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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: 8,286
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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: 1,471
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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: 101
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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: 1,471
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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: 113
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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: 1,471
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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.

  • threetree
    threetree Member Posts: 1,471
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    For those of you who take this drug, how long after your infusion do you still notice side effects like deep aches and pains? Also, have any of you noticed any long term side effects, not onj, but more like fatigue, and muscle, joint, and bone pain, and just feeling overall like crap?

  • tougholdcrow
    tougholdcrow Member Posts: 101
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    @threetree I've had only one infusion of Zometa, and I felt wiped out for a few days, but then recovered well. Nothing long term that I've noticed.

  • threetree
    threetree Member Posts: 1,471
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    ToughOldCrow - Thanks. I know the side effect focus for Zometa is almost always on those first few days - I get BAD side effects during that time, but am beginning to wonder if some side effects continue, albeit at a lower level. Things like the body aches, low mood, fatigue, etc. I could be wrong, and it's the Faslodex at work, but I thought I'd put this issue/possibility out there, because I never hear it discussed beyond what people experience in the "acute phase". I'm just curious what people's experiences and thoughts are in this regard.

  • lesamorgan
    lesamorgan Member Posts: 2
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    @threetree I saw your post from May 24. I'm new to the forum and joined not for myself but for my mom. She had a zometa infusion May 25 and started taking letrozol. She had
    really bad whole-body pain for a few days then it eased up except in one
    leg from her hip down to her ankle. That pain has not stopped since
    day 1. I'm looking for any ideas of what/why this is happening and what
    she can do to make the pain go away.

  • lesamorgan
    lesamorgan Member Posts: 2
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    I'm new to this forum but not for myself, for my mom. She is having some problems so I'm hoping someone here can help. She had her first round of zometa and started letrozol May 25. She had really really bad side effects that night which lasted about 4 days then had a little relief but is still experiencing a lot pain in one leg from her hip down to her ankle. This leg/ankle pain has never stopped since day 1 of the infusion. She's tried tylenol, advil, aleve, gabapentin, prednisone, and meloxicam. Nothing is helping. She stopped the letrozol and that didn't help either. What could have happened and what can she do to get some relief from the leftover pain?

  • moderators
    moderators Posts: 8,286
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    Hi @lesamorgan and welcome to Breastcancer.org! We're so sorry to hear of your mom's diagnosis, but we're really glad you've found us! You're sure to find a great network of support here — we're all here for you and your mom!

    Have your mom ask about getting Claritin for the bone pain with Zometa infusions — we have heard this is something that can help!

    Read more about Zometa here: https://www.breastcancer.org/drugs/zometa

    We hope this helps!

    —The Mods

  • tamtam117
    tamtam117 Member Posts: 1
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    @threetree I am new to this forum and joined because I was wondering about longer-term side effects too. I had my first Zometa infusion six days ago and was down and out the whole next day with body aches, chills, and fatigue. The next day was better with only some chills during the night. By the following day, no aches or chills but I was exhausted and have continued to feel fatigued. I'm frustrated because my Oncology dr didn't mention any side effects beyond the first couple of days and I'm scared that I'm going to be tired for an unknown amount of time.

  • moderators
    moderators Posts: 8,286
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    Welcome to the BCO community, @tamtam117! Thank you for sharing your experience with Zometa. It sounds like you've had a tough time with your first infusion, and we're sorry for that. You're not alone in this! Many in our community have experienced similar side effects and we're sure they'll share their insights and advice. Here is an article from our main site that may be helpful: Managing cancer fatigue.

    Good luck with the next infusion. Please, come back to let us know how you're doing!

    The Mods

  • marcials1
    marcials1 Member Posts: 48
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    @threetree Hi - I was just reading through these threads because I have my first Zometa infusion Tuesday the 16th. I'm sort of dreading it but trying not to dwell on it. I plan to drink lots of water, take Tylenol and have Claritin on hand also. I did ask that they stretch out the infusion to 30 min from 15 min. I do not typically react well to medication and if there are side effects I get them! I know I've chatted with you on the Verzenio topic. Can you tell me all the meds you are on? I'm curious if I am on the same and if so will have the same prolonged side effects you get. When was your last infusion and do you feel ok at this time?

    I have very little bone pain or any body aches at the moment so wondering why I would put myself thru something that is going to cause awful pain? My scans were "unremarkable" 2 weeks ago so why would I put myself thru this? Also, I have been feeling crappy for about 10 days (headache, lightheaded, nauseas) so I am even more worried about adding to that feeling.

    Also does anyone know that if blood counts are low will the side effects be even worse? Do we all have low red & white counts?

    Thanks for any input from anyone!

