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

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Comments

  • sunnidays
    sunnidays Member Posts: 166
    • I have big patches of dry skin and redness on my lower body my oncologist says it's treatment-related and I'm getting referred to a dermatologist. I have to say I did have skin issues before I started on the ribociclib but nothing like this. I think it's a known side effect.
  • kanga_roo
    kanga_roo Member Posts: 303

    hi sun I, hope your dry skin has been resolved.

    Just checking in to say all my latest scans were fine, and everything is stable heading in to my 6th year on this combo!

    I’m still keto/low carb and in good health… sugar cholesterol all good too!

  • forza
    forza Member Posts: 150

    kkcita My fingernails fall off or bend double if I’m not careful. Keeping them short helps. You’re not alone.

    Hi all , sorry I’ve been gone so long , just couldn’t log in anymore. I guess I’m ok , nearly at 4 years with K + Letrozole , still my first treatment. How time flies.
    love to you all xxx Jen


  • cure-ious
    cure-ious Member Posts: 2,926

    Kanga- Fantastic!!!! Congratulations on Six Years!!!

    Forza- After 7.5 years of I-F (femara, then faslodex), my nails were soft and peeling- I recently tried this "ridge filler" and it has helped a LOT! It has a matte finish, so looks like regular nail, and I still have plenty of ridges but the nails are much stronger and actually growing out a bit. Don't have to trim them all the time either. Can get it on Amazon...

    Nail Tek Foundation Xtra 4, Ridge Filling Strengthening Base Coat for Weak and Damaged Nails, 0.5 oz, 1-Pack

  • lacorneille17
    lacorneille17 Member Posts: 19
    edited April 2023

    I am newly diagnosed, de Novo metastatic with one met to pelvis. Started Lupron one week ago and will start this combo of k and letrozole this coming Friday. Will add bonne strengthener once I have a bit of dental work done.


    Today has been a very dark day for me, one who it from me Novo diagnosis. I am 45 with an 8 year old and a really wonderful partner. But it's just the three of us really. Reading these stories of folks in who have been on this combo so successfully is really heartening.

  • eleanora
    eleanora Member Posts: 305
    edited April 2023

    Cure-ious

    Thanks for the Nail-tek recommendation. Ordered it from Amazon last night. After only 8 months on Kisqali/faslodex, I am noticing weakness in my once very strong nails. While I can't do much about the hair thinning (which fortunately stopped in the 5th month) I look forward to protecting my nails.

    Lacorneille 17,

    So sorry you've had to join the group, but welcome. I have found wonderful information, support and kindness here. We have all been in the dark place where you are at the moment, but I promise you it will get better. You have much to live for and we are here to cheer you on as you move forward. I will share my experience in case any of it is helpful.

    My initial dose of Kisqali was at the max of 600mg and it gave me such severe GI problems that it was stopped after 10 days and I restarted at 400mg after a one week break. I continued to have problems that were less severe for about 3 months but was determined to stick with it, as I had read other's stories about SE's calming down after a few months. In my case that's exactly what happened, and now I feel almost normal. I recommend that you have a supply of Imodium and Phazyme on hand. If GI symptoms develop, you can request a prescription for Bentyl, a medication for IBS. Even after my dose of Kisqali was lowered, I had a few severe episodes and I used the Bentyl as a "rescue" medication. My hair thinned quite a bit, but stopped after 5 months and I think may even be growing back a bit.

    All of the above is my way of telling you that you can do this. You are not alone. We are here for you.

    Eleanora



  • mozuke1
    mozuke1 Member Posts: 44
    edited April 2023

    Lacorneille 17, I’m sorry you find yourself here, I know the beginning is horrible. I was diagnosed de novo at 49 with bone mets. I have been on Kisqali for about a year. I am still on 600mg. I have had no side effects other than low blood counts. Most days I can forget that I have cancer. I work part-time, travel, lunch with friends, etc. I just returned from a trip with my kids where we went to parks, walked the beach and went paddle boarding.

    It will get better.

    Maureen

  • mamadetres
    mamadetres Member Posts: 15
    edited April 2023

    Looks like I'm getting a one month vacation from Kisquali. Liver Enzymes ALT and AST and Bili had been climbing the last three months. Hopefully the time off, will allow my liver the opportunity to heal.

