Anyone taking Zometa??

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Hi everyone,

Just got back from my oncologist's office (2 years out this month!) and he has suggested having 4 infusions of Zometa over 2 years to help prevent recurrence. Anyone out there having Zometa for a similar situation? I have had some major dental work done and the jaw bone problem sounds kind of  scary-any problems there?

My onc is very conservative with treatments, so I take it this is a proven, worthwhile step.

Thanks and best wishes,

Catherine

Comments

  • cathmg
    cathmg Member Posts: 278
    edited July 2010

    Wow-is there anyone taking this???????

  • everyminute
    everyminute Member Posts: 1,805
    edited July 2010

    Quite a few people take Zometa for prevention of recurrence but usually we have to bully our oncs into it -nice to see yours is being proactive!

    Do a search on Zometa and that should give you lots of posts about it.

    I begged my onc for it right after radiation and she gives it to me for "prevention of osteoporis" for insurance purposes - but whatever!

  • cathmg
    cathmg Member Posts: 278
    edited July 2010

    Thanks for your reply everyminute-my onc is all science, and wouldn't go for anything that wasn't proven...convincing the insurance co. may be another story.

    I didn't know I could search the whole site...thanks for the tip.

    Cat

  • hrf
    hrf Member Posts: 3,225
    edited July 2010

    I'm also taking it. 2x a year for 3 years. I've had 2 tx so far. I'm on Arimidex and this is to help with bones. However, my insurance won't pay for it. Zometa is covering 50% of the cost as well as the full cost of the infusion.

  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited July 2010

    I was giving a zometa infusion a few weeks ago. (Still doing herceptin.)  I have osteopenia so that's how it was justified for me.

    I was told not to have any major dental work three months from having it, which is no problem for me. I had some bone aches after and was tired for a day but nothing major.  The jaw necrosis SE is very rare.

    Studies are ongoing on zometa but look promising for recurrence prevention.  I'd do it.  

  • hereandnow
    hereandnow Member Posts: 322
    edited July 2010

    Hi Catherine,  my onc told me from the start that her practice is to treat based on large international multicentre trials with long follow up - when I asked her about zometa, she felt there was enough evidence coming through of benefit for prevention of recurrence, that she is happy for me to have it twice a year - I have to pay for it though - well worth it I think. The ONJ - osteonecrosis of the jaw - is a worrying but rare side effect.

  • Mazy1959
    Mazy1959 Member Posts: 1,431
    edited July 2010

    I have taken it for over 3 yrs and no problems so far. I even had to have an emergency extraction and no dead jaw...so all is well.

  • JennyB100104
    JennyB100104 Member Posts: 237
    edited July 2010

    My oncologist is suggesting I do the 2x a year zometa as well. I'm a little concerned about the jaw necrosis se (and I need a root canal at this moment, so clearly the zometa won't be starting for a while for me), but it sounds like a promising treatment to prevent recurrence and I hope I can make it work.

  • cathmg
    cathmg Member Posts: 278
    edited August 2010

    Thanks everyone-JennyB, we'll have to compare notes. Mazy and coolbreeze-good to know you haven't had any problems. Hereandnow-I haven't heard from my onc's office re. what Aetna says, but I'm going to make it work regardless.

    Best, Catherine

  • kathylev
    kathylev Member Posts: 117
    edited August 2010

    I asked my onc about taking zometa even though my bone scan showed everything was within normal range and he said he would give it to me twice a year based on an Austrian study that suggests Zometa fights recurrence.  I haven't decided yet whether or not I'm going to do it. When I google the studies they mostly address premenopausal women with bc, and don't mention whether or not the benefits extend to postmenopausal women.  

    Would love to hear more from postmenopasual women taking Zometa to prevent reccurence.  Thanks.

    Kathy

  • Medigal
    Medigal Member Posts: 1,412
    edited August 2010

    I tried an infusion just one try some years ago with my former Onc.  I have such a sensitive stomach I can't take regular stuff like Boniva etc.  He said it would bypass by stomach and be ok by IV.  Well, a lot HE knew!!  By the time I returned home every joint in my body and my back was in such pain, I was in tears!  Hubby had to return me to him and he said "sometimes" certain people have a bad reaction to it so he guessed he couldn't give me any more. 

    I thought Zometa was mainly for protecting our bones if we take Arimidex etc.  I never knew it has anything to do with fighting recurrence.   However, lately I have been in such pain in my knees and legs that I am in torment especially at night.  I am concerned my second 5 years on Arimidex may have worse SEs than the first.  Does anyone know anything about using Omega Oil on the knees and legs and wrapping them in heat?  This was suggested to me by a relative and she said I could get Omega Oil in Oriental stores.  Has anyone ever tried this for joint or bone pain??  Just curious before I start oiling my body up .  I have been icing the knees but think this may be the wrong way to go since the pain gets worse.  Any advice will be appreciated.  Thanks!

  • rcca
    rcca Member Posts: 59
    edited August 2010

    I will be taking zometa twice a year to combat osteoporosis and recurrence. You do need to be careful to time your major dental work to preven jaw necrosis. I was told that if you have side effects it is usually on from the first infusion and they last 24-48 hours. Hey after chemo I can deal with that.

    I finished chemo yesterday and my first Zometa infusion will be in three weeks. She did not want to add it to my last chemo because if there was a side effect she wanted to know what caused it. So back the the infusion center for me. They told be it will be less than one hour (the infusion itself is 20 minutes) and I can schedule it for a weekend. I am a little concered about all these appointments when I go back to work.

    RCCA

  • GramE
    GramE Member Posts: 5,056
    edited August 2010

    I have had one zometa infusion, last Sept, for osteoporosis prevention.   My onco oked once a year and after some dental work the next 2 weeks, I will have my second infusion.    

    I am 64, very Post menopausal, have osteopenia, Mom and sis both have osteoporosis, and I had no problems with insurance approving payment.   it may be the way the doctor orders it -- as a preventative or as a treatment for ....

    No side effects for me from the first one, but i was told to HYDRATE very well the day before and day of and I had a liter of saline started while the Zometa was brought up and along with the zometa.   Total drip time was about an hour.    

  • Lowrider54
    Lowrider54 Member Posts: 2,721
    edited August 2010

    Medigal...ice does not seem to be the way to go - moist heat would be my option. 

    RCCA - I have spoken with a dentist who is on this board and only major dental work would create a problem - routine cleanings and fillings should not have any effect. 

    The first infusion is the worst as far as se's go.   You may well be able to add it to the regime once they are aware of any reaction  - getting the infusions all done in one appointment so you don't miss work.  My work does work around my appointments.  I try to schedule things all in one day or 1/2 a day on a Friday so if anything should be a problem, I have the entire weekend to recover.

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