped to 19 after starting treatment and was at 11 on June 25th appointment. This test is very unreliable. Some people with breast cancer don't have elevated numbers at all. Some people with no cancer have elevated numbers for no reason. Is your MO worried about it being at 29? I just started my 4th cycle.

  • Operahouse
    Operahouse Member Posts: 44

    Hi hope,

    My onc looks at the trend, not the number. The number is unreliable, but the trend shows if I'm responding to the combo.

    Nevertheless, hope I will be in the normal range soon.

  • Applepie09
    Applepie09 Member Posts: 7

    Just stopping by to say that mom's scans proved regression of lymphadenopaty 😊she continues with this combo. I feel so relieved.

    Thank you all and all the best.

  • Applepie09
    Applepie09 Member Posts: 7

    Just stopping by to say that mom's scans proved regression of lymphadenopaty 😊she continues with this combo. I feel so relieved.

    Thank you all and all the best.

  • purplespirit
    purplespirit Member Posts: 4

    Thank you so much for your input Kanga_Roo, sorry for the late reply! I see you're also on the same treatment, and to your point on Keto, I will have a look.

    Wish you good health and good vibes!

  • lisapizza
    lisapizza Member Posts: 8

    Thank you Traii Lolis and Cranky Koala. In fact thank you everyone for posting your stories.

    Sorry for my late response. I just kind of shut down for a bit as I’m sure you all understand. It was just too hard.

    I am on my first cycle now. I was fine until about Day 14. Now am having lots of tummy issues. So have been experimenting with the drugs, to work out the best timings and so forth to manage my side effects. Came home from work early today as feeling so tired.

    Like I learnt here, I take my drugs at night. My BC nurse also suggested monitoring what I eat as some patients find some foods exacerbate the side effects.

    Thanks to everyone’s stories I know to hang in there for a few more cycles. Hopefully this will settle down. I did want to lose some weight. But not like this.



  • Idajakoc
    Idajakoc Member Posts: 71

    Hello ladies!

    Thank you very much for the support. I am happy that I can talk to you girls! Thank you for being open to talk to me If I ever get the chance to have kids.

    I did my 7th scan today. I dont have results yet. I was supposed to hear about the genetics test too but I didnt. My blood test was pretty good!

    I have been off the site a lot but I had a pretty good month, I got to see my brother after 10 years of being away. So I enjoyed my time with him.

    I am glad for some good resulst you all got.

    Keep up ladies! Hugs to everyone!



  • Daniel86
    Daniel86 Member Posts: 207

    Hey Ida

    I am sorry about the whole kid thing. My wife is still struggling with it too. We have an 8 yo boy but we were ready for baby #2 just when cancer hit us.

    Anyway, yesterday we went for Leslie's check up (we go to one of the Milan hospitals) and the oncologist was very optimistic saying there are more and more women with MBC that are adopting in Italy and she encouraged to pursue that route. Its not an easy task or one that many would go after but I guess the idea of having that as an option made her feel better.

  • forza
    forza Member Posts: 150

    Hi all !

    I'm new here , so this post could go horribly wrong , I mean technically. Jumping right in Nerdy

    In Belgium , Europe.

    Was dx out of nowhere with breast + bone mets. Finished my first cycle of Kisqali/Letrozole/Zoladex last week but my blood cells have not recovered so I have an extra week off before I start cycle 2. Also had a creatinine "scare" after 2 weeks but that came back to normal. I had no particular side effects but wow , felt like crap during that week off. Very tired , dry in places I didn't know you could be dry , dizzy. I still eat more than most so that's OK. Not sure about the hair , I have soooo much of it that I haven't noticed.

    I feel a bit like a fraud. No breast operations planned and lots of hair. Very strange tbh. I also have had ms for 20 years but still walk so double fraud ??? Ach ... We come in all shapes ?

    Hoping to become part of this little community.

    Reading this thread slowly , I'm on page 10.

