Hello, just came across this forum nice to see so many people having good results with ibrance, I am hoping to be the same early days... for me has anyone been on this medicine longer than 5years they say it works for 2 years for metastatic brest cancer..?
Taken ibrance / letrozole combo... - SHARE Metastatic ...
Taken ibrance / letrozole combo...
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Millymilo99
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I hope you get a good run on this combo ! I have been on it for over 7 years now ( my first line treatment since my secondary breast cancer de novo diagnosis late 2017) , and have tolerated it well . I have even managed to remain on the full 125mg dose , but many ladies do well on the 100 mg or 75mg doses too . I have had side effects but these have diminished over the years . I am 61 and live in the U.K. .
If you have any questions please do get in touch x
Thanks for your reply, wow 7years do you mind if I ask you where your mets are I have them in my lymph nodes, most people I see have bone mets on here I am 65 and live in nz not seen anyone else from new Zealand on this site. Take care...
Mine are bone mets too, but they have been ‘stable ‘/ sclerotic for over six years now . I had 16/18 positive nodes found in right breast tissue after my right breast mastectomy surgery. Then a bone scan was performed and my bone mets discovered.
There are a few ladies on here from NZ , Australia , Canada , U.K. and Europe , but the majority are in the US .
😃 thanks... good luck!!
I appreciate reading of your success with Ibrance. Thank you for sharing that!!
I got 2 years
I was on Ibrance and fulvestrant for 5 years and one month . Recently switched to Kisqali / fulvestrant. My Mets were all distant lymph nodes in my chest and my left superclavicle node(s). Ibrance worked great, clear scans after 9 months of ibrance and fulvestrant. I tolerated it well , had 2 dose reductions due to low neutrophils which is pretty common. Recently,(3/24) a spot on my right adrenal gland was noted. Watched for 9 months (3 scans ). It got brighter larger , now is 1cm so oncologist switched me to Kisqali just this month.
Hi, thanks for your comment very helpful...
I'm now 60, dx stage IV at 55. I have had minimal side effects and have been able to work full time, travel and live a fairly "normal " life. Initially, when first dx I had fatigue and laryngitis from cancer in my superclavical node pressing on my left laryngeal nerve . That cleared up after 5 months of ibrance / fulvestrant. Hope this info helps you feel confident in treatment and you have good results
Hi. Sorry you have been diagnosed with this disease. I got 5 years on Ibrance and Femara and now been on my 2nd line since March of 2023. I wish you many years on this first treatment line. It's a great one. I stayed on the full dose of Ibrance because I had no side effects except low neutrophils ( always maintained to stay above 2 for me). However many people have to lower the dose the dose and that is perfectly fine. It still seems to work perfectly fine. My oncologist always said to stay on the highest dose that you can tolerate as the clinical trials that got FDA approval was on the 125 mg dose. I haven't been on it for awhile so I don't follow any updates. Good luck. You've got this.
😃 thanks...
What are you taking now?
Hi Greatday2. I had been taking Everolimis & Exemestane since May 2023 with good results. After a recent hospital stay my Everolimis has been held and for the last month I have been only taking Exemestane. Certainly more nerve wrecking for me not to be taking a targeted drug alongside my AI but hoping it all works out. Thanks for asking. Take care.
Was diagnosed in July 2019 with mbc in bones. Original bc in 2008. Have done very well on Ibrance 100 mg and Femara and CT scans have shown no metastasis. 🙏🏻 Many do well with this regime and I hope you will as well.
I’m 78 and have no side effects other than fatigue awaiting WBCs to elevate before starting next cycle. I’m actually on the meds 3 weeks and off 3 due to low neutrophils.
I've been on this combo for over 3 years and still stable. I'm on a UK Facebook group and there are plenty of women who've been on it for longer. The good thing about the Ibrance is that as long as it's working, if your recovery each month is affected, they can reduce the dose.
My mets are in my bones. The primary had spread to my lymph nodes but I had them removed at the same time as the breast surgery
Hi Wendle3007 I’m in the UK and was wondering what site you are on please? X
It's on Facebook called 2nds together
Thankyou x
hi there -I’ve been on palbo/ Letrozole and denosumab for over 3 yrs with no detectable progression and minimal side effects bar the low WBC. I’ve skated through two covid infections and open heart surgery fairly easily. Started this journey in total fear of dying early due to large pleomorphic lobular tumour, 19/34 positive nodes some of which had extracapsular spread (?burst), and metastatic spread in spine . It was scary but you begin to get in your stride when you realise it’s not as bad as imagined. The bumps in the road are usually transient. Stay in the ‘now’ - each day is a new one. Best wishes.
