Has anyone been on Ibrance for over 5 years?

[KimberlyB40]

Happy Thanksgiving! I'm 43, MBC to almost every bone in my body Hr Positive HER2 negative. I've been on Ibrance for 2 and a half years, an I've read the average time Ibrance stops working is about 2-3 years. How long have you been on Ibrance, and did it ever help to a point where you actually had a scan that read no evidence of a time disease? If so how long were you on before that happened? Thank you!

[Zebra2018]

Hi Kimberly, I am sorry you have to deal with this nasty disease at this young age, I have been on IBRANCE since December of 2018 and it is still working. So please don’t pay attention to statistics too much. I wish you best of lucks on this journey, hopefully you will live long enough to see your beautiful daughter’s many successes.

[Dflur in reply to Zebra2018]

I so agree! Don’t look at time lines, every body is on its own time. My ibrance and anastrozole have been doing a good job with no progression since September 2019.

I would never compare my MBC with any other person.

[KimberlyB40 in reply to Zebra2018]

Aww Thank you for sharing with me! Funny you say that, when I do respond to some of the newbies I say the same thing so I'm surprised I'm in this what next/what If mindset right now. I have this horrible feeling lately that I'm almost done with the Ibrance because i feel like almost everything I've been reading lately is that people only got 14 cycles with Ibrance and I know if I catch as soon as it does I'll be OK. My daughter is an only child we little family I just feel so so bad for IF something were to happen. With all of that said, If any of my family or friends heard me say any of this they'd be shocked because I'm so positive and happy. Thank you for being there in my darkest thoughts I really appreciate everyone on here. Thank you!

[Nocillo]

Hope you had a wonderful Thanksgiving. My original diagnosis was as yours, nearly every bone in my body. My first line of treatment was Anastrozole and Faslodex and that lasted about 6 years. A bit of fatigue, but not a bad 6 years, except for the mental games played in my head. Second line of treatment was Ibrance and Tamoxifen. That only lasted about 2 years, so that was disappointing. Now I’m on Verzenio and Letrozole since September 2023. I’m hoping it works but my last pet scan was still lighting up. I hope you get a long time on Ibrance. If not, please know there are MANY other options for you. So many new drugs coming out all the time. Hopefully you’ll be around for a long time to come. I’ll complete 9 years next spring. At least one person on here has been in treatment for 18 years. Wishing you the very best!!!

[KimberlyB40 in reply to Nocillo]

Thank you for the reminder that there ARE many many options. 9 years is GREAT! I pray I get to be that lucky! When you say progression was It just the bones again? Thank you for your words!!!

[Nocillo in reply to KimberlyB40]

Yes, just bone for which I am incredibly grateful. Oops, I forgot, I have ductal and lobular and the lobular went to my stomach lining but the Ibrance took care of that. No major organs. Still grateful! Good luck!!

[BettyBoop3000]

Hi Kimberly,

I have been on Ibrance and Letrozole about 3.5 years. HR ER POSITIVE, HER NEGATIVE, METS TO BONES. I also had ovaries removed.

I also started getting quarterly Zometa infusions, to strengthen my bones. It's also supposed to have some anti-cancer properties. I have consistently had stable scans. After about 3 years, and several Zometa infusions, I finally reached NEAD! I hope you do too.

[KimberlyB40 in reply to BettyBoop3000]

I too went NEAD at 6 months on Ibrance and have been stable ever since. I changed from Zometa every 4 weeks to xgeva shots because it made me so so sick. Great to here from people like me! Thank you so much!!

[NPmary]

I was on Ibrance and Letrozole for 5 years before I had progression in bone mets. 5 years is considered exceptional - anecdotally I think there are many with 5 years. Wish you the best.

[KimberlyB40 in reply to NPmary]

Awesome! Thanks for the hope!

[Kateds]

Seven years for me. I’ve been NEAD for six and a half years. Mets are in my liver.

[Mimiholl]

I was diagnosed at 65 with mbc stage IV ER/PR+HER2 - in 2016 and had 26 rounds of red devil, a lumpectomy of my rt breast, lymph node removal and 6 weeks radiation to my rt breast and t4 on my spine I have been on Ibrance and letrozole since then.I have had a few times that I had to stop meds for short periods of time.( Covid, knee replacement, rhabdomyolosis , broken ankle, and occasionally based on lab results) I have monthly labs, and every 6 months full body ct scans and full body bone scans( previously every 3 months) I am anemic so have had iron infusions and blood transfusions. I won’t say it’s easy, always nerve wracking waiting for results. I pray we all continue to have good results

Mimi

[hurricaneheather]

mBC dx, with pleurodesis, July 2015. treatment began in Aug 2015. was on lowest dose of Ibrance at the end of 2015 or beginning of 2016. PET/CT scan indicated stable, NEAD in early 2016. still on first line of treatment and stable, NEAD. may Ibrance be a component of treatment that is beneficial for the mind-body.