    Jennifer

  • kanga_roo
    kanga_roo Member Posts: 302

    Hi Jennifer,

    Hope the combo works well for you! I think most of us start off on the higher dose, and if sideFX are high, reduced back to 400. Many of the sideFX kick in after several months, but are manageable. Your onc will monitor you closely for several months until things stabilise.

    For me, the “dry” thing is ongoing and I try to drink more water to compensate. If your urine is dark, or your lips are dry, you probably need to drink a bit more.

    Welcome to our little group!

    Jackie

  • forza
    forza Member Posts: 150

    Hey Kangaroo !

    Thanks , your progress on the combo is definitely encouraging. On page 16 now ;) I hope nothing bad happened to you since Nerdy

    Already learnt more here than my oncology team explained to me. Admittedly I've been ignoring it all a bit. My planned breast surgery was cancelled before I even managed to buy hospital pyjamas. And now I'm in a fake menopauze ? Yep , so just checked out a bit and just take what they give me when I have to without asking questions. The questions are brewing up now.

    I agree with some people : what's the deal with these tumor markers ? I guess mine were normal before my first mammogram , so not been checked since. I just located those results and they were definitely normal. The amount of times doctors told me "good news" and I still ended up in this small group.

    I was so happy for no side effects on the 3 weeks of Kisqali , that the bad rest week came as a big surprise. And the low blood cells confirm I felt like crap. From what I understand after an extra week off , I'm going back on 600 and if my blood cells give up again , I'm going on 400.

    Oh , and I drink soooooo much that my urine might as well be tap water ....

    My next big appointment is the dentist next week Bawling I think I need wisdom teeth pulling and the all clear on cavities before they start me on Xgeva .... Joy

  • Idajakoc
    Idajakoc Member Posts: 71

    Daniel I hope you find a way that you both agree! I feel I still got time to make a decision cos I am just 26 ( maybe I am wrong) but still it is good to know about all the options and have all the infromation.

    Jeniffer I am glad you found us. Sorry you have to be here tho. I am just like you, no markers and bone mets but hey ir happens. I hope this medication works on you and you keep living your life as normaly as possible. Little tip dont think too much over it and take it day by day!

    Hugs!

  • forza
    forza Member Posts: 150

    thanks Ida , I'm glad I found this little corner of the internet too.

    I'm doing alright though. Just rescued 2 stray kittens who were really ill , so giving all the antibiotics , anti inflammatories , anti fleas etcetera etcetera is keeping me very busy.

    Luckily I'm in a country where they throw drugs and tests at you , so I don't have to battle for access to it. Must be a lot of stress for people who're not allowed to get these treatments for free.


  • Idajakoc
    Idajakoc Member Posts: 71

    Hahahah thank you for thinkinng for me 😆 I fly to italy every month for this medication and I am so greatfull for Italy and their sens of humanity!

    Please be careful of the infections from your kittens. Oh and your are such a nice soul to take care of them in these days where you need to be taken care of!

    Hugs!

  • Lchen
    Lchen Member Posts: 1

    Hi everyone,

    Sorry this isn't about the topic directly, but I wanted to ask what your experiences with Kisqali (Ribociclib) is and if you're enrolled in the Kisqali care program? What are your experiences with that program (helpful/not helpful)?

    I'm in Canada and did some digging around but there doesn't seem to be as much info on this program as in the US... I don't know if the program is the same or different. The descriptions of the program are still pretty vague to be honest. I feel like it's good to just enroll since it's a free program but I just want to be sure I know how much help I can get from this program. Thank you!

  • laine615
    laine615 Member Posts: 102

    Hi Lchen,

    I don't have any information about the Kisqali Cares Program. The description on the website is very vague as you stated. What type of help are you looking for? The US site says they don't give medical advice. I'm not really sure what they do. I just didn't want your question to go unanswered.

    It can't hurt to give it a try. Please let us know if it is helpful.


  • Idajakoc
    Idajakoc Member Posts: 71

    Hello ladies!

