dear all from a sunny England finally.
I haven’t posted on here for a while, but wanted to see how long are patients being on Ibrance ? What cycle / years are you up to ?
I am keen to understand how generally this is being handled ?
thank you all in advance.
I was stable for 5 years.
I was on Ibrance 125mg with Femera for 5 years and then had progression that required a change in treatment. It was a wonderful treatment for me. Good luck.
hello!
Just curious what treatment you got switched to after the Ibrance? Thanks.
Hi Bella_mum. I notice you are from Canada as well so we have less options available to us for the newer drugs on the market for MBC than those in the USA which you have probably noticed. Anyway since May of last year my 2nd line of treatment after my Ibrance failed is Everolomus and Exemestane. I am tolerating them both well. Take care.
Thank you, that's what my oncologist is prescribing but I'm not feeling positive. I've had the genetic testing done and want elacestrant as I have the ESR1 mutation but of course it's not available here yet so will play the waiting game. I'm glad you're tolerating E & E well, let me know how you are doing with side effects. Where in Canada are you ?
Sun is shining today, looking forward to flowers coming sooooooon (ish). xx
Always be positive...it really does help. I really have no side effects at present...except my cholesterol has risen which is a side effect of the Afinitor. I started on a low dose statin so that is sorted. I live in western Canada...where are you? I'm leaving on a tropical vacation tomorrow so looking forward to that and hoping Spring will have arrived by the time we return. No word on when Elacestrant will be available unfortunately. Health Canada approvals are typically a year behind FDA approval and then it goes to each provincial body to decide so could be awhile. Take care.
Fairmont Hot Springs, BC - and you ?
Hi and happy spring!! My Mom had no evidence of disease for two and half years on Ibrance with letrozole combo. They found a liver lesion which led her oncologist to switch her medications because this meant the Ibrance wasn’t working as it should anymore. She’s now taking Fulvestrant injections monthly with a trial med and is doing great! God bless you in this journey!
I have been on Ibrance for 4 years and 4 months with fulvestrant. It's been a good treatment for me so far and I hope to stay on it for more years ! I had two dose reductions and have been on 75 mg ibrance for 3 years .
Edited to add I've had clear scans for 3.5 years (no evidence of disease - but I realize cancer cells are still circulating and out ).
I’m so glad to hear that. I’m on the same combo. My dr said a year when I asked. I’m lowering to 75 after only 3 mo w low neutrophils. What does OS overall survival meanwhen I see it on the papers? Do you ever get strange burning in leg? Just started?
I have had a weird sensation in one calf , intermittently but not lately . Progression free means no progression while on the medication and I believe overall survival means how long the patient survived in total. Gulp. My onc would not give me a time frame for how long the medication will work but would tell me " if / when you have a progression we will get a new biopsy and check for mutations . There are lots of options ".... average pfs was around 2 years , if I remember ? My oncologist did check me for the pik3 mutation up front as I had been on femara for 7 years after stage 1 node negative breast cancer in 2008. Stage IV recurrence 4 years after stopping femara :/ Oncologist advised me to stop femara as "my risk of bone loss was a much greater issue then my risk of a cancer recurrence ".....at the time 5 years was the recommended time frame to take the aromatase inhibitors .
I was on it for 2 1/2 years before it stopped working.
Hello! I’ve been on Ibrance and antrozle for 2.5 years. Started on 125, year later reduced to 100, now I’m on 75. Low ANC and white blood count. I have scans next month will wait to see what happens. Otherwise all is good!
On another note, I lived in Ascot for 6.5 years and loved it! It was a childhood dream to live in England. Not many so lucky!! Best wishes to your future Queen, just love both of them.
Cheers!
Sharon
Five years this month along with monthly faslodex shots.
