Hello,
My new oncologist prefers Zometa to Xgeva so I had my first infusion of this on Monday. Yesterday, Wednesday, was horrible, aches, bone pain, nausea, chills....really just awful all day. I can barely move this morning. Is this from the Zometa? Has anyone had these side effects?
The new team thinks I am a pain/princess already so I dont want to message them right away. To say the transition to a new team after four years has been rough is an understatement.
Thanks in advance.
Allison
Hi Iwasbirntodothis: So sorry for your suffering. I have Xgeva shots monthly but have found taking a Claritin helps mitigate the symptoms.
I hope you get relief.
🙏❤️🙏
Thank you - I do take Claritin - maybe not enough? It was such a shock.
I’m so sorry you’re feeling like this. Claritin helps if you take it a few days leading up to injection and also day of. Bone pain is from the injection. It’s working that’s what the feelings mean.
Ate you still taking Trodelvy?
Thanks - yes still Trodelvy. All Tumor markers slightly up but as my husband says - its a new lab and that could be a reason. Also, my new PET scan showed "partial response to treatment". I think my other doc would have us moving on to something else but I'm six treatments in so I'm glad to see how it goes.
Just a note: my onco and also a second opinion breast onco both say that they want patients to stay on a drug as long as possible. My markers never seem to go down but scans have been stable — some ups and downs, so no change of drugs.
Claritin ! Claritin ! Same thing happened to me and I was told to go out , get Claritin and take a day before infusions and 4 days after
Thank you! I will do this. I don't wish this on anyone - so painful. And it was my hubby's 60th birthday yesterday so it wasn't cool for me to whine all day. I feel better today but I can't believe how much my wrists hurt.
My pleasure ! The first time I had the zometa infusion, I was miserable with flu like symptoms and bone aches for a whole day before someone said take Claritin ! I immediately popped one and felt better !!
Hi Allison. So sorry that you had a bad experience with your first infusion of Zometa. I have been receiving Zometa infusions every 3 months since May 2018. With my first infusion I felt the same way you did for the day after. I remember thinking that I had been hit with a Mac truck. My oncologist had warned me that up to 75% of people have this reaction with their first infusion....so I was prepared. She also told me that the majority of people do not have any issues with subsequent infusions which has been the case for me.
Anyway a few things I would suggest for your next infusions. Make sure you are well hydrated before and after your infusion as Zometa is primarily metabolized in the kidneys. Typically they will infuse over 15 minutes but I always have my infusion over 30 minutes and get the nurse to give me a good flush at the end of the actual drug.
I hope your next infusion will be much better. How often will you be getting the infusions? It shouldn't be any more frequent than every 3 months based on the fact that you have previously been on Xgeva. Good luck and I am sorry you felt so miserable on your hubby's special day. Take care.
I agree. I have the flush prior and after and it helps a lot. Then I soak in the tub, but I have not had pain like you are experiencing. It is important that the whole process is around 30-45 minutes. Hugs
This is good info for me thank you so much
Hi, sorry you have had a rough time. I had similar problems. My Dr. lowered the dosage and most of the problems went away. I did use heat pad and ice packs when I had back pain. Hope this helps. Praying that you get this figured out.
Thank you
I had severe bone pain for up to a week after Zometa infusions.....I found slow infusion, hydration and Motrin helped reduce the side effects. I am sorry, side effects make our journey so much harder.I wish you a better experience the next time. Gentle hugs, Patti
thank you
confused by xgeva v Xometa? I have been on xgeva for 2 years plus letrozole… bone pain and mobility getting worse although cancer is in remission. Also, how does Claratin help as it is an older antihistamine? Appreciate all the advice..🙏🙏❤️
Think it depends on your region geographical....they are similar treatments one given via an IV infusion, the other as an injection.I've never been given the option of having Xgeva here in Cyprus....but since I have a lot of bone mets I've had Zometa since the start of my diagnosis.
Joint pain can be from the Letrozole. I also get that but it seems to shift from one area to another and never stays in one place for more than a few months.
I'm taking Ibrance, Letrozole, Zoladex monthly implant and Zometa. I find I have more joint pain in the winter season...rainy weather brings on rheumatism like issues.
Epsom salt baths help and so does exercise...although I know that sounds counter intuitive as we don't feel like moving when in pain!
Hope your pain eases.
Wishing you all the best.
