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

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Comments

  • traii
    traii Member Posts: 379

    Hi Msm2019

    Kids do keep us going. Mine does so much sports and at 9 has a better social life than me haha

    Awesome about your results on chemo.

    I had a mastectomy back when I was first DX in 2012. So I really can't answer benefits at Stage IV but I would definetely consider it if your Inc suggests it as I've read on these forums in the past some surgeons don't do a mastectomy at this stage. Sounds like your onc wants to give it all you got which is great hun.


  • laine615
    laine615 Member Posts: 102

    Msm2019 - Welcome to this thread. Glad you are tolerating Kisqali so well. I haven't had a mastectomy so I can't advise you on that. I'm taking Kisqali/Letrozole, Lupron and Xgeva. I think I'm on my 7th cycle. So far it has been very manageable. I'm 46 with 4 daughters and a husband. I still work and lead a normal life for the most part. I hope this combo works for you for many years.

    Traii - That is wonderful news!! So very happy for you. Enjoy your wine!!

    Hugs to all

    Laine

  • BrisVegas_Gal
    BrisVegas_Gal Member Posts: 21

    That’s great news Traii. I’m sorry it’s been such a tough time for you. Life is such a roller coaster for us. It’s great to have the support and empathy of this group. I’m also in an advanced breast cancer support group and it is wonderful to connect with others going through this.

    Msm2019 over time cancer becomes your new normal and hopefully you will be able settle into a family routine where your husband will be able to accept it. After 2&1/2 years now my husband still struggles when he really thinks deeply about it because it’s changed completely all our hopes and dreams for the future but he has had to continue with his career and get on with things. Oh it’s so tough and I’m really feeling for you. Take care - we are all with you in spirit

    I hope you are all going ok

    Love to you all

    Annie


  • Msm2019
    Msm2019 Member Posts: 3

    thank you ladies for your encouragement and support!

    It’s just gives me hope to know you ladies are doing so great!


  • laureninphx
    laureninphx Member Posts: 138

    Hello all-

    I start Kisqali and get my second injection of Faslodex on Monday. I’ve read every post in this thread to get prepared. :) Thank you all for sharing your experiences.

    I haven’t decided when to take it but I think I’ll try it at night first. I usually eat dinner around 4pm so I’ll have to have a bedtime snack but hopefully will sleep through any side effects.

    I don’t have the gene testing done yet so I don’t know what the next line will be, but hoping to stay on this combo for many years. I was onTamoxifen for a year then Anastrozole for six before it came back. I have several neck nodes, a node near my esophagus, and indeterminate spots in my lung hilum and T12.

    How many rounds should I expect to do before the nodes shrink? Will they shrink? I really hope so. I understand stopping the spread is most important but I’d like to be NED one day soon.

    Anyway, I’ll be an official member of this thread on Monday. 😋 Looking forward you getting to know you and going on the craptastic journey together.

    Lauren

  • laine615
    laine615 Member Posts: 102

    Lauren, you made me laugh with the "craptastic" comment. It's so accurate! I'm happy to take the craptastic journey with you.🥴

    I had a node under my arm that was affected. At the 3 month mark it was reduced by 50% and at 6 months it had resolved.

    I also take my meds at night. I find I'm less fatigued doing it this way. I also eat Stoneyfield Greek Yogurt right after I take it and I haven't had any mouth sores so far. I don't know if it's the yogurt but it's worth a try.

    I hope this combo is easy on you for many years.

    Keep us posted

    Laine


  • laureninphx
    laureninphx Member Posts: 138

    Hmmm yogurt. Good idea!

    Thanks for the timeline and congrats on the great results. Happy

  • Operahouse
    Operahouse Member Posts: 44

    Hi all,

    I just finished my 10th cycle and had my CT scan report. Stable with some shrinkage. I'm on 200mg. My oncologist is happy with the results.

  • laine615
    laine615 Member Posts: 102

    That's great news, Oeprahouse. Congratulations 🎉 🎉🎉

  • laureninphx
    laureninphx Member Posts: 138

    Woohoo!

  • laureninphx
    laureninphx Member Posts: 138

    So the EKG I had last week was abnormal. Biatrial enlargement and QT interval over by about 20 points. She let me start the Kisqali anyway but is sending me to a cardiologist and wants to repeat the EKG in two weeks when she will decide if I can stay on it. I really really want to stay on K.

    Has anyone’s heart been affected? Has this situation happened to anyone? It’s only been one day but no symptoms all so far.