I’ve been on 100mg and Letrozole since 9/2019 and CT scans, which I have every 3-4 months, have shown stable. Only side effect is fatigue given low wbcs at certain times during cycle. No others though so I hope to be able to remain on this treatment as long as possible. All gets to you in yours. 🙏🏻
2.5 years for me too, 75mg palbociclib as the ribociclib did not agree with my liver enzymes. Was a very well tolerated drug for me too, low dose due to low neutrophils and did experience some ulcers in my mouth towards the end of each cycle but managed that with alcohol free prescription mouthwash. Good luck to you, I hope you tolerate well with good results x
Happy Spring ! 🌷
Just seen your message this morning , and I too haven’t posted on here for a while , but I wanted to add my positive experience, so far , on Ibrance / Letrozole . I am currently on my 81st Ibrance cycle ( started Dec 2017 when NICE just approved the drug for the NHS here in the U.K. ) , and I have tolerated the side effects . I am still on the 125mg dose and occasionally get some fatigue when my white blood cells / neutrophils are at their lowest ( just a little above 1.00) . My hair texture has changed but I now keep it short . I also did have mouth sores in the early days of taking ibrance but don’t get these now . I have been ‘stable ‘ for 6 years and have 6 monthly ct scans ( next one due in May🤞).
Wish you all well x
It's wonderful to read stories like yours! I hope this continues and it gives me hope for my treatment.
Do you restart with a 1.00 count? I’m .85 and off for couple days. ?
Neutrophils should be min 1.0 on day 1 of cycle to restart, but if blood results are not within range , the authorisation to administer Ibrance has to be given by the consultant . They can also interrupt or delay the start of the Ibrance cycle, or reduce the Ibrance dose .
Thanks….they are always below that. No wonder I’ve been so tired….
I’ve been on ibrance and lertozole 7 years, with no progression. ( I was diagnosed 8 years ago with MBC stage 4 had 26 rounds of red devil infusion then lumpectomy and some lymph nodes removed, and 6 weeks radiation to breast and spine spot.Two years ago I dropped to 100 Ibrnce. I had to take a cycle off once when I had a bout with rhabdomylosis. ( which was caused by taking statins with ibrance). I hope to continue for as long as possible
Mimicking
Hope you are doing well. I have been on Ibrance for about 3 1/2 years and have been stable so far. Hoping for many more years as it has not caused a lot of side effects. Sending hugs and prayers.
Wow, lots of long-timers here. I was on it for 18 months before progression, which I was told is the average.
Hi, After being cancer free for 27 years my cancer returned. I have been on Ibrance and anastrazole for 3.5 years. Started at 125 and moved to 100 then 75 due to low neutrophils. 2 weeks on 1 week off regimen now. Was metastatic to bone , nodes and lung. PET scans 3 times a year since tumor markers don't elevate ever with my progression. So far I have been stable NED. Some mouth sores , low immunity and fatigue but manageable. Hope to keep on this for a long time!
JoAnn
I've been on Ibrance and letrozole since June 2023. My absolute neutrophils went below 1 two months in a row prior to starting a new cycle so my dose has been lowered to 100mg from 125mg. I tolerate it fairly well. I feel a little tired during the 3rd week of the cycle but still make it out for walks or a short hike. My initial scans showed nodules, nodes and bone mets but further scans showed all was stable, some regression and even complete healing in the right ribs. The uncertainty of scan results and how long this treatment plan will be effective is a great source of anxiety and fear but each of us is a warrior going through all of this. I appreciate this group. I wish you success with your treatment, some have gone quite some time with their initial plan and it gives me hope.
Nearly 8 years on letrozole and Ibrance without any other treatments—no surgery, radiation or chemo. My cancer had already metastasized when the biopsy showed breast cancer. The stronger doses of Ibrance caused low neutrophils and platelets, so I have been on 75 mg of Ibrance—3 days on, 1 day off for 21 days (16 tablets) and then 1 week off. I have 2 PET scans each year and blood tests every four weeks. My most recent scan two weeks ago shows no evidence of malignancy.