Thank you so much…Cyprus! What a beautiful place to live. I am from Ireland originally but live in Memphis, TN now. So lovely to meet you.💕
Thanks...yup its quite pretty here.Re the Claratin...I ve never taken it or been prescribed it but it seems to come up a lot on this site and I think it's popular in the states.My oncologist is against me taking any extra meds as I've had issues with liver function previously and she wants to keep any extra load off it.
Also an anti inflammatory diet might help with your bone and joint pain...
Zoe
xx
that happened to me plus I got all puffy, so my onc and I think it was an allergic reaction. I only had it the one time. I would never do it again. I’m on ibrance and anastrozole and I get a shot every other month for bone strengthening (MBC to my bones)
Thank you - my right hand and wrist is swollen and I can barely move it. I have my Trodelvy infusion on Monday so I will speak to the nurse about everyone's input. They are still new to me and I guess I'm too direct because they are slightly defensive - we'll get there with this new team but its frustrating.
You can never be too direct, it’s your only body. You have to be a constant advocate for yourself! 💜
Hi
I agree with all the tips Awesome forever suggested. I've been taking Zometa infusions for almost 3 yrs. It used to be monthly but after 2 yrs I now have them once every 3 months.
The first time I had mild flu symptoms the next day. That only happened once.
On the first dose I was given two paracetamol just before the infusion was started and that time it was administered slower over 30 mins.
After that it has always been 15 min without any paracetamol....and I've had no side effects since. At the start of my diagnosis I had more discomfort in general...especially rib pain which made it hard to find a comfortable way to sleep.
I have extensive bone mets and I definitely feel that having the treatments has strengthened my met riddled skeleton!!
I've managed to stay active, doing exercise classes 2x a week, gardening, walking and doing all the house choirs (the last not necessarily being a bonus🤣). I have minimal issues pain wise...mostly joint aches that are caused by the Letrozole I take.
Staying hydrated before and after is going to help to flush your system! I drink about 2 litres of plain water a day aswell as additional green teas and other herbal teas too.
Try and stick it out...I think you'll find it will get easier with time.
Thank you - this did really dehydrate me and I drink tons of water (I live in Arizona so we just have to). I only have to do this every 12 weeks so I will be better prepared. If it works better than Xgeva, I'm happy to suffer a bit but if it doesn't I'll ask to go back to Xgeva.
I’m so sorry for your pain and discomfort.
I’ve been on zometa for 4 years once every 3/4 months. I never have issues and I think it’s because I was told by my oncology nurse to have the nurse hydrate me with an infusion (saline) for 15 minutes before the zometa and 15 after. And, most importantly, to tell the nurse I want the zometa to be administered over 1/2 hour VS 15 minutes. Hope this helps you.
My oncology team administers my Zometa infusions the way that Red1246 has described and I've never had any issues. The antihistamine helps with any allergic reaction. The IV fluids for 15 minutes before and 15 minutes after the infusion ensures proper hydration. It's also important to have the Zometa administered over 30 minutes, instead of 15. Both my oncologist and my endocrinologist agree on this one. You will probably need to advocate for yourself with the nurses. At my cancer center, I have to make sure the oncologist has written an order for the 15 minutes of IV fluids before AND after the Zometa, or the nurses won't give it to you. Discussions on this site have been invaluable to me in advocating for this method of administration. I've been receiving Zometa infusions over 30 minutes with IV fluids for 15 minutes before and afterwards every 3 months since October, 2022 . I've never had any of the flu-like side effects that people complain about on this forum. I actually feel better and stronger the next day. Zometa treats osteoporosis as well as treating cancer in the bone. If you've developed osteoporosis as a side effect of your cancer treatment, like I did, that could be a reason for the switch from Xgeva. Xgeva is also a much more expensive treatment and insurance doesn't always cover it.
Thank you so much this is all good info
Hello!
I am on zometa and I get it once every three months. I don’t get any of the side effects. Are they taking a full 30 minutes to infuse it? They told me no side effects if done in 30 minutes. I’m sorry they told you that you were a pain princess, how very rude. A friend told me and it is true, drs and nurses work for us, we through our insurance companies pay their salaries! No need for rudeness from them! Very unprofessional!! And your lucky if they return your calls I have one dr who either never does or his staff waits 6 days and by that time it’s useless. Hugs!
Thank you - a new team and we are all adjusting to each other and it hasn't been easy. We (my hubby comes to all appointments) keep detailed notes and this freaks them out initially - to see him writing everything down and checking off pre-meds. They'll figure out that we are just advocates for ourselves and stop being to defensive eventually. You'd think they'd have thicker skins being that we are in Scottsdale and surrounded by princesses.
