Ribociclib/Kisqali with Letrozole - Any one on this combo?
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Hey all!
I’m new to this group, thank you all for posting, your lives have been a true inspiration 💜 I was diagnosed last month with breast cancer, mesothoracic lymph nodules and a few lung nodules (++-, 90% proliferation rate). I’ll start using this week Kisqali + letrozol+ zoladex + denusomab for my bones. I’m 42 and it’s my first experience with cancer. No surgery or chemo scheduled, this will be my first line treatment.
I’d be grateful for any tips or advice you may have. While everything is still new to me and I learn to adjust to MBC life (lots of cryfests so far) I remain optimistic and hopeful. Thank you all once again, it’s through resilience and determination that we thrive!Elena
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@elena_p - Welcome to the community! We are so sorry you have to join us, but thank you for sharing your story here with everybody. Please know that feeling overwhelmed and having cryfests is completely normal when facing MBC.
If you want, we also offer helpful Virtual Support Groups that you can join whenever you need a little extra support. There, you’ll find others who understand what you are going through and a space where you don’t have to hold anything in.
We’re here for you and glad you reached out.The Mods
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@elena_p Sorry to welcome you to the club nobody wants to be in. Fortunately, these new-ish drugs are game changers, and hopefully you can treat this as a chronic disease rather than a death sentence and live a very full life.
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thank you, @tougholdcrow and @moderators. It’s been a roller coaster of emotions, from absolute shock to despair to grief and then a glimpse of hope. Now that I think about it there haven’t been many ups 😅. My amazing husband and our 8 yo son keep me going for sure.
I started the letrozol today, the kisqali and zoladex later this week and the bone shot next week after my dentist checkup. Let’s see how this goes, I’m trying to stay positive but it’s not always easy. I guess as time goes by I’ll be more accepting of the situation, will obsess less over it and focus on living my life despite adversity.I slowly read this thread (52 pages and many years covered, wow!) and hope you are all doing well.
Elena
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Hi @elena_p - welcome! Wish we could have met under different circumstances. I was diagnosed with stage 4 from out of the blue in Jan of this year. No breast cancer in my family on either side. I am on this treatment as my first line and have been having successful results. I am also blessed with an amazing husband and very supportive family and friends. Since I do not look sick or act sick, I have been able to live my life as though I have a chronic ailment, as Tough mentioned above. I am not as physically active as I used to be but I still play pickle ball, spin class every once in a while, multi-mile walks with our new dog and resistance training to keep up muscle strength.
You will come to learn how do deal with your new normal in your own way. This forum here is such a wonderful place to connect with others who are dealing with their new normals or who have been here for years ( these women give me so much hope that it is possible to manage my panic attacks). You learn so much, feel fully supported and welcome whether you post and interact everyday or just once in a while.
Definitely check out the other topics! You will start to recognize names, learn important helpful relevant info, know stories and come to feel like you have a new community and new friends.Stay in touch! Have a great Tuesday! juliana xo
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I really wish we would’ve met under different circumstances as well. Yeah the cryfests and panic attacks have been the new norm now..
Due to my tumor’s high proliferation, everything happened in an instant. They told me I was fast to act but the cancer was faster.
I will try to join the young patients support group. I live in Germany so hope I’ll make it work with the time difference. Thank you all for suggesting this.
Sending you positive thoughts,Elena
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Hi, I just found this forum and have been reading the post you brave ladies have made. I was diagnosed one year ago with stage 4 breast cancer diagnosed from the fluid they removed from my chest cavity. My shortness of breath turned out to be caused by breast cancer causing fluid to build up in the chest cavity, making breathing difficult. I was placed on Kisqali/Letrozole. Like many of you after a couple of pauses in the cycle, my dose was lowered to 400mg. After lowering the dose, I have only had to pause the treatment once. I find it very encouraging that at least one of you has been on this treatment for seven years! Keep up the positive attitudes and fight on.
Evelyn
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Hi there @breathless_1 your diagnosis and treatment plan are very similar to mine, diagnosed one year ago, pleural effusion,put on Kisqali and dropped to 400 after 2 courses because of nausea and vomiting. I’m doing ok now after a year. Just had my 3 month scans and not much of a change with the exception of my pleural effusion has gone from small to medium to medium to large on my right side. Do yo have anything else going on?
I have to say the shortness of breath is a tough one, I’m finally figuring out how to control it more with the use of hydromorphone.Hope you are doing ok
Big Hugs,
Lafish
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Lafish,
I have had an indwelling pleural catheter since January. Being able to drain the fluid on a regular basis has really helped with the breathing. The amount of fluid has reduced, but it's still there. I have not had a drain on the other side since May, so I guess that side has also slowed down. This has been my only symptom of the cancer. I have been able to resume all of my activities, so the shortness of breath is far less than before I got the catheter. The original diagnosis I was given was reactive airway disease, much like asthma, I have an inhaler for that but rarely us it. I do react to certain fragrances such as sandalwood, so that is when the inhaler helps.
