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How long with Ibrance?

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lili75
lili75 Member Posts: 14

Hello,
I was diagnosed with MBC ER+/HER2- (several metas on bones, nodes, lung and liver!) in December 2019 (at 40 years old) and received Ibrance + Anastrazole + Zoladex+ Xgeva + Orocal as treatment since the diagnosis. It seems to work very well because only the meta on left bone shoulder is still active (at Pet Scan).
I am looking for testimonies of people who took Ibrance for many years.

1) Do we have long term taker of Ibrance in this forum? What is/was your combo (hormono..)?

2) Do you use complementary medicine/change your habits to help you with your MBC (Meditation, pray, sports, yoga, naturopathy, alimentation, vitamin D…)?

3) If you don't take Ibrance any more, what was your next treatment? How long did it work?

Thanks very much,
Love for my sisters of heart around the world.

Comments

  • moderators
    moderators Posts: 8,074
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    Hi Lili75 and welcome to Breastcancer.org,

    We're so very sorry to hear of your diagnosis, but we're really glad you've found us and decided to join in here. You're sure to find our amazing community and incredible source of advice, information, encouragement, and support -- we're all here for you!

    Others will surely be by soon to weigh in with their thoughts and experiences, but we just wanted to warmly welcome you and let you know if you need anything at all, don't hesitate to reach out to us!

    --The Mods

  • spookiesmom
    spookiesmom Member Posts: 8,176
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    Check out the ibrance thread here. I’ve been on it 2 years.

  • rk2020
    rk2020 Member Posts: 696
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    Piping in to say that on Monday, I will start cycle 18 and this will likely be my last cycle as my scan is showing multi focal progression in my bones - and now lymph nodes. Two weeks on 125, 3 two week attempts on 100 and the rest at 75 mg. My regimen has been Fulvestrant + Ibrance + Zometa.

    I try to stay as active as my bone mets will allow but I had some set backs with surgery, radiation, pain and general fatigue. I've cut my drinking back to a social drink here and there - maybe 2 or 3 a month. I used to have 1-2 glasses of wine 4-5 days a week. I eat a good diet, am a healthy weight but do not take supplements beyond the prescribed calcium + Vit D.

    A final decision hasn't been made yet in my next line of treatment but I'm leaning toward exemestane + everolimus (Aromison + Afinitor) but maybe I'll stay on Fulvestrant.

    I hope this info helps you.

  • chicagoan
    chicagoan Member Posts: 976
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    Hi Lili,

    1) I am on my 62nd cycle of Ibrance. My cancer was ER/PR+, HER-.

    2) I pray every day. I also do yoga daily and play sports. I completely stopped drinking alcohol and rarely have caffeine. I found that my Vitamin D level was fairly low so I take a high level supplement. I also take a tsp of dried ginger in a drink most days based on the recommendation of someone else on this forum. I also try to be happy and do things that I find enjoyable as often as possible; social connections are also important for me. I am older so I was able to stop working full-time. I do work but often as a volunteer or for just a stipend but doing things that are meaningful also help me.

    Best wishes to you. Bon sante!


  • dutchiris
    dutchiris Member Posts: 783
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    I was on Ibrance ad letrozole for 18 cycles before progression to both ovaries. Pathology from the ovaries showed that the cancer had changed from ER+ to ER- (which uncommon/rare). So instead of plan of Piqray and Faslodex I am taking Xeloda. I also have quarterly Zometa infusions since metastatic diagnosis.

    I take calcium with Vitamin D. I drink 2-3 alcoholic beverage per year. I have not significantly changed my diet.

  • ncyogi
    ncyogi Member Posts: 45
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    Chicago- my Vit D is also low. I’m alsotaking supplements & was wondering how much you are taking? Thanks!

  • jensgotthis
    jensgotthis Member Posts: 671
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    I’m somewhere in near 60 for number of Ibrance cycles. But what I really take to heart is that there are people on it from the trials.

    I’m on Letrozole, Xgeva, lupron, Eliquis, synthroid.

    I work full time and am a mom to a 12 year old. I travel as often as possible. That’s a big part of me looking to a positive future.

  • lili75
    lili75 Member Posts: 14
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    Spookiesmom: How do you manage not to worry too much about your health?

    RK2020 : your testimony helps me very much: you try to stay active, I have read that around 30 minutes of physical activity 5 times a week (not necessarily sport but physical activity) helps very much and you reduced your drinking to social only. When your next treatment will be decided, can you keep us informed? Did you have biopsy after your progression and do you know your molecular profile (ex: PIK3CA mutations or ESR1 mutations or EGFR mutation)?

    Chicagoan : 62nd cycle of Ibrance gives me hope! Do you take 75mg/100mg or 125mg and did you have a break of more than 4 weeks during these 62 cycles? I will also try to follow your example and find what suits me best

    dutchiris : Xeloda seems to be often use after the Ibrance and works well. Are you ok with Xeloda ? Do you have the BRCA mutations? Each case of BC is specific…

    NCYogi : I also take high level of Vitamin D (6000 UI per day except when I expose myself to the sun around 30 minutes per day at summer time). I try to keep my vitamin D above 45ng/ml, but most of the time it is 50 to 60 ng in my blood. It seems to help bones and immune system. Hope that other members will give their posology, I read that it is not toxic if you don't exceed 10 000 UI per day. Did you change your habits since your Dx?