Oh I compared it to having covid and the flu and norovirus all at once. My oncologist said take a Clairton. You were having the worst of reactions and they should have told you. It's seems to be a common reaction. So from now on I take a Clairton before getting the infusion and barely notice now. They could have saved you so much misery. It should just be stated to automatically take one before enduring such an awful reaction. Isn't what we're going through enough. Man the insensitivity of these Oncology groups is profound they should know by now the misery we go through and just automatically tell all getting zomeda of this reaction. Some don't have it so they don't think to warn us.. unbelievable. I was soo sick after . Try it . It'll get better I promise. Our bodies are getting used to the barbaric treatment. That's awful. They should be ashamed. And give em a good scolding from me 🤣
Thank you! also thanks for making me smile.
I am so very sorry you had these awful side effects and also that you are having difficulty with your new care team. I have not been on this or Xgeva but my sister has taken Prolia which is similar to Xgeva and she had these same type of symptoms after her first dose. I think all of the bone meds can cause these when you first go on them. . She has been on this for a very long time now and no longer has such severe side effects, but her bone density has improved a lot. You should get compassion and help from your new team not criticism. Sending you hugs and prayers and hope things get better for you.
Thank you. I've been in the construction industry my entire career so I'm very direct and I don't have a lot of patience for drama. I don't feel that its my job to worry about hurting the feelings of the new team but I also want to build a rapport - its a balance.
You are welcome. I don't like drama either and I agree that we should not have to worry about hurting the feelings of our doctors. We need to have a good rapport, but they need to realize that treatments can cause us lots of discomfort and change the quality of our life and that we are just trying to advocate for ourselves for the best possible treatments with the least amount of side effects. Our pain is real! When I first met my new doctor, I did not really care for her. She seemed very aloof compared to my previous doctor and I she did not like that I asked a lot of questions or tried to discuss research I had read. I could tell she felt I should just follow her protocol and not try to fight it. I refused to take Xgeva or Zometa and I know she was not happy about that. She said that none of her patients had ever experienced any of the side effects I had read about. I found that hard to believe as many of the women on this site have had those side effects. Anyway, things have gotten better over the three years I have been with her and our visits are much more pleasant. Best of luck to you. This is a tough journey we are on.
Thank you
I’ve been taking injections of xegeva for 7 years every 3 months onc now switching me to prolix every 6 months. I’m worried after reading side effects which sound a lot worse. Has anyone made this switch I was not really given a reason for making the switch. When I was diagnosed with MBC I had one spot at t7 where I received radiation
Next question is there anyone who was diagnosed with oligometastic er/pr+ her2 - This was my original diagnosis had 26 weeks chemo , lumpectomy and 6 weeks radiation. Currently still taking ibrance 100 and letrozole 3 weeks on 1 week off
Thanks, Mimi
I do not know the answer to this but perhaps someone else wil respond.
Mimi if you mean your doctor is switching you to Prolia from Xgeva you have nothing to worry about as they are basically the same main drug Denosumab. It is just sold under the both brand names Prolia and Xgeva depending on where you live. If you mean something else...I couldn't think of any other bone strengtheners that fit what you typed( prolix?) otherwise. Take care.
Thanks
I'm afraid I have no experience but I wish you well. X
Hi Allison. I was on Xgeva and faslodex shots for six years. I never had any pain at all. I attribute that to my take my glucosamine chondroitin with msm. I take 2 pills a day. I have been taking this for years. I had (non cancer) surgery on my back in 2001. I had so much pain after I he surgery I could barely walk My doctor then recommended these pills and I have been pain free ever since I have had 2 more surgeries (cancer related) to my spine I also have it in my hip and sacrum and I am pain free a little note, you can’t be allergic to shellfish and it takes about 8 weeks to work you can purchase it over the counter Just make sure it contains msm that is for inflammation I hope it works for you as well as it does for me! It’s also oncology approved
Lori 🙏🏻
Thank you for the info. My husband used to take this after knee injury - we also gave a form of it to our labradors when we had them. I will get some as we no longer have it around for some reason.
Praying this works for you. I get mine through Amazon. It’s called Vitabreeze triple strength. Don’t forget it takes about 8 weeks to work.
Best
Lori
Hopefully your new team can help mitigate the side effects. However it is very concerning to hear about their judgmental behavior. We need care teams who stand beside us in loving support. It is as important as the medicine they dispense. I hope this changes.
