Anybody on Zometa injection/ Zoledronic acid?

[Mmnyc]

Hello everyone,

I had a bone scan last week and it revealed osteopenia 😱😨🤯 I’m not surprised as I feel it. My poor bones have deteriorated since I started on Anastrazole and now I’m on Exemastene. I’m 42 so I have to be on hormone therapy for 10 years and I don’t know if my bones will hold up.

What’s scary about this Zometa injection is that it causes jaw pain and I can’t imagine taking any more pain 😫 and possibly loss of teeth?!! Has anyone experienced this?? My teeth are so beautiful and I can’t imagine losing them!! Of course, my nurse oncologist told me it’s like less than 2% experience this, yet they want my dentist to give me clearance so that I can start this treatment. They are looking to start me on it in late January.

I always get great comfort from the women on here because only you guys understand what it’s like to go through this painful BC journey.

[thdancingferret]

I’ve been on steroids since I developed autoimmune disease after my cancer treatment. I ended up with worsening osteopenia that wasn’t responding well enough to oral Fosamax. As a result of this, my oncologist switched me to Reclast (IV Zoledronic acid) and I had my first infusion about a month ago. It does warn that possible side effects are bone pain and jaw/teeth issues. However, I made sure to hydrate myself very well in the days leading up to my infusion appointment and I experienced NO side effects whatsoever. Everyone is different, of course, but I think if you get clearance from your dentist to be safe and make sure to drink lots of water leading up to your treatment, you should hopefully be fine. I’ll be keeping my fingers crossed for you, hang in there!

[Mmnyc in reply to thdancingferret]

Thank you for your reply🥰 when I did my research online I noticed that there are two types of this zometa, one is an infusion and the other one is an injection. My oncologist wants me to get the injection 2x a year. Honestly, I’m scared. I just don’t understand why if this is supposed to help with bones why it can cause jaw pain? That’s the first question I’ll pose to my oncologist when I see her in a couple of weeks. Then I’ll decide if I’ll go on it. 🤦🏻‍♀️Honestly I know I’m heading in that direction because what can I do? I feel like I don’t have an alternative. I asked if they could switch me to something besides the Exemestane and they said all the hormone pills cause osteopenia😫

[SoCalLady]

I have been taking Zometa for years. It's an infusion that they administer slowly. If you need any teeth work like crowns, etc. get the work done before you start Zometa. I only get it once every 3 months. If I have major teeth work to do then I go off of it until it's all finished. Zometa will stay in your system and continue to work several months after you stop taking it. Have had no jaw problems.

[Mmnyc in reply to SoCalLady]

Thank you for your reply, I have veneers on my teeth and on my last check last year, everything looked good but I know that veneers only last 10-15 years or so. My concern is that this zometa will affect my teeth to the point where I won’t have any enamel , if that makes sense? I’m glad that you have been on it for years and you haven’t had any bad side effects.

Question, from your post I gather you get the infusion and not the injection? Is that correct?

And also why can’t you get dental work done say like 2 weeks after your zometa infusion. That’s the part that I don’t get. Why does this affect your teeth/jaw?

[afraidofdrugs]

Perhaps you should get an opinion from another oncologist. Why do you have to take them for 10 years, and what sort of guarantee do they give you that it will keep the cancer away and for how long? I just started exhamestane 2 weeks ago in order to shrink the cancer tumor before surgery, and I already have decided I don't want to be on this very long at all. It just feels like it's going to lead to more health problems.

[Scrapbooker in reply to afraidofdrugs]

I have been on 4 different 0f these meds & I had more problems on exhamestane. I went back to 1st one, Anastrozole. Yes side effects but less. It can cause & did for me carpo tunnel symptoms. I’ve learned to work around symptoms kinda but still on because I know I need meds. Exhamestane made my joints bad & couldn’t walk, so I got off of them. Another thing that helps with meds is an allergy pill..yes weird.. is Claritin. tumeric is another helper. God bless you & hugs & prayers.

[afraidofdrugs in reply to Scrapbooker]

Scrapbooker Thanks for your input, and sorry to hear about the carpal tunnel. I've had that before (from computer work) and know how awful it can be. How long were you on exhamestane before the carpal tunnel showed up? Right now I'm 3 weeks in, and only had two or three days where I felt really bad on it. But the drug creeps me out.

[Scrapbooker in reply to afraidofdrugs]

Hi again😃. The exhamestane is the worse drug ever for me. It hit my joints & within 19 days I couldn’t walk. I got off & went back to Anastrozole that gives me carpal tunnel. I’d rather have carpal than not walk. I still have trouble with walking from the exhamestane a lot but so blessed sometimes to be ok. It’s my first finger & thumb that doesn’t work because of Anastrozole. It got worse going into my 3rd month to answer your question. For up to a year of Anastrozole it got worse daily , was & is bad but I’ve adjusted by using 3rd fingers.I feel like my pain isn’t as bad as some peoples so I just keep going. My daughter ties my tennis shoes & does up my buttons &

Other things. She is my blessing. 2 more years of Anastrozole. You have every reason to be afraid of drugs...they