  • anx789
    anx789 Member Posts: 241
    edited April 2023

    msmadetres, I just started Kisqali 4 months ago, just after 2 months I noticed my ALT and AST has been climbing, too. From 19 to 40s, how high is yours

  • wontgiveup
    wontgiveup Member Posts: 5
    edited April 2023

    Hi Lacorneille 17, I am sorry to hear your diagnosis and to have you join us here. I’m also a denovo at the age of 36 (almost 1.5 yesrs ago) with two 7 year old boys now. The initial part was difficult when our body is trying to accustom to the treatment. But once we find the strength and will, things will get easier and we treat it like a chronic illness every day.

    I had lots of nausea, dizziness and stomach upset when I was on Kisqali the first 3 months, until I realized that taking it after a full meal that is non spicy or acidic help to reduce those symptom dramatically. Once I thought that has passed, I started to have stiffness in the morning or when I am seated too long. But I later find that managing it by having some light exercises and movement help to reduce that too. Now I am facing similar issue as the rest particularly with crack nails, dry palms and skin. My hair loss has also stopped by 5-6 months of taking kisqali.

    At time, things can be challenging, but having the support and advices here really help me to manage the side effects and emotions well. The only thing that still affects me is my ANC that remains Grade 3 on each followup but I am still on the full dose of 600mg with the help of zarzio injection monthly. We had it reduced to 400mg for 4 months continuously during my 5th cycle of kisqali, which didn’t help to improve my ANC but I later started to have pain on my lymph nodes and my tumour sites consistently. So my MO kept me on maximum dose with zarzio as booster .

    I am now in my 18th cycle and last pet scan in Feb shows no signs of disease with complete response. I hope all of us can be on this treatment for as long as we can.

    For the past 1.5 years I still manage to move into a new home, have lots of outings with my family, travel to Europe with my sister who suffer from ovarian cancer, work and serve at the church. Cancer hasn’t taken our meaningful life.

    As Maureen said, it will get better. :)

    Doris

  • lacorneille17
    lacorneille17 Member Posts: 19
    edited April 2023

    Thank you everyone. This is heartening to hear. I start my meds today!

  • kanga_roo
    kanga_roo Member Posts: 303
    edited April 2023

    Hi everyone!

    Phew… got my latest blood results and all good! My white cell count is a bit low and I feel really lethargic, so I might take a two week break from kisqali to get them back to a happy place! I have done this a few times since diagnosed over 5 years ago and it seems to do the trick. (My Onc says this is ok)Still haven’t had covid, but the flu season is approaching us in Australia, so still wearing a mask. I sometimes wonder if I would have worn a mask out and about if it weren’t for the covid epidemic. Every cloud has a silver lining!

    Gentle hugs to all,

    Jackie.

  • keris113
    keris113 Member Posts: 45

    Switching threads, after switching meds. I was originally put on Ibrance but am switching oncologists and the new one I am seeing recommends Kisqali instead. I will be stopping the Ibrance after one round and onto the Kisqali. Was recently diagnosed in January and was on one round of AC when they believed it was stage III but turned out to be stage 4 with mets in my liver. Hoping to get some support and encouragement and meet people who are going through similar situations. It is unfortunate to be a part of this club, certainly one I never thought I would join at 37 but looking at your posts, it seems like a great group. Thanks ❤️

  • ocequine
    ocequine Member Posts: 1

    Hi all,

    new here. I was initially diagnosed in March with HR+/HER2- Stage 4, both breasts, axillary lymph nodes and mets in the sternum bone due to the tumor being in the chest wall and sitting on top of the bone. So many tests and appointments, finally starting treatment. Other than having stage 4 cancer my oncologist admists I seem to be very well and healthy, my bloodwork for the most part has been pretty good except for showing the cancer markers, and haven't been having pain or really any other symptoms, I feel fine. Been taking Anastrozole 1 g a few days and started Kisqali 600 mg tonight. Taking these at 7 pm. Anastrozole so far really no side effects to speak of. (I'm 65 and already went thru menopause twice, the first time when 33 taking Lupron 6 months, to shrink a fibroid tumor in the uterus prior to myomectomy surgery, that caused all the full blown symptoms of menopause). So when I went thru menopause for real it was like nothing happened, really none of those typical effects. Took my first dose of Kisqali an hour ago, initially felt a little wierd like I might be dizzy or nauseous but had some tea and crackers and so far so good. Sure hope I can get by and tolerate these meds!