Keep going strong,
Evelyn
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Hello all,
just checking in after finishing the first cycle. Fortunately, I have been able to tolerate the medicine well, no serious side effects besides fatigue and occasional headaches, though I believe the latter were due to low HTC during the break week. My genetic test results were also out and there are no mutations, the doctor said that it's unlikely that my cancer would mutate in the future. The first restaging ct scan is scheduled for the end of January so it'll live rent-free in my mind now throughout the holidays and longer 🙃
Mentally, there are still dark days (that led to a hypothyroidism flareup) but it's important that I now recognise when I drift too far away and try to occupy myself with something else. Cancer is such a mind f*ck because often it's something that just happens at random and can't be prevented. We're so used to controlling so many facets of our lives, including our health to a certain degree, that when something like this happens, it's really hard to process and accept.
I hope everyone here is doing well and hope the new year will bring us all closer to our treatment goals, new and effective medicine and, why not, a cure.
Keep fighting,
Elena
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hi all and @elena_p in particular …
I’m always a bit stressed to write good updates … yes it’s encouraging but it’s also a bit : why her and not me.
So after taking myself off Kisqali for 5 weeks again this autumn for a holiday and then back on it , just had the Petscan : my Pet-CT was even better than the last one. The micro blips (too small to biopsy) keep coming and going , this time they’re all gone again 🙄🙄 it’s excellent news but honestly : that scanxiety suddenly peaked. Is my body getting rid of it ? Is it the K ? Only god knows.
My hereditary / mutations bloodwork they finally did was all negative.
So I’m now definitely beyond 6,5 years on Kisqali (400)/ letrozole as first line.
I try bringing up to the oncologist to take me off Kisqali completely but she pretends she never hears me. I’ll try her again in 3 months. CT MRI Bonescan Ecg …. Seriously??? I’m not booking it all , have they lost their minds ?
In other news : I finally got Veoza !!!!!! I’m paying for it privately, our healthcare said : what is this , never heard of it ?! Anyways I suffer badly on this forced menopause and I’d like to have a night without severe hot flashes and sleeping on towels. Just started , I’ll update you all later on because apparently it takes 2 weeks to show effects.We keep hanging in there , love to my K sisters out there xxx
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I am on the combo for nearly 5 years, and it has kept me stable. I do have episodic pain from a hip met, but what I am finding is the side effects, while not terrible, are getting worse: skin issues, my hair has become thin, so I am going to for a pixi cut in the new year, looking forward to my new look, hot flushes, fatigue.
On the other hand, I am going to the gym and walking, and people keep telling me I look so well.
Onwards and upwards
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hey @forza !
As I sluggishly read all the thread’s pages you have been one of my inspirations. You and everyone still being for so many years on first line of treatment automatically achieves legendary status in my mind (I see you, @sunnidays !!)
Don’t feel bad or awkward delivering good news, we’re all rooting for you in here and it’s exactly the kind of news we want to hear, especially us newbies. I was absolutely lost in despair after my initial diagnosis, mainly due to googling survival rates, when I came across this thread and I partly owe maintaining my sanity to you all. Will I ever halt progression on this treatment? Too soon to tell. But it’s so promising that a lot of us do.
Quick question for all zoladex users: did any of you have a period after getting the first shot? I had a really heavy one that lasted almost two weeks. My gyno said it can happen but didn’t exactly label it normal. The ultrasound was clear. Thoughts?
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@elena_p no , no periods or spotting even since Zoladex. That + Letrozole = instant menopause. But I was on non-stop contraceptive pill before against endometriosis (very stupid).
Maybe you had an egg on its way doing its thing and still needed coming out.No legendary status , pure luck. They gave me 3 months at the start so it wasn’t all good scans and avoiding appointments.
We all go through the same thoughts in our head and questions we forget to ask and panic with each scan. Every headache is a : oh no , it’s in my brain. Every cough is a : not the lungs. Etc
I’m not sure where you’re at , but after 3 months on Kisqali my breast tumour was gone and my armpit was clean 👍
The survival rate stats are always a few years behind because of new treatments , after K there are still so many options. We are the generation that turns this deadly beast into a chronic illness. 💪3 -
@elena_p hi Elena, I got my last period right after taking my first zoladex+faslodex+xgeva shots…my oncologist said it's no problem as long as I don't get it again, and tested my estrogen levels for 2 months. Probably as Forza said, one last egg doing its thing.
Wish you and everyone here the best <3
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Numerous people do well on this combination; they might not post because they want to have a break from the cancer for a while.
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hi @elena_p
I got one period after my zoladex shot - oncologist had told me I would get one last period and then that’s it. Can’t remember if it was any different than my usual periods as it was an overwhelming period for me with the diagnosis.
