I just started Ibrance/Letrozole How long have you been on it?

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caall1234
caall1234 Member Posts: 214
edited November 2018 in Stage IV/Metastatic Breast Cancer ONLY

I have been on this going on 3 months. How long has anyone else been taking it?

And what is next after this to take? I had Faslodex first.

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  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited June 2016

    I've been on it 13 months. I also had faslodex previously. My next step would probably be Xeloda, Unless something else/bettercomes along before I need that.

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

    Stefajoy. Welcome. Ibrance users post on the Ibrance Thread. If you post over there you will get a lot of answers.

    If you fill out your full treatment history, people will have more to go on when they respond.

    I am in the middle of Cycle 5. Not sure what is next. I am hoping to stay on this long enough to be able to consider options we don't have now. Doing well so that seems possible.

    >Z<


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  • annewithane
    annewithane Member Posts: 10
    edited June 2016

    I just started my third cycle of Ibrance and Letrozol...I'm assuming I'll be on it till either side effects build up too much or my cancer isn't responding to it. This is my 7th kind of chemo - have been in chemo continually for 5 years(in a couple of weeks).....hope all goes well for you!

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  • JudyKRN
    JudyKRN Member Posts: 45
    edited June 2016

    I've been on Letrozole and Ibrance for about 2 months. My oncologist says it works for bout 20+ months. After that he says I'll have to be on chemo for the rest of my life. Not looking forward to that. I was hoping I was done with chemo 11 years ago…..

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  • caall1234
    caall1234 Member Posts: 214
    edited June 2016

    By twenty months they might fine something else to take. I have never been on Chemo. If I get to

    that point I will not take it. Good luck

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  • Lovelife49
    Lovelife49 Member Posts: 59
    edited June 2016

    JudyKRN, there are several other treatments to try for your type of cancer besides chemo, so try not to focus too much on what your oncologist said because it could really be much longer than that before you ever had chemo as your only option. And caall1234 is also right in that there are other treatments being developed right now. There are many ladies in the bone mets thread who are still on their first aromatase inhibitor several years post metastatic diagnosis!

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  • JudyKRN
    JudyKRN Member Posts: 45
    edited June 2016

    I am hopeful that other treatments will be on the horizon. I mean, look at Ibrance, only approved for about a year, now. I will do chemo again, if it comes to that. I'm that stubborn. But one has to do what is right for them……


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  • rondamesser
    rondamesser Member Posts: 1
    edited June 2017

    Next week I will start my 9th month of the Ibrance/Letrozole protocol. According to my doctor, I will be on this as long as my body tolerates it and as long as my body responds to it. So far, the only side effect I have had is fatigue. Prior to that I had 12 Taxol chemo treatments.

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  • Moderators
    Moderators Member Posts: 25,912
    edited June 2017

    Dear rondamesser,

    Welcome to the community. We are so glad that you reached out here. We hope that you continue to have minimal side effects from your treatment. Please stay connected here and let us know how we and our members can be of support. The Mods

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  • Lynnwood1960
    Lynnwood1960 Member Posts: 1,284
    edited June 2017

    I've been on this for 25 cycles and doing well. This is my first line treatment for mets.

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  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited June 2017

    I am on cycle 22 and still responding well, strongest side effect for me is my hair is so very thin/broken and I look like the strawman, but it looks fine with more frequent and short haircuts- I just recently had a good scan, so no scans for another six months, unless something pops up in the blood work.

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  • Carmiegirl
    Carmiegirl Member Posts: 1
    edited September 2017

    I have been on Ibrance/Letrozole for 3 months with a brief interruption of Neupogen which put me out of commission for a few days. The worse side affect by far for me is extreme fatigue. I feel like my life is on temporary hold and I'm finding myself feeling depressed because being so exhausted is the opposite of my normal life. I live in downtown NYC and, as so often happens, rallying to attend my best friends birthday. I can't work because neurologically my brain isn't functioning properly I was an interior designer with multi-million budgets to handle and I can't even remember my name half the time. I'm scared for my future - I can never start or finish anything . this is the total opposite of who I was before. I'm starting to feel trapped by this constant anxiety and exhaustion. Can anyone offer me any suggestions? I'm with Sloan Kettering and everything from acupuncture to psychiatrist takes months to secure an appointment. Does anyone else feel so extremely tired?

    Thanks in advance!!

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  • Micmel
    Micmel Member Posts: 9,450
    edited September 2017

    Very tired yes. Ibrance has that side effect. I am also exhausted daily. Talked to my palliative care doc. I take 20mg of ritilan on any days that I have a lot to do. It gets me through my down times. I also was put on Effexor for depression and heat flashes. I am feeling. A lot more positive. And the heat flashes are a heck of lot better than they were. I noticed a difference immediately. I am about to start my 11th month on ibrance and I have been told I have no measurable disease. So the medicine is working. There is an ibrance thread that is a huge thread and the ladies share tricks and helpful things. I am on anastrazole for the hormonal chemo. So far it seems to be working. So I have found ways around the fatigue. But when you need rest you always should really rest, one day at a time. It's all we can do. Hugs hang in there. It does get easier sometimes. It's always up and down. ~M~

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  • bigbhome
    bigbhome Member Posts: 840
    edited September 2017

    Carmiegirl, You sound like me when I first started Ibrance. I was on 100mg dose and really feeling like my life was over. I told mo that my aol was so bad, I wanted off Ibrance. He asked me to try the lower dose of75mg, first, and if I still wanted off it was my call. I have been on 75mg for 18months now. What a huge difference! Talk to your Mo, your qol is very important! You need to feel like you are living! It took me a few months before I felt like me again. Good luck!

