Zometa and angry!

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Anonymous
Anonymous Member Posts: 1,376
edited July 2017 in Stage IV/Metastatic Breast Cancer ONLY
Zometa and angry!
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  • Lainey64
    Lainey64 Member Posts: 740
    edited April 2016

    Hi everyone, I have been on Carbo/gemzar for 6 months and my onc finally said we can take a break from the chemo. I had a very good scan in Feb (NED) and he'll scan me again in June to keep an eye on things. This was great news for me since I have a vacation planned for early May. I thought, "Yeah, I'll have 4 good weeks to recover before my trip!" I was heading out of the clinic feeling quite elated and then I get a call from my onc's nurse telling me I needed to come back inside for a Zometa infusion. A what??? I told her that my doctor didn't mention anything about that and she said "oh yeah, he forgot". So as I was sitting there waiting for the Zometa, my doctor came out and told me that it didn't change anything we discussed but he wants me on a monthly Zometa infusion for an indefinite period of time. He assured me that the SE's are minimal and 'most' women don't have any. So, Day 1 of Zometa wasn't too bad but the next day I was miserable. Chills, sweats, aches and pains and overall crappy feeling. I had to call in sick to work. I felt worse than I did on the carbo/gem! Today is day 5 and I'm still not 100%. I'm still achy and getting random pains that freaks me out. I have googled and searched and have found info that a lot the SE's from the 1st infusion will get better with future treatments. I'm hesitant at this point to get the next one as it will only be a week away from my vacation. Any ideas? I'm so mad at everything right now! My doctor, the cancer, the world. :-) I guess I just need to vent but also looking for some advice, experiences.

    Thanks!

    xoxo

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  • Bluemnm
    Bluemnm Member Posts: 1,078
    edited April 2016

    I originally had horrible side effects from Zometa, the first few times I had it I would sleep for days afterwards and felt so unaturally cold. Then someone suggested that if you do a 15 minute infusion, have them up it to 25 minutes or longer. So I asked my nurse to do that and it made a huge difference. I also make sure to take Claritin two days before and two days after and to drink plenty of water. All of those things have helped me and now I hardly have any side effects. Sorry you are having a hard time with it.

    Sarah

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  • 50sgirl
    50sgirl Member Posts: 2,527
    edited April 2016

    Lainey, I am sorry that you had a Zometa infusion thrown at you like that. It is true that SEs are most common with the first infusion and are also most severe, but if you had known ahead of time, you could have done a few things to prepare. Here are some steps that I always take. I learned all these on these boards thanks to all our BCO sisters.

    1. Hydrate well the day before and the day of the infusuion.

    2. Take Tylenol or Advil the day of and following infusion. Some people take both. Since I am allergic to ibuprofen, I only take Tylenol.

    3. Make sure the infusion is set to take at least 30 minutes. Ask the nurse ahead of time. My infusion nurse always sets it for 45 minutes. Infusions quicker than 30 minutes are more apt to cause SEs. This info is from bco members' personal experiences. I am also given IVfluids before Zometa, and that helps with hydration.

    4. Tell your mo and/or infusion nurse about any SE's you experienced with previous Zometa treatments so they are aware of them and can make adjustments if necessary. My mo and infusion nurse always ask me about this.

    If you continue to have terrible side effects, ask your onc if you can switch to something else. Some people have a better experience with Xgeva.

    I hope you feel completely better soon and do not suffer such terrible SEs in the future.

    Lynne



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  • Lainey64
    Lainey64 Member Posts: 740
    edited April 2016

    Lynn, thank you so much for the tips! I will be sure to do all of these things. I guess the part that made me angriest was the fact that I wasn't able to prepare. I will be ready next time!!

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  • Kandy
    Kandy Member Posts: 1,461
    edited April 2016

    Lainey,

    I am so sorry you had such an unpleasant experience with Zometa. I do hope it gets better for you. I have been taking Zometa for a little over 2 years. I have never had any side effects from it. But I am a big water drinker, so maybe if you hydrate well next time it will help. If not, I agree that you should ask for an alternative. Wishing you nothing but the best.

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  • SonnyB
    SonnyB Member Posts: 732
    edited April 2016

    I have also found the above tips to work well. I get hydration first then a 45 minute drip for the zometa. I also take Claritin the day of and for two days after. That said after over two years I still have body aches the second day after my infusion but they are manageble. Hope your vacation is great!

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  • Bestbird
    Bestbird Member Posts: 2,818
    edited April 2016

    Lynne, thank you so much for the helpful tips regarding Zometa! I hope you do not mind that I've included them in my MBC Guide (which is offered free upon request by visiting the top of this page: https://community.breastcancer.org/forum/8/topics/831507?page=2#idx_32

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  • Lainey64
    Lainey64 Member Posts: 740
    edited April 2016

    Thanks everyone! I have the Claritin and found that it did help a lot with the pain. I'll be sure to take it before and make sure the nurse extends the drip to 45 min! Oh, and I will be chugging the water big time!

