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

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Comments

  • laine615
    laine615 Member Posts: 102

    Jennifer,

    OUCH but YAY!! So glad those teeth are gone and you are one step closer to a normal routine. I bet you're going to do great on the 400mg.

    Get lots of rest and be kind to yourself.

    All other Kisqali girls and boys,

    How are you doing?

    Laine

  • forza
    forza Member Posts: 150

    Hello my fellow fighters! If you are offered this combo but unsure : go for it !!!

    My petscan results , 3 months after start on this combo , first line for me because I'm a de novo girl. I wasn't feeling happy in myself because only managed 2 cycles in this timeframe (blood cell count).

    And yes !!!!! It definitely definitely shrunk all those bad boys SillyHeart Bone mets tiny. Some lymph nodes are stubborn but smaller. There was some talk about the lump in my breast being inactive ??? Don't understand that , but whatever. Now taking 400 with a smile and feeling a lot lighter . Phew . OK , I can live with these hot flushes if they help THAT much !

    Because of my allergic reaction to the petscan dyes (likely the iodine) they are not going to repeat this constantly. Next big appointment in 3 months will only involve the nuclear bone scan (? I'm sure it has a proper name) and ultrasounds.

    Hugs to all xxxxx


  • Idajakoc
    Idajakoc Member Posts: 71

    Hello Ladies!

    How are you doing? I read some happy results and some not so happy ones I hope everything settles down!

    Jackie weather was great I took a week off work went to the beach but my head decided to have exploding pain every single day! After that I said I might go to the mountins for another week. And two hours after I got there more (then 10 hours far from the hospital) I had high fever! I freaked out ladieeeees! First time happening!

    Ended up not taking the pills for some days even tho my blood tests were good! Then some other wierd stuff happened with my body! I am still recovering but I got back to the pills!

    I have a scan on 10-th it was supposed to be on october but according to my nurse the changed something with the study!

    So pretty much this is it!

    Ps: I think I need a bucket list. I mean like crazy stuff! 😂🙈

  • laine615
    laine615 Member Posts: 102

    Ida,

    Sorry you had that scare. Glad everything is settling down for you.

    Forza,

    YAY!! That's fantastic news!! Hope your mouth is feeling good as well. I think you're going to do very well on 400mg.

    Hope everyone else is doing good as well!

    Love and hugs to all

    Laine

  • forza
    forza Member Posts: 150

    oh Ida !!! ((())

  • Mandy62
    Mandy62 Member Posts: 34

    Hi Girls

    I don't write much but your posts keep me going.

    I am on 200 mg due to skin problems I had scans yesterday after being on Kisqali and letrozole for 22 months and my results are stable.

    The only real problem I have is my eyesight it has deteriorated and is blurry, I can put up with that.

    Your support is amazing

    Mandy

  • Lolis
    Lolis Member Posts: 294

    Ida - sorry to hear about your scare and glad it has passed. Wish you a non-eventful scan!!!

    Forza - that s great. I am sure the next scans would be the same as this one.

    Mandy - the eye issue seems to be a common one with the letrozole. Are you going to see someone?

    I am officially off the trial. Last month I had the close off appointment. I am still on the combo until things change, hopefully not any time soon as I want some time to enjoy my new breasts!!!

    Hugs to all.


  • laine615
    laine615 Member Posts: 102

    Mandy...FANTASTIC NEWS!! So happy for you. The eyesight problem is an issue for me as well. I take my pills at night and about an hour after I get sort of double vision but sort of not. It's weird.

    Lolis...Enjoy those new breast to the fullest!

    Hope everyone is having a wonderful weekend!

    Love and hugs

    Laine

  • lilahope777
    lilahope777 Member Posts: 27

    My Mom starts Ribociclib/Kisqali next week (already on Letrozole) and I'm nervous. She had a really tough time with 12 weekly Taxol infusions (if there was a side effect, she had it.....and hospitalized twice for neutropenic fever). After Taxol, she was put on Letrozole and given time to heal. However, the breast tumor which had shrunk during Taxol started growing rapidly again! She just had a mastectomy last week and is healing well. I will read through all of the earlier posts, but if anyone has any advice to share, I'd love to hear it. Many thanks!

  • BrisVegas_Gal
    BrisVegas_Gal Member Posts: 21

    hi all

    Thank you for you supportive, informative and sometimes amusing posts - I love reading them when I have time. I’ll have lots of time soon as the side effects of this combo have beaten me and I’m going to retire at the end of this year especially after reading a post a while ago from Kanga (I think - apologies if not) about the importance of prioritising our time with family. AndI’m 59 years old so it’s time.

    On another topic, though....I didn’t realise that letrozole caused blurry eyes. I’ve had this symptom. Is there anything that can be done for that?

    Hope you are all keeping well and happy

    Annie

  • BrisVegas_Gal
    BrisVegas_Gal Member Posts: 21

    Also lilahope777

    Your mum is very lucky to have such a concerned and caring daughter. I’ve been on this combo for over 2 years and the side effects aren’t too bad compared to other chemo treatments as far as I’ve been told. This is the only treatment I’ve been on.

