Ribociclib/Kisqali with Letrozole - Any one on this combo?
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@deedles13 I totally get what you are saying, and refocusing life seems to be a feature of growing old for all of us, in a good way! This thread is somewhat quiet, given all the people who take this medicine now.
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Hello and thank you.
Many of us up in years were probably doing that, then BOOM…a rapid increase in learning to adjust.
I’m trying to make it fun when I can, I feel very fortunate having a lot of emotional and physical support.This is a bewildering part of life, though.
My husband had a very unexpected quadruple bypass the day before my dbl mastectomy. Our daughters came through like troopers being there for each of us in different hospitals and all the stress on them humbled us and we are so grateful to them.
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hi ! An UPDATE for women who were forced into a medical menopause and suffer badly from hot flashes etc. That’s me too.
Taken Veoza for over a month and it works 🥳🥳🥳 my sweats have gone from most of the night and several times a day to maybe 1 or 2 a night. Magic ! unfair I suffered for 6 years whilst it had to be approved at so many levels. But 👍
Maybe this helps someone , I had to advocate hard because not one doctor had heard about it.
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Hi Ladies, Has anyone on the Kisqali/Letrozole combo experienced a small increase in tumor size and elevated SUV while on this combo? If so did you stay on this treatment plan? Just had my PET Scan 2.5 years on Kisqali and it’s the first time my numbers were slightly up. Thank you.
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Hi @dah925, I’m probably not who you are looking to hear from as I’ve been on this treatment for only a year and had great scans till this last one. There was minor elevation in SUV in a few of my ‘innumerable’ bone lesions. My tumor markers are trending down but are still very high. My MO is hesitant to change my treatment and gave me the Guardant test to get a different perspective. Waiting on results and ultimate decision on possible changes in meds. The increases were very small and I am still considered stable but, to me, any increase is a progression I don’t want. I’ll let you know what is decided.
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Thank you @eddiej. I appreciate your response. I will be interested to hear how your doctors proceed. All the best to you for some good news to come your way.
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@dah925, my markers are gradually rising again, they are up at 80 now, having dropped from 200 to 34 after initially starting treatment. They hopped around the 40 level for 18 months but now there's a slow but gradual rise. My onc. says that he takes an overall view and doesn't rely on tumour markers alone. Which is nonsense as he was galvanised to change meds when markers hit 200. I'm curious re what the view is of tumour markers in other countries
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Hey ladies,
Just checking in after a 5 week ribo hiatus and a restaging ct scan that showed progression in both my breast tumor and the mediastinal nodes.. Also my tumors are now marked HR low + and HER2 low + which means the hormone suppressants aren’t helping much anymore. The initial plan was to switch to Verzenio once I stopped taking the steroids for my liver enzymes. But now I’m scheduled to start IV Enhertu in a couple of weeks. This is a situation I was not prepared for and there have been a lot of tears. I was really hoping to see results from my first line and treat this with pills, like so many other people do, but it wasn’t in my cards, I guess.
I’ll still lurk around and read about your success stories, you were the first people who showed me that there may be a possibility of a long quality life despite MBC. But I guess I’ll start looking for forums that match my treatment plan better as well.Stay healthy and hopeful 💜
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Good luck with the new treatment, dear @elena_p. I'm so sorry you had to move on so quickly from Kisqali but I know there have been people here surviving a long time with many treatments. I hope we can all stay ahead of the game!
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Anyone been on this combo for a yr then told it's normally time to stretch out the time off?
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Hi @70charger , I have been on this treatment for 2 years 4 months. Other than a 3 week break for low neutrophils I have been on a 3 week on, 1 week off schedule. That being said, everyone’s treatment plan is different. There are others that take as much as a month off . There are many people on this combo for long periods all with different plans. Here’s hoping this combo is successful for you for a long time.
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3 on 1 off is what I've been on for a yr now. At my appointment the other day I was told this is the time now where they start to stretch out the time off. I feel like they are trying to slowly speed up my end as I'm on palliative care.
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I am so sorry that you are going through this. Are you able to get a second opinion?
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i have been on this combo for two years and there was never any suggestion of tapering off. I am on 400mg 3 weeks on 1 week off. I am at a major cancer center.
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I don;t think I can get a second opinion that's why I came here lol to get everyones opinion
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During my 2 plus years on the combo at 600 mg 3 weeks on 1 week off the doctors have never mentioned stretching out the time off. I only had one break where I had a three week break instead of one week due to low neutrophils. You may want to check on Novartis Kisqali website.
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Hey all!
Thank you so much for your wishes, I had my second infusion yesterday, it’s a once every three weeks treatment. I never had chemo before and this is part chemo, so I didn’t know what to expect. I’d say it’s overall tolerable although I did feel like roadkill for a couple of days during the first week. But it’s also no walk in the park, my neutrophils went down to 0.3 and by the end of the third week I had lost half my hair 😭. I was also delayed to get the second infusion by one week due to suspected infection which thankfully was just a false alarm. There’s weekly blood tests and other uncomfortable things but I’ve heard that it gets better over time and I do notice a difference in my breathing, hopefully the next scan will show regression 🤞
I hope you are all doing well and are enjoying or working towards your treatment goals!!
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Showing a bit of early progression on this combo after 2.5 years - has anyone else experienced this? I’m wondering if perhaps a switch to fulvestrant but not sure if kisqali would continue or not?
See Onc Friday…
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@mswife My understanding is that there are different schools of thought on what to try next, so it's a confusing time. Are you at a major cancer center?
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Hello all. I'm new to this forum. I have been on Kisqali and letrozole since April of 2024 with only a few minor issues and pauses. As of this past Monday, I am on my off week and will see my oncologist on Monday. Last week I developed a very tinny ringing in my ears which has not abated. I haven't seen this as a common side effecdt and was wondering if others had experienced this. I will be talking to the doctor on Monday about it, but it has never come up before. Thanks.
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@marchmbc29 Welcome. I'm really glad the treatment is working, and it's a good sign that you've made it past the two-year median PFS for Kisqali. I have had tinnitus for many years and it always gets worse in allergy season, spring. It's a royal pain, but a pretty common condition. I suspect that is what you are experiencing.
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@marchmbc29 I had a similar experience. My oncologist sent me to an ENT as she said it was unrelated to my treatment. I had some minor hearing loss and some buzzing in one of my ears. I was treated with prednisone and the issue resolved. I am happy to hear the Kisqali is working for you! I have been on the same combo for 2.5 years.
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Thank you so much, @tougholdcrow. It was new to me, andI didn't know what it meant. I suspect you are correct. My sinus, are part of the problem. Thanks for the quick response!
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Thanks to you, dah925. I appreciate the help. I am grateful that the treatment has worked as long as it has and pray it continues.
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