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Anyone doing Zometa to reduce risk?



  • sbelizabeth
    sbelizabeth Member Posts: 954
    edited February 2021

    I had one Zometa infusion. It gave me fever and body aches so severe I could barely walk, and I'm a pretty tough old bird. My onc switched to Prolia every six months, and then I moved to another state and found another wonderful onc. He said denosumab (Prolia) and alendronate (Fosamax) had the same mechanism of action for prevention of mets, and alendronate was cheaper and taken orally once a week. So I've been doing alendronate for a year or so.

    It's all a risk/benefit decision. My teeth are very healthy but I would worry if extractions were necessary. There's also emerging information about risk of atypical femur fracture.

    Cancer. The gift that keeps on giving.

  • luckypenny
    luckypenny Member Posts: 13
    edited March 2021

    Hi Blue!

    I recall my first infusion of zometa wiped me out - flu like symptoms, fever etc With each subsequent infusion the side effects went away! Hope that’s the case with you too

  • MaineJen
    MaineJen Member Posts: 148
    edited November 2021

    I just did a search and found this thread. Holy cow. I just had my first zoledronic acid infusion last Tuesday and I thought I Was having an allergic reaction and ended up at the ER. I was told to expect minor "flu like" symptoms but I was so focused on the jaw stuff, I never imagined what it might be like when I got home. A few hours after the infusion, I started to feel the flu symptoms. By 11pm, I had a fever, my muscles were hurting from head to toe so much that I couldn't hold my own body upright. I am not brought down easily - I've been through multiple surgeries, chemo, radiation, etc. - I'm 53. I've got a very high tolerance for pain. This knocked me down and scared the crap out of me. It wasn't an allergic reaction, just a very painful, very awful one. Here I am almost a week later - it took 3 days to shake the fever and body aches, but I'm still headachy and just not 100% right. I couldn't eat for a few days. Constipation too. Just really as bad as any reaction I had to any chemo infusions. I am totally blown away by what the infusion did to me. I understand all of the reasons to do these things. And I guess, now that I know how bad it can be, I'll mentally prepare differently for the next ones (once every 6 months). But I wish someone had said "just be prepared, it's possible this will be as rough as anything you've done so far" and maybe then I wouldn't have freaked out and gone to the ER. Not even my worst chemo days (and I had some very bad ones) led me to the ER. But I think that's because I expected to feel horrific. Anyway, now that I've read this thread, I feel much less alone. And maybe - based on what I've read here - the next ones won't be as bad. To me, I'd really do anything to protect myself from recurrence - but I just feel like I need to know what I'm getting into in order to cope effectively. Or to endure. Anyway, wow! I could never have guessed that, after everything I've been through, this one "should be fairly easy" infusion would be the thing to send me to the ER. Thanks for all of your posts. I feel so relieved that it wasn't just me! Onward!

  • rah2464
    rah2464 Member Posts: 1,192
    edited November 2021

    I had a pretty strong reaction as well to my first infusion, although it kicked in about 18 hours later. I felt pretty crappy for about two days. I have my next (annual) infusion in March and I think my oncologist will add some premeds into the drip, my guess is benadryl or something to reduce the potential reaction. I will try to remember and post back here when I have it.

  • kaylie57410
    kaylie57410 Member Posts: 117
    edited November 2021

    hi there- I am almost 4.5 years out from and doing well-have had stable osteopenia for years-- I am one who will be on letrozole for 7 years--stage 2b- with high oncotype score--/2 nodes--I had my first zometa infusion in july and will continue every 6 month for 3 years--I was not expecting the side effects I had--awful total body aches the 2 nd day that lasted only 1 day and on day 8 my 3 areas of regular age related arthritis - foot,neck ,base of thumbs flared and very painful for 3 days- treated with warm hand soaks and otc pain pains--will be better prepared next time in January---will stick with it as doing all I can to reduce recurrence risk to bone and progressing to osteoporosis--next dexascan next summer

    have been on letrozole 4 years this January and other than insomnia and morning stiffness am doing fine with it-think of it as my best friend going forward--best to all-

  • new_direction
    new_direction Member Posts: 40
    edited November 2021

    Kaylie... I don't know if it is an option for you but I felt much better after switching from letrozole to anastrozole.

    Kmom... I have done Zometa as well. I like the thought of both a (slight or possible) risk reduction, but also prevention of boneloss. I have felt the side effects were worse after the first treatment and one of the nurses said it could be reduced by prolonging the infusion time a bit. Dont know if that i true.

  • jen2957
    jen2957 Member Posts: 75
    edited January 2022

    Hi, all!i know this is an older thread, but I was so happy to see some more recent posts! I had my first Zometa (zoledronic acid) infusion today to counter any negative effects of Exemestane and potentially minimize risks of bone mets - it was infused over 20 minutes and ended at about 1:15 PM EST. It’s now 10:30 PM and I haven’t felt much but a headache, but I got my second Lupron injection today, too, so the headache could be from that.
    I am hoping I get lucky and don’t have the Late Phase Reaction, but it sounds like several of you didn’t have any symptoms until hours or a couple of days later.