We're getting used to each other. I guess most people are just more passive. We've been at this for over 4 years so we are more assertive.
I dont know how anyone can be passive when suffering. I'm a loud mouth. I spoke up immediately.. like what is this fresh new hell that np one wanted me about. Flu like symptoms???More like the plague
You are cracking me up!
God Bless. That's cause this is a true nightmare. I need to laugh or I cry
I had the exact same symptoms after my first zometa treatment. I took extra strength Tylenol and gravol to help get through it. I did tell them at my next zometa appointment and they said to come reall hydrated and take a couple of extra strength Tylenol and ask them it infuse it a little slower. I have never had a reaction again. Hope this will help you. Theresa
Thank you so much. It's 12 weeks until next infusion so I will be ready thanks to all of you lovely ladies!
My question is why does your onc prefer Zometa? From my limited research, my understanding is that Xgeva is shown to be better at preventing bone issues in people with breast cancer. I have been on Xgeva, but my brother was on Zometa and he always felt flu like after his injections. My little sister was on Xgeva, then they had some insurance blip and she got Zometa - felt terrible and the time next was back to Xgeva. I would have a conversation about why they want you on Zometa. I would do some research and come prepared in case they just say “it’s better”. Ask why? Where is their data? You have every right to take part in your treatment decisions.
Agree - we had to change teams with very short notice due to insurance coverage and in order to stay on treatment schedule we just kind of went with the flow. This new doc changed a few things and I had read on this site that Xgeva and Zometa were basically the same so I really didn't think about it. He agreed to drop a pre-med that I hated and swapped another one out with one that tastes horrible as they infuse it ..now that we've been through a treatment cycle and are getting used to each other perhaps we can have more targeted and productive discussions. I can also always call or message the old team for support but I didn't want to use that resource yet and they say they speak to my old doc weekly anyway for various reasons since he is so well respected. Change is not easy when we are all dealing with this stuff.
I agree. Also, I totally get caring about how your team views you - I believe it affects your communication with them. I hope you get treatment sorted out and get back to Xgeva. We can have enough side effects without added them where they are not necessary. Sorry insurance gets to dictate your care team. I have been with mine for 8 years and would not want to start over. Prayers and good thoughts coming your way.
thank you
I've been on Zometa since January 2018 with excellent results. I had monthly infusions for about 2 years and now I have quarterly infusions. I take a daily Claritin and it helps tremendously with bone pain. I think our bodies begin to get used to the pain, so I think over time, you may not experience the difficulties you are having now. My nurses insist that I drink plenty of water to help "flush" the Zometa through my system. I pray that you will continue this treatment phase and be able to manage it side effects. It does get much better!!!
Thank you
Oh!! Iwasborntodothis!! Please do not allow your medical team to ever make you feel like you can't reach out to them!! That is a big no-no in oncology!! Your body is not the same as anyone else's body and each of these medications affects everyone differently!! I first took Zometa at my insurance company's insistence and I had the same reaction you are describing. My doctor immediately got on the phone and made the insurance cover Xgeva. For me, Xgeva has had little, or non noticeable side effects and I've been on it now going on 5 years. So, I know it's easy to feel like we are coming across as pain divas, but we are not!! And our doctors, nurses and hospital teams must honor how we are doing and our individual needs. We are warriors, not princesses......don't let anyone ever let you feel that way and if they insist, it may be time to find another medical team.....I have been there too and I know it can be scary, but their job is to help us suffer less, whether physically, emotionally or mentally!! Take care, and I hope you feel better soon!!
Thank you - well we had been contemplating a move to Tucson which is 2 hours away and we made a "what the heck" offer on a house that was accepted today so...I will have time to research and interview a new group in Tucson and not have it be a hurry like it was this time because of insurance coverage changes. We will be able to move down and not rush to sell this house (which is almost 100 yrs old and not practical if/when I were to become disabled).
I never complain about pain - typically pain makes me nauseas first before my lightbulb comes on in my head to say "pain" but this really rocked me. I feel slightly better today but..wow. I will give them an earful at infusion on Monday for sure.
Good for you!!! They need to re-access their roles and what they are doing, if only for future patients and existing ones staying. I wish you the very very best in your new adventures! By the way, I’m going through exactly what you described. I get nauseous and then it realize it’s from pain. Xeloda buildup in my system is really causing me some grief right now, so I so get it!