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  • Cafelovr
    Cafelovr Member Posts: 1,534
    edited April 2016

    I've taken Zometa for 5 years, and I can't say anything different than anyone else has said. My first treatment made me feel like I had been run over by a Mack truck. The next one, nothing. I took Claritin as well in the beginning. Slow the infusion down, HYDRATE, and you should be fine! Enjoy your vacation!!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2016

    I had a really bad reaction after my first zometa infusion, and had fevers and severe flu symptoms for 3 days. The 2nd one was much better b/c of some changes that were made. It definitely was better to do a longer infusion; we upped mine from 30 min to an hour. I also started rotating ibuprofen and tylenol before the infusion began along with taking zofran for nausea before it started & for the next few days. Taking hydration more seriously was helpful too. I was prepared to be down & out for another 3 days, but the combo worked. Hope you find what works for you!

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  • Jillianclaire
    Jillianclaire Member Posts: 15
    edited April 2016

    I had a fever and flu like symptoms after my first round. Hot flashes too. I woke up covered in sweat. Second round was sooo much better. Drink tons of water

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  • sandilee
    sandilee Member Posts: 1,843
    edited April 2016

    I feel for those of you who have reactions from zometa. Have any of you tried Xgeva instead? I've never had a bad reaction from Xgeva. I may be tired the day after, but not severe fatigue and no pains, chills or anything like that. Plus, it's a quick injection in the arm, like a flu shot. I actually think flu shots are worse.

    Xgeva may be a more expensive drug, but the manufacturer does have a program that can cut the cost. You might ask your onc about it.

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  • kayrnic
    kayrnic Member Posts: 1,708
    edited April 2016

    I too found the side effects got better with each infusion. I would get flu like symptoms too. But now, I barely notice anything. Hang in there!

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  • Nicole503
    Nicole503 Member Posts: 295
    edited July 2017

    Thank you so much for posting this! I had my first Zometa infusion yesterday and got the same "no real side effects" assurance.

    Not. My. Experience.

    I woke up today (Day 2) feeling about 105 years old. I could barely participate in the dance class that I love and I feel all chemo trough-ish. I so appreciate you for sharing your experience. I can be patient with myself and hope that this too shall pass, and each treatment might be a bit easier. But next time, I will make a small clearing in my life in which to rest.

    With much love for you all,

    Nicole

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  • Mary85
    Mary85 Member Posts: 46
    edited July 2017

    Oh my goodness! While I'm so sad to hear you ladies suffered these side effects it actually has provided me with some relief to know I was not the only one who experienced an adverse effect from Zometa! My onco said that Zometa was the best option because it had the least amount of side effects. Not true! I had a Zometa infusion on June 21 in the afternoon and by midnight my mother had to call an ambulance because I was incoherent, vomiting, had chills and a high fever. My onco wanted me to continue treatment with Zometa but I refused--I am too terrified to take another infusion. I start Xgeva next week instead.

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited July 2017

    Mary,

    I have continued side effects from Zometa that aren't as bad as the first infusion, but still present. When I told the doctor that I wished to try Xgeva because it might reduce my side effects, he disagreed. The Xgeva stays in the body longer than Zometa, giving you a longer window for side effects.

    Everyone has an awful first time with Zometa. I don't understand why the medical types don't warn us, because it can be mitigated with antihistamines and hydration. Once, I asked my nurse why they weren't more forthcoming with that information and she said that they feared that if they told us everything, we would experience more pain than if they hadn't. Sounds like BS, but there are some studies that support her belief (google somatizing patient).

    Take care,

    Jennifer

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  • Mary85
    Mary85 Member Posts: 46
    edited July 2017

    Thanks for the info Jennifer! I'm just so scared to take another Zometa infusion. I was so sick, I thought I was dying to be honest (embarrassing but true, lol). I will consult with my onco about other options. I just wish I had known all this beforehand.

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  • NineTwelve
    NineTwelve Member Posts: 569
    edited July 2017

    I would not agree that everyone has an awful first time with Zometa. I had some fatigue and slight feverish symptoms with my first infusion, but no really bad reaction. I don't know if it makes any difference, but I have not had any chemo yet, so my system has not had that stressor to handle on top of the Zometa.

    (ETA: I have been on monthly Zometa for more than a year. This year my onc switched the frequency to every 3 months. It's not in my profile because I couldn't figure out how to add it on there.)

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  • AnimalCrackers
    AnimalCrackers Member Posts: 701
    edited July 2017

    My first zometa infusion was awful too.  Like everyone has noted - if they would just warn you and give you tips ahead of time we wouldn't have had to suffer.  I mentioned the horrific experience to the nurse when I went for the second infusion and she suggested slowing the drip to 30 minutes.  She did that and the second infusion was uneventful.  No SE's at all.  I only experienced a bad reaction one other time and that was when I had to shorten the drip time to 20 minutes to catch a train.  I have stayed with the 30 minute drip ever since then!  Also I had infusions every month for 6 months in the beginning and then down to just every 3 months for the last couple of years.  Everything has been fine.


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