  • laine615
    laine615 Member Posts: 102

    Lauren,

    I don't know of anyone that this has happened to. I had an EKG before I started and one 2 weeks later. That's standard protocol for K. I hope you get to stay on it.

    Are you taking any other medication? Maybe that's what's causing it. Did you have any symptoms before the EKG?

    Keep us posted

  • laureninphx
    laureninphx Member Posts: 138

    Hi Laine,

    Nope, no symptoms, so hopefully it's mild enough to not take me off. I'm happy to know the second test is standard procedure, that makes me more hopeful. 

    I'm also on Faslodex, but just had one dose at time of EKG. I think (hope) all will be fine. :)

    Thanks for the info!

    Lauren

  • Madalina
    Madalina Member Posts: 1

    Hello everyone!

    I've been reading your posts for more than 6 months and I'm writing to you for my mum who has breast mets in her right lung and spine. She is 68.

    The story started 12 years ago when she had masectomy of her left breast and some lymph nodes, followed by chemo, radiation therapy and 5 years treatment with Femara. 6 months ago she had pleurisy( liquid in her right lung) and further investigations revealed that the breast cancer metastasized to the right lung and spine. The treatment she is taking is Letrozol, Ribociclib and Zerlinda. She started with 3 pills of ribociclib, but she experienced extreme fatigue, so her oncologist adjusted her dose to 2 pills.

    After 6 cycles she had another CTscan which showed that the 4 micronodules she had in her pleura disappeared, but she has 2 new nodules of 3.5 and 4.5 mm in her right lung. Her pleurisy is almost gone. But there are new places in her spine which are affected. In her first scan the affected vertebrae were T4, T5, T11, T12,while in the second all the above plus T9 and her pelvis.

    I am so confused. I don't know what to do. Should I ask for a second opinion, I mean should I go with the 2 cd-s to another doctor? I was expecting the tumors to shrink or disappear!!

    We are seeing the oncologist next week.

    Hope to hear good news from all of you! I admire your courage and I pray for all of you!😘😘

    Madalina

  • laine615
    laine615 Member Posts: 102

    Madalina,

    First, you are a very special person for helping your mom through this.

    A second opinion is never a bad idea.

    Has your MO confirmed the information you received from the CT? Are you able to email the clinic to gain any insight about what next steps might be? I know it is so very hard to wait for answers.

    If Kisqali is not the right medication for her, and she requires a change, there are still many options out there that could work for her. Try not to be discouraged.

    You and your mom will be in my prayers.

    Hugs to you,

    Laine



  • Operahouse
    Operahouse Member Posts: 44

    Hi Lauren,

    I had palpitation a couple of months ago. It lasted for a week. No test has been done. It could be kisqali related. I never have any heart problem.

  • laureninphx
    laureninphx Member Posts: 138

    Thanks Operahouse. Good to know they didn’t take you off and you’re okay. I think if it’s the same and not any worse she’ll let me stay on it.

  • laureninphx
    laureninphx Member Posts: 138

    One more question: have you experienced any hair loss or thinning on Kisqali? My hair is so thin already I’m afraid even a little thinning will require drastic measures like a buzz cut or going bald. Frankly, I’d be okay with bald again. So much easier!

  • traii
    traii Member Posts: 379

    hi Lauren

    I had palpitations. Still do at times

    I had about 3 or 4 EKGs as standard when i first started K and never had any since.

    My already thin hair thinned out heaps. I started a hair shampoo/ conditioner combo approved by my MO and it's growing back! Lots of new hair everywhere 😁

  • laureninphx
    laureninphx Member Posts: 138

    Thanks Traii. How cool that it’s growing back!

  • laine615
    laine615 Member Posts: 102

    Lauren,

    How's the Kisqali treating up?

  • laureninphx
    laureninphx Member Posts: 138

    Hi Laine,

    Thank you so much for asking! So far so good. Maybe a little sleepier than normal, but nothing major. I’m also super unmotivated to work, so I have nothing to do to keep me awake so maybe that’s it more than the drugs. :) I’m looking forward to finishing this first round to have a better idea of long term effects, but happy for now

    Lauren

  • laine615
    laine615 Member Posts: 102

    Lauren,

    So glad it's not been to hard for you so far. I think it getting dark so early is making a lot of people sleepy. Add our meds to that and you've got one big bunch of tired people.

    Glad you're doing ok with it.

