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Zometa side effects

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  • jerseygirl1215
    jerseygirl1215 Member Posts: 2
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    Hi, I'm new to this forum. Diagnosed in July 2023 with Stage 1 grade 2 IDC HER+ right breast. Surgery was delayed when it was found that I had a low blood platelet issue during pre op bloodwork.

    Finally got a lumpectomy in January for a 1.3cm tumor but had to return 2 weeks later for reexcision because the BS did not get a clean superior margin. Clean on the 2nd surgery. Lymph node negative. Right now dealing with delayed wound healing due to being on steroids to get my platelets up a 2nd time in 2 weeks for surgery and on an antibiotic.

    Thankfully I have a low Onc score of 17. My risk of recurrence is low according to the radiation oncologist- 7.3% if I do nothing further, 2.2 % if just radiation, 5.3 % if no radiation and just keep taking Anastrazole which I've been on since August and tolerating well or 1.6 % if I do radiation and Anastrazole. I'm struggling to decide whether to skip radiation or do the accelerated partial breast radiation which is every other day for 5 days. My MO recommended Zometa infusions to prevent bone loss and reduce risk of BC recurrence but I'm very worried about the side effects of that and any other biophosphonate. I'm 71 and have osteopenia. I dont want osteoporosis but are the benefits worth the risks?

  • moderators
    moderators Posts: 8,055
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    @jerseygirl1215. As we mentioned in your other post, these are indeed a very difficult decisions to make. There are many things you need to weigh - the risks are there, but so is the potential value. We always support getting a second professional opinion if you are on the fence about a treatment or treatments. Sometimes this can help to sway you in one direction or another. Do you have a specialist you see for your osteopenia? Perhaps a conversation with them regarding the biophosphonates?

    Hopefully more chime in here!
    We're here for you!


  • kkcita
    kkcita Member Posts: 20
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    I've been getting Zometa q 3 months for my bone mets for the last 4 years, and this last time was the worst! Total body joint aches, muscle pains, fatigue, GI upset (diarrhea, bloating, gas, burping). It's been 10 days and I feel it still! Usually, it's been easy. I'll have to ask if they did anything different this time, like maybe a shorter infusion time because it seemed quick. I don't usually take ibuprofen and tylenol but I've been taking daily. Getting better. Just thought I would share my experience.

  • threetree
    threetree Member Posts: 1,347
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    Thank you for this information. It's interesting for sure. I've only had 2 infusions so far, spread over 45 min and they were both awful.

  • tougholdcrow
    tougholdcrow Member Posts: 41
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    I had my first Zometa shot yesterday, given over a 25 minute IV. I was pretty tired and a little nauseous when I got home. I drank plenty of water. Took Tylenol last night and slept fine. Today I feel crushing fatigue and bone pain and other aches and pains that I am able to keep under control with Tylenol Extra Strength. I managed to walk the dog. But even chemo didn't knock me out this much. I'm just reporting this so that people know they might be out of commission for at least a couple of days.

  • threetree
    threetree Member Posts: 1,347
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    I had my 3rd infusion Friday a week ago and I am still reeling from it. I got a 45 minute infusion and fluids too, but it didn't help much, unless it would have been even worse without all that. The first day after (last Saturday) wasn't too bad, but ever since then, I have been extremely fatigued, and achy and sore all over. Have just felt awful all week and continue to just wait for it to be over. Ugh! I've yet to have one of these infusions that didn't cause trouble, and I always wonder if I can bring myself to do it again.

  • mandy23
    mandy23 Member Posts: 111
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    Hi @threetree -

    Really sorry to hear that you are still struggling with the zometa. Have you asked your MO if it is possible to reduce the dosage? After my first infusion, they reduced my dosage and slowed it down and that seemed to help some. They also suggested I take Calcium and Claritin (not D) for a few days before and after the treatment to help try and limit bone pain.

    Take Care.

  • threetree
    threetree Member Posts: 1,347
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    Mandy, thanks so much! My onc has suggested Xgeva as a possible alternative, but hasn't mentioned a lower dose. Perhaps I should ask him. All 3 of my infusions so far have been spread out over 45 minutes. I hate to think what might have happened if they hadn't been. This last time, I also got half a bag of fluids too. Can't decide about the Claritin. Some say they think it helps and others say not really sure. Also for the last 2 years Claritin and I just haven't "gone together" very well.I used to be fine with it, but now it just dries me out minutes after taking it and then I feel sick until after it wears off. Don't know what happened other than the addition of the stage 4 drugs. I could try some calcium ahead of time, but that's been giving me the big D lately. I'm just waiting for that "magic" Zometa infusion, after the first one, when so many say they have no more side effects. I'll probably try it again in another 3 mos and then see what happens. Maybe try Xgeva or quit it altogether.