I am on ibrance…2 weeks on 2 weeks off. Almost 5 years. Had a bit of progression in my spine …had some radiation in January and having some more in the next couple of weeks. Am staying on ibrance for now
Hi, I have been on ibrance and letrozole for four years, no progression and some shrikage of the tumor at the beginning of treatment. The doasage was recently reduced to 100 mg due to low neutrophil count. Good luck to you, it is an amazing treatment.
I have been on Ibrance and Letrozole for 7 years. Still NED.
How long have you been NED on this combo?
I started on 125, for the first 2 years and then reduced to 100 for the last 5 years. This is the only combo I have been on.
Sorry, my question was how long after diagnosis did you get to NED on that combo? For me it was 15 months. Now over 2 yrs NED.
For me it was 16 months.
Fantastic!! Keep going,.
The average time on Ibrance is 2 years (24 cycles). I got exactly that. Realized I am not exceptional, just average. Disappointing! It seems you are hearing from people who got 5-7 years. For two years to be the average, there must be many who get just months, less than one year, including some on this board.
Wow! My Onc told me I could possibly get as long as 8 yrs on this combo (with Faslodex). I am in my 4th yr. with over 2 yrs now NED. I have heard from many others who got at least 5 yrs. with Ibrance although I was also told that of the two drugs that Faslodex is the heavy hitter so maybe that’s the difference. Have not heard of anyone just on Ibrance alone.
I was on fulvestrant, too. I was NEAD, too. When I had progression after two years, my onc said it was the fulvestrant that failed.
Strange that you were told 8 years. I was told 2, but that there was a patient in the practice (a big one) who was still on it after 7 years.
You do see on this board from time to time people who got much less time. They aren't writing in now.
I’m having burning sensation in my leg upper. Just had shot yesterday? SE. ?
Fulvestrant injection?
That is not good. There are several repetitions of advice on fulvestrant injections here. That you are feeling pain in the upper leg makes me fear that the nurse hit the sciatic nerve. That is, the pain is not where the injection was given, you are not sore from the injection per se; if it traveled, I infer it could be nerve pain.
I hope someone else chimes in here.
If that is what it is, you should report it and get pain medication, maybe a muscle relaxant.
Nurses often give the injections in the butt, too close to the sciatic nerve. I had to fight hard to get them to inject more towards the hip.
Do you think that is what happened? Very painful.
I started on Ibrance / Letrozole Jan 6, 2016 - 8 years and 3 months ago.
I have 8 years on Ibrance with no evidence of disease at all. My oncologist said I would go on fulvestrant and Ibrance if letrozole and Ibrance fails.
I do not know how an oncologist can predict how many years it will be effective because it is such a new medication! I’ll bet that some of the people in the early trials are still on it
hi - I am in my 4th year of Ibrance with Faslodex shots as first line treatment. Have been NED for over 2 years now. Hope to get a lot more time without progression with this combo. Best to you…
I started ibrance and anastrozole, September 2019. Took about a 2 month break for a hip replacement in 2020, and another month break for some dental surgery.
I have changed dosage during those 4 plus years, started at the strongest, now at the 75mg. 3 weeks on one week off.
Hi there!! Nice to meet you! I was on Ibrance 125mg along with Anastrozole for 18 months when scans showed “something” in my lungs, but the radiologist didn’t exactly say it was cancer. I currently have bone only mets. This was in January. My doctor wanted to enroll me in a clinical trial so I came off those meds for a month and then was denied the trial. She immediately wanted to put me on oral chemo, believing that the Ibrance failed. I wasn’t so sure it was the Ibrance, I was convinced it was the Anastrozole since I was on it for many years after my first diagnosis of breast cancer in 2010. I convinced her to put me back on the Ibrance with a different kind of hormone blocker. She agreed and I am now back on Ibrance 125 mg with Fulvestrant shots every month. I just got the results of my first blood test since starting this regimen 6 weeks ago. My tumor markers have come DOWN!!! Yay!!! I am so happy because my body has tolerated Ibrance so well with very little side effects. I almost feel NORMAL!! Just a little tired. I will be getting scans in May. Fingers crossed I have no progression!! I hope you have great luck with it. If I could stay on this drug forever, I would be so happy!!!
