zometa

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  • RMlulu
    RMlulu Member Posts: 1,989
    edited January 2015

    Thanks Susan! Yippee clear bones...sorry about the nodes

    Home from infusion...hydrating now :)


  • jsrose14
    jsrose14 Member Posts: 117
    edited March 2015

    hi. I had my infusion this last July with horrible flu like symptoms for over a week. I just wanted to clarify. I think that when you get it for bone density only issues it's called reclast. When it's for bone mets it's called zometa. Not sure why.


    I will get a dexa scan again in July before i have another infusion. I am on arimidex.


    I think it's funny that they tell you that severe side effects are rare when there are many on this site who have experienced them.


    I agree with the original post this was worse for me than chemo and very traumatic to have to be so sick again. I hope others don't have the "rare" side effects. I will try to hydrate better next time and keep my fingers crossed!!

  • bc101
    bc101 Member Posts: 1,108
    edited March 2015

    jsrose - so sorry the infusion made you sick. I was very sick with my first injection, but for some reason the others have not been bad at all. I try to drink LOTS of water before and I think that helps. I'm taking it for bone loss prevention. All my docs refer to it as Zometa.

    Has anyone had tooth or jaw pain? I'm afraid I have a toothache and am scheduled to see a dentist next week. I'm just deathly afraid she's going to say I need to have the tooth pulled and according to the RX instructions I'm not supposed to have any kind of "invasive surgery" with Zometa. The more I think about this, the more scared I'm getting - the effects of this drug are long lasting and don't leave your body even after you're done with treatments. Therefore the risk for ONJ are long lasting, too. I'm beginning to wonder if I should have chosen this treatment.

  • jsrose14
    jsrose14 Member Posts: 117
    edited March 2015

    Bc101I had a crown for a cracked tooth put in this summer and all was fine. I used a very experience dentist that specializes in crowns. I think the risk of onj is rare. Good luck. Thanks for the advice!

  • bc101
    bc101 Member Posts: 1,108
    edited March 2015

    Thanks so much for sharing that, jsrose! I know my anxiety can get the best of me.

  • Dianarose
    Dianarose Member Posts: 2,407
    edited March 2015

    my dentist said I have severe bone loss in my jar. My teeth have shifted and not sure he can save them all. He is sending me to a specialist to see if bone grafting is an option. Each time I had my Zometa infusion all my teeth hurt for weeks. Now we know why. I am so bummed out. Has this happen to anyone else?


  • bc101
    bc101 Member Posts: 1,108
    edited March 2015

    Diana, I'm so sorry to hear that. Before I started I was warned of the "very small risk" of getting ONJ. I think actually experiencing it would be almost more than I could bear if it happened to me. My NP briefly explained how Zometa works and told me I need to take 1200 mg of calcium per day. DId your MO warn you about the risks? My NP emphasized the benefits and downplayed the risks. Did you have any previous dental issues? I haven't been to the dentist in years. They say you should go before you start, but I didn't do that. Now I am having some tooth pain off and on so have a dentist appt. next week. I called my MO to let her know, but what can you do? If you need dental work done, it must be done.

    I hope that whatever they plan to do will help you.

    Hugs!

  • Holeinone
    Holeinone Member Posts: 2,478
    edited March 2015

    Diana, I recieved 2 Zometa infusions in 2014. My bottom teeth started shifting after the 1st infusion. They hurt. I went to my dentist, had them x-rayed. Roots looked good, healthy.

    I am scheduled for another infusion next month. I had to convince my MO to get this. She brought up the tooth risk, and that getting Zometa for prevention was not standard of care. Well, I was convinced a year ago that I "had" to get it. Not happy the way my teeth look. I wish I had gone to a orthodontist, right in the beginning. So expensive, and one more thing.


  • bc101
    bc101 Member Posts: 1,108
    edited March 2015

    Heleinone, when you say your teeth shifted, were they loose?

    Also, just wondering if either you or Diane were recommended to take calcium?

  • Kathy044
    Kathy044 Member Posts: 433
    edited March 2015
    bc101 it was recommended to me at the time I received the script for Arimidex that I get 1200 mg of calcium per day (preferrably from diet but if required the rest from supplements) but, more important, 1000 iu of vit D too. this was 5 years ago I've since been told to increase the D to 2000 iu per day. This was due to the effect of the AI on bone.

