Hi , I am happy to be back on this group (having been sidelined by a car crash) .
I have a query if you all could pls help? I see posts from people who, happily, get many years on their first line treatment of ibrance. I note however that many of this population are NED.
I am curious here about the non- NED population and wondering how long you all have been able to stay on ibrance? I am in my 3rd year of ibrance treatment (full dose). My cancer markers are within normal range but not NED. Many thanks for taking time to read this 🙏
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Kahe
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I just completed my 4th year on Ibrance and still stable. I have a very small tumor in brachial plexus area that appeared almost 10 years ago after my initial breast cancer diagnosis in 2001. So I’m not NED and don’t think I ever will be but still doing very good all things considered. I go to M D Anderson in Houston and just had checkup.
Same here: metastasis after BC in 2009-10 and diagnosed in 2019 with MBC to spine (T11). I’m on Ibrance 100mg and Letrozole and my CT scans have shown stable so far. My Onc says it’s as good as it gets in my case and I’m grateful.
Hi Kahe. I was diagnosed in May 2018 De Novo MBC with very extensive bone mets. I will never be NED....stable is my criteria. I had 5 successful years on Ibrance/Femara before I had to change to my 2nd treatment line. It was a wonderful treatment. Personally my oncologist says that unless a person has just minimal disease of bone mets that she doesn't believe in the term NED because the bone lesions remains there they are just sclerosed(hardened) and thus here classified as stable. I think it is dependent on where you live as to the use of NED in general. Regardless stable is the best words that I can hear with living with MBC. I have been on my 2nd line of treatment for 16 months now and going strong.
I hope you recover quickly from the car crash and get many more years on your 1st line. Don't fret the NED posts...some can be misleading in my opinion. Take care.
Dear Awesome4ever, thank you for taking the time to answer. So pleased to hear you continue to do well and really hope that you will be awesome forever. Take care K x
Same explanation I’ve had for not being NED. Good to know it’s not uncommon. Doing well so far on same treatment as you and this month marks my 5th year. Hoping to continue as little side effects other than fatigue and low WBC’s. May I ask what your second line of treatment is?
Hi KS. My second line of treatment is Everolimis and Exemestane. I live in Canada where we don't have the same options for drugs so quite likely this regime will not be offered to you. However I've been on it since May 2023 with really no side effects. Another bonus is that you don't have to worry about low neutrophils or WBC's with these drugs. After living over 6 years with this disease now I do sometimes feel fatigued but that's a given when you body is fighting cancer. I hope you continue to have success with Ibrance and that when you eventually have to move to your second line that it will be good to you as well. Take care.
I live in USA and have been on Afinitor (Everolimis) and Exemestane since 2007. It’s been my first line of defense. Weaned down to only 2.5mg Afinitor. They took me off for a 9 month “rest” and I grew new liver tumors. Back on it now!!! We have it here but they seem to consider them “older meds” and don’t seem to offer it as often as the newer meds.
Howdy I am in NYC at Sloan Kettering and on Afinitor Everolimus and Anastrozole. Having my first scan on it in a few weeks but so glad u had no side effects as I usually don't, but this drug has thrown me for a loop. It raised my blood sugar sky high, raised cholesterol, constant loose stool and I mean constant..exhausted..very tough drug for me. If it is working on the BC I will put on my big girl pants and continue but boy oh boy it is a rough one. I heard most people get off of it. I was on Kisquali for only one month but that raised my healthy liver enzymes. Soon as I got off of it down they went Sad I could not continue. The best of everything to all of you.
So sorry you are having issues. Oberammergaux2 replied to me but I think it was meant for you as I am not experiencing any side effects from the Everolimis. She gives some good recommendations so take a look. Hope your upcoming scans show it is working.
So wonderful to hear of your longevity on this combination. It certainly gives me hope. I read your bio and certainly your surgeries and other treatments have added to your success on this regime but as we know each one of us react to various treatments differently. Yes it is an older drug and was initially developed for prophylaxis of organ transplant rejection so it's got a strong background. Let's keep going. Thanks for sharing your inspirational story.
Perhaps they could lower your Afinitor dose? The original standard 10mg was “undoable” for me. I do have HIGH cholesterol with it. I have found putting the tablets inside empty gel caps (Amazon) helps with mouth issues. Exemestane is virtually a walk in the park for me.