  • tougholdcrow
    tougholdcrow Member Posts: 101
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    marcials1. I've had one infusion of Zometa and it knocked me on my butt for a few days. I would not call it "awful pain," more like flu-ish. But I'm very grateful to have a drug that's building my poor old bones up to help fight against the invader, even if it's a heavy weapon to hoist. As I always think, it's better than the alternative! I have heard that the first infusion is the worst.

  • AJ
    AJ Member Posts: 230
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    @marcials1 I’ve had one Zometa infusion and felt fine after. Maybe tired but that could be the Xeloda

  • marcials1
    marcials1 Member Posts: 48
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    @tougholdcrow and @AJ Thank you both! It's a relief to hear some positives so I can get my mind off of the negative!

  • threetree
    threetree Member Posts: 1,471
    edited July 12
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    Hi Marcials1 - Wishing you lots of luck next Tuesday with your first Zometa infusion! I'm only able to respond today, as I've had a week with lots of fatigue, and just not up to doing much that requires any energy at all. Not feeling "bad", just totally tired. The meds I take are fulvestrant, Verzenio, and Zometa. All of them cause unpleasant side effects for me, and like you say you are, I am very drug sensitive, and if there are side effects, I will get them. I imagine your last week or so of feeling lousy has been due to side effects of the drugs you are on already.

    My first Zometa infusion was no fun whatsoever. I got it in the morning but by late afternoon/early evening I was starting to feel a bit off. By night and middle of the night, I developed bone shaking chills and terrible body aches (no fever however). It all lasted for a good three days. I couldn't remember the last time I had stayed in my pajamas all day, much less for three days in a row, but that's what I did. After the bad side effects went away, I continued to feel very tired and a little bit achy for days, but I could get out of my pajamas and basically function. My infusion was drawn out for 45 minutes at my request. I kept wondering what it would have been like if I'd only had the routine 15 minutes. Please keep in mind, that this is not everybody's experience at all, and many say that while the first one is bad, they have no trouble at all with the successive infusions.

    In my case the successive infusions have not been as bad as the first, but I do have a reaction. My last one was my third and that time I had not only the 45 minute draw out, but also IV fluids too. I had no fever and only one very short and transient bout of mild chills, but I continue to have body aches and a lot of fatigue for several days after each infusion. I'm getting my next one (the fourth one) on the 25th, and I'm not looking forward to it. Every time I get one of the infusions, I say "never again", but then I do it. I have no idea if it's helping at all in any way. They just say it helps, but I'm not aware of anything noticeable.

    Maybe you will really luck out and be like AJ and only experience a bit of tiredness after this first infusion, and then nothing more with the subsequent ones. That does seem to happen for a lot of people, so please don't just assume that you will have the kind of experience(s) that I and many others have had. It seems to be very individual. I really can't find any information about side effects beyond those acute first 3 days; the ones that everyone talks about. However, I am not sure that the Zometa doesn't go on and continue to add to general tiredness and body aches, along with the other drugs like fulvestrant and Verzenio. The trouble with this mess is that all these drugs cause similar and overlapping side effects and the cancer too, can cause some of these things, so there's just no way to know what is what and it drives me crazy.

    I don't know how the low blood counts affect the Zometa, if at all. Yes, I think we do all have low red and white if we are on these drugs.

    Again, I've got my fingers crossed that all will go very well for you and you will be one who deals with this in a very positive way with few to no side effects whatsoever.🤞 Let us all know how things go next week.

  • marcials1
    marcials1 Member Posts: 48
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    @threetree I hope your fatigue has lifted some by now. I go through phases of just being plain old tired also. My headache and feeling blah has continued, and will be 2 weeks tomorrow. I have some times during the day where I feel better then it hits again. Oh well. Another phase I guess.

    It sounds like we are on the same meds basically. I take letrozole which I believe is the same as fulvestrant. ? I plan to be down for the count for at least 3 days. I'll get lots done between now and Tuesday so I feel like I can just lay in bed and try to recover. My husband cooks and cleans and helps so I really will be fine. I have already decided that depending on how bad my side effects are and how long they last will determine if I do anymore rounds of Zometa. When you say you have no idea if it is helping - do you ask and they have no good answers for you?

    These drugs do cause similar and overlapping side effects and then there are the "counter" drugs to treat the side effects which in turn have their own side effects. It is what we have to deal with I guess. And then there are doctors who ask what meds you are on, over and over and over, and they still prescribe things that shouldn't be taken while on the meds we are on. I find that one of the most frustrating things about all of this. That and when they just plain do not listen to a thing I say.

    Good luck with your next Zometa on the 25th. I'll let you know how mine goes as soon as I'm able to be up and around and able to respond. Thanks for all of your input. I'll try to be positive and hope that I'm one of the lucky ones like AJ!