    When I was prescribed editrondate (an oral bisphosphate) for the osteoporosis it actually came as a 90 day cycle, 14 days on the drug, 76 days with an included 500 mg calcium carbonate tablet.

    When I started prolia the drug company sent me a package in the mail with information about osteoporosis and the extra special need to get a total of 1200 mg of calcium a day from diet or supplements if you are on this drug. They also included a sample bottle from a well known company for 500mg calcium carbonate + D tablets.

    [the preview shows this post with 3 paragraphs, I don't know why it all runs together after submitting, sorry]. Kathy


  • 3Holly
    3Holly Member Posts: 223
    edited March 2015

    I have had Zumeta monthly for almost a year now, then they are going to give it every 3 mos. I don't have much for side effects, but last time I told them to administer it as fast as possible (they do give me a choice each time) since my friends were waiting for me, but maybe that's why I've had a headache and been more tired than usual today (kind of wiped out, actually), but not too bad, although I agree that hydrating is key as well. It might be working (had to tell since I also had radiation to my hip/back last year and had pain relief after that).

    Most of my nurse's patients do well on Zumeta, so make sure to call them, my doc always adjusts things asap if not working well. Hope you feel better soon!

  • bc101
    bc101 Member Posts: 1,108
    edited March 2015

    Kathy, yes that's what I take, too. I actually probably get more than I need because I take 1200 mg in supplements, plus drink milk and whatever I get from food. I've increased my Vitamin D, too, as I've read how it can maybe help prevent recurrence and plus it boosts your mood. At least it does for me!

    When I first talked with my NP about Zometa, she said it is even more crucial to take calcium because of the way it works in your body. Sorry, but I can't remember exactly how it works. I was just wondering with the ladies who have tooth / jaw problems, if they take calcium or if there are other factors that increase the risk for ONJ. Just curious.... The ONJ thing really scares me and I am thinking about going off Zometa. The more I read, the more it seems the original study that showed Zometa helps reduce the risk of recurrence is inconclusive. And I'm told the benefit is only 3%. But I"m on Aromasin, postmenopausal and have osteoporosis, so I know I should probably stay on it. Just having second thoughts....

  • Dianarose
    Dianarose Member Posts: 2,407
    edited March 2015

    all I was told was that I might get flu like symptoms. If I were to continue will the bone loss keep getting worse? This all sucks.


  • Holeinone
    Holeinone Member Posts: 2,478
    edited March 2015

    Bc101, you asked about my bottom teeth shifting. There were a little loose. I think it is not that unusual for "older" people to have there teeth shift. I will be 60 in a few months. Wow, that's hard to write....lol....

    Also after the Zometa I did have bone pain in my jaw, it was minor, I had pain in all my joints & bones. I think I am more nervous this time (3rd) than I was the first 2. I guess, the further out from dx you get, the more you wonder what is worth the pain & expensive, And what is not. My bone dexa was normal when I was dx, almost 2 years ago. Also, yes, I take calcium & Vit D...


  • susan3
    susan3 Member Posts: 3,728
    edited March 2015

    I feel your pain holeinone, I get it every other month. Makes me feel like I have been hit by a truck each time. Teeth feel good though....lo

  • shycat
    shycat Member Posts: 76
    edited March 2015

    I will have my first Zometa infusion next Thursday, and then every six months after that.  I'm assuming it doesn't take very long, but my husband wants assurance that I'd be fine driving myself.  I understand that the first time often causes flu-like symptoms, but that's not immediate, right?

  • Holeinone
    Holeinone Member Posts: 2,478
    edited March 2015

    Shy,

    It is similar to getting chemo, only faster. I feel totally fine afterwards. It's the next morning that the flu ish side effects creep in. The first time I received it, they used my port. I had the port yanked, so the next time it was a regular IV.


  • Bluemnm
    Bluemnm Member Posts: 1,078
    edited March 2015

    Shycat,

    You will be fine to drive yourself, the flulike symptoms aren't immediate and hopefully you won't even have them at all. My infusion usually takes around 30 mins total. Best wishes to you.