Hi, I think you'll see that for some Ibrance can be effective for many years, in some cases well past 5 years but on average it becomes less effective around 2 years. I'll be on it two years in June and feeling apprehensive but I'm learning, slowly learning, to be accepting of what comes. I don't have notable side effects. You'll learn a lot on this site about treatments, tolerance , side effects and what works for some depending on the type of breast cancer. I'm in a support group where for at least two women Ibrance worked for over 5-6 years. Both are on different chemo treatments now. I wish you a long treatment with Ibrance. I hope you have minimal side effects too.! Hugs.
I am into my 6th year. Have had a couple of progressions in my bones but my oncologist has left me on it! I am on the lowest dose of ibrance because it is the only one I could tolerate.
This Spring will be eight years on Ibrance/Letrozole combo. Have low neutrophils and fatigue. Started at 125 and after couple of years dropped to 100 for several years and now on 75. The drops in dosage didn't change the low neutrophils or fatigue. Wishing you the best and a long run with Ibrance. Blessings, Hannah
😊 Thanks... all the best.
I've been on ibrance since May 2020, but changed letrozol to fulvestrant about 18 months ago. X
Why did you change to fulvestrant?
I got 4 years on Ibrance/Letrozole combo before spread to my liver. Initial Mets were mostly bone.
Tried Everolimus & Exemestane for a few months but that didn’t work so now I’m on Capecitabine which I’ve been on for 3 cycles and one scan showing reduction in liver Mets.
I am in my 5th year of Ibrance with Fulvestrant shots. It is my first line treatment. I have been NED (no evidence of disease) for 3 years in March so my time on this combo has been very successful. My Onc said he has had patients get as much as 8 years without progression that would necessitate a change.
Hi, thanks... do you have bone mets I find people have a long time with these , good luck here's to another 5 years...
Thank you! No mets. I had a pleural effusion (fluid on my lung) containing bc cells so hence the metastatic dx. The fluid was drained through theaurosentesis (needle through my back) and never came back. I have had clear scans since then . Even though I know they are hiding in my body waiting to mutate and outsmart my meds I feel very blessed to have enjoyed this reprieve as long as I have. Scans next month…🤞 I wish everyone could experience that. Praying daily for a cure for all of us. The only way we’ll beat the beast. All the best to you on your journey.
I have been on ibrance and letrozole for 12yrs, hoping to be cancer free soon. I live in Thompson,Ct
This is good news! I've been on IBRANCE and letrozole for 2 months only . Stage 3 breast cancer that'spread to my lungs! I hope it works as well for me!!
I have to ask if you are metastatic how will you be cancer free? Without a cure, even being NED for long periods of time, the cancer is there and will eventually mutate and beat whatever treatment so there will be progression. Sincerely, if there is some different info you are getting that can give all metastatic patients hope, please share. All my scans for the past 3 years have shown “no evidence of metastatic disease”. My Onc says I am in remission and I have to be good with that as I wait for the other shoe to drop one day when my meds stop working and I have to switch due to progression. It would be a miracle for any of us to be told we are cancer free. Praying for a cure.
Gingerann, I agree with you. I’ve only ever been stable and I usually have active Mets somewhere but scans don’t show signs of new lesions. I do have a new breast lump which I found last August. Up until now, after a couple of scans and a mammogram and ultrasound, no one has been able to identify it but there’s no other signs of new mets and this lump could be an innocuous fatty lump. I’ll face another set of scans and mammograms in May. Maybe it’ll be something or maybe it’ll be nothing. I saw a post on here where others had had a similar experience and it turned out to be harmless and Dr Google agrees that it’s quite probable that it’s nothing to worry about.
Off track slightly but while I’d love to be NED or even cured, the reality is that it’s not likely to happen in my lifetime. Before a cure can be declared science will have to be able to vanquish all possible mutations and they aren’t all known yet.
It’s okay to hope but it’s best taken with a dose of practical wisdom.
Last August I feared a drug change but I’m still on the same drug I was on in 2016 and I’m grateful for that. That’s not to say I haven’t experienced progression because I have but waiting it out rather than reaching for the next medication can sometimes be the better choice.
