How long have you been on Ibrance?

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Valz
Valz Member Posts: 37
edited July 2019 in Stage IV/Metastatic Breast Cancer ONLY

These are my first posts here. Happy to find this place.

My experience with ibrance and fulvestron is pretty good. I started out on 125 mg of ibrance, on three weeks, off one. Waited for the white blood cells to stabilize while continuing treatment and they did but I had horrid fatigue due to ibrance and fluid in my pleural cavity. I was having weekly thoracentises. Lowered ibrance to 100 to try to help fatigue. Finally, lowered to 75 and two weeks on and two weeks off. The fluid finally left my lungs as ibrance is supposed to do this and it did. My tumor marker increased a couple of months ago so I am back up to 100 on for 3 weeks with only one week off and I am having fatigue again. I get monthly Zometa infusion and monthly faslodex injections. I have been on ibrance for one year. This makes me a little nervous as it only works for a finite amount of time. How long have the rest of you been on inbrance? I have a few tiny mets in my spine but they have remained the same.

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  • Moderators
    Moderators Member Posts: 25,912
    edited July 2016

    Welcome, Valz! We're glad you've joined us, and hope you find these boards to be a source of support and encouragement during your treatment. Lots of members here have experience with Ibrance, we're sure some our wonderful and informative stage 4 community will chime in shortly with some insight.

    Let us know if we can be of any assistance!

    The Mods

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  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited July 2016

    I've been on Ibrance and letrozole for 15 months. I also have limited bone mets that are stable.

    Good luck. It seems like a good regime for most. You should check out the Ibrance thread... Although it's very very long if you start it at the beginning.

    Stefanie

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  • Valz
    Valz Member Posts: 37
    edited July 2016

    thanks! Did you start with fulvestrant and then change to letrozole?


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  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited August 2016

    no..I had just failed faslodex(after over 3 years on it) as Ibrance was becoming available, so my ONC thought it best we dont go that route.

    It think it's agreat combo, and would prefer it if I could.

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited August 2016

    Val, I was on Letrozole/Ibrance for 5 months at 125 mg strength and my scans improved (liver mets) but my enzymes went through the roof. So we quit both, went to Faslodex alone which failed. Went to Arimidex 3 months ago and added Ibrance back in at 100 mg. Again liver enzymes too high. Now I am on 75 mg, will get a scan in two weeks and pray it is working with no enzyme issues....Welcome! Sorry you have to join us but check in often, it's a great group.

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  • dlb823
    dlb823 Member Posts: 9,430
    edited August 2016

    I've been on Faslodex + Ibrance exactly a year -- since August 2015. I was on Anastrazole before that, until it failed me after 18 mos.

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  • zarovka
    zarovka Member Posts: 3,607
    edited August 2016

    Hi Valz -

    The Ibrance Thread documents Ibrance experience is extremely well. The mean time to progression in the clinical trials if Ibrance and a hormonal treatment is 20 to 24 months. Most of us started after the drug was approved last years, so we have not reached the average time to progression.

    However, some of the people from the original clinical trial 6 years ago are still stable on Ibrance. The survival curves have a peak and a very long tail. The ladies on the Ibrance thread are working on moving out the peak and making that tail very very long.

    Join us!

    >Z<

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  • Valz
    Valz Member Posts: 37
    edited August 2016

    Stef, the reason why I am on fulvestrant is because I have already had the other hormone treatments after my earlier 2001 cancer. I think ibrance is a wonderful but strange drug that I am very thankful for.

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  • MrsArchi
    MrsArchi Member Posts: 1
    edited January 2018

    Hello, I have been on IBrance, letrozole and XGeva since 2015. My Oncologist wanted to change to Xeloda, but my body could not take it, Felt like I was having a stroke. So now, I am supposed to start IBrance again, but now with the shot, instead of Letrozole. I am to continue with XGeva as well. IBrance has been good for me. Fatigue YES, but manageable to feel a normal life.

    Happy to ve on this forum.

    Karen

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  • jensgotthis
    jensgotthis Member Posts: 937
    edited January 2018

    since October 2016 (with letrozole

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  • LindaF
    LindaF Member Posts: 29
    edited April 2018

    I was on anastrozole for a little over five years before it failed suddenly. My oncologist started me immediately onIbrance and fluvestrant and then Xgeva. So I have only been on this combination for six months. I am hoping it will hang on and help me out for a good long time. I was getting a thoracentesis basically weekly. I had a PleurX catheter placed and now my husband gets the honor of draining me every few days. The amount of fluid has decreased but not gone away. I am hoping Ibrance will clear that up eventually. I have not suffered fatigue once I started the regimen, and so far I have not had any neutropenia problems. I have small Mets on my spine and at the base of my skull besides the one in my lungs. I’m hoping to be a part of that long tail.

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  • jobur
    jobur Member Posts: 726
    edited May 2018

    I have been on 125mg of Ibrance with Faslodex since August 2015 with great results. 1st scan in Dec of 2015 was much improved and all scans since show NEAD.  DX'd de novo with many mets to spine and pelvis. Oh how I wish everyone could be as fortunate as I have been!


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  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited May 2018

    Ibrance/Letrozole, 18 cycles, started Jan 2017 after AC.

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  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited May 2018

    Jobur- We are twins, I started July 2015. Holding my breath that it can hang in a little longer, squeeze in another great summer...

    Sandi- We are twins in different way, ER+PR-HER2-, the IF combo can work well on this subtype...

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  • LENAGREECE
    LENAGREECE Member Posts: 27
    edited May 2018

    Hello Ladies,


    Hope everything will go as planned for a very very long time. I am in the middle of fourth cycle Ibrance 125 and on last MRI liver lesions appeared from nowhere although bone mets stable. Tomorrow I have appointment with MO. Scared to death that if this miracle combo failed me nothing else will benefit me.

    Thank you,

    Wish all the best

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  • GinnyO2
    GinnyO2 Member Posts: 125
    edited July 2019

    Hi Lenagreece, I’m fairly new here and was wondering how you made out with your last MO visit?

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