Fill Out Your Profile to share more about you. Learn more...

Zometa - What was your experience?

Options
miriandra
miriandra Member Posts: 2,042
edited November 2022 in Bone Health and Bone Loss

My last bone scan showed mid-level osteopenia, and my doc recommended Zometa. I was lucky enough that my cancer seems to have been caught by my mastectomy - no chemo or rads. I'm on anastrozole just to be safe.

Most of the other Zometa threads seem to be for very complex cases where the posters are juggling many conditions and meds. What are the experiences of people who are only undergoing Zometa? Did it lay you out for a long time, or did you barely notice? My doc warned about flu-like symptoms ( 0_0 ) for a few days, but these are often helped by taking Claratin for a few days before the treatment.

Thank you for your insights and thoughts!

«1

Comments

  • FarAwayToo
    FarAwayToo Member Posts: 79
    Options

    Hi Miriandra, I am going for my 5th infusion tomorrow. I'm getting them every 6 months.

    I never had any issues with it. I know you are more likely to experience flu like symptoms with your first infusion, but I never had any. I read here to request it to be run over 30 min (standard is 15 min), and my nurses always complied. I also make sure I am well hydrated the day before and of the infusion, as Zometa is excreted through the kidneys. In fact, they will check your kidney function (via blood test) prior to the infusion.

    I am yet to get my follow up bone density test to see if 2 years/4 infusions that I had helped. However, there is potential some slight benefit to recurrence free survival in Zometa users. (I can attach links to studies if you are interested)

    Good luck with your treatment!

    P.S. we are practically neighbors :)

  • sunshine99
    sunshine99 Member Posts: 2,591
    Options

    Hi Miri. I'm Stage IV and am getting Zometa infusions once a month. I have mets to my bones and am taking Ibrance and Arimidex.

    The first two infusions of Zometa were followed by a slight fever, and a very slight feeling of "yuck". After those two, I took Claritin for the day before, of and after the infusion and I felt better. I've had six infusions so far. I think I had a slight fever after the last infusion, but overall, it's not been difficult at all. I asked my MO about taking the Claritin, and she said "Why not?"

    I hope it goes well for you.

  • minustwo
    minustwo Member Posts: 13,077
    Options

    I saw my MO for yearly check today and discussed bone health. He said stick with Prolia for now - or maybe Reclast. His recommendation is that Zometa is for bone mets - which matches with what Sunshine says. He recommended I go see an endocrinologist that specializes in bone health.

  • OCDAmy
    OCDAmy Member Posts: 289
    Options

    I’ve had two infusions of zometa and had no side effects at all!

  • lillyishere
    lillyishere Member Posts: 770
    Options

    I am on letrozole for 11 months now. I took my first Zometa infusion in August. MO suggested getting Zometa 2xYr for 3 years since it shows to reduce recurrence. My bones were normal before starting letrozole but who knows after 11 months? Still, the recommendation was for recurrence benefit even in a very small percentage. I had flu-like symptoms the second day after infusion that lasted 24 hr. and I was fine after that.

  • bravepoint
    bravepoint Member Posts: 232
    Options

    I did 6 Zometa infusions over 3 years. My MO like LillyIsHere's felt that it reduced recurrence and spread to bones. I felt awful for 24 hours after my first infusion but nothing after the next 5. A bone scan part way through showed no change from the one done prior to starting Exemestane. I go for a bone scan every 2 years now.

  • miriandra
    miriandra Member Posts: 2,042
    Options

    Thank you all for your input and ideas. You gave me some good questions to ask my doc about.

  • minustwo
    minustwo Member Posts: 13,077
    Options

    I do have an appointment with the bone endocrinologist the end of the month. I'll post any "exciting" news I hear from her.

  • ABC4978
    ABC4978 Member Posts: 23
    Options

    Just recently told I have bone bets.. I have not started any treatment other than Zometa. MO said once a month, my next one is 11/16. First infusion went fine however the next day I felt like I got hit by a truck and it lasted for 2 days! every bone in my body hurt some even sensitive to touch. I ended up staying in bed on a heating pad.. later I started with the chills so bad I couldnt stop shaking which lead to a super hot shower to get rid of that.. My experience was terrible !

