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

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Comments

  • traii
    traii Member Posts: 379

    so quiet on here hope that everyone is well and nothing but good things happening for all.

    Shyviolet glad you found us. But sorry you had to. glad you're tolerating combo well.

    I've started box #29 i think it is now on Monday onc happy with how I'm travelling so happy to push scans further.

    I have my dear friends sister dx with stage 4 same time as me in palliative care. She progressed really quick, within a month. I'm full of emotion and guilt because she was on this combo for 18 months then chemo and now this! My heart breaks😪

    Take care all x

  • roo2
    roo2 Member Posts: 3

    Hi all, I've been lurking on these forums for a few weeks and thought I'd take the plunge and post. I'm newly diagnosed and needless to say I'm pretty terrified. I am on this combo of meds. Just finished my first week and mainly feel totally exhausted. I even fell asleep while having an MRI! You are a group of inspiring and amazing people and I appreciate all of the love, support, and advice that is shared.

    Thanks for listening,

    Roo

  • ilowen
    ilowen Member Posts: 78

    Roo2,

    I hear you on feeling totally exhausted. I just finished box #5 and I can tell you that, while I still feel fatigued a majority of the time, it’s much less than when I first started on this combo. Some days the clouds actually lift and I almost feel like my old energetic self. I have found that activity in the morning (eg: a walk, strength training, yoga, etc) really helps push some of the fatigue away for that day. Over the months, my body has acclimated to the meds and I no longer have any nausea or indigestion, which I regularly experienced in the first few months.

    I’m so glad you found these forums. As you said, everyone here is very inspiring, amazing, knowledgeable and helpful. Cheers

  • kanga_roo
    kanga_roo Member Posts: 303

    I’m celebrating my 4th Easter since diagnosis, not that I’m a religious person, but I love the hot cross buns and chocolate! Living on a Keto diet most of the time, this is one of the few times of the year I allow myself some sugary treats!

    Hey Roo2 hope the fatigue subsides, I agree with ilowen, if you can get some morning exercise in, it can improve your energy levels. I am assuming you are on the 600mg dose, and have probably read posts from this group where we have gone to 400, or even to200 in some cases, to mitigate the side effects. Keep in mind, this is a very strong chemo treatment, and will push your body to the limits till you adjust, usually one to two months. Also, the Femara has its own list of side effects, so it’s like a double whammy when you first start on this combo!

    No COVID immunisation in sight here in Australia as our Govt continue to stuff up the roll out, but the State I live in hasn’t had any community outbreaks for weeks now. It will be the flu season here soon, and we already have overcrowded hospitals and ambulance ramping, so I continue to be cautious and a bit of a recluse atm... still visit friends and family, but shop at quiet times etc,

    Bit gentle Easter hugs to you all!

    Jackie.

  • BrisVegas_Gal
    BrisVegas_Gal Member Posts: 21

    Happy Easter to all but especially to our new girls. I bet you’re feeling scared and confused at a time when we should be gathering together with loved ones for celebration and sharing good, happy times. Similar to Jackie I was Diagnosed 4 years ago (April 27) and have been on this combo ever since with no progression from the extensive bone mets and no changes to the little spots in my lungs I’ve had all the usual side effects especially the fatigue but have adjusted my lifestyles to a point where things are ok. With the love, caring, support and davice you receive from this group you’ll get there. I don’t post often but when I do there is always friends out there willing to help; so please don’t be shy with your questions and comments.

    Regarding the vaccine I live in Queensland and am booked to have the astra zenneca next week during my week off treatment on my oncologists advice. I won’t hold my breath though as they might run out before then. Things are disorganised and confusing.

    And Traii I understand how you must be feeling about your friends sister. She’s your cancer buddy and it’s breaks your heart to see her suffering but at the same time it’s very close. Be kind and gentle with yourself.

    Again happy Easter all - sorry for the long post. Once I start I can’t stop. I don’t mind if you don’t read it all

    Love

    Annie xx

  • roo2
    roo2 Member Posts: 3

    Annie, your situation sounds exactly like mine. Extensive bone mets with a few small spots on my lungs. Thank you for the post as it gives me hope! I have had more pesky side effects crop up. My face is swollen, red, and very hot. The skin just burns and the only relief is to put a cold compress on my face. I must admit I'm not a big fan of this one. Doc on call says it's a grade 1 side effect and to keep taking the pills.