    For me the worst side effects have been fatigue, nausea and a bit of diarrhoea. Nausea and diarrhoea are treated relatively easy for me, so it’s the fatigue that I find most difficult. But I have a day sleep when I can and my social life is a bit slower. And I have recently reduced the dose from 600 to 400mgs Kisquali with an improvement in the fatigue. As I said above I am ready to finish working and that’s because I’m so tired these days.

    My blood values have always been just on the boarder of normal and the only other effect I’ve had is changes in my hair which has thinned out and gone curly where it was dead straight before.

    I hope that gives you some info on what to expect and I hope it all goes smoothly for your mum. I have three daughters and their support has been amazing and I’m sure your mum feels the same about you

    Love Annie

  • maaaki
    maaaki Member Posts: 105

    Hello...it is great to read that Kisqali is working well for most of you. I just finished first cycle, feeling fine, but my neutrophils are down to 0.8 and total white blood cells are less than 1.5....so I need to wait untill they grow again before I start next cycle. I asked MO about getting 400 mg, but she said I need to have low neutrophil counts for two cycles and than she can go for lower dosage. Is it same for you as well? Nice day to you all.

  • Idajakoc
    Idajakoc Member Posts: 71

    Hello from italy ladies!

    Lola I am happy for you and I hope it goes like this all the time! And enjoy you breasts!

    Mandy I am happy for your scan!

    As for the blury eyes dear Annie & Mandy I have that and glasses have helped alot I also have dry eyes and artificial tears are a save (I use the in a conservative way)

    Maaki dont be too radical on yourself. Wait and see there where months that I had 0.8 neutrophiles and the next month 5.2! Give it some time! And I have been experimenting with food that helps boost your immunity. Give that a try especially on your week off!

    Lila Hope I wish your mom all the best! And you are an amazing human being! I would advice her not tocdo the same mistake I did! Dont rush take everything slowly. Go for walks everyday, get of work a little earlier if she can afford, cook for herself, drink as mucj water as possible. And enjoy every small thing!

    Hugs to you all!

    Have a great week!

    Ps: wish me luck as I have to fast for 16 hours for the scan tomorrow😅


  • Operahouse
    Operahouse Member Posts: 44

    maaaki, I had neutrophils as low as 0.7 in my first cycle, down to 400mg from cycle 2, down to 200 from cycle 4. Don't worry, your onc will adjust for you. Now my neutrophils stablizes around 4.

    Ida, good luck with your fast and scan results.

  • laine615
    laine615 Member Posts: 102

    Lilahope - What a blessing you are for your mom. From what my MO tells me Kisqali/Letrozole is much kinder on the body than IV chemo. I've had blurred vision and feel tired if I don't get 9 hours of sleep. That's about it so far. I'm on the last week of my 6th cycle. I will be praying she does very well on this combo.

    Annie - My MO recommended Systain eye drops for the blurred vision and they do help. I hope you enjoy your retirement to the fullest.

    Maaki - My counts have always been normal but my MO told me in the begining that it would take a couple of cycles to see if I could tolerate 600mg. So I think it's fairly normal to go 2 cycles before you change doses. Wish I could be more helpful.

    Ida - Very best of luck to your on your scans. We'll all be there with you. The waiting room is going to be crowded!

    Hugs to all,

    Laine


  • maaaki
    maaaki Member Posts: 105

    Thanks for all the responses so i wait for my baby neutrophís to grow. Next week I will travel to Iceland for vacation with my daughter and mother so hope it will grow by this time. And I wish all the best scans to all of you,I will have them in october also to know how cyberknife treatment to one vertebra went...i hope ot worked

  • maaaki
    maaaki Member Posts: 105

    And when did you noticed the hair thining? I really dont feel yet to have bold head again. I had it in 2013 and hair afterwards when they grow were so goood much better than the old one

  • Operahouse
    Operahouse Member Posts: 44

    hi maaaki,

    My hair started thinning after 1st cycle. Ever since my dose was reduced to 200mg, my hair thinning stopped, no more hair on the floor, yeah.

    Enjoy your vacation 😎

  • missmonty
    missmonty Member Posts: 71

    Hi,

    I don’t post often, although I do check posts on a regular basis.

    I did want to report, primarily as a source of encouragement to others, that so far this combo has been very effective for me. After 13 cycles, my recent scan shows no evidence of active disease. I have remained on 600mg since the start, occasionally taking a slightly longer break period to allow my neutrophils to bounce back, which they always do.

    My side effects have been minimal, and similar to what a lot of you ladies have described. Medium grade neutropenia, fatigue from time to time, likely from the insomnia I seem to struggle with, some joint pain, and hair thinning. Nothing that really interrupts day to day activities for me

    So far my experience with this drug combo has been very positive, so if you are just starting, I hope you have the same level success. For others who have been on the drug(s) for a while, I wish you continued success.

    Anna

  • Operahouse
    Operahouse Member Posts: 44

    hi Anna, thanks for sharing your good news. We need it to keep us going. Happy for you.

  • laine615
    laine615 Member Posts: 102

    Hey Anna, congrats on the good news. So happy you've had such success with this combo.

