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Zometa side effects

everetta
everetta Member Posts: 27

I will be having my first infusion of Zometa this week. Has anyone had any side effects from Zometa? I hope to be able to travel a few days after and to go to work the next day and wonder if this is a reasonable plan.

Comments

  • bgirl
    bgirl Member Posts: 435
    edited May 2019

    everetta I had my first infusion of Zometa last Monday. It was combined with my ongoing Herceptin so it is possible my SEs could be different. I had a friend who did this infusion and had very few SEs. I, on the other hand, had a 101 fever the next day and a lower fever the day after that. Traveling a few days after I probably could have done. Going to work the next day, not so much. They list flu-like symptoms as a possible reaction. I probably wouldn't plan anything at work that I couldn't miss. Would you go to work if you had the flu?? Otherwise, you might feel okay and be able to go.

  • reflect
    reflect Member Posts: 280
    edited May 2019

    hi everette, I've had 3 infusions of zometa at 6 month intervals and haven't had any side effects at all. Good luck to you!

  • bravepoint
    bravepoint Member Posts: 232
    edited May 2019

    everetta, After my first Zometa infusion, I was so achy and sore the next morning that I could hardly get out of bed. I took 2 Extra Strength Tylenol and that helped. After subsequent Zometa infusions, I have been fine. based on my experience, I wouldn't plan on going to work the next day after your first Zometa but travelling a few days later will probably OK.,

  • everetta
    everetta Member Posts: 27
    edited May 2022

    I have had 6 infusions of zometa. My first infusion I had very bad side effects and the other 5 I had no side effects. Originally I had been told to have three yers of infusions. Now at the end of three years they are suggesting up to 5 years. Has anyone had this recommendation?

  • lvc
    lvc Member Posts: 1

    Everetta, I second bgirl’s comments. I had my first infusion on Thursday & was pretty much knocked flat on Friday. Flu-like symptoms is exactly how it feels: fever, headache, stiff & sore. I’m better today, but not back to 100%. Next time, I’m planning on a Friday infusion so I won’t miss any work.

  • threetree
    threetree Member Posts: 1,155

    I'm getting my first Zometa infusion next Wed the 9th, along with my fulvestrant shots. For those of you who had side effects from the Zometa, at what point did they kick in? I've seen all the bad side effects including nausea, vomiting, fever, soreness, constipation, diarrhea, etc. I don't want to risk having any of those side effects in my friend's car. I have an old childhood friend who kindly drives me to these "events" and I don't want to cause any unnecessary trouble for her. Also, I'm getting this on the 9th and am supposed to take a plane to visit another old childhood friend in Alaska on the 14th. If I have a bad reaction to the Zometa, will I be able to travel by the 14th? I'd just as soon skip this until I get back from my trip but I've had new fractures and the dr seems to think I'm not taking this seriously enough or something, so I decided to do it sooner than later. I've seen where some have no reaction at all and some only have a reaction the first time. Others seem to have had worse problems and have had days of a bad reactions both the first and subsequent times. Any thoughts or suggestions anyone? Thanks.

  • anx789
    anx789 Member Posts: 226

    threetree, I had a very bad flu like symptoms, with my first infusion with Zometa, it kicked in around midnight on the same day and lasted for two days.

  • threetree
    threetree Member Posts: 1,155

    anx789 - Thanks so much, that helps. Sorry you had to go through that, as it sounds like some don't have a reaction at all.

  • spookiesmom
    spookiesmom Member Posts: 8,148

    I’ve had 1 infusion, the day after I was tired, and a little achey. Then I was ok.

  • threetree
    threetree Member Posts: 1,155

    Spookiesmom - Thanks, that's encouraging, because I'm so worried. Sounds like you haven't had too many problems. Good for you.

  • lillyishere
    lillyishere Member Posts: 769

    I had flu-like symptoms after 24 hours of Zometa. Make sure you drink lots of water before and during Zometa infusion. Also, if you start flu-like symptoms, take a warm bath, you'll feel so much better. It usually lasts 24 hours or so. Good luck! You are doing the right thing since Zometa has some anti-cancer properties as well.

  • threetree
    threetree Member Posts: 1,155

    Lily, thank you so much. I hadn't thought about drinking water during the infusion, but that's a great idea. If the negatives only last about 24 hours, I'll be fine, but if I get the kind that can go for days, I might have trouble I don't need.

  • mandy23
    mandy23 Member Posts: 92

    @threetree -

    So…I'll be the one with the weird symptoms as a result of Zometa. Hopefully it won't happen to you.

    My first infusion was the end of June. The infusion itself — no problem. I drove myself to and from the clinic.

    24 hours later — low grade temp and chills….not really too bad…kinda like you get from some immunizations.

    I thought to myself….well, that wasn't too bad.

    6 days later! Both of my legs from above my knees to my ankles hurt like heck. It felt like they were in a clamp. I had a hard time bending my leg at the knee without pushing it with my hand. I was hobbling around like a little old lady. I started an alternating Tylenol / Advil regimen to ease the pain. This lasted about 3 days. I think the worst part of it was that I was afraid this was something permanent. After 3 days, it pretty quickly resolved itself and I've had no problems since.

