Zometa side effects
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Hello Intolight - Thanks for adding your comments to this discussion. It's a help to the rest of us for sure. I wonder if getting via port is any better than as an IV infusion overall? I'm glad that you don't have too much trouble in the side effect department. Wow, over eight years of Zometa. Right now I have to say, I can't even begin to imagine that. I can't imagine any more than the 4 infusions I've had. This is not a pleasant drug. When your oncologists told you they thought the Zometa contributed to your long run of stable scans, did they say just what they think the Zometa is doing that had helped? I would be real interested in knowing just why they believe it has helped, or better yet why they "know" it has helped. I do get labs in the clinic the morning of my Faslodex shots (the whole schmeer of tests), but for some reason before the Zometa, they only want the creatinine. I'm going to ask them to start including the calcium too on that one, at least.
Good for you for going to the dentist as often as you do. I sympathize big time with your dental phobia. I have a very good/nice dentist now, but when I was a child, I had a terrible experience that I never got over. My mother used to take my brother and me to the nearest guy (she didn't drive, so walked us there), and he was horrible! He told my mother that little kids didn't need anesthetic for procedures and would work on our teeth (mostly baby teeth) with no anesthetic and of course we'd cry and scream, etc. and he would tell us we were just looking for attention or something and my mother seemed to have believed him! It was only years later that she started to think too, that he had been unreasonably cruel. Even though I have the real good dentist today, it's really hard to drag myself there, just for cleaning even.
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Hi threetree and intolight. I had a mean and uncaring dentist as a young kid myself. Maybe it was the times we grew up? I'm 60 so if you are in that range, it must have been the "thing" at the time! To this day I hate going but I do go. I took many years off from the dentist and just took good care of my teeth. Honestly they felt better during those years than they do now going every 3-6 months.
Intolight - Thanks for the positive feedback on Zometa. I know there have been some good comments from a few women here in this group that have been very helpful, I just want to know the proof as best as it can be shown or explained that it really is doing anything. I don't necessarily doubt it, but I also don't believe that it is good just because an oncologist or their PA tells me I need to take it. So far my side effects are minimal and I plan to continue it, I just wish I could get something out of the mouth of my oncologist exactly what it is doing. And then see some proof.
Hope all is going well for you all.
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My second Zometa injection has not been nearly as bad as the first. I feel a bit achey and tired on day 2 but I'm getting around pretty well. This time, I really hydrated, so maybe that made a difference? Or maybe it was the venti latte I had right beforehand, or at least I like to think so.
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Good for you tougholdcrow! Go with it again next time and see if you get the same outcome. Have a great weekend.
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Congratulations Tougholdcrow - that's progress. Please let us know how things continue.
Marcials1 - I saw my onc yesterday and got my fulvestrant shots too. I asked him about proof for Zometa benefits, and he said he will send me some studies. I'll post here after I see what he sends. He said he thinks a lot of the reason it is hard to find info on this is because the studies are old. He said that Zometa is a much older drug and that the research on it was done some years ago and not "out there" in the same way that more recent research on newer drugs is. He said that a lot of what is known about it comes from studies done with multiple myeloma patients, because they've used it to prevent bone metastases in them longer than they have with breast cancer. I might have what he said not quite right, but that was the gist of his comments. I told him I really appreciated him going above and beyond to get me some info, and he said it wasn't above and beyond at all, that anyone in this situation has a right to see what the deal is.
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Threetree - that would be so interesting to hear what your onc has to say! I am looking forward to seeing what you find out. And I just heard from a friend that is taking care of another friend that is being given Zometa for multiple myeloma. So that was interesting also. Oh, and I like what your onc had to say about going above and beyond. Sounds like a great doctor to have on your side.
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Marcials1 - I absolutely love this oncologist that I have now! My previous one, who I merely "tolerated" went on maternity leave about a year ago, and I was assigned to my current onc temporarily while she was gone. I was supposed to switch back to her when she returned, but while she was out, I got in touch with some "higher ups" and had to jump through a couple of hoops to be able to stay with the "substitute onc" instead. I'm just so glad they let me stay with him. He has been absolutely "the best"! My big fear now is that they will take him away for a promotion or to work at the bigger cancer center (I go to a satellite office), or that he has ambitions beyond what he's doing now (he's just in his late 30's). I don't want to have to change again.
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Hi all! I'm new and had my first Zometa infusion on Friday. I was up for 48 hours with chills and a 103 fever. It seems like that is a little different from the norm, but I'm not too concerned. It was hard to walk and get out of bed. My fever lasted two full days. Now I'm five days out and so fatigued and achy. I'm wondering if anyone else had side effects (any side effects) so far out from the infusion.
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@phoenix14 The first shot is the worst. Yes, you can feel like crap for a week . It will get better, and should not be as bad from now on. My last shot (the fourth I've had) was a bit rough on me, but I was fatigued for other reasons, so I think it was a perfect storm.