  • lacorneille17
    lacorneille17 Member Posts: 19

    Hello, ocequine!

    I am relatively new to this as well, and you and I sound similar. Stage 4 but relatively healthy and no cancer sypmtoms. I hope that these drugs work for you!

  • kanga_roo
    kanga_roo Member Posts: 303

    hi to those new to this thread!

    Keris, I have/had Mets to my liver too, the kisqali has pretty much cleared them up.. hope it works for you too!

    J.

  • mamadetres
    mamadetres Member Posts: 15
    https://community.breastcancer.org/en/discussion/comment/5795359#Comment_5795359

    @anx789

    So sorry for the delayed response!

    I started Kisquali/Letrozole/ in June 2022. At that time I was AST 14, ALT 13, Bili .4.

    In early March 2022, I was AST 957 ALT 1365 BILI 1.4…I felt really sick. In late March with no med/food/etc changes, my numbers began to drop. Not sure why. After one month off of the drug cocktail, I am now AST 40 ALT 45 and Bili .6

    I'm back on and will get new labs the beginning of June. I haven't experienced any harsh side effects since restarting. Yay! 😃

  • lacorneille17
    lacorneille17 Member Posts: 19

    So I started third cycle of kisqali on Tuesday, then went to get bloods drawn. Nurse called me that afternoon to say I'm being taken off kisqali "indefinitely" because my ATL and AST are elevated, one is 190ish and one is 360ish. Still on letrozole and lupron and now getting weekly blood draws for testing. I am hoping that numbers go back down quickly and I can restart soon. I am also taking a very low dose of Effexor and it is possible that it's what is causing the liver issues. Physically I feel fine, but I also felt fine and was walking around with stage 4 de Novo MBC so I'm not sure I trust the feeling okay (though I'm grateful for it)

    Tumor markers on the other hand are down to normal levels so that's good news. I see my oncologist again in two more weeks, will have two more sets of blood tests before then.

  • mamadetres
    mamadetres Member Posts: 15

    Tuesday was my 1 year MBC cancerversary. In some ways, this year has flown by and in other ways, it's just dragged on. My life today is so incredibly different than it was a year ago. Not different in that, I still work full time, wife, and mom, but different in that, I've learned to put myself first (ok, at least most of the time). It's easier to say, NO. I traveled more and I was so much more intentional with my time. My one year cancerversary means, I lived another year. I'm thankful. Someone on the boards posted (I'm paraphrasing) that YOLO is a popular saying, but it's not reality. Reality is YODO, You only die once, you LIVE EVERY day. So, here's to living!

    It's so interesting that the AST/ALT/Bili #'s seem to be viewed as an art, not a science, when deciding to keep a patient on this combo. My numbers were elevated after finishing my first round (after the month off). I hope my body adjusts to the meds…at least I think that's what I'm supposed to hope, right?? My scans have been stable this year…We want to stay the course as long as the course is working.

  • forza
    forza Member Posts: 150

    hi all

    Welcome new people in the thread.
    Summary - casually moved into year 5 on this combo -My markers were never abnormal -I have way too much hair even after thinning -my nails remain a big problem -my skin hands remains a problem -not even going to mention that sandpaper vagina

    Thanks cureious for that ridge filler tip, I will look out for it.

    Kanga 👍👍👍

    yes this new laid back hospital I’m at is sometimes troubling but I do my best to block it out. I skip bloodworks , I skip the monthly x-geva shots , I can’t do most scans because of worsening (?iodine) allergies … so whatever ??? They don’t particularly care about that magic number 1. I just show my face every 3 months. Last thing I had was a breast echo and the original tumour is still gone.
    They always get the technicians in to come look at this boob without a tumour , Kisqali yes , it’s magic. Hoping it lasts.