I agree with many of the previous comments, I'm on Letrozole/Ibrance and Zometa every 3 months, just going into my 5th year. Zometa was nasty for the first couple of infusions but a slower drip rate (minimum 20 minutes - ideally 30 minutes) and Claritin definitely helps. I still have bad aches and pains the next day so I never plan much for the day after. If you are getting a reaction it means something is happening in your body so it's not a bad thing, some of these drugs cause inflammation but that can be healing as opposed to disease so don't jump to the conclusion it's bad. If you can limit the side effects I hope it will be OK for you.
good luck with the next one xx
Thank you
Hello I have only had one Zometa infusion. Did know I was to take them every 6months. But I didn't have any problems no more than running a temp. That night an extra tired. I'm to take my second one next month. I pray it doesn't make me feel bad. Hope you feel better soon 💕.
Thank you
yes. I was so sick from my first infusion…after that there were no side effects with subsequent infusions which I had quarterly for 7 years. But yes that first infusion knocked me down quite horribly!
good to know it will get better thank you
Oh Allison that sounds awful. We never know how meds will affect us. It is terrible. Hope you feel better. Why zometa instead of Xgeva?
Hey there...new doc due to insurance coverage change - this is his preference so I agreed. Wasn't really given any warning about the side effects - had no problem with Xgeva.
Thank you - hope you are doing well.
Hi Allison,
I’ve been on Xgeva for 6 years. No problems so far or side effects. Your pain can absolutely be from the new medication as these are bone marrow effective drugs. Do not fear what your medical team thinks. You’re going through a lot. Call them as this could be serious, especially if you can’t move well. Many prayers for you!
Thanks - I will see the infusion team on Monday. I will give them my feedback for sure. I can't even hold a coffee cup with my right hand because of the pain but its better than it was on Wednesday when I couldn't really get out of bed.
I had the bone pain you are describing from letrozole, also from anastrozole, but not as badly.
Zometa made me sick for a month. I was a slug. Claritin didn't help, just made me feel awful in a different way.
My onc switched me to Xgeva right away. She didn't say anything about the first one being the worst. When I looked it up, it seemed that Xgeva was better -- actually combating and healing bone mets, not just strengthening bones. My bone mets vanished. Unfortunately, I also got ONJ. Now I can't take any of those bone density meds.
Yes I had some dental challenges while on Xgeva - mostly that if a tooth cracks or if you need a filling no one wants to touch you due to this med. I tell my husband that these guys don't go into dentistry because they are risk takers 
I'll discuss this Zometa reaction with them and maybe give it one more round before asking to switch back. I'm on 12 weeks now where I was every month on Xgeva. My new oncologist is more of a generalist not a breast cancer specialist like my former doc so maybe he likes one over the other because of this more generalized view.
I do appreciate all of this feedback and as always I hope this hels others down the line.
I didn't find that -- my regular dentist just pulled a tooth. Whoop, it was gone. No problem at all with that.
Then I tried to go to oncology specialist dentists at the same hospital. Couldn't get an appointment, got an infection, and thus onj.
I hope you are also consulting with an mbc specialist. A general oncologist is not a good idea for us. I was on Xgeva monthly for a while, then went to every three months. It is strong stuff and sticks around for a long time. If you go back on it, quarterly should be okay.
agree - looking for a new doc for when we move to Tucson in the next 30-60 days Thank you!
I had the same symptoms after the first Zometa infusion. Very difficult few days with symptoms like the worst flu ever. I called my oncologist office and they said it’s normal to feel this way and the symptoms should be less severe with each dose. I have found this to be the case. I’ve been on it for 1.5 years and the side effects have diminished tremendously. Now I most feel tired after my monthly Faslodex and Zometa treatments. I pray you feel better soon.
Thank you
Good News! My insurance company and my former cancer center team have "reconciled" so I am spending the day trying to get back to my "family". This experience has made me so appreciative of the difference in care (emphasize the word care) I had been receiving. I am not saying that the team I have now is bad but its just not as hand's on. I started weeping with joy during the local news report last night about the insurance.
My numbers are holding steady on the Trodelvy - CA15 up a tiny bit and the new marker we started testing went down. I feel pretty good most days and I am grateful for every day.
I am also thankful for all of you and your support!
That's wonderful news for you Allison. Frustrating that they had to even put you through that added stress only to reconcile months later. Certainly not putting the patient needs as the top priority. Regardless I'm glad you are returning to your 'family'. Take care.
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