    I haven't discussed this with my MO yet, but I see her in September. As much as it wasn't pleasant, as long as it went away, I'm still willing to do this again in December. (I'm on a 6 month cycle for it.) Mostly, it took me by surprise and I do think it's supposed to be a good drug…so you really should try it.

    Good luck to you and hopefully it will be no big deal for you.

  • threetree
    threetree Member Posts: 1,155

    Mandy23 - Oh what a terrible experience you had. Sounds like you managed it well though. If I woke up with the bad legs like you had, I probably would have freaked out and gone to a dr somewhere. I would have been afraid that it was real serious and like you said, possibly permanent. Well it is good to hear that something like that can happen, so I won't be caught off guard if it does. The onc wanted me to take this back when I was "just" stage 3, and now that I'm stage 4, I think I probably ought to do it, but as before, the side effects I read about are very scary, and I think that while the bone strengthening might be good, the anti cancer effects to my knowledge, are minimal or controversial or something, but not a real sure bet.

  • threetree
    threetree Member Posts: 1,155

    Can anyone tell me what sort of dental work, if any, you can get while taking Zometa? I'm supposed to get my first Zometa infusion this coming Wednesday, but now over the week-end, I've developed a problem in an old top molar with a very old filling in it. I wouldn't think to do anything like an implant while getting Zomeat, but what about things like crowns or even a root canal? I think I've read on here before that "lighter" dental work is pretty much OK to get along with Zometa. If anyone has any experience or knowledge about this I'd be most grateful to hear what you have to say.

  • maggie15
    maggie15 Member Posts: 757

    Extractions (and implants) should be avoided. Root canals, crowns and fillings are OK. You can always delay the Zometa infusion until a dentist has checked the tooth and determined an extraction is not necessary (worth it to avoid the possibility of ONJ.) Good luck with the tooth!

  • threetree
    threetree Member Posts: 1,155

    Maggie thanks so very much. I'm debating whether to delay or not, but my oncologist already thinks I've waited too long and that the reasons I've had haven't been very good ones. The tooth has calmed down a little this morning, so I'm going to give it another day maybe. The dentist and I have talked about putting a crown on this one for a long time, but I've just never gotten around to it. Hopefully there is nothing bad enough there to warrant an extraction. Also, I think I'm having jaw problems from the muscle tension/joint aches caused by the fulvestrant and I might have two separate things going on actually. I think the dentist could help me sort it out though.

  • atl1967
    atl1967 Member Posts: 2

    Hello, all! This thread was so helpful to me before I started Zometa, so I wanted to add to it. I had ILC, stage 1C, and was put on Anastrozole with a baseline bone scan. I experienced some bone loss one year later that no one worried about because I was still within the expected bone loss for my age (55). I asked that they repeat at year later and it showed 4% loss on both hips. Since I already do weight bearing exercises and get calcium through diet, I was interested in a bone strengthener, and my oncologist agreed.

    The process took about 2 hours - getting the IV and blood test; getting the infusion (~45 minutes); and getting saline afterwards (15 minutes). (To be honest, it was very emotional being in the infusion center as that's where fellow patients were getting chemotherapy.).

    I didn't have any flu-like symptoms that first evening, and thought I was free and clear, but almost exactly 24 hours later, I began to feel feverish. I took a couple of Tylenol and thought I was fine. That evening, I had the chills so badly I could barely get my PJs on! But I went to bed early, took Nyquil, and the next day I was feeling not 100% but as though I had just gotten over the flu - a little weak, but nothing that stopped me from going to work. Mandy23, I didn't have leg pain to the degree that you did, but I did feel a very, very mild discomfort throughout my legs. I chose to tell myself it was the superglue of the Zometa going into my bones.

    Since then, I have had two injections. The second one, I had symptoms about half as bad as the first time - a little achy, mild fever, treated with Tylenol. I just completed the third injection and I had no symptoms.

    Hope that's helpful for others taking Zometa!

  • kstat23
    kstat23 Member Posts: 1
    edited January 16

    Hi can someone help me please. I’m to start the zometa infusion and I am so scared about the ONJ side effect. I have severe dental anxiety I take excellent care of my teeth and I don’t need any teeth pulled. But always worried about something happening with my teeth and going on zometa is driving me crazy with worry about dental side effects. Is ONJ rare and should I not be so worried about it if I don’t need teeth pulled?? Thank you

  • moderators
    moderators Posts: 7,659

    Welcome, @kstat23, we're so sorry you find yourself here. We know how difficult it can be to weight the benefits and downsides of breast cancer treatment, and your concerns are valid! Particularly since you struggle with dental health anxiety. Osteonecrosis of the jaw is a relatively uncommon side effect of Zometa infusions, estimated to affect approximately 1-2% of people on Zometa after a year on the drug, but your risk goes up each additional year on the drug. Invasive dental work can, unfortunately, increase your risk of developing ONJ. If you search 'osteonecrosis' here in the forums, several threads exist with other members sharing their experiences that you may find helpful.