    Jensgotthis : As Chicagoan, your testimony gives me hope! Do you take 75mg/100mg or 125mg and did you have a break of more than 4 weeks during these cycles? I also have a 12 years old child (2 boys : 12 and 7)! I wonder if I should quit my job, do you enjoy yours? People on it from the trials, do you have a website/link where I can read their stories ?


    Thank you very much all of you, hope I will have other replies

  • spookiesmom
    spookiesmom Member Posts: 8,176
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    If I worried about my health I’d be stuck in bed all day. I have a long list of issues, any could take me out before cancer. I just can’t be bothered. I’m still smoking, over weight, no exercise, eat what I want. No alcohol.

    My animals keep me going. I really enjoy them. You have to find your happy place, and enjoy.

  • dutchiris
    dutchiris Member Posts: 783
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    Lili75, I am not BRCA positive. I do have the PIK3CA mutation now but since I also am ER- now that is not actionable.

    My father and sister have been diagnosed with breast cancer since my original diagnosis. Genetic tests show nothing for any of us. My other sister now goes to a high risk clinic

  • chicagoan
    chicagoan Member Posts: 976
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    NCYogi-I take 4000 IU of Vitamin D, plus the 600 that is in my calcium supplement and 1000 in my daily multivitamin. In the winter I take the 4000 every day; in the summer I take it every other day. My insurance doesn't pay for Vitamin D monitoring so I go offsite for an annual test. It has been around 60 with this regime. I would take the 4000 every day but my primary care doctor was very negative about it.

    Lili-I have been on 125 with no breaks the entire time. I was extremely sick with cancer when I started Ibrance so I think the high dose has been good for me. My ANC is often below 1.0 but since I am so active and so rarely sick, my MO and I are not concerned. I only have it tested every three months and it is usually mid-cycle, so I think everything is fine.

  • Lee64
    Lee64 Member Posts: 113
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    Sookiesmom, I think you have the right idea! Enjoy every day and enjoy the things that make you happy. You never know what could happen next.

  • spookiesmom
    spookiesmom Member Posts: 8,176
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    What will worrying about it change? Nothing. Will worry stop it from coming back? No. Then you’ve lost time you can’t get back.

  • lili75
    lili75 Member Posts: 14
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    Spookiesmom and Lee64 : I agree with you. Your state of mind should be imitate but not so easy for some of us.

    dutchiris : thank you for your reply. I am sad to hear that your father and one of your sister have also been diagnosed with BC. When I had the result of my genetic test, even if it showed nothing, the physician told me that they still have much to learn about genes and maybe later, they will find other genes which increase the risk of cancer. It has also been proved that our modern environment and way of life (pollution, toxicity, state of mind, drinking/smoking, stress...) increase the risk.

    Chicagoan : my ANC is also often below 1.0 but with the minimum dose of 75mg!

  • ciaci
    ciaci Member Posts: 315
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    Hi, Lili! I just finished exactly four years on Ibrance and Letrozole, still going strong. We waited until I had taken the combo for six months before having my first follow-up scan, which was clear, and I've shown No Evidence of Active Disease since then. Before that, I had a lump in my breast (primary) which was removed during the surgical biopsy, and a met on my spine that resolved with the Ibrance (I was Stage 4 de novo). My breast cancer is ER/PR+, HER2-. I also tend to run low on Vitamin D, so take an OTC supplement every day.

    The only lifestyle thing I changed was not drinking. I was never a big drinker in the first place, so when my oncologist said no alcohol (puts a strain on your liver, which is a favorite site for metastases, so why risk it?), I took it to heart, and haven't had a drink since. I don't miss it.

    Other than that, I eat what I want, and I do what I want. My avatar pic is me ATVing in the Nevada desert after my first clear PET scan. I expect to be around a good, long, time, and plan to enjoy every minute of it!

  • lili75
    lili75 Member Posts: 14
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    Hi Ciaci,

    Ibrance suits you very well! What a chance to recharge your batteries like this in the Nevada desert! What is your daily dose of Vitamin D ?

  • mswife
    mswife Member Posts: 66
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    any new updates re: people on Ibrance long-term?

    Boards seem so quiet since these updates :(

  • chicagoan
    chicagoan Member Posts: 976
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    Still on Ibrance-grateful to have gotten 86 cycles so far. My regime is the same as described above. I try to eat well and stay active but know that my life is in God's hands.

  • spookiesmom
    spookiesmom Member Posts: 8,176
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    I was off everything for about a year. Still had port, and labs. My tumor markers moved up enough for MO to call it concerning, had PET/ct, will get results Monday.

    Am I worried? Yes, but not enough to be loosing sleep. Keep it out of mind as much as possible. Will do what MO wants.

  • jensgotthis
    jensgotthis Member Posts: 671
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    Just visiting the boards after a long break.

    I’m still on Ibrance and still NEAD, since 2016.

    I’m so lucky and grateful that it continue to works for me.

  • chicagoan
    chicagoan Member Posts: 976
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    Jen-thanks for this update. Glad to know that you are still doing well.

  • malebreastc
    malebreastc Member Posts: 89
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    Hi Jensgotthis

    Are you on Ibrance only or a hormone treatment like Fulvestrant or AI ?