    Sarah

  • shycat
    shycat Member Posts: 76
    edited March 2015

    Thank you Holeinone and Bluemnm, I'm sure this will reassure my husband. 

  • RMlulu
    RMlulu Member Posts: 1,989
    edited March 2015

    Shycat - you should be fine driving home. Be sure and hydrate well prior to infusion and pop a tynenol. I had flu like issues the second evening and lasted about 12 hours. Just completed #2 with no issues. My infusion last 1 hour....slow with plenty of fluid.

    Best wishes to you!

  • shycat
    shycat Member Posts: 76
    edited March 2015

    RMlulu, thank you for the reminder to hydrate well.  Will dig out my insulated water bottle to take with me, just like during chemo. 

  • Dianarose
    Dianarose Member Posts: 2,407
    edited March 2015

    I went to a specialist about my teeth shifting and the bone loss. He said not much can be done because Zometa stays in our system too long. Years. Only thing they can do is scaling. Sounds like fun, not and a mouth guard to wear a night. Totally bummed out! One of my front teeth is loose. This sucks.


  • bc101
    bc101 Member Posts: 1,108
    edited March 2015

    Diane, how long have you been on Zometa?

  • Dianarose
    Dianarose Member Posts: 2,407
    edited March 2015

    I had 3 infusions over 18 months. I don't want anymore!


  • nakedcoffee
    nakedcoffee Member Posts: 3
    edited October 2015

    I have had 18 infusions one a ,month for 18 months. I drink lots of water everyday with no side effects. My Oc told me I would be on for the of my life.

  • TeamKim
    TeamKim Member Posts: 568
    edited December 2015

    Hi all -

    I have been off the boards for a year or so, but am checking back in -- fun to see some posts here from friends I remember from my lumpy, chemo and rads days. I am on Tamoxifen and Zometa every 6 months now. All has been good for almost 2 years, minimal SEs. But lately a lot of stiffness and pain in my right hip and knee, plus pressure in my right shin, kind of like shin splints. I see my onco after my next Zometa in April, but wondering if anyone else has dealt with this? Maybe it is arthritis and I am just getting old! Lol

  • cp418
    cp418 Member Posts: 7,079
    edited December 2015

    http://www.medpagetoday.com/MeetingCoverage/ASCO/5...

    I've had multiple Zometa infusions due to Femara causing osteopenia. Last onc visit I switched to Prolia and preferred it as an injection not an infusion. Also, I was less achy afterwards. Recent San Antonio BC conference recommended Prolia for BC patients taking an AI.

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited December 2015

    cp.....I had read that too....but they didn't say whether or not it was warranted for those of us previously treated with Zometa ....especially those who don't have bone issues. Worth digging deeper? I like Dr. Gnant and I think he is well respected both here and in Europe...

  • KiwiCatMom
    KiwiCatMom Member Posts: 2,553
    edited December 2015

    Hi! Has anyone had nausea for a week or more after a Zometa infusion? I had several of them and was sick as a dog after the last one, then had to have a tooth pulled (it broke) and developed ONJ, so they stopped mine. I have a friend who was just dx with Stage IV and who had her 3rd Zometa on Monday. She's been in the hospital twice for hydration (IV) and can't even keep water down. Took her anti-nausea pill and threw it up. It just sounds way wrong to me and I'm concerned. She's also taking Aromasin. She had 14 rads to her spine/hip and that caused diarrhea for almost a month. Now they've started breast radiation (she was Stage IV from first dx, had a double masectomy). She had 3 rad treatments (Thurs, Fri, Mon) and the Zometa on Monday.

    Any ideas/feedback welcome.

    Hugs to all,

    Terre

  • cp418
    cp418 Member Posts: 7,079
    edited December 2015

    VR - it took me a while to find this article I previously read. See this link.

    http://www.breastcancer.org/research-news/prolia-r...

    "Our new data suggest that this treatment should be offered to all patients with hormone-receptor-positive breast cancer who are receiving adjuvant aromatase inhibitor therapy, irrespective of their bone health status," said Michael Gnant, M.D., professor of surgery at the Medical University of Vienna.


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