    I will be getting the infusions as a preventative every 6 months, and understand that the first one is the most likely to cause reactions. I haven’t had my Dexascan yet, as the schedulers are a bit overwhelmed with back-logged appointments and absences due to Covid. I’m curious to see how these 51 year old bones are holding up!

    Any advice from anyone who has endured this treatment for several infusions?

    Hope everyone is well and enjoying the beginnings of a new year!


  • blue22
    blue22 Member Posts: 170
    edited January 2022

    Hi Jen,

    I forgot how bad this was until I re-read my post and memories started coming back. My MO had warned me it might be bad, she had a few patients who had bad experiences, so at least I was mentally prepared.

    If I remember correctly, it didn't hit until the middle of the night, and I woke up feeling as if I had the flu. I had pretty bad nausea, so if you have meds for that be ready. I remember having a hard time even getting downstairs to get a glass of water. It took a few days before I started getting back to normal. I don't remember much of the details other than really bad nausea and being completely wiped out.

    My advice: Have meds and a glass of water next to your bed in case you need it in the middle of the night. Take it easy tomorrow if you are not feeling well and just remind yourself you will start to feel better soon.

    My next infusion was ok, it was a completely different experience.

    Good luck - you will get though it!

    Take Care,


  • rah2464
    rah2464 Member Posts: 1,192
    edited January 2022

    Jen stay really hydrated and be prepared for delayed symptoms. I think mine kicked in about 18 hours after my first infusion. Just felt fluish kind of crappy for a day or so. Hopefully you won't experience any symptoms at all.

  • typhoon
    typhoon Member Posts: 59
    edited January 2022

    Hi Jen - I'm also on Zometa (every six months) and have had two infusions so far. The first infusion hit hard (middle of the night after the infusion, severe flu symptoms and overall body aches). For the second infusion, my MO ordered a liter of saline fluid to be infused concurrently and slowed down the rate of infusion. The second infusion took about 90 minutes, but I had no reaction at all afterwards. I plan to follow the same regimen for my future infusions. Here's hoping you had a peaceful night and no reactions to your first infusion!

  • blue22
    blue22 Member Posts: 170
    edited January 2022

    I forgot about the hydration - my MO warned me and I prepared by starting extra hydration a day or two before the actual infusion.... no idea if it would have been worse without the hydration.

    I think I might have had saline with my second infusion...

  • jayelbee
    jayelbee Member Posts: 2
    edited October 2022

    Hi all, if there is a newer thread, let me know, but am glad to find this one. Diagnosed August 2019 with stage Ib tumor but anatomic stage 3 as it was in 4 lymph nodes. Anyone else have sharp joint pain after ZA? Does pain get worse with each infusion? Had my first zoledronic acid ZA infusion in April 2022 to reduce risk of mets. Had eye pain, flu like symptoms, several totally sleepless nights, with feeling crappy lasting about two weeks. After several months, intermittent but persistent hip pain started. Would describe that pain as slightly sharp and achy. It could be the ZA or arthritis. Scheduled for my next infusion in a week but am concerned about increased bone/joint pain. Had the trifecta of treatments (surg, chemo, rad). Also on femara.

  • lillyishere
    lillyishere Member Posts: 757
    edited October 2022

    The first treatment is the most difficult one. Most people say that you won't have SE on the second treatment and after. I did have some SE on other treatments. It gets better for sure. Make sure you drink plenty of water before, during, and after infusion to flush the kidneys. I had 5 infusions every 6 months and the last one is coming up at beginning of February. Hang in there. Hopefully it will reduce the recurrance risk.

  • tweedle
    tweedle Member Posts: 17
    edited October 2022

    I'm getting my first Zometa infusion tomorrow afternoon. I am trying to be informed, but instead am becoming afraid. I'm a kidney cancer survivor, so I am considered positive for kidney disease. A couple weeks ago, I had a swollen jaw, but was inconclusive in the x-rays for an abscess. I'm afraid for my jaw if there is a tiny abscess in there. My sisters planned a retreat for the weekend, that would take me away from my provider, and I'm nervous about having side effects. Any words of wisdom?

  • lillyishere
    lillyishere Member Posts: 757
    edited October 2022

    tweedle, first question, have you checked with your dentist? It is important since zometa can make the bones not to heal in case you need to remove a tooth. Second, is Zometa infusion going to be every month or 6 months?

    About SE, don't worry, it means that the infusion is working. The first time is a bit difficult but we have seen worse :). Make sure you drink lots of water to flush the kidneys. Some people have flu-like symptoms after 24 hours of the infusion and some people don't have any problems at all.

  • gb2115
    gb2115 Member Posts: 547
    edited October 2022

    I'm on Zometa partially to reduce risk, but also for osteoporosis. I'm in my 40s and ended up with significant osteoporosis after 4 years of tamoxifen and a recurrence. So starting the AIs and Zoladex she thought it best to treat the bones. I'm aware of the osteonecrosis risk...not thrilled. However, the dentist bumped me up to more frequent cleanings and exams.

    For me, first infusion was intense, similar to chemo without the vomiting. The second one, I had no side effects.

    FWIW, I also have significant aches and pains, but figure it's the AI rather than the Zometa. Though I'm wondering if I need to maybe see rheumatology, not sure.