[KimberlyB40 in reply to hurricaneheather]

Amazing! Thank you!

[Kdiet]

I have been in Ibrance for 48 months. Now on 75mg. Also taking Letrozole 2.5mg. The last two scans which I get every six months did not show any cancer to radiate. But they stopped at saying NED.

[KimberlyB40 in reply to Kdiet]

Yes! They stopped saying that on mine to like3 scans ago and I've been weird ever since

[Totheriver]

I have been on ibrance 41/2 years and my scans always say stable. I am waiting to even hear the word shrunk. I have a lot of Mets in my spine and one on my femur. At least so far no progression. Hope all goes well for you. Theresa

[KimberlyB40 in reply to Totheriver]

Stable is a great word! ❤️

[Totheriver in reply to KimberlyB40]

Yes it is!

[Totheriver in reply to Totheriver]

And I am very thankful for that.

[Mushroomqueen]

Hello Kimberly...I have been on Ibrance for only 1 year. I was diagnosed with MBC last October. I started with 125mg of Ibrance. I am down to 75mg now. The last 2 PET scans show no evidence of cancer. I give credit to the Turkey Tail mushroom supplements that I take. Almost immediately after starting these I felt like the cancer left my body. It's natural, no side effects and my life saver. Let me know if you want more info. I don't sell it...just order on Amazon. Good luck to you with your journey!

[Petmatt in reply to Mushroomqueen]

Hi, I am on my 17th cycle of Palbociclib and Letrozole. My lung mets and pleural effusion started shrinking straightaway and not seen on last 2 scans. Fingers crossed for next scan. I also started taking Turkey Tail mushroom organic capsules from Amazon. I try to eat mushrooms too x

[Flowerfriend]

Hi KimberlyB40. I was on Ibrance with letrozole for 2 years, lost my hair, very brittle fingernails, dry skin. Evidence of bone and liver met initially reduced but finally with progression in liver and rising CA 27-29 trend. Was switched to Kisqali with fluvestrant for 6 months, markers soared, liver progression, very costly with rash side effect. Liver biopsy revealed my breast cancer mutated, barely Estrogen positive 1%, though still Progesterone positive and Her 2 negative. Started Xeloda in May 2023. Scans since then haven't been too encouraging but hoping for improved scans in Dec. Fingers crossed for you that Ibrance works before you need to make a change.

[Lilywallytootsie]

Kimberly, I have been on Ibrance/Letrozole since March 2017. My oncologist uses the word stable which I consider good. He never says remission, NED, etc. I have Mets to lungs only. Wishing you well. Blessings, Hannah

[Merma]

I’ve been on it got 6 years with anastrozole for endometrial cancer. On 125 mg for about 2 yrs, then on 100 mg for the past 4 years. My blood counts stopped recovering, had multiple weeks off between cycles, and I had a local recurrence, so I’m going down to .75 mg. Still on anastrozole until genomic & ct DNA results come back.

I had NED for nearly 6 years.

[Aquadog]

Hi Kimberly. I think that idea of Ibrance ceasing to work after 2-3 years might just be old data. I've been on it almost seven years with no progression and there's more than a few of us in that situation. Because my cancer is limited to bones (so far), there's never been any "no evidence of disease" scans for me - the damage will always be there, but hey - I'm here and honestly, no one knows I have cancer unless I tell them.

My heart broke for you when I saw you were 43. Right now there are many options for your type of cancer (which is the same as mine BTW) and exciting new treatments are in the pipeline. I hope you don't need to explore those for many years, but it's nice to know they're there. Wishing you all the best on your journey.

