Diagnosed w/Stage IV for 11 yrs-Zometa side effects

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amontro
amontro Member Posts: 504
edited January 2020 in Stage IV/Metastatic Breast Cancer ONLY

I haven't posted since 2016. I was diagnosed in 2008, Stage IV right away, had radiation then. Since then, I am still on the same treatment which is Herceptin (every 3 weeks) and arimidex (once a day). I haven't been in touch because I retired in 2016 and do not have my own computer at home. I've been using the computer at the local library, so I only access it once or twice a week.

Way back, I entered a post in which I said I'm not going to die from the cancer but from the side effects. I've done battle, and won, with many side effects from many meds. The side effect du jour is due to my being infused with Zometa every 12 weeks. I received it more often at the beginning in 2009. On Zometa, there can be no serious dental work because your jaw can collapse. A few years ago, I got an "ulcer" in the roof of my mouth and the bone is exposed. My dental surgeon just had me rinse with Chlorhexedrine (sp?). Last year I sought help from a (get this) Infectious Disease Specialist. She also recommended the chlor and prescribed Nystatin to rinse and swallow. I finally have release and am proactive when I feel the start of irritation. Not so fast! My lower left molars were swelling at the gum and my dentist told me that Zometa caused a hole in the gum under my molars with the bone exposed. Dental surgeon is hands off and I'm seeing IDS again. She has had me on strong Augmentin for a month and a few more weeks to go. If I have a reaction to the Aug, I will be put on intravenous antibiotics. (Just want to add that my dentist was most knowledgeable about everything.) My primary care physician had asked why do I want to see an IDS? My oncologist asked the same thing. My last visit she told me no one had any idea that Zometa would have this effect after all these years. I lived longer than I was supposed to.

I started out to post about my longevity with Stage IV, but I wound up on a rant. Live life the best you can and if you can't, take a nap, read a book, or watch silly stuff on TV.


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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2019

    congratulations on your survival and doing battle with these side effects. Sorry to hear about the dental issues....I would say this: they DO know that prolonged use of these bone strengthening meds can have these ill effects.

    Even people who go off them can have ONJ and other problems years later.

    We are between a rock a hard place to try to make a decision about these treatments.

    Keep on surviving...may you have eleven and even more years ahead of you. Your strength is inspiring. Thanks for sharing xoxo

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  • SusanR
    SusanR Member Posts: 598
    edited December 2019

    Hello Amontro!

    Yesterday, Dec 28th marked 11 years of being Stage IV for me. I also have ONJ and see an Infectious Disease Specialist who has me taking Augmenting 2X a day. My Mets are extensive in my bones.

    You should feel free to celebrate, and you should feel free to vent! Many people think we should just be happy to be alive and not focus on the struggles that accompany this disease, and to those people I say “ yes I'm delighted to be seeing my grandchildren grow up, but don't for one second think this is an easy ride"!!

    Congratulations to you on 11 years of survival amid the storms. I'm with you on living life the best you can!

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited December 2019

    amontro, although you don't post often it's nice hearing from you, Sorry about the zometa complications. I don't have them but have been on the drug nine years. Was once a month thr first two years then every three. Onc doesn't appear concerned with jaw trouble but is she the one who has to live with the complication if it happens to me? That there are no studies long term does not do us any favors.

    Susan, I seem to get that more often these days too, about be happy to be alive. And I like your comment, “yeah, but it ain't an easy ride!” You inspire me with your 11 years.


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  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited January 2020

    Susan, How wonderful to go eleven years, especially remarkable for ER-positive MBC- congratulations and onto a new decade!!!

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  • Chico
    Chico Member Posts: 196
    edited January 2020

    Susan how lovely to see you posting. Yes it is a tough ride but for people like me just over 3 years in and awaiting the result of my mri today it is wonderful to know that both you & Amontro have managed 11 years. You are an inspiration and I for one hope that we can all be celebrating still being here in 11 years time. Thank you both

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  • Chico
    Chico Member Posts: 196
    edited January 2020

    Susan how lovely to see you posting. Yes it is a tough ride but for people like me just over 3 years in and awaiting the result of my mri today it is wonderful to know that both you & Amontro have managed 11 years. You are an inspiration and I for one hope that we can all be celebrating still being here in 11 years time. Thank you both

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  • Kjones13
    Kjones13 Member Posts: 1,520
    edited January 2020

    congrats on 11 years! So sorry to hear of the horrible dental issues! We really are at the mercy of the drugs and the side effects. It sucks. I hope the aug helps. Keep on keepin on and come back and let us know how you are doing!

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