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Yes, the first shot is indeed the worst. I didn't get the fever, but I sure got all the body aches and bad shaking chills, etc. I told the onc I couldn't remember the last time I had stayed in my pajamas and in bed, for 3 solid days. Even after that, I was really achy and wiped out for a good week. I have done better with successive shots, but they are never good for me, and I always have some sort of reaction; just never as bad as the first time. Some only react to that first one though, and not any of the later ones. Maybe you'll get lucky and be one of them! Hope you feel better soon and that the ongoing infusions won't be bad.
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Hi @phoenix14 I replied to you on another thread! Not sure if you received it. I hope you are feeling better.
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Thank you to all who have shared here!
I had my first Zometa infusion yesterday and last night I believe I developed a fever (I didn't check) , and had chest pain ( not cardiovascular; more like a hurting rib cage), and I have had an increased and different kind of cough today. I have a chronic cough but this seems different.
It's been 24 hours and I expected worse, so fingers crossed.
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Have any of you had a Zometa infusion the same week as radiation to bone? If so, how did you feel? I am starting radiation soon and Zometa may be on the table soon as well. Just wondering if it would be better to have it before I start rads or after. Only 5 rad courses (approx. 2 weeks every few days).
Advice?
Pam 💗
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Hi @livinglifenow I did not have a Zometa infusion immediately after my bone radiation but I did start my first Verzenio (150 mg) the day after my last round of radiation. It was not good. They told me after the fact (I was really sick from it) that they should have waited at least a week before starting the Verzenio. So not sure where you are in this process but I personally would ask for at least a week in between each, whether you have radiation first or after Zometa. Also, have you read about the Zometa side effects and do you have a plan to deal with them? Many women on this thread have good info on what has worked for them. Wishing you the very best.
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@marcials1 Thank you so much for the information! My MO wasn't too concerned when my scans were clear, but may wish to start it after the radiation. I don't think that will be a problem for her. I just know that I am more tired now than I used to be… and that is before radiation! Can't imagine how the Zometa might affect me. Grateful for your feedback.
Have a great week!
Hugs, Pam 💗
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@shrinkrap59 How are you doing today? Feeling better or worse? What is your cough doing? I have a chronic cough as well. So, I wonder how I will feel with that after a Zometa shot. Hope your side effects don’t last too long.
Hugs, Pam 💗
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@livinglifenow , thank you for asking! After the first 24 hours in addition to cough I also had headache and lightheaded feeling like I have when dehydrated, but I am 95 percent better today, which for me means still coughing but not much more than baseline. . I have had reactive airways for about 20 years, maybe due to sarcoidosis which is not active. It used to come and go, but it mostly just comes inthe last year. I am on a new inhaler at double the strength of the last 10 years and never miss a dose.
The chest pain following the infusion was completely new, and the cough seemed like an inflammatory response.
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@shrinkrap59 Glad you are feeling so much better. I just had my HP infusion today. I seem to have a little bit of a sore throat/swollen glands afterwards. Very mild, but still a slight reaction. My MO said we would wait on the Zometa infusion and make a decision on that after I have my radiation treatment, which should be coming up in the next week or so. Constantly a balancing act!
Continue to feel better!
Hugs, Pam 💗
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That sounds good to me! I ended up having Zometa almost a year after rads. I had dental work about two months ago.
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@threetree After reading through this discussion, I noticed that you said you were having a DEXA scan in January. I’m curious, what did it show? Was there improvement?
Hope all is going well for you!
Hugs, Pam 💗
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Livinglife - Hi, I didn't have a January Dexa afterall, so can't comment. Your inquiry made me think back and now I think the Dexa might be due later in the spring or early summer. My first one was in January of 2021 and Medicare covers it every two years, so in my mind I was thinking January was when it was due next. More careful thought though, says that my second Dexa was not "on schedule", i.e. in January of 2023, but later that year, so my next one is more likely to be later this year. The onc hasn't mentioned it and I didn't bring it up, figuring he'd tell me to schedule it when it's time. So sorry for the confusion! If and when I get my Dexa later this year, I'll let you know what happened. I see the onc in April and I will check with him about the current time frame. I got diagnosed as stage 4 in January of 2023; when the Dexa would have been due again, but I think it got postponed due to the hoopla around stage 4 scans, etc. Again, I'm sorry for the mess I caused.
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@threetree No problem. I just thought I had missed something. Always curious to see how others are doing in a similar situation. And, of course, the hoopla of a Stage IV diagnosis is certainly crazy. I hadn't had a DEXA scan since 2014, after my initial Stage 1 diagnosis. After all that time, having the scan again in 2024, my mild osteopenia had only increased slightly. I attribute that increase more to the fact that I had left knee replacement followed by a large extruded herniated disc a few years ago. So 2021-2022 I was unable to make much use of my left leg, the one that they do the scan of the hip on. However, now that I'm on Anastrozole, that is my main concern regarding bone loss. My MO does not feel it is totally necessary to have Zometa for only one bone met (that I will be having radiation on next week). Lots of wait and see that goes on in this journey.