Susan

[KimberlyB40 in reply to Aquadog]

Same here! No one really knows I'm sick I look good and i don't I just kind of stay home. Always lots to do. I'm bone only and until 3 scans ago they always stated no evidence of active disease so I think that change of wording may have changed my mindset. 7 years... oh my gosh thank you! I've got myself convinced it's an any day now which I know is like really bad to do. Anyway, thank you so much for sharing! I feel kind of silly having all of these questions again like I did in the beginning. I feel like I should know better by now but everyday I've been overwhelmed with this GUILT - what if... my 13 year old would b crushed ... oh my gosh - I'm sorry. SEE... I keep doing this .. weird place stuff. Anyway, thanks again!! ❤️

[Aquadog in reply to KimberlyB40]

Not silly, Kimberly, not silly at all!! Ask the questions as often as you want and there's no time limit! Sometimes you need answers again. The people in this forum are fantastic and will be reassuring/informative/helpful.

Something I've found about the scan readings - different radiologists use different terminology. I'm with a large cancer center that has lots of branches and my reports differ every single time. While most of them mention the same mets (mine are pretty widespread) some pick out one or two I never saw listed before but were there all along. (My original PET way back in January 2017 showed all of them but in my "OMG I have a recurrence" fog, I forgot .) I did ask my oncologist about the radiologist reports and she said it happens - they're all accurate, but they don't all use the same words in their reports. (eye roll - seriously? they can't agree on what to say?? Don't they know we panic when there's something different?? LOL)

The "what if" game is powerful and not in a good way. I had to learn to be in the present every moment. Not always easy.

Sending big, warm hugs.

[mariootsi in reply to Aquadog]

I play the wahT if game too. I hate it, but my mind goes there especially after scans. It's tough to fight it but we can do it.

[michelangelina]

Hello! I have been on Ibrance/letrozole since May 2018. My first scan 3 months after starting Ibrance, I had what was described as a "complete metabolic response". The numerous bone mets I had were no longer active. I have been stable ever since. I think there are many of us that get quite a bit longer than 2 years from Ibrance. I pray that will be the case for you as well!

[Timtam56]

5.5 years Mets to lots of bones only. Now it’s moved to liver. Anaemic. And not well. Going on a trial soon. Either piqray or capecitabine. Wish me luck.

[KimberlyB40 in reply to Timtam56]

Best of luck to you!! How are you feeling?

[Timtam56 in reply to KimberlyB40]

I’m doing well on this trial, Piqray/Alpelesib. Fulvestrant injections x 2 (In both bottoms) once a month)

I had my scans yesterday, and I have my monthly review on Friday. It will be 4 months now, that I have been on this trial and I’m feeling pretty good, except for the awful taste and dryness in my mouth. I am not interested in food, and I’m losing weight. (That I am loving sooooo much, as I found the Ibrance/anastrozole regime made me stack it on).

Long winded answer. Thank you for your care.

I found this on YouTube last night. I found her very helpful.

youtu.be/Pjsjhe9jcCg?si=SCF...(Not working as expected?)

[Lynn-in-California]

Almost 8 years, since the summer of 2016!

[kparekh76]

Hi Kimberly! My name is also Kimberly and I'm in my 40s. We are twins of sorts haha. I was diagnosed MBC de novo 9 years ago. I'm on my 61st cycle of Ibrance (as well as Letrazole and Lupron). I have been NEAD for years (though only my oncologist occasionally mentions it and it is never indicated in any reports). I sorta didn't believe it in the beginning but obviously grateful for the stability. As a result of my stability, I go to the hospital on a quarterly basis and scan annually.

[oilermama]

I am going on seven years on Ibrance... Along with Anastrazole -- so far, as good as it gets. Scans have showed no change the entire time and the next round is late April. Keep hoping and praying it continues.

Best of luck to you!

[1horse]

I’ve been on Ibrance for 6 years and have had clean scans for 1 1/2 years. That is to say lesions are seen but there is no evidence of growth or spread. I cut back to 100mg Ibrance about a year ago. Best wishes to you.

[RockGarden]

Hi, Kimberly,

I was diagnosed with ER, PR positive, HER2 negative breast cancer with mets to my spine in March of 2016. The first scan that I had that showed NEAD was in April, 2019. I have been on Ibrance and letrozole for 8 years now. Zebra's advice is right on...statistics are just numbers and there is no way we can know how we fit into them. Keep up the positive attitude, take good care of yourself and enjoy every day.

[cancersucks2]

Hi KimberlyB40. I have been on Ibrance going on 3 years now. No new spots. 👍. I do suffer from fatigue though. But I can take it !! I travel and do everything I want to do within reason. Keep living your life. Everyone is different?! Enjoy your life as much as you can 😘