    Hugs, Claudia

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  • Jserenityb0413
    Jserenityb0413 Member Posts: 9
    edited September 2017

    Hello Ladies

    Claudia - I'm also in downtown NYC, John street! I just started ibrance/letrozole a week ago. I was on xeloda for 1 year but it stopped working!

    I feel your pain. I'm still working full time yet I am having difficulty managing. The brain fog, forget my kids names....and so, so tired. I am so worried about the coming side effects. Don't know how I will handle working and parenting 3 boys. I'm already burnt out. My husband is wonderful but I'm afraid of not working since we need the extra income.

    I was first diagnosed on 2013 stage 3. Diagnoses stage 4 last year in October. Spread to the lungs, brain and bones. Bones and brain are stable but the lungs are not cooperating. Let's hope this treatment works.

    Sending love.

    Jackie

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  • Msevin
    Msevin Member Posts: 1
    edited February 2018

    I am just about to start Ibrance, and a little nervous. My breast cancer just spread to my peritoneal lining of my stomach, after my original diagnosis of stage 3C 5 years ago. I'm seeing a bunch of different information about prognosis, and not seen anyone on here where it spread to this area (abdomen). If anyone here has had this same experience, can you share with me anything you have learned about the spread, and what to expect?


    Thank you ladies. Melanie

    DX 11/2012 Stage 3C, Lymph Node 12/15 active.

    02/2018 Metastasized to Peritoneal lining of abdomen. Now stage IV

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  • EV11
    EV11 Member Posts: 127
    edited February 2018

    Hello, Melanie....

    I also have peritoneal/omental mets and had ovarian/Fallopian tube mets discovered when I had my ovaries removed 2 months after my de novo stage 4 diagnosis almost 3 years ago...

    I have lobular MBC, and peritoneal/GI mets are not very uncommon for that subtype. Even if you don't have lobular MBC, consider joining the "Advanced Breast Cancer" group of another support community called "Inspire"-- there is a very active thread of women with lobular GI/abdominal/peritoneal mets and you will learn much about the particulars of managing it from those supportive and informative women (for whatever reason there are no male MBC members who post on that thread...).

    I have been on Ibrance/letrozole since my diagnosis in late May 2015. I have just started cycle 36. I take 75 mg (had very difficult times with the affect on my bone marrow/WBCs/ANC/RBCs on 125 and 100 mg doses, but have tolerated 75 mg for the last 33 cycles without any trouble...and obviously the lower dose has been very effective for me.

    I post as EV11 on Inspire (in that "Lobular mets to the abdomen/GI tract" thread and others) and you can send me a message through there if you would like talk by phone or correspond by email...It's a very scary time and unfortunately many oncologists are not familiar with the special considerations for managing some of the symptoms of significant abdominal/GI involvement, but systemic treatment can be effective. Almost 3 years post-diagnosis and I'm still doing very well.


    Take care. Be strong and find a way to be at ease today.

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  • Southernsurvivor
    Southernsurvivor Member Posts: 632
    edited February 2018

    Melanie and mica1,

    Just wanted to let you know we do have a thread on here for stomach mets in the Stage IV forum - thread is called “peritoneal carcinomatosis.” I too have lobular MBC, since Jan 2014, and there are several women on this thread. I have learned quite a bit from these shared experiences and will say it has been interesting that we all seem to react differently to the hormonal therapy and various chemos, even though we seem to almost all, if not all, have ILC. I personally have been treated with several of both types of treatment and am currently stable on Halaven, an IV chemo.

    Please join us on the belly mets thread - we would love to have you there.

    Hang in there, Melanie. I know this diagnosis is hard physically and mentally, but we are here to support you and there are many treatments to manage this diagnosis for quite some time. I’m 4 years out and counting!

    Take care, Southern






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  • lakewoman
    lakewoman Member Posts: 267
    edited March 2018

    I am a newbie..get script for letrozole tomorrow --ibrance being mailed..Oncologist called me today.PET was yesterday..See her Monday. She gave me brief summary .I knew from lung biopsy Mets there. And PET showed to bone ..sternum..More to talk about with her Mon. regarding area where I had mastectomy 10 years ago.She mentioned biopsy might be needed but for now she focused on lungs and bone. Can you believe this began Feb 22nd.yes 2018!! with virus and chest xray. Since then CT chest..bone scan.. CT of abdomen and pelvis..and above!! BC.org here for me for five years..TY for being here again!

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  • lakewoman
    lakewoman Member Posts: 267
    edited March 2018

    I am a newbie..get script for letrozole tomorrow --ibrance being mailed..Oncologist called me today.PET was yesterday..See her Monday. She gave me brief summary .I knew from lung biopsy Mets there. And PET showed to bone ..sternum..More to talk about with her at that appt. regarding area where I had mastectomy 10 years ago.She mentioned biopsy might be needed but for now she focused on lungs and bone.Can you believe this began Feb 22nd with virus and chest xray. Since then CT chest..bone scan.. CT of abdomen and pelvis..and above!! BC.org here for me for five years..TY for being there again!

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  • sweetjolynn
    sweetjolynn Member Posts: 2
    edited November 2018

    I have been on ibrance & letrozole for a few months now. I have experienced almost every side effect. Being so tired is the hardest. I have not lost any of my hair, which makes me so happy. But no matter how tired I am, I will not give up. I make myself get outside & take a walk.

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