    Operahouse - have your TM's fallen into normal range yet?

    Maaaki - Enjoy Iceland!! I've heard it's wonderful.

    Ida - Please let us know how your scans went.

    Have a great night ladies

    Laine

  • Operahouse
    Operahouse Member Posts: 44

    hi laine,

    Luckily my ca153 is back into normal range. It's 25 now from 41 in March.

  • laine615
    laine615 Member Posts: 102

    Hi Opera,

    That is wonderful!!!

  • maaaki
    maaaki Member Posts: 105

    Hi Opera, that is great that you have good results. I read very positive outcomes here with the Kisqali. Yeah! My neutrofils are even more down on Monday were 0.8 and yesterday 0.6 and today I was supposed to start second cycle. How long did you experienced the fall down of it after the end of the cycle? I am supposed to go for a wedding on saturday and next week to Iceland. My dr. said that with the Kisqali is not risk of febrile neutropenia but I had this problem with chemo in 2014 so I am cautious now. Thank

  • Dragonfly46
    Dragonfly46 Member Posts: 13

    hi, I was on anastrozole.kisqali combo for 8 months for advanced BC. I have now had my SMX so stopped the kisqali. Has anyone else developed neuropathy in their legs

  • Operahouse
    Operahouse Member Posts: 44

    Hi maaaki,

    My neutrophils bounced back from 0.7 to 1.3 in two weeks time. My onc said it wasn't perfect but high enough to continue the combo.

  • forza
    forza Member Posts: 150

    Hi Maaki : Think it's protocol. I also had those 2 cycles (600) with an extra week rest because of those frigging white blood cells , they also dropped even more mid-rest :O The things are unpredictable. Then they lowered me to 400.

    I somehow also expected to stay on 600 always getting that extra rest week . I suppose it's better against the cancer to have a *constant* 400 than an unpredictable on-off 600 ... This cycle I'm getting extra rest days because of holidays in hospital , not the blood count. Makes me feel very important :(( Might make a fuss next time now I've been seen all over hospital , I would like them to align having scans , labs and handing out drugs. It ruins my entire day all these supposedly small appointments all the time. I'm a complete homebody or a day-out kinda woman. I'm useless with making the most of a few free hours here and there.

    Don't remember who : yes yes on the hair thinning. Luckily I was fairly Diana Ross beforehand so nobody's noticed. It could be that abrupt fake menopause though (just me thinking out loud).

    !!!! Ida !!! 2 weeks after my 4 wisdom teeth extraction day of hell ... still 1 yellow jaw and still living on rice pudding and mashed potatoes and milkshakes etc ... I'd kill for some crunchy crusty bread ;) Hoping all is well with you.


    And a rant : been telling people about my good petscan and now everybody thinks I'm almost cured :( I give up. Don't people have google ?? Ach


    hugs Jenn


  • kanga_roo
    kanga_roo Member Posts: 303

    Another side effect to Be aware of:

    September 13, 2019

    ISSUE: FDA is warning that Ibrance (palbociclib), Kisqali (ribociclib), and Verzenio(abemaciclib) used to treat some patients with advanced breast cancers may cause rare but severe inflammation of the lungs. FDA has approved new warnings about this risk to the prescribing information and Patient Package Insert for the entire class of these cyclin-dependent kinase 4/6 (CDK 4/6) inhibitor medicines. The overall benefit of CDK 4/6 inhibitors is still greater than the risks when used as prescribed.

    https://www.drugs.com/fda/safety-communication-ibrance-palbociclib-kisqali-ribociclib-verzenio-abemaciclib-rare-but-severe-14305.html?utm_source=ddc&utm_medium=email&utm_campaign=FDA+Alert+-+Drug+Safety+Communication%3A+Ibrance+%28palbociclib%29%2C+Kisqali+%28ribociclib%29%2C+and+Verzenio+%28abemaciclib%29+-+Rare+but+Severe+Lung+Inflammation


  • traii
    traii Member Posts: 379

    interesting read Kanga.

    I just had my appt on Friday with my oncologist If only I knew this earlier to bring this up with her due to 'something' showing on my CT last month.

    Still waiting on bronchoscopy as I was unwell last week when scheduled with a virus that's been going around! Now I have to wait until the 30th of this month for the procedure.

    My TMs remained the same as last month so she was happy and told me I should be too and that this seemed atypical and still thinks it is just a passing infection!🤞

  • Idajakoc
    Idajakoc Member Posts: 71

    Hello ladies!

    Thank you very much for the support! I am still waiting for the results! I have never been more calm while waiting and it feels wierd!

    I am glad for the good news I read!

    Jenn contusion is normal for the extraction of wisdom tooth! And it lasts up to 21 days.

    Maaki I hope you can make it for the wedding and the vacation! I have found broccoli soup a great friend of my neutrophiles!

    Study Update: the study is already closed in italy for ladies in natural menopausa. It is now approved and on payment for a crazy price of 7982€. (Only kisqali) For us in pre menopausa is still a study since they still need information that this medication si worth it. Jackie maybe these side effects are effecting the approvance for the pre menopausa.

    Have a great weekend!

    Hugs!

    Ida


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