    Some members suggested seeing a periodontist prior to starting the infusions to get a full dental workup and identify any potential problem areas, and finding a dentist or specialist in your area that deals with ONJ and has experience in preventative care for patients taking this specific class of drug so you can have regular checkups on the health of your jaws and mouth. We know the idea of developing a side effect like ONJ is scary, but having a good medical support team that also includes your dental health can help make it a less stressful and frightening prospect.

    The Mods

  • mandy23
    mandy23 Member Posts: 92

    Since I was one who had weird side effects the first time I had Zometa, I thought I should update after my 2nd infusion. Upthread you can see my post about my 1st infusion. I discussed this with my MO. She said that shouldn't happen. So, she lowered the dosage and had them run the infusion more slowly for my 2nd infusion. That was now about 10 days ago and I have had NO side effects from this 2nd treatment! Do discuss any side effects with your MO and they can maybe make adjustments for you.

  • lillyishere
    lillyishere Member Posts: 769

    kstat23, I underwent Zometa infusions every 6 months for three years. Although I was informed about the risk of ONJ, which made me nervous, my dentist reassured me that the chances of developing ONJ were slim in case of any invasive dental work. Considering the benefits of Zometa, I feel fortunate to have had this treatment option.

    What stage BC are you?

  • doodler
    doodler Member Posts: 34

    I underwent my first Zometa infusion this past Friday. I'm dropping by to post my side effects: just some very mild chills and aches, roughly from 12 to 24 hours after taking it. No nausea, no other side effects so far as I can tell. An easy 15-minute infusion.

    I stayed hydrated based on others' advice, drinking extra water the day before and the day of the infusion, so perhaps it helped me.

  • threetree
    threetree Member Posts: 1,155

    Doodler - Sounds like you did pretty well. I had my first one in mid November with second one supposed to happen fairly soon. I had 24 hours of some of the worst shaking chills and body aches that I can remember. The second day was a bit better, but not good. By the third day I was just tired. That was after "hydrating" ahead of time and having a very drawn out (45 min) infusion. I'm still having trouble understanding just what the real benefits are and when and how they manifest. Going to go ahead with the second infusion, but not so far able to see where the risks of this outweigh any noticeable rewards.

  • doodler
    doodler Member Posts: 34

    Threetree It is definitely different for everyone. I'm not sure what the alternatives are for a "bone builder", I'm hoping to continue on this if it keeps going smoothly. I'm post-menopause and have bone mets in several locations along the length of my spine and a few other spots. My skull is the only one I feel - a sharp sudden pain that comes and goes. If it helps prevent or slow down more of that, then I'm on board with a bone builder. The meds, the side effects, and the interactions are like a complicated balance, for sure, though. Kisqali is introduced to my meds mix this week, we'll see how that goes.

  • threetree
    threetree Member Posts: 1,155

    Doodler - I think that once you get going on the drugs, you will see improvement for sure. I've got bone mets too. They all showed up a year ago in spine, ribs, and sternum. I'm on Faslodex and Verzenio and while it did take a few months to see solid improvement ( about 4 months), it did make a real positive difference. Just be sure to give them time. My old onc scanned at about 2.5 - 3.0 months and I got mixed results, so she was ready to stop the drugs and move on to IV chemo! I told her I'd read that sometimes it can take 3-6 months to see improvement , but she insisted that 2 months was enough to tell if the drugs are working. I insisted on waiting another month, that she reluctantly agreed to, and then she went on maternity leave. The "substitute onc" who is now my regular onc, thank goodness, reviewed the 4 month scans and said all was good. So far things have remained that way and I've been able to stay on these first line drugs for many more months than the old onc would have gone with. I note this issue, because since my experience I have noticed where many others just getting started on some of these drugs have the same issue about just how much time you can legitimately give them before deciding whether they are working or not. I hope the Zometa, Kisqali, and letrozole work for you for a really long time!

    Re the Zometa, I'm going to go with it, but I've just never read about anyone being able to show tangible benefits or "proof" if you will, that it has made a difference for them. It seems we all just have to assume we are better off, given what the statistics say.

  • moderators
    moderators Posts: 7,659

    We're so glad to hear it went well, @doodler, hoping for more of the same as you continue!

  • threetree
    threetree Member Posts: 1,155

    Has anyone had experience with Zometa side effects outside of the "acute phase" side effects immediately following the infusion (chills, body aches, etc.)? I'm curious to hear about any ongoing side effects beyond the initial couple of days, but not so much the necrosis stuff. I'm interested in knowing if anyone has had continuing side effects like muscle and joint pain, headaches, depression, lack of interest, and stomach issues,etc. I got a whole new set of side effects, beyond what I get with Verzenio and Fulvestrant, after my first Zometa infusion in November, and they are not going away. I'm ever more curious as to whether they are from the Zometa. I don't hear much about anything beyond those first few days, but apparently there can be many. Any thoughts and comments would be much appreciated. Thanks!