There’s a number of us on this combo. Almost six months for me and so far okay other than neutropenia that causes me to have a two week break instead of one week. Oncologist giving me one more cycle and then will see if we lower the dose or keep it at two week breaks. Overall it’s been ok, some days better than others. What I realized this cycle my joint pain and stiffness is the worst when I have neutropenia. Other than that I’m working traveling and trying to enjoy life as much as I can.
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thank you all for your answers, I guess it was one last egg and it went with a bang for sure. My ovaries were empty in the ultrasound so I suppose there will be no more surprises.
Hope you’re all doing well!Elena
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@sunnidays we all want a break , the scans are relentless though. I’m going to be assertive with my new onco because she’s non-stop prescribing all the scans. In my fairly stable situation I don’t need 3 monthly everything I’d say 🙄🙄 If they all listened to my first complaints I’d not be stage 4 to now test and probe all the time.
Happy New Year 🥳
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I have scans and blood tests done every 6 months, and I am happy with that.
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I have blood tests monthly, as I'm on Kisqali/fulvestrant, but my scans are every 6 months as well.
Have been on this combo for more than 3 years. Results of my first liquid biopsy, while primarily unintelligible to me (don't see the MO for 3 weeks, so no explanation until then), do show that my ctDNA is <0.25%. According to multiple studies, this indicates low risk of progression.
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You are so right. I’m still on 3 monthly.
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Happy New Year, everyone! May it bring you health, happiness and good news always!
My 2025 didn’t end that great, my liver enzymes skyrocketed in my last blood test.. After ruling out infections or liver mets, the oncologist put me on a Kisqali hiatus till they return to normal. He said this might take weeks. In the meantime he’ll discuss with his team how we’ll move forward. I’m not sure if this means lower dose or longer breaks or a complete change of medication. Let’s just hope that I can run on letrozole and zoladex alone while they figure this out 🤞ct scan is coming up in about 3 weeks and I’m not sure what to expect at this point 😐
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@elena_p Really sorry you're going through this. Many of us have had to take some weeks off Kisqali for various reasons (letrozole is doing the heavy lifting) and some of us are moved to a lower dose. The lower dose seems as effective. I've been on 400mg for almost two years. THere are other effective drugs available. So my fingers are crossed for a good outcome for you.
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Thanks @tougholdcrow , it’s really a bummer this happened.. I was feeling quite well and confident when I did the blood test and was definitely not expecting this outcome. Now I have to go to the hospital every week for monitoring 😫
My oncologist said it happens often with K, his opinion is that I should switch to another drug but we’ll see. I’m just frustrated being in treatment for less than two months and already having to consider a new plan, it feels too soon.
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As THC said above, many of us have needed to take breaks for one reason or another. I understand your frustration and concern. Kisqali is a great drug and I would get a second opinion rather than give up my first line so quickly. Is that a possibility for you?
I recently had a two month break because of IV antibiotics to treat diverticulitis (Kisqali reduces the effectiveness of antibiotics). Just completed my first 3 week round at 200 mg rather than my former 400 mg, as MO thought it helpful to ease back into it. So far, so good. Chest, abdomen and pelvis CT done two weeks ago using both iv and oral contrast showed no progression, so fingers crossed.
Hoping things work out.
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You’re right @eleanora , I’m not comfortable giving up my first line so soon. I will discuss this with my oncologist on our next appointment. We should at least give lower dose a shot before exploring alternatives. The hospital I’m treated at is considered one of Germany’s best so not many doctors would argue with them within our borders but I have access, through a friend, to the gynoncologist dept. in CHUV in Lausanne so I’ll definitely get another opinion. It certainly doesn’t hurt (maybe the German doctors’ ego a bit but oh well 🙃)
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I have made it almost two years on Kisqali/Letrozole/Zometa and my MO is starting to deescalate to fewer appointments, saying that I may become a long-term survivor. No guarantees of course as we all know. I am NEAD and have been for a while. I mostly attribute this to the luck of the genetic draw. I sometimes think that my dad's genes are at war with my mom's genes, since she died of an aggressive cancer before her time. (A marvelous woman, by the way.) My dad is in his 90s. If there is anything beyond biological luck, I can say that I eat healthily (though I have a sweet tooth), walk everyday, do strength training three times a week, challenge my mind with good books and puzzles, have a supportive social circle, plan things for the future like trips, have a drink about once every three months, use THC fairly regularly as a sleep aid, take D3, calcium, magnesium, MSM and turkey tail mushroom powder. I have no idea whether any of these have any effect at all, but who knows.
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it’s helpful to read all these responses. I’m Stage 4 MBC bone mets. This is my 2d year on the Kisqali/Letrozole trolley. I’m 74.
My MD appts are every other month and scans at every 6month. So far, despite the grueling side effects roulette, it’s worth it all to hear the scan was good showing smaller lesions shrinking and lymph nodes resolved. Everything else is being “indolent”. Isn’t that a funny word to describe cancer cells?
Learning to refocus life to a much smaller scale and then enjoying what there is has been for me at least, a way to find joy and participate in life.
Blessings and best wishes to everyone on this path.1