Back in 2015 I hoped to make it to 2020. Now I’m in 2025 and wondering if I dare hope to see 2030. Why can’t I?
Grey tabby kitten showing her strong side.
Hi, I'm new to the forum too. (53) Diagnosed last August with 12mm breast cancer and bone mets . Unluckily it had spread from a tiny BC through the blood without lymph node involvement to quite sustantial bone mets which oncologists said was pretty unusual. I have been on a combo of Ibrance, Letrozole and Goserelin will start bone strengthening meds this month. Surgery booked to remove ovaries or full hysterectomy. Was pretty scared at first, but becoming used to the new normal. Fatigue and bone pain stopped me from working, but energy levels are building and so far, I am tolerating the medications well. Hopeful of the advancements in cancer treatment particularly immunotherapies, those that use sound to kill cancer cells and the recent Korean breakthrough where they were able to 'flick a genetic switch' on the cancer and return cells back to a normal state. Staying hopeful of a cure.
Hello, I was on palbo/ Letrozole + Lupron for a year and half. Had some progression and switched to abemaciclib/fluvestrant + Lupron now. Like lots of ladies here, the combo seems to be successful to many and well tolerated. In my case. I had to lower the dose to 75mg due to very low white blood cell counts. I was required to inject Nivestim to stimulate cell production at end of Ibrance cycle every month. I also remember that I was lethargic a lot of time when I was on Ibrance plus I lost a lot of hair that was already thin from the treatment!! Current combo has its own undesirable side effects but I’m not tired all the time now. It’s unfortunate that Ibrance/Letrozole combo didn’t work for me as well as other ladies! Hope it will work well for you!
I have been on Ibrance and letrozole since November 2023 and my stage 4 metastatic breast cancer is very stable according to my oncologist recently. I had liver mets which are completely gone now, lung Mets, and lesion on my right adrenal gland. And a large 6.3 cm tumor under my left arm pit and a tumor in my left clavicle. My oncologist considers the letrozole to be the heavy hitter over the Ibrance. I was only on letrozole for 4 months since I had to go off Ibrance due to chemo and radiation for a SCLC (small cell lung cancer) 3.4 cm tumor in my upper right lung lobe. I have two primary cancers that I am dealing with. She said the letrozole saved my life as far as my breast cancer is concerned. I am now back on the Ibrance. And doing immunotherapy for the SCLC.
Good luck.. hope all goes well for you...
When I was first diagnosed as having metastasis I was very ill. Lots of chest pain and shortage of breath. I had 7 fractured ribs from the cancer. The cancer was also in spots in my back and right femur and left hip. Because I was so ill I was started on Xeloda which in oral chemo, but after 1 and a half years of that I was put on Ibrance and Letrozole. During all of that time my cancer has remained stable. We are all different but I am leading a pretty normal life. I am grateful. I am Canadian.
Thanks.. wishing you all the best..
So I forgot to add that I have now been on Ibrance for over 5 years so all in all I have been stable for nearly 7 years.
Great news...for you.😀
There are many people on this forum that have been on Ibrance 5+ years. Not everyone sees the posts and responds. Stay hopeful - there are so many new drugs/treatments being developed! 
😀 thanks for your reply I find most people on this forum have bone mets.. mine are in my lymph nodes distance chest and clavicle.
Hi there, I have been on the Ibrance/Letrozole combo for six and a half years. This is the only treatment I have been on since my diagnosis in 2018. I started at 125mg and then after a few years my doctor reduced the dosage to 100mg due to low neutrophils. I work full time and am active in church and community groups. I had a problem with mouth sores which I have mostly solved with supplements and mouth rinses. I do get fatigued at times and I try to listen to my body and rest when that happens. I wish you the best!
Hi , yes I get fatigued as well very common on taking ibrance do you have bone mets seems a lot of people do well on this combo....
Have your scans ever showed progression? Or have they been stable all this time?
I have not had any progression. I do have small spots light up occasionally on scans, but then they are not there by the next scan, or at least they are stable. Nothing that my doctor would consider progression. I have also had several situations where something lit up and I had to have follow up imaging, but then it turned out to be nothing.
Yes, I have mostly bone mets
I went for 5.5 years on it. And now I’ve been on Piqray and Fulvestrant for over one year. Still going. Very thankful. But not sure what is next for me or if I want to continue the quest.. I’ll. Are my decision when the time comes.
Awesome!! Hope you don't mind me asking do you have bone mets ?
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