Like so many other women on this discussion board have stated, it's difficult to get a definitive answer as to how effective Zometa is for protecting bones from cancer. I actually have two MOs. One (Dr G) at my treatment center that I see every 3 weeks, the other (Dr D) at a teaching hospital (a 6 hour drive each way) that I video conference after each PET/CT. It is truly interesting how different their advice and recommendations are. At first Dr G was more aggressive in her treatment recommendations and Dr D less so, now the opposite is true. It's a tough balancing act for me. I really like my local MO and RO (who will be doing my rads), but I need to keep Dr D in the loop in case I need more specialized care at a major cancer center.
An example of how little consensus there is regarding certain protocols: I asked my RO if I needed to stop my anastrozole while on rads. He suggested my MO make that decision. When I spoke with her a few days later, she said my RO should make that decision. Of course, I told her that he said she was to make the decision. She waffled a bit then said I should just stop all medications/supplements for the 10 days of my 5 courses of radiation.
Fast forward to later that evening: I do some deep research online. It turns out, unless one is having lots of issues with the anastrozole, it is probably best to stay on it. It shouldn't interfere at all. I also did research on Vit D3. It stated that it was a good idea to stay on that during rads because it can actually enhance the efficacy of the treatment. So, I plan to stay on both of those (will stop other supplements, etc.) for those 10 days. And, interestingly, the rad tech gal who did my simulation stated that the rads would continue to work for six weeks following treatment. Begs the question: In this case, shouldn't we stop for another six weeks? Anyway, like others have said, we are often left to our own research to determine what is best for each of us, especially when our doctors really don't have an answer pointing one way or the other.
Threetree, hope your journey is going as smoothly as possible. Wishing everyone a wonderful weekend!
Hugs, Pam 💗
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Livinglife - Thanks. I will let you know what I find out whenever my Dexa issue gets sorted out. I see the onc next week, so maybe I'll ask him if and when I'm to have another scan.
I can sure sympathize with what you said about all the different info we get and having to do our own research, etc. I also understand how it can be difficult when the doctors defer to each other, as in your case re the decision about Anastrozole and radiation. Oftentimes, what I read and what the doctors say doesn't jive, and they don't always appreciate that I read things online. I've learned to get as many opinions as I can from the doctors and what I read, and then just make the best decision for myself based on all that I've heard and read. I don't know what else you can do. I don't have two oncs like you do, but sometimes when I get really worried about something I go to urgent care and the doctors there will give me their take, knowing that they aren't oncologists, and then I often get the onc's opinion too, depending on the situation (sometimes I can settle something out as not being a big deal just at urgent care or the PCP's). If I get differing opinions I read more and then just try to put it all together in a way that works for me. I think sometimes it's a copout when a dr says to just not take any supplements or anything else during a procedure like radiation. I think it is over all probably safe, but it also seems like a brush off in some ways - the "easy way out" for them. Not being a doctor myself though, I really just don't know. If the radiation alone would help that one met you have, that would be good, and you could forego the Zometa for now. Might be worth a wait and see? Anyway, good luck with all of that and again, I'll let you know if I hear anything about a Dexa for me.
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@threetree It appears we are in agreement on advice from the medical profession. But, since all of the doctors' patients respond differently to different meds, I can see the blanket answer of "stop everything." So, I am going to proceed like you: gather opinions and data and make the best choice for my particular situation.
BTW: Just got a call this morning that my treatment is approved by insurance and I start next week with 5 rounds of radiation every 2-3 days to my sternum. Hope I don't encounter too much fatigue. Otherwise, I am looking forward to getting this done. I will keep you posted and you do this same.
Have a fabulous Friday!
Hugs, Pam 💗
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Hi Ladies. I just saw my MO and we decided to move my Zometa to six months. I have been getting them every three months for almost nine years now! After I asked (thanks to you all) she said "yes, it is usually given for 3 to 5 years." So we moved them. Since I am doing relatively well and have had no breaks, etc., we don't want to stop it. She said it is up to me, but my bone mets have been quiet for several years so we aren't stopping it. I started with mega bone mets and liver mets. Now I only have liver mets and a couple on my spine which were not there originally.
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@intolight Great to hear that your Zometa has been moved to every 6 months. That may prove just as effective without as much medication load. So glad you are doing so well on your treatments.
Hugs, Pam 💗
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Congratulations, Intolight - That will be a big help with how you feel, I'm sure. You've done really well over all these years, and you serve as quite an inspiration to me, and I'm sure for others too.
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i had the first Zometa infusion yesterday morning. Had strange side effect during infusion . My lips starting tingling and I had a bitter taste in my mouth. This went away after about an hour or two. By today, the bone areas where I’ve had pain and scans indicate metastases, started throbbing more and now tonight many other bones in my body are aching. I hope this doesn’t persist. Based on what I’ve read on BC.org, it should dissipate over the next day or so. Is that true?
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@newfmamainoregon Yes, I've had that strange taste after Zometa. Should go away very soon. My whole body sometimes aches after Zometa, and my recovery is uneven. Sometimes it takes just a couple of days, sometimes almost a week to feel totally recovered. Your mileage may vary!
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Thank you @tougholdcrow. Those side effects went away; however, I have hurt all over all week. It seems like every bone is aching and stiff. The bones that have the metastases hurt much worse. I’m hoping by this weekend things improve. I’ve kept moving and doing all my horse chores, etc. Thank you.
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