I have mets to the liver only. I have been on Ibrance and letrezole since January of 2023 with no progression. Everything seems to be going well, but I am afraid the combo will stop working since it has almost been two years. I can’t stop worrying. Anyone have any advice for me?
Thank you
I am in the same position but with bone mets. I just keep moving forward and living in the present. I find the better I feel, the less I worry, so take care of yourself.
I have been using ibrance for 6 years. You can stop worrying. I know it’s easy to say but hard to do Your almost at the point where you don’t think about it constantly. Good luck with your treatment. There are reports of women who stay on ibrance for 15 years or more.
From my research it looks like Ibrance was approved less than 10 years ago.
If the patient was part of the Phase 1/2 clinical trial when the drug was titled PD 0332991 (before it was given the Ibrance name) NCT00721409 it started in 2008 so it is possible to have been on it right from the infancy stage. However I expect there are very few patients that would be still taking it....so I imagine the reports of "women" still taking it will be extremely rare and few and far in between. Just clarifying. Take care.
That’s a good thought. Would love to hear from some who were in the clinical trial. That would be very encouraging.
Really, 15 years or more. Fantastic! My oncologist said it could work for a long time but gave me no numbers.
Ibrance was approved by the FDA in 2015, or 9 Years ago. It was in use prior to FDA approval. My onc gave me the 13-15 yr survival information. I didn't ask for her sources of information
Yes I’ve just been past that ‘point’ and yes it’s hard to unknow information such as the average time for progression. Just consider that if it’s ‘statistics’/numbers, why shouldn’t you be in the half of the group who are above the median and enjoy every day that you have after that median. Remember too that it’s only ‘statistical data’ taken from studies done many years ago and more people are living well with palbo/letrazole. So set a long term goal, then go out and celebrate every day you get past that old median figure.
I have been on Ibrance and Letrozole for bone Mets. Had a bit of progression in my spine at the end of January 2024 and they did 5 days of radiation and stayed on the same drugs and so far so good. Hope you continue to do well💕. Theresa
I’m in the same situation. I have been on Ibrance and Anastrozole for 4 years now. My oncologist said that’s a long time to be on and stable. My last scan last week showed possible progression in a bone spot. She is discussing it with radiologist at monthly meeting next week. If they agree it’s progressing she told me to stop worrying because she has lots of drugs to switch to. She truly is my therapist too as she always tries to calm my worried mind. All my best to you.
Hi, I have had the same worries as you. When I was diagnosed my oncologist gave me the 2 year stat. I have now been on Ibrance/letrozole for 4 and a half years and still doing well. I nave found that over time I have learned to live in the moment. I still have days that are not so good but overall I am able to set aside my anxiety and enjoy life. For me keeping busy helps, but eveyone is different. Do things you enjoy and be with people you love. My best to you.
I got seven years on Ibrance and letrozole for my bone Mets. Recent scans showed progression in the bones as well as two spots on my liver. Next week I begin Verzenio and fluvestrant as my second line treatment. I’m very nervous about changing treatments. I haven’t heard of many getting more than two years on Verzenio but that’s what they said about Ibrance so I’m hoping for the best. Best of luck to you on your Ibrance journey. Hope you get many more years from it.
hi Frenchgirl69,
I’ve been on Afinitor and Exemestane since 2007. I was down to a very low dose of 2.5 mg Afinitor. In the last several years I have had 5 small liver mets…..all successfully treated with gamma knife radiation alone, no other mets. 3 of those mets happened when I was given a 9 month “break” from the Afinitor. Definitely back on it now!
All the best to you!!!
Since 2007. That is very encouraging.
Hi Frenchgir69! I have been on Ibrance and Fulvestrant for almost 4 years as my first line treatment. My Oncologist told me when I started that combo he had patients who had been on it for 8+ years. I was still in shock at being diagnosed MBC after 7 yrs in remission and thinking I only had a short time to live. He said when progression occurs there are so many more drugs/combos to try that can add many years to survival while we wait for a cure. I came away with so much relief and hope. Also my neighbor is in her 23rd year of living with MBC and has been on Ibrance longer than I have. My combo got me to NED (no evidence of disease) 2-1/2 years ago and with only few side effects that have allowed me to have a great quality of life. Praying you will experience the same long run. Try to relax and stay positive. You got this!
Hi FG, wishing you lots more years on this treatment. I have also just passed 2 years, mets to right lung. I am feeling well but have the same anxiety you do. Fingers crossed for us both Kx
Frenchgirl. I was on that mix for 5 years. Try to stop worrying.
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