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Ibrance Users greater than 24 months

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  • chico
    chico Member Posts: 188
    edited June 2019
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    Thanks Cure-ious for the interesting information re Abemaciclib. To the people just starting these meds next week I will begin cycle 36 of I/L plus Xgeva for very extensive bone mets. I requested a reduction from 125mg to 100mg after about 6 cycles and my Onc agreed as he thought that 125mg was unnecessarily high. I have not had any infections and lead a full social life and often fly to other countries from my home in the the U.K. I do not suffer with fatigue but do occasionally have a little less energy at the end of the cycle. These meds have not affected my busy lifestyle however the scans, blood draws and Onc visits can be very draining. Good luck to everyone whether you are starting your first cycle or have many cycles under your belt

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited June 2019
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    Thank you Cure-ious for bumping this thread.

    With so many starting Ibrance with either Letrozole or Faslodex, it is nice to have a thread that we can quickly check how long others have been on Ibrance (or how long to progression and what treatment was next).

    Chico..it is GREAT to hear from you and your positive news while on Ibrance. Please keep us updated.

    I am wrapping up cycle 32 (month 30) and doing fine. I rest when my body tells me. I am always nervous about results from monthly blood work and quarterly scans. My MO keeps reminding me that dead cancer cells do not mutate. I think that statement cheers me for some odd reason.

    Any other long timers? Both bone and organ metsers please chime in!

    S

  • micmel
    micmel Member Posts: 9,863
    edited June 2019
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    Sandi~Hello beautiful! Sounds like we have the same oncologist! I am starting month 33 of ibrance and although really rough with. Fatigue, I am thankful for it. I take anastrazole, which makes me feel ninety. But I scanned may 29 and I have been lucky enough to remain extremely stable. He said we could forego my bloodwork In three months was my routine. I told him I'd rather just have it done, I am going to be there anyway getting my XGeva shot. I like to know my markers. I know for some they aren't a picture. Mine are. He said he was thrilled with how i was doing. He also said. He truly believes that the little Spots I have in a few places are in no way active. He said that they are dead and he is hoping my success will continue. He also said the medium time of effectiveness was 21.6 months. Which I was surprised. Seems like that number is changing quite a bit. I think this medicine is going to work way longer than they ever imagined. I am thankful for that,, and for you ladies.

    May we all have 100's and 100’s of months on this amazing find of a drug.

  • iwrite
    iwrite Member Posts: 746
    edited June 2019
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    Cure-ious- I’ve read that information too and plan to request that pair of drugs when Ibrance and letrozole stop working for me. Initially, my Onc said she would suggest the AA combo for second line treatment, but I’ve not heard great things about that treatment on these threads. The other idea might be to try Xeloda for a time to wash out the CDK 4 inhibitor so that I could take it again. I’m on cycle 45 of Ibrance at 75 mg. So good to see many having success with Ibrance

  • intolight
    intolight Member Posts: 2,137
    edited June 2019
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    Sandi...I am in my 39th cycle and still doing well. Still at 125mg.

    I write, I am visiting the Springs again. I am doing fine unless I do anything😛 Otherwise I feel the altitude a bit. Been here since Monday but leaving tomorrow. My DH had a conference at Eleganté. Good to see your post.

  • chicagoan
    chicagoan Member Posts: 963
    edited June 2019
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    Hi everyone,

    I started cycle 35 today and am feeling good. I have been at 125 the whole time. I had a heavy cancer load starting off so wanted to stay at the high dose. I hope to be on Ibrance for a long time but it is good to learn from Cure-ious and others some good options for future treatments.

  • pinkpunk
    pinkpunk Member Posts: 15
    edited June 2019
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    Thank you for this site. I've been on I/f for 30 cycles.mainly bone meds and 2 small lung meds...se's have been minor up to now with small back pain making me unable to do much.

    Anyone heard of cryoablation of bone Mets followed by vertebral plasty. Hopkins does it but I'm in CA. Supposibly kills the cancer in the treated spot and the plasty glues the bone. Some treated are back to playing golf and hiking...

    Thanks again for making a place those that have been around for a while can find support and info


  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited June 2019
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    Thank you everyone for checking in even if you have moved on to the next drug.

    *The information will help newcomers to Ibrance (plus anti estrogen) that you can get a good run on the combo.*

    I had to start with AC due to heavy liver mets, but switched to Ibrance/Letrozole once I was stable. It has been 30 months for me.

    PinkPunk: I have attached the link to bone mets thread. There might be others who would like to hear about cryoablation plus vertebral plasty. Thank you.

    https://community.breastcancer.org/forum/8/topics/...


  • Anewbreath
    Anewbreath Member Posts: 122
    edited June 2019
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    Very uplifting to read this thread. Humble and hopeful Lurker. Primary dia - 2/08.....bone/organ -1/18. carbo/taxol/xgeva - 5 months. Started ibrance/ letrozole / xgeva June/18. Thankful for a year of regressing tumor markers and manageable lifestyle. My doctor relies on TM/blood testand symptoms. Scans only as needed or requested after initial scans. I have read on here lots of different approaches to this. Such an hopeful time for advancing medicine!

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited July 2019
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    Hi. I have started my 34th cycle of Ibrance/letrozole (month 32).

    My latest abdominal MRI showed no new lesions in the liver. My CT/bone scan will be in October. I alternate scans every 3 months.

    Just wanted to give encouragement to others, especially if you have visceral mets and are ER+HER2-.

