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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