  • sunshine99
    sunshine99 Member Posts: 2,591
    Options

    Hi ABC, I hope they get progressively better for you. I know mine did and I really hope yours do, also.

  • ABC4978
    ABC4978 Member Posts: 23
    Options

    sunshine99 How many have you had? I've read increasing hydration helps? Maybe Ill drink pedialyte before my next treatment! One of worries is the dentist and zometa..

  • sunshine99
    sunshine99 Member Posts: 2,591
    Options

    ABC, I've had seven infusions so far. I keep a spreadsheet to track my infusions and the side effects. For the first infusion, I had nausea (pretty bad) and a fever for a few days, Infusion #2, I had mild nausea and a slight fever. My MO did give me a prescription for Compazine (or whatever its generic is). I haven't used it since the 2nd infusion.

    I also haven't taken the Claritin since the second infusion, and I don't remember drinking any extra water, but it certainly can't hurt.

    The Zometa infusion nurse ALWAYS asks me if I have had or am going to have any dental work (cleanings don't count), since osteonecrosis of the jaw (ONJ) is a potential side effect. I did take a print out of the Zometa mediation to my dentist, just so that they would know.

    I'm really hoping that it gets better for you. I was seriously dreading having to do this every month, but it turned out to be a sort of non-event, thankfully.

    (((hugs)))

  • ABC4978
    ABC4978 Member Posts: 23
    Options

    Sunshine99.. I'm taking claritin daily for other reasons so maybe that will be helpful 😊 although I'm not happy about the pain from last time I feel better equipt this time to handle it. I'll keep pain meds going and keep fluids down... hoping this will give me relief.

  • still-me40
    still-me40 Member Posts: 8
    Options

    I had a zometa infusion on Friday and I spent the whole weekend in bed with nausea, chills and muscle/bone and joint pain. For me it was just awful, I can’t believe the nurses told me “mild flu like symptoms” I couldn’t get out of bed!!

    Just posting so that others who get it don’t freak out if they feel like crap afterwards.

  • ABC4978
    ABC4978 Member Posts: 23
    Options

    still me 40: I had my 2nd infusion and was unafraid to not take pain meds as the 1st infusion was terrible for me.

    I started pain meds day of every 2 hrs switching between Ibuprofen and a half of my percocet 10 and stayed on that regiment for 3 days.. I even set alarms for the night to keep them consistent then slowly came off and still experience some pain but was manageable.

    So sorry you have to deal with this.. hope this helps


  • lexica
    lexica Member Posts: 138
    Options

    I had my first Zometa infusion last Wednesday (MO switched me from Prolia recently...) and it definitely knocked me out for just shy of 48 hours. I had chills and muscle aches, nausea and no appetite. They did warn me, but I didn't think it would be as bad as it was. I would say moderate flu-like symptoms for me because I could barely move from the couch, but didn't have a fever. I will make sure to take tylenol after my next infusion!

  • kbl
    kbl Member Posts: 2,680
    Options

    ABC, my first infusion sounds just like you described. My oncologist thought it would be better to have the infusion over an hour instead of a half hour. I also read about taking Claritin the night before, the day of, and the day after. And I take Tylenol the night before and day of. I've had no more side effects other than the first time.

  • ijl
    ijl Member Posts: 16
    Options

    your case sounds very similar to mine: no chemo , no radiation just anastrazole.

    I have a mild case of osteopenia and was prescribed Zameta. I only had one infusion so far and had bad experience with it. I had a bit of fever which I was warned about. But in a few days I developed eye scleritis which was a bit scary. Apparently it is a less known side effect . I am not sure I want to get another one. In fact I am having an appointment with a Stanford endocrinologist who specializes in bone health to talk about this.

    I heard that Prolia could be gentler but I am not sure.

    I might just do nothing for year and do a bone scan then.