    If you have questions, come join us on the Ibrance thread.

    https://community.breastcancer.org/forum/8/topics/...

  • cure-ious
    cure-ious Member Posts: 2,733
    edited July 2019
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    Congratulations, Sandi!!!

    And, thanks for this thread, I am just past four years now on Ibrance-Femara..

  • Anewbreath
    Anewbreath Member Posts: 122
    edited July 2019
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    Very encouraging Sandibeach & Cure-ious! Thank you for being trailblazer in the ibrance dance.

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited August 2019
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    Today, August 18th, 2019, I start cycle #35 of Ibrance/Letrozole. Occasional fatigue, plus some varying side effects, but very doable.

    I post because I am ER+, PR-, HER2 - with organ (not bone) metastasis. Hopefully, this info will help others.

    Please go to the below Ibrance thread for good information. There will always be someone to help with questions.

    Also search for Lucky4Life on the below thread. She is on cycle #72 at 125 mg and was on the initial Ibrance trial. She nicely lists her varying side effects thru the years. Not all of us have these SEs, sometimes the SEs changes month to month. Others have SEs not listed and lastly, we might have SE from the antihormonals.

    https://community.breastcancer.org/forum/8/topics/...

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited September 2019
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    Just bumping this topic, so Ibrance folks will know that there are long time users out there.

    I just started cycle #36 (100 mg), or month #34 today. I was dx with widepread liver mets Oct 2016, ER+, PR-, HER-.

    Come join us on the Ibrance thread!

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
    edited September 2019
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    wow I remember reading this thread when I was at 12 months. Now I am month 29 and I guess cycle 31?

    Here’s to keepin on keepin on with the Ibrance dance 💃🏿

    It is amazing to be here, I never thought I’d see the day.


  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited September 2019
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    Good morning LoveFromPhilly! I remember when you started Ibrance.

    This thread will give continuing hope and comfort to those just starting Ibrance (in addition to their AI or Faslodex) to know that there are long time users..whether with mets to bone, liver, lung..IDC/ILC.

    If you are (or were) a long time user of Ibrance, please let others know.

    Please go to the Ibrance thread for support and info!

    https://community.breastcancer.org/forum/8/topics/...

  • lucia42
    lucia42 Member Posts: 45
    edited September 2019
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    Chiming in! I'm on month 30 with Ibrance and liver mets that have decreased in size and showed zero uptake on PET three months ago. Now awaiting the result of a CT last week Thursday but hopeful things are stable

  • iwrite
    iwrite Member Posts: 746
    edited September 2019
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    Hi everyone,

    I’ve been on Ibrance since November 2015. NEAD as of last scans

  • intolight
    intolight Member Posts: 2,137
    edited September 2019
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    Iwrite, glad to hear you will still doing well.

  • iwrite
    iwrite Member Posts: 746
    edited September 2019
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    Thanks! I’m so grateful to be here

  • karenfizedbo15
    karenfizedbo15 Member Posts: 719
    edited September 2019
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    Inspiring Iwrite

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited September 2019
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    Iwrite..just amazing. Keep posting to update all of us. We need to hear your good progress.

  • chicagoan
    chicagoan Member Posts: 963
    edited September 2019
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    Wonderful news Iwrite-thanks for sharing!

  • Anewbreath
    Anewbreath Member Posts: 122
    edited September 2019
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    I love to read all the real hope on this ibrance thread!! Just what I needed

  • pinkpunk
    pinkpunk Member Posts: 15
    edited September 2019
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    Started cycle 34 ... hoping for 34 more!

    Had issues with exgeva and stopped after 10 months. Finally feeling better. My issues were with my neck that I broke 40 years ago and has been fine until exgeva.

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited September 2019
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    Hi PinkPunk. It is great to hear you are responding to your I/F combo. I am assuming your MO is still monitoring your bone health now that you have stopped Xgeva.

    I have bone density scans every year. I have a history of osteoporosis and in January, broke a rib while coughing. The Letrozole makes it even worse. But the Prolia injection/every 6 months has brought me to osteopenia. Crazy to be excited by osteopenia..but must means my bones are getting a little stronger.

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited January 2020
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    I just started cycle #40 Ibrance/Letrozole.

    I am now starting my 4th year on this combo for widespread liver mets dx Oct 2016.

    Just wanted to encourage others.

  • micmel
    micmel Member Posts: 9,863
    edited January 2020
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    Sandi~you and I are exactly at the same place. I Am also starting #40 on Tuesday. It’s been at 125 mg the entire time . I hope we both get 15 times as long on this amazing drug. Sending you hugs, I agree encouragement to others.

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited January 2020
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    Hi Micmel!

    I think there are a few others like us that post regular on BCO.

    I am so happy to hear from you. I guess I need to visit your livingroom thread more often!

    It moves so fast, along with the Ibrance thread..hard to keep up. Guess the interest and comraderie is a good thing for all of us. Support is always good.

    S

  • Anewbreath
    Anewbreath Member Posts: 122
    edited January 2020
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    So hopeful to read this thread! I’m gratefully stable on Ibrance 125mg for 18 months. MO believes my TM/symptoms are very reliable at this point. I’m wondering if your doctors use TM to gage for stability and if so, what does that look like for you long term users? Over the years what are you seeing in regards to TM? Variances in number monthly. After a year of declining TM, It has went up a point or so the last couple months. My MO is not concerned at this point. Should I be? This test drives me crazy at times. Thanks!