Hi Everyone,
So sorry about all this Covid we are all going through. Prayers for everyone .
I had a quick question for all of you.?
I had a scan in December and nothing had changed with my only met(2mm on my spine) but of course the fear kicks in again.
I’ve been on Ibrance(first line) for 2 years and was wondering if anyone has been on it longer/shorter?
Trying to prepare myself for what might come next.
Lots of love,
Paulinaxxx
Hi, Paulina,I was on the Ibrance/Letrozole combo for 33 months before mild progression. Since August, I've been on Faslodex monotherapy. God bless you! Prayers for a long stretch on Ibrance!
XXOO Linda
Thank you so much Linda!
Sorry pressed reply before I was done!
Sounds like you got a pretty good run with Ibrance!
Thank you so much for your prayers.
Prayers to you too.xx
Hi Paulina, I'm going on my 6th year of Ibrance and Faslodex. Unless something drastically changing, I plan on staying on it for as long as possible. I went through a period, last fall, where my tumor marker numbers just kept rising. I underwent (twice) the CT Chest scan, an MRI (my first), and two full bone scans. All of them showed nothing. My onc could not figure out what was going on. 2020 was an extremely stressful year for me, and not because of COVID (I hardly had a chance to even think about it). I thought maybe it was the stress. And I think it may have been. My last scan in Dec, my tumor marker went way down. I'm hoping the same thing happens this month. Since my diagnosis of MBC, in 2014 (original in 2005) I've hardly had time to think about it (I know that's crazy) because of so much else in my life. But this year is mine! I'm turning my full attention to taking care of me.
I wish you all the best on this journey of ours. Not a journey any of us want to be on, but what a great group of women to travel with!!
Melinda
Hi Melinda,
Wow that’s amazing!!
Gives me so much hope.
So great that your scans clear. Six years on your first line of treatment! You are going to be on this earth for a long time!!
So sorry to hear you have had a bad year, that really sucks.
You definitely need to look after yourself this year.
I know it’s easier said than done. Even with Mbc life goes on.
Thanks so much for taking the time to message me.xx
Ps. I just went to follow you and saw the you are Canadian- me too! I live in the uk though.
It’s really weird, but I have seen so many Canadian women on insta with breast cancer?
I’m starting to wonder if something was in the water!!
Hi 🙋♀️ good morning. I am 26 month. Combo ibrance - Letrozole
HI! I just started my 59th round of Ibrance. That has been my primary drug since being diagnosed MBC in May16.( original diagnosis in '96 mastectomy and chemo then reoccurrence in '09- radiation and arimidex for 5 years) I took 100 mg Ibrance paired with exemestane for 3 years, then progression. We tried pairing it with Letrozole for 2 months but progression continued. Now since Oct '19 I have had Faslodex injections with it. Happy to say , it slowed the progression and we have stayed on that protocol. I will have a scan in a couple of months and hope to be able to continue with it.. Good luck as you navigate this disease!!
So good to hear that there are lots of different options and formulas!! Lots of prayers for a good scan.
Thank you.xx
That's so hopeful. I had just over 18mos on Ibrance/Arimidex then had some slight progression. I have just had a month on Faslodex as a mono treatment then my Onc said I will pick up Ibrance again next month.
My markers have been stable since we started the Faslo, so he is thinking perhaps the Arimidex was the culprit--I will have scans in March to check. it is interesting that your Onc, like mine, was willing to do some trial and error.
This is not pure science, clearly! There is also a bit of strategic spaghetti at the wall it seems.
Pauline,Been on Ibrance/ Letrozole for almost four years now. Had a PET last month and all was still good. I worry with each scan. Best of luck to you. Blessings, Hannah
I was diagnosed de novo in January 2016, have been on Ibrance 125 mg and letrozole also first line. Scans in December showed some progression, switching to Ibrance 100mg because of low neutrophils since changing from capsule to tablet. Hoping that progression is due to 2-3 week delays in my restart of Ibrance and that lower dose will fix that. Hate the thought of losing Ibrance it has been a blessing.
Amazing!! That’s interesting about the tablet switching. I’m still on the old one.
So good to hear all that time on Ibrance!!xx
I am new to Ibrance/Letrozole; only in my 4th month. No progression so far (last scan on 1/8) and my tumor markers came down quite a bit. I'm on 125 Ibrance, and I have always tolerated it well. (Well, in terms of how I feel. I have side effects, of course.)
Finding this group was the best thing that happened to me after diagnosis. For the first time, I was seeing a bunch of women talking about long-time success on these drugs and lifespans that well exceeded the obsolete stats online. I keep telling myself that... if I am lucky enough to stay on the Ibrance/Letrozole for 4 years... (my goal, even though... of course... I don't have any control over this outside of taking care of myself as best I can), the scientific landscape will be different by then. There are already other options available to us, sure. But I hope there will be breakthroughs in the coming years that keep us all around to natural, elder-year life expectancy. And without the kind of toxicities and side effects we must live with now.
Hey! It’s so great when you hear the success stories.
I’m the same I’m always thinking the same thing, that I get to 5 years on it and something else comes along....
You will have many years to come!!
Best wishes XX
i have been on Ibrance since 2015, along with Anastrozole (was Letrozole in 2015), and Lupron (now Zoladex 2020). stable scans. NEAD in March 2016. next PET/CT scan in March.
Wow!! That is amazing. I had no idea it could work for as long as you ladies have been on it. Good luck with your scans!!xx
I have been on Ibrance/Letrozole for 2 years and 7 months, no progression. Just had a bone scan the other day, and am waiting for the results.
Amazing!!! Good luck with your up coming scans.xx
thank you Sandra. i continue to accept life one day at a time and results as they're provided. i know results can change and a new acceptance would be required. i'm sorry to hear that "you will never be NED." though i was apprehensive about Ibrance, i believe it to be a contributing factor of how well this body is responding and performing, even with manageable side effects and some collateral damage. our scans are on the same day. i will keep you in my thoughts for your scans to be what you want them to be. heather
It’s so encouraging to see that so many are having long success with Ibrance! I have been ion 100 mg for almost 8 months and doing well! Hope and pray I have some longevity with it too!
Just celebrating (?) my 1 year anniversary of Ibrance!
Congratulations Bluhydrangea on sticking to it for one year... Nice read this morning
Hi I have been on Ibrance and Letrozole since August 2018 - was diagnosed with primary in August 2017. I also have Zoladex every month. Little side effects except creaky bones. Again a busy life with children so life takes over and now I have days that I don’t think about it - which is good for me 
! I hope my regime carries on also. Good luck to us all !
The tumors were my in lungs. The largest was 2.8 cms - It did decrease on last scan again - and largest is .8 cm now, and little ones hardly seen. Good to hear and being part of the platform, especially to share stories from U.K. to US ladies
Ibrance and immunity
Off Ibrance
Ibrance, Letrozole and Denosumab 
Non-standard Ibrance schedule
Stopping Ibrance for the time being