    Ilowin and Jackie thanks for the advice, I am definitely going to try that!

    I wish everyone the best of luck on the vaccine. I am so very fortunate to have had both doses of the Moderna vaccine. I live in the US and got the vaccine through work a few weeks before I started treatment.

    Hugs to all,

    Roo

  • missmonty
    missmonty Member Posts: 71

    Good morning. I hope everyone is doing well. I just wanted to post that I received my 1st vaccine dose (Pfizer) on April 6th and have my 2nd dose scheduled for May 13th. No side effects, other than a pretty sore arm. Initially my province (Ontario) was not planning to prioritize cancer patients, but they changed that, and I am grateful. I feel like I am walking with a little more spring in my step after my 1st vaccine. We just entered our third strict lockdown here in Ontario, with a stay at home order for 28 days, however I do feel somewhat optimistic about the summer being normal(ish). 🤞

    Stay safe everyone.


    Anna

  • kanga_roo
    kanga_roo Member Posts: 303

    So glad you got your shot Anna! I got mine today too, the astrazeneca version, so will need to get another shot in about 3 months.

    Interestingly, the doctor told me that immuno-compromised recipients don’t tend to have the severe side affects often suffered by others, only time I’ve felt happy about my white cell count lol!

    Hoping you are all keeping well,

    jackie

  • BrisVegas_Gal
    BrisVegas_Gal Member Posts: 21

    hi Jackie

    Your Dr is right I think. I had the Astrazenica vaccine 5 days ago and have been fine since. A bit tireder than usual maybe although that is quite difficult to judge as I’m always so very tired.

    So good luck I hope you do fine,

    Take care everyone

    Love Annie

    xxx

  • forza
    forza Member Posts: 150

    hi all , also the newcomers

    Updating. Nearly coming to 2 years on this drug combination. On scans last week : STABLE. Had the 2 Moderna shots. Was quite ill for a day after the second shot , high fever mainly.
    Europe is still a mess Covid wise. Somehow we now have an Indian variant in the country ... the mind boggles that they flew in 40 nursing students from India and consequently 20 of them tested positive on that variant. It will never end. Very jealous of countries , regions , states where they are Covid free.
    Cancer wise , I’ve fully moved over to another hospital. My original hospital is lacking in answers , theories or a let’s try something new approach. Whilst I’m stable , that’s cool but I expect more if anything does go wrong. Admittedly it’s also a lot closer to me ^^

    Stay strong my Kisqali sisters ^Jennifer


  • ilowen
    ilowen Member Posts: 78

    Great news on stable, Forza! I’m happy that you were able to move to another hospital that can better meet your needs.

  • sunnidays
    sunnidays Member Posts: 165

    Has anyone has issues with severe heartburn on Ribociclib?

  • forza
    forza Member Posts: 150

    thanks ilowen

    No heartburn here sunnidays. But I have an iron stomach , my diet is exclusively coffee and cake. So I’m probably not the best to ask

  • traii
    traii Member Posts: 379

    great to hear Forza that you made the move to your new hospital and as a bonus it's closer to home for you.

    No heartburn here either Sunnidays

  • kanga_roo
    kanga_roo Member Posts: 303

    Forza, so glad to hear you are still stable and things are working out with your new hospital.

    Sunnidays, I do get heartburn with the kisqali, and find it happens when I eat dairy products - cream, cheese etc.. so I try to avoid them before going to bed.
    Jackie

  • ilowen
    ilowen Member Posts: 78

    Sunnidays - I haven’t experienced heartburn with ribociclib. I take ribociclib in the morning immediately after breakfast. This seems to be the best timing for me to limit the risk of stomach issues. When I first started ribociclib, I had nausea for several hours after taking it. I found that I needed to take it with a meal and, besides letrozole, I couldn’t take any other medications or supplements with it. I haven’t experienced any adverse stomach issues for the past couple months.

  • nola70115
    nola70115 Member Posts: 61

    Hi everyone -

    I’m starting this cocktail tomorrow. I get my ovarian suppressant shot in the morning and start the pills the same day. Then on Tuesday I have a full day of training at work, including a performance review with my boss.