I was on this treatment for a year before it started to increase my blood sugar levels. We had monitored it with every monthly labs since I started. With my last labs I got my HGB A1C checked and it showed I will just now tipping to the diabetic criteria. I'm not diabetic so I don't plan on doing finger pokes and stuff...as we both certain this is treatment induced hyperglycemia and once the treatment stops it will go away. However I'm in no mind that I will ever stop taking this for this particular common side effect. 3 weeks ago my oncologist and I decided I would start on a low dose Metformin once a day to counteract the effects. I've been on the treatment since May 2023.
If you are an insulin dependent diabetic you will want to discuss the what-if's with your endocrinologist before starting so a plan is in place. Good luck.
well the research trials for palbo/letrazole give a median time for progression free survival and overall survival but as these trials were done several years ago safe to say timescales will probably have got even better, and now there are even more choices to swap to if the cancer mutates. which is all encouraging and reassuring. I’ve been on your first line combination for almost 3 yrs albeit with a 4mth break for major surgery and my still scans showing stable. Original tumours were grade 3 >8cm pleomorphic lobular tumour and 19/34 positive nodes some of which had already got extra capsular spread. This was probably was already de novo metastatic in my spine though had 11 wks of paclitaxal at first before that diagnosis which creates its own problems. I feel grateful for every day that I live past that median for progression (but still pissed off that I have stage 4 cancer at all) and say a prayer for those who aren’t so lucky. I think everyone on here with stage 4 is truly amazing for their resilience in getting up every day with that knowledge of inevitability but my hope is that we hang in there til that medicine arrives that allow us to live out our days to old age albeit with cancer.
Thanks Bike Babe. I've learned some new terms from you😉. At the start of my treatment my oncologist told me that 2 years is the median progression free survival for patients on Ibrance. Having reached that 2 years (in the blink of an eye....where did those 2 years go), I am feeling a little anxious but so grateful to be doing well and stable. Agreed.... we are all warriors here. Appreciate you taking time to answer and wishing you all the luck possible🙏🙏
hi Kane- i think we’re at same point. I’m grateful for every day after the 26th month point for progression though can feel myself getting more ground down by extreme fatigue. As I have lobular i often assume the scans just aren’t picking it up but guess it doesn’t really matter and main thing is to concentrate on living. Wishing you well and keep in touch
The worry that scans arent picking up everything , must be so stressful and tough for your head to manage ❤️. I also suffer fatigue , aches and pains. My answer to both is exercise which i am lucky to be able to do. Kx
I was diagnosed in November of 2019. I’ve been on ibrance since December 2019. So almost 5 years. My scans have remained stable. My doctor doesn’t use NED, just stable. She says that the best news to hear. Thank you Lord!!!!
Sorry to hear about the car crash……hope you are doing well💕. I have been on ibrance and letrozole for just over 5 years on the lowest dose. My condition is stable. Had some progression in my spine in January/2024 so had 5 douses of radiation.
I am beginning year 9 on Ibrance and letrozole—first and only line of treatment. Even though I might say that I have NED, there are extensive bone Mets all over my skeleton. They are not progressing, but will always be visible on scans.
My neutrophils and platelets are always low. Barely enough each time to start a new cycle of Ibrance. I’m on 75 mg—3 days on, 1 day off repeatedly until I reach day 21. I take a total of 16 tablets in the 21 day period then have an entire week off before starting Ibrance.
I'm four and a half years on ibrance but changed letrozole to fulvestrant last year. I have stable bone disease and a decreasing nodule in mammary lymph gland. Not expecting to be NED, but my oncologist thinks it's all great. X
I’m in same situation. Been on Ibrance for 4 years now and all has been stable. Last week’s scan showed possible bone progression. My oncologist is discussing it at their monthly meeting with radiologist. If it’s progression she said not to worry my mind because she has lots of drugs to switch to. All the best to you!
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Sad I could not continue. The best of everything to all of you. 
Progression on Ibrance
3 years on Ibrance
Gastrointestinal issues on ibrance
Adding Ibrance to Letrozol after it stops working on its own..
How long until Ibrance makes you feel better?