    Lchen I have never heard of a care program. But please if you could let us know what are its benefits!

    And I have great news. My scan result came. It is everything ok and stable. I am super happy and I am closing on the 22nd cycle and doing juust fine!

    Lots of hugs for you all!

    Ida


  • forza
    forza Member Posts: 150

    Peep !

    The good news , yes , the extra week helped in getting a blood count well enough to start cycle 2 on 600 again tomorrow.

    The bad news (caused by my own negligence though) : I need all 4 wisdom teeth extracted before I'm put on Xgeva for those pesky bones .... All my phobias together at once. Aaaargh! It's scheduled in the first week of cycle 3 apparently. So pretending it's not happening.

    Well done Ida on your good news. Ach , those poor kittens need a home , it was hard work without decent blood cells but it can only get better from now on. I'm covered in scratches :) A cat quarantine in the middle of your house is not to be recommended. My resident cat has decided she doesn't mind rolling around in disinfectant. Also doesn't help my current dry skin. I've gone off topic. Been a long hospital day. With the heatwave (even Belgium gets 40C 100F , honest) I didn't scoot back home between appointments so waited on location.

    Good night all

  • Idajakoc
    Idajakoc Member Posts: 71

    I am so glad for you good news forza! As for the skin I can recommend you dry argan oil. It has helped me a lot especially on winter time where my skin cracks.

    As per your wisdom teeth as a dentist I would say take them out and get over it once and for all.

    And as per Xgeva I can only wish you good luck. Cos I cannt help cos I am not on it!

    And for the cats good luck with them! And your residant cat sounds a lot like mine!

    Hugs!



  • Operahouse
    Operahouse Member Posts: 44

    my experience about xgeva. After first shot, a very bad back pain attacked me next day, to the point I went for a massage. The good news is that's all I had. After the first one, no negative impact so far.

  • forza
    forza Member Posts: 150

    A dentist ???? NOOOO ! Phobias : anaesthetic , teeth , hospitals . Anyways. My wisdom teeth needed coming out years and years and years ago. Can't believe they won in the end.

    Hi Operahouse : ah yes , I've been warned already by the oncology pharmacist , not sure that was her official title. I have bone mets , and also arthritis in my spine so I'm thinking : bring it on ..... Just saw you have liver lung mets , OMG ! But I assumed the Xgeva was only for bone mets. I really should read up on this stuff.

    In theory I should take Steovit daily too , even more calcium , ugh . Food supplements in theory. Not sure what time of day is best for this , I'll try tonight. They seem determined to upset my stomach.




  • Operahouse
    Operahouse Member Posts: 44

    hi forza,

    Xgeva is used for protection in my case. Yes, they recommend you to take calcium and v D with xgeva in Australia. Good luck.

  • forza
    forza Member Posts: 150

    Thanks Operahouse , good vibes your way too . Comforting they do the same thing world wide ...

    I've opted for lots of frappuccinnos instead of the Steovit. I'm advised but not yet TOLD to take it so I'm being stubborn , my excuse is that stupid heatwave ;)


  • Dragonfly46
    Dragonfly46 Member Posts: 13

    Hi I am on my 7th cycle of Ribociclib and Anastrozole and have had very few problems so far but recently I have been getting muscle pain in my hip and back. Has anyone else had this?

  • Idajakoc
    Idajakoc Member Posts: 71

    Forza I hate when there is work done on me too so I understand!

    Dragonfly I had them in the last two months, I figured yoga streaching helps me alot, magnesium and ibuprophen. All these combined helped me sleep. I hope they work for you too!

    Am I the only one that is told not to take supplements, only vit D? Nothing else!

    Hugs!



  • Dragonfly46
    Dragonfly46 Member Posts: 13

    I was also told to take calcium and vit D

  • traii
    traii Member Posts: 379

    I was told to take vit c & vit d because I'm on xgeva so helps calcium levels (hardly take them and calcium levels been low only after 1st injection.

    For pain to take paracetamol as it's gentler than taking ibrufen

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