  • lillyishere
    lillyishere Member Posts: 770
    Options

    his is what I received when I had Zometa infusion:

    image

  • lillyishere
    lillyishere Member Posts: 770
    Options

    I had the second Zometa infusion 2 weeks ago and I had milder after-infusion symptoms than the first time. Also, I felt great, same as before BC diagnosis after 10 days of Zometa.

  • typhoon
    typhoon Member Posts: 59
    Options

    I'm getting my first infusion of Zometa tomorrow (my DEXA scan showed that I'm on the edge of osteoporosis, which won't be helped by the Arimidex I'm also taking, so my MO prescribed Zometa every six months). I greatly appreciate all of the information you ladies have shared!

  • miriandra
    miriandra Member Posts: 2,042
    Options

    Good luck Typhoon! Please let us know how it goes. Lilly, I take hope from your great long-term results.

    My dentist did an updated panoramic x-ray to get a baseline for my jaw bones. (Looked good, as far as he said.) I have my first infusion scheduled for April 5th. I've taken a few days off work, just in case it's a bit rough.

  • lillyishere
    lillyishere Member Posts: 770
    Options

    Don't worry if the first time is a bit difficult, the second time it is much easier. My theory is that Zometa used every 6 months has lower risk of developing Osteonecrosis Of The Jaw comparing with monthly Zometa.

  • blue22
    blue22 Member Posts: 172
    Options

    I had my first Zometa infusion a few weeks ago. I felt fine immediately afterwards, and made sure I was really hydrated both before and after.

    I woke up at 2 am with chills and could barely move. I tried to go downstairs and make a tea, but got really sick to my stomach and ended up on the bathroom floor thinking I was going to throw up. I took an Ativan and went back to sleep. I was unable to function at all the entire day and could barely eat anything or get out of bed. At some point I talked to my Drs. office and they suggested Advil and Tylenol and also prescribed Zofran. By the morning of the next day I was able to sit in bed and work a bit, and by the afternoon I was walking on the treadmill holding on to the handlebar so I could get in some activity. I was still nauseas for a few days afterwards but could mostly return to normal.

    It was not fun, but doable. Just be ready for it.

  • Hopfull2
    Hopfull2 Member Posts: 287
    Options

    d my first Zometa infusion in January. I’m due for it every 3 months. I had zero side effects.

  • miriandra
    miriandra Member Posts: 2,042
    Options

    My doc recommended Claritin the day before, the day of, and maybe the day after. She said that can help the body adjust too. Did anyone else try that?

  • typhoon
    typhoon Member Posts: 59
    Options

    So I had my first Zometa infusion yesterday morning. The infusion took about 45 minutes, and was completely free of any kind of reaction. I went back to work for the rest of the day, feeling fine. I was a little more tired than normal last night, so went to bed about 9 pm. The freight train described by blue22 hit me about 2 o'clock this morning. Woke myself up shivering, every bone and joint hurt, barely made it down to the kitchen before throwing up, etc., etc. I ended up drinking hot water with lemon, took a hot bath, and fell back asleep in front of the fire. Woke up again at 4:30, still nauseous and in pain; took two Advil, and that seems to have done the trick. I'm still weak and shaky, but the Advil addressed the bone/joint pain and the nausea, and I'm back in front of the fire, drinking coffee. Very glad that I took today off from work, and hope that the worst of the reaction is over with.

    Once again, thank you all for sharing your experiences. When the reaction hit, I knew what was happening and was prepared to deal with it, and that is a wonderful gift that you ladies gave me.

  • kbl
    kbl Member Posts: 2,680
    Options

    Typhoon, I’m glad you’re feeling a little better. I didn’t move out of bed for three days except to go to the bathroom. I haven’t had any issues since. I did six treatments of once a month and have now moved to once every three months. I hope you feel better today.

  • typhoon
    typhoon Member Posts: 59
    Options

    KBL, thank you! Yesterday was a loss, spent most of the day in bed, but woke up today feeling perfectly normal (and very hungry). Fingers crossed that I'll follow your example when it comes to future infusions.

  • kbl
    kbl Member Posts: 2,680
    Options

    That’s awesome. One day is not too bad. I’m glad you’re feeling better.