    Laine

  • kanga_roo
    kanga_roo Member Posts: 303

    Just checking in with you all, what a diverse group we have and I love catching up with all the posts. To those new to the group, take heart from the good results most of us are getting on this combo.

    I saw my oncologist today, and my tumour markers have dropped again, so I don't need scans for another 3 months, which means I will have had a 6 month break!

    On the topic of palpitations, I experienced that when I changed my diet to keto (I have a thread if anyone is interested), anyway, I found increasing the potassium in my diet sorted it out. I use “lite salt" which is 50/50 potassium and sodium - bananas would probably do the job too.

    Also, I have a bit of a theory on the hair thing. For a couple of months my chemist put me on a generic product called “letroz” it was during that time my hair thinned dramatically and I had a few other side FX. I am back on the femara by Novartis and no side FX or hair thinning!

    I continue on the 2 tabs of kisqali, and although I feel a bit tired, life is fairly normal.

    Gentle hugs to you all!

    Jackie


  • kanga_roo
    kanga_roo Member Posts: 303

    Just checking in with you all, what a diverse group we have and I love catching up with all the posts. To those new to the group, take heart from the good results most of us are getting on this combo.

    I saw my oncologist today, and my tumour markers have dropped again, so I don't need scans for another 3 months, which means I will have had a 6 month break!

    On the topic of palpitations, I experienced that when I changed my diet to keto (I have a thread if anyone is interested), anyway, I found increasing the potassium in my diet sorted it out. I use “lite salt" which is 50/50 potassium and sodium - bananas would probably do the job too.

    Also, I have a bit of a theory on the hair thing. For a couple of months my chemist put me on a generic product called “letroz” it was during that time my hair thinned dramatically and I had a few other side FX. I am back on the femara by Novartis and no side FX or hair thinning!

    I continue on the 2 tabs of kisqali, and although I feel a bit tired, life is fairly normal.

    Gentle hugs to you all!

    Jackie


  • laine615
    laine615 Member Posts: 102

    Jackie, wonderful news your makers have dropped! Glad you're living a normal life as well.

    I hope this continues for you for many years.

  • forza
    forza Member Posts: 150

    just wanted to say , I’m here reading and 🤞🤞 for us all .

    On holiday still and the hair falling out is causing me real stress now. Apologised to housekeeping several times and braiding it because it really does get everywhere ... Luckily I had so much hair , strangers really can’t tell still but 😱 At this rate I won’t have any left by Christmas ...

    Are we allowed to drink on this combo ?? I normally never drink but had beer to bourbon on this holiday. Couldn’t find anything about it in the leaflet. Oh well 😆 Day 1 of my “rest week” now. Hoping to “survive” the 2 flights with coughing sneezing yucky people all around and then back for labs and cycle 5 ?

    Ah and I also had some heart palpitations (mainly at night ?) so might request an ekg myself. They lost my first one and for the second one I was only 2 weeks in. So , how can they refuse me :)


    Love from Norway



  • Lolis
    Lolis Member Posts: 294

    Hi Forza,

    I have continued having my weekend drinks during this treatment and no issues so far.

    on the heart question, K causes shorter QT (I believe it is called) interval and that's the reason the EGG is standard of care at the beginning of the treatment. if the symptoms continue mention it to your MO.

    Hope the palpitations have subsided.

    Hugs.

  • forza
    forza Member Posts: 150

    Ello !! Back from a wonderful holiday and still around so the booze clearly didn’t kill me 🤦🏻♀️ Back to my usual sobriety now.

    I’ve always had a bit of an arrhythmia. These days because of those drugs I’m more paranoid about just about anything. I could swear I’ve broken out in a million freckles all over my body. I guess I’ve just never noticed them before ?!

    My worst side effect : these dry hands are just raw and sore ☹️ And my nails are peeling off. Haven’t done dishes or cleaning in 2 weeks but they haven’t recovered. I guess cream ??? Not a girly girl so I’m out of my depth about these things. Just got a tube of hand cream at the airport.

    My fun fact. I got masks for the plane by my doctor. On embarking I said to the stewardess , I’m not Michael Jackson I’m on chemo pills so should wear this on board. They promptly put me in business class 😄😄 and I got the business class treatment 👍👍

    Will try add pic of Nordkapp


    Xxxx love image

  • laureninphx
    laureninphx Member Posts: 138

    Ooooh, I'll have to try the mask thing on my December flight! Thanks for the heads up. :)

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