    Because of course I would, right? That’s how my luck always goes.

    So I’m wondering how quickly the side effects hit you and what I should expect in the first 24 hours. I know to take the pills with food, but is there anything else so can do to not get hit hard and fast?

  • kanga_roo
    kanga_roo Member Posts: 303

    Hiya Nola,

    Probably the worst side effect will be hot flashes... initially they are difficult to control and can be quite severe. Nausea and strong fatigue is also another probability. I hope your review goes well, but it might be worth warning your supervisor that you may need to make a quick exit due to sFX of your new medication.


  • kanga_roo
    kanga_roo Member Posts: 303

    Happy to let you all know my visit to my Onc went well, bloods all good, and 3 months to my next MRI and bone scan :)

    Something new though, my onc has offered me the opportunity to participate in a new drug trial, looking toward a second line of treatment for me, when the Kisqali eventually fails. The following is a bit long, but i know some of you will want to do your own research on this, or ask your specialist some questions, so here it is.

    The research is called CAPTURE and is aimed at those with the PIK3CA mutation.The following is from the info she sent to me:

    Researchers expect that only approximately 35-40% of people with ER-positive HER2-negative advanced breast cancer will have the PIK3CA mutation. If a PIK3CA mutation is confirmed, and you wish to participate in the main CAPTURE study, you will be provided with further information about the main CAPTURE study and the study treatment alpelisib. If you then choose to participate in the main CAPTURE study you will be randomly assigned (like flipping a coin) to receive either alpelisib with fulvestrant (Arm A), or to receive chemotherapy with capecitabine (a standard treatment for ER-positive HER2-negative advanced breast cancer) (Arm B). Participants randomised to Arm A will have clinic visits every 28 days; participants randomised to Arm B will have clinic visits every 21 days. Clinic visits will involve regular blood tests and physical examinations. Further information will be given to you in the information sheet for the main CAPTURE study.

    My understanding is both treatments are oral, with an injection at prescribed times (maybe once a month), so I thought I would at least get the blood tests done to see if I qualify. There is a limited time on them accepting people into the trial, so I really need to decide after I get the results from my next round of tests.

    Any feedback on any of the above treatments would be appreciated, otherwise I'm sailing into the unknown!

    Cheers,

    Jackie.

  • nopink2019
    nopink2019 Member Posts: 384

    My latest CT scan showed new lesions on liver, so off CDK4/6 inhibitor (Kisqali) and on to mTOR inhibitor (Afinitor). Best to you all.

  • ilowen
    ilowen Member Posts: 78

    Nopink, so sorry to hear about the progression. I hope Afinitor treats you well.

  • forza
    forza Member Posts: 150

    I’m sorry nopink , hoping the new stuff does better for you.

    Thanks Kanga for the info. Good to have an onco who looks ahead.

    I forgot to take my K combo 2 days in a row. Got some chickens and I feed them at the same time and then get distracted 🙄 This would have horrified me 2 years ago , now I’m like “whatever”. The new normal 🤷🏻♀️


    stay strong xx

  • Hamer1l
    Hamer1l Member Posts: 36

    Hi everyone

    I have only just joined this forum as newly diagnosed in March 21 (de novo). I have been reading through the posts and this forum is amazing, so much love and support.

    I have SBC which has spread to liver, lungs and bones, mainly the spine. I have had 4 compression fractures on the vertebrae caused by the cancer, I could barely walk back in March but thankfully I'm improving now treatment has started.

    I am on Ribociclib, letrozole and zoladex. 1st scan last week showed partial response to treatment. Lesions in the liver have all started to shrink and my blood markers had dropped dramatically. I started Ribociclib mid March but only started letrozole early May as my oncologist wanted to stagger the treatment as he was wary of tumour flare from the zoladex.

    So far I feel good, very little side effects. I'm eating and sleeping well and religiously drink my water to help with any side effects.

    I just wondered how everyone else finds this drug/ combination? It's early days for me, I would love to hear off those who have been on it for some time.

    I was so pleased the 1st scan showed a positive result, does anyone know roughly how long we can get out of this drug?