Love and hugs,
Jody
I've had similar experience. I had a mammary lymph node getting bigger. Now it's shrinking. X
I started in May 2020. Had two shorts breaks of one and two weeks for infections. Changed from letrozole to fulvestrant in September. I was keen to stay on palbociclib and so was my oncologist, so changed the accompanying drug which is working very well. X
I’ve had excellent results since January 2018! It may be a little rough at first, but I’ve come to manage the side effects. A daily Claritin helps with bone pain. Good luck and God bless.
And hello back from sunny Texas!
I've been on Ibrance/letrozole (first line of treatment) for just over seven years - the last year on 75mg. It's been a great drug combination for me, but it may be coming to an end because the fatigue and constant muscle pain are starting to affect my quality of life.
I was on ibrance and fulvestrant for a little over 4 months. It helped my lung mets a lot, my liver mets some but my bone mets progressed a lot. I then went to MD Anderson and that doc changed me to Xeloda.
Hello I have been on Ibrance since June 2019 so close to almost 5 years now. I take it with letrozole and lupron injections. It was able to take out all of my mets (liver and clavicle). Thanks be to God!
Hi,
I’ve been on Ibrance and anastrozole for almost 6 ½ yrs. At about 5 1/2 yrs, the 100 mg dose became toxic, and I spent 2-3 weeks in between cycles waiting for my blood counts to recover. Then I got two recurrences, which were treated with radiation. Now I am on the 75 mg, and in remission again. Dr will probably change me to fulvestrant at some point. The oncology nutrition Dr put me on Metformin, so I’m hoping that will help me stay on anastrozole a little longer.
Best wishes to you.
I was on Ibrance with letrozole for two years without progression. When CTs and markers indicated it was no longer working I switched to Kisqali and fluvestrant with continued progression, so had a liver biopsy indicating mutation of my cancer. I was no longer strongly ER+. Since then I was on Xeloda for 9 1/2 cycles without improvement.
Hi I have been on the same drugs for a little over 4 years. Now I will be changing the regime as some cancer has grown . The new line will start in May Damn’
Lou Anne
I’ve. Been on Ibrance 125 and faslodex for 5 1/2 years with no progression. Ive Tolerated the meds well. I’ve had no serious side effects. My hair has thinned a bit but it isn’t noticeable because I had unusually thick to begin with. Oddly enough my eyelashes fell out, they’ve grown back but are different. I get scans every 6 months. Next ones are due in June,
Early on I realized that I have no control over anything except following my oncologist’s recommendations, which I do carefully. No point in worrying, it won’t help.
started treatment in Aug 2015. still on first line of treatment. NEAD since Mar (?) 2016. and have been doing ctDNA testing for past 1 1/2years. all 5 tests have been ‘0.00’
Hi what type of treatment you are using?
Ibrance, Anastrozole, Zoladex. The Zoladex has been stopped.
Hi, diagnosed mbc March 22 with several mets to right lung, original cancer 2011. Er +, prog-, her 2-. Started on ribo , letro and faslo. Extreme (highly unusual (rare?) reaction to ribo. Went into liver failure. Now ibrance since sept 22, some tumour reduction, now stable. Ca 153 in normal range. Generally tired but living a full life. Thankful for this drug 🙏. Best of luck with your treatment
Hello! I have been on Ibrance/letrozole for 6 years with no progression.
I was only diagnosed a year ago and have been on Ibrance since. It seems to be working.
It is so encouraging to see how others have done so well for such a long time. This is not the type of information your oncologist would share, although mine has admitted that she does have some patients that have been stable longer than the report 2 years.
hi , I have been on this treatment for 3 years now. Having scans in May so fingers crossed all remains stable. 🙏🏾
Hello England! I’ve been on Ibrance for 3 years
125 3 weeks on and 1 week off
Feeling good, hope you are too ❤️
Taking Ibrance and Faslodex 
Stopping Ibrance for the time being
Non-standard Ibrance schedule
Ibrance expensive
