Hello all - I was diagnosed with breast cancer metastasis (hormone+, HER2-) in Nov 2019 in my liver and bones. My only line of treatment has been Ibrance 100mg and Faslodex injections 1x a month. My last PET scan in May showed no evidence of disease. It was certainly something to celebrate, but as we all know our diagnosis is one that never actually goes away. I have 2 questions today. I am reaching out to all of you because I have found the best and most informative information on this site. I understand statistics are just that and everyone is different and unique but I really just want a perspective from those who have traveled this road. 1) For those of you on the same protocol, have long have you been doing it? I have heard that any protocol reaches a plateau and then another line of treatment has to begin. And 2) for anyone who has reached no evidence of disease (NED), how long have you or did you remain that way? When I was diagnosed I thought I had 6 months to live. Now that I've responded so well to treatment and have NED, I'm thinking I might have a few years?? I greatly appreciate any and all responses. Feel like I'm living with a time bomb even though I should be celebrating the treatment working ... so far. Thanks.
Looking for some perspective - SHARE Metastatic ...
Looking for some perspective
Hello there Ndastrogal, brilliant news about the NED. That’s definitely a big cause for celebration.
I’ve liver and bone mets too. Diagnosed in Feb 2018. I’ve been on the Ibrance 125mg (and Letrozole) for about 18 cycles+ (I’ve stopped counting). I still have tumours but they are stable . . . They don’t seem to be doing much thankfully.
I suppose we’re all living with those dirty ticking time bombs whether we’re NED or not. But the thing to remember is that some bombs fail to explode and some can lay dormant for many many many MANY years.
In the meantime we all should be busy living 😁
Ibrance didn’t work for me. I haven’t been NED in 2 1/2 years and Onc says I have several treatments left to try. It seems many women have years, not months, especially if your mets were bone only (mine aren’t).
Hello, congratulations on the NED. Stay positive and keep exercising . Also You can keep your physical health in top shape
by sticking to a plant-based diet(no meat, all vegetables and soy foods)
Meats contain too many bacteria and they turn our body into acidic
environment which cancer cells thrive in. Whereas vegetables and fruits
nourish our body and turn body into alkaline which cancer hates.
Welcome! I’ve been on Ibrance and Letrozol for 18 months followed by Ibrance and Faslodex for the last 6 months or so...I don’t count! The two scans after I started treatment were NED but then the mets showed back up just as fast as they went away. I have had extensive bone mets from the beginning, but my doc said with all the treatment lines out there I probably have 10 years, at least, and possibly more. I’m not counting on that, but I am counting on quite a few more good years. Don’t think about numbers, think about quality and do what you can to make these good years. In many ways we have been gifted with the knowledge that our time is finite, and that we should purposely fill it with the things that give it joy. Nobody should be putting a time limit on your life. Celebrate and enjoy your NED status, it will come to and end, but it definitely will not be the end of your life! Hugs and welcome, Elaine
I have been on Ibrance and Letrozole for 2 years now, and have been NED since my first PET scan after starting that treatment. I also assumed at first that I would not have long to live but I don't feel that way anymore. I don't know what the future holds, of course, but there are so many new treatments out there that it give me hope.
Thank you all so much. Such great encouragement here!
I have took Ibrance and Letrozole for 25 months before I had to switch to chemo due to major progression. My oncologist told me the average length most people are on Ibrance is 18 months.
Congratulations on your NED. I have never had improvement let alone NED. Enjoy this and try not to worry about the “when”.
I was diagnosed with mets in Feb 2018 to lungs and ribs and I was very short of breath and in pain. I had numerous fractured ribs, I guess from aggressive coughing. I was prepared for the worst and very depressed. I was put on Xeloda and then after 8 months I started to feel much better.
The xeloda stabilized the cancer and I was put on ibrance and letrozole in December 2019. I feel great now. I am enjoying life. Those thoughts of dying do not consume me anymore. I watched a doctor speaking on the Living beyond Breast Cancer online conference a week ago and he claimed that the doctors expect Ibrance to work 3 years, so I thought that was good news. I know it varies. I get the results of my 2nd scan after starting the Ibrance tomorrow.
Keep checking this site. It helps me to hear others' stories and makes me realize there are many treatment options out there.
Hi there
Ned is fantastic news. You are probably still reeling from your initial diagnosis though. You will settle into your new normal, and with a bit more time these thoughts won’t consume you and you can get on with living.
Clare x
Hi 👋. I take ibrance +letrozole+Xgeva+Zoladex for 20 cycles The last pet scan showed NED. I hope for much time
Thanks. I guess we all vary but it sounds as if there are many more treatments to try.
Recently diagnosed metastatic 
NED
Diagnosed June 2015...
Stacy