    Thanks

    X


  • ilowen
    ilowen Member Posts: 78

    Hamer, I’m so sorry that you’ve joined us here but Welcome! It’s wonderful to hear that your back issues are improving and I hope they continue to do so.

    When I first started this treatment (ribociclib, letrozole and zoladex), I suffered from nausea and pretty strong fatigue. After some trial and error, I found that if I took the meds immediately after I ate breakfast, I either wouldn’t get any nausea or it would be very mild. I also needed to be make sure that I didn’t take anything else (pain meds, vitamins) until the meds were well out of my stomach. For the fatigue, I found that exercising in the morning helped thin the fog. 6 months later and the nausea is completely gone (I still follow my original routine) and the fatigue, while still an issue, has lessened and is more manageable.

    The only PFS data that I’ve seen mentioned a median PFS of 24 months but that was from reports dated a few years ago. I’m not sure if there are any more recent results/studies on this.

    Cheers!

  • nola70115
    nola70115 Member Posts: 61

    Okthis is a stupid question but it’s too late to call the doctor. When I’m on the skip week for Kisqali do I still take letrozole or am I on a week long break from that too?

  • Hamer1l
    Hamer1l Member Posts: 36

    Hi there

    You still take letrozole on the week break on Ribociclub.

    Thanks

    X

  • kanga_roo
    kanga_roo Member Posts: 303

    Hi Hamer,

    Sending you a gentle hug to let you know we are here for you when you need us. After reading through this thread you probably realise we are a diverse group from all around the world, brought together by the wonder drug kisqali! I hope you get the good results many of us have experienced! I have been on it since January 2018 with few side effects and a good QOL.

    I know sooner or later the drug will fail, but I also know, the longer you are on a treatment, the more new options become available.

    I remember when I was first diagnosed, andhow difficult those first few months are, as you adjust to the drugs and new routines. Kisqali is a heavy duty chemo, so it is highly likely you will experience some side FX. Always discuss these with you physician, but you can rest assured, if you have a question, there is probably someone on this thread who can answer it.

    Keep in touch, and let us know how you get on.

    Jackie

  • Hamer1l
    Hamer1l Member Posts: 36

    Hi Jackie

    Thanks for your reply and the warm welcome. Its really good to hear you have been in this drug since Jan 18 with few side effects. I hope this continues for you.

    I am on.my 3rd cycle, bloods have seemed OK so far but I know its early days. I have had few side effects so far, do they start straight away or once you have been taking the meds for a while?

    Yes the last couple of months have been a blur to be honest, I feel a little more settled now that my treatment is underway.

    Has kisqali reduced your tumours or has it remained stable all the way through?

    X


  • kanga_roo
    kanga_roo Member Posts: 303

    Hamer, I had a pretty immediate response to kisqali with a 50% reduction in my liver tumour within the first 3 months. The tumour in my breast was slower to reduce. My liver tumour is no longer visible on CT scans and my breast tumour is barely visible. My cancer markers go up and down and don’t seem to be an indicator of what the cancer is up too. At the moment I am NEAD (no evidence of advancing disease) and I’m happy with that.

    The worst stress for me is my ongoing tests.... CTscans, bone scans, etc. initially I was having a CT every month until my oncologist was assured there was no spread. I have a bone scan every 6 months, and my other tests have paced out to 4 months. Scanxiety we call it, lol!

    The worst side FX for me was from the letrozole. I had regular intense hot flashes 24/7. I think I have experienced most of them in some form or other, but they have not lasted long. Others on the thread will probably give you more info on that. If they affect your lifestyle let your oncologist know, there are plenty of prescription drugs that can help, eg for nausea.

    Jackie

  • Hamer1l
    Hamer1l Member Posts: 36

    Hi Jackie

    We sound a little similar as the mets in my liver have reduced by about a third in the first three months. It's great that yours reduced by 50% initially.

    No evidence of advancing disease is brilliant and gives me lots of hope. This. Forum is just what I needed to give me a boost and some hope for the future.

    Yes I found the scan and results very stressful, it was my first set of results last week. I'm hoping to manage my stress a little better on my next scan in August.

    I have bloods due next week ready for my 4th cycle of Ribociclib so I will ask what my marker is doing.

    X

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