    My MS getting worse though , oh well

    love to all 😘


  • forza
    forza Member Posts: 150

    oh you can leave ❤️ now


    Ach , I’ll do that next time

  • lacorneille17
    lacorneille17 Member Posts: 19
    https://community.breastcancer.org/en/discussion/comment/5855522#Comment_5855522

    @forza i am so happy to hear these meds are working for you..I hope to go back on kisqali soon. I am sorry you also have MS, I also have rheumatoid arthritis and curious how treatments for these two illnesses

  • forza
    forza Member Posts: 150

    hello Corneille , I’ve not had any MS treatment for years so not stressed over drug interactions. Never thought it was possible to have 2 shitty diseases. These things might sound strange but with this cancer I was glad I wouldn’t die in a wheelchair. Yet here I still am.
    I also have endometriosis, recently diagnosed after being ignored about this all my life. They put me on a non stop hormonal birth control pill the last years before the cancer dx which obviously made my hormone sensitive breast cancer explode. Hindsight and all that.

    My life is absurd. But I think the Kisqali is still doing its job. Really don’t want to have to switch therapies. Fingers crossed


    xxxx

  • eleanora
    eleanora Member Posts: 305

    Have been MBC, bone mets only, since 5/2022. Had SBRT to skull and pelvic mets in 6/2022 and on Kisqali and fulvestrant for 12 months now. Scans two weeks ago showed stable disease. Met with MO on Monday and can now go to 6 months scans.

    Fingers crossed for all of us.

  • mjconnor
    mjconnor Member Posts: 4

    i am new to this group. I am 64 yo and was diagnosed in May with Inflammatory Breast Cancer and am on Kisqali and Letrozole. Up until my GP noticed the rash in my left breast I felt fine. It took a few biopsies to conclude i had it in both axials and possibly in my mediastinum. My WBC went down so low on the 600 mg Kisqali dosage I went off after two week. Just finished a full course on 400 and my counts are low but am hoping for a rebound within the week so i can stay on course. I worry about every odd symptom and am trying to sort out what to call my oncologist about. My main concerns right now are what appears to be a lingering cold with a cough and post nasal drip. I know about interstitial lung disease but it just seems so unlikely that I have this after just five weeks (over two 4 week periods) on Kisqali and the fact I have a runny nose and sore throat. The second very recent symptom is the feeling I have needles in my eyes and they are very red. Based on what I read on this forum it seems this is likely the Letrozole Any suggestions on how to decide what’s important to share immediately and what can wait would be welcome. Thanks

  • lacorneille17
    lacorneille17 Member Posts: 19

    Hi all.. Looks like I'm moving on to ibrance. First set of scans were good but kisqali does not agree with my liver even at the lowest dose..I only actually managed one full month in the six months I was taking kisqali. The rest of the time I was either waiting for liver numbers to go down or trying a lower dose for about a week until they shot up again.. I'm sad because kisqali seems to have such great results but hopeful that my liver will like ibrance better and I'm grateful for the good scans. Wish you all the best of luck!

  • metaclaudia
    metaclaudia Member Posts: 7

    Hello…..I was diagnosed with Stage IV (recurrent after 15 years) in June 2023. Started letrozole in July 2023 and Kisqali in September 2023. I am tolerated everything well thus far. I’m so glad to have found this support space. Sending everyone warmest wishes.

  • moderators
    moderators Posts: 8,741

    Hi metaclaudia, We welcome you warmly here 💓. We're glad you found us, though sorry for what you are going through.

  • metaclaudia
    metaclaudia Member Posts: 7

    Thank you for your note! I feel incredibly fortunate to have family, friends faith - and insurance. I want to be a force for good here (and everywhere.)

  • grit_a
    grit_a Member Posts: 13

    Hello everyone, I am starting soon Ribociclib/ letrozole and had my second Zoladex injection last Friday. De novo Stage IV, left breast, lymph node(s) and mets to spine (2 places) and joint in 2 spots, I am R+, PR+, HER2-. I am having all the feelings and I just want to stick around to see my 5 year old girl grow up and be on her own two feet. I really appreciate everyone sharing their stories and giving newbies some desperately needed hope.

    I am so glad to read stories where this treatment has worked well.

    Anybody else on this combination and any side effects that you can remember at the start of the treatment? I am fearful and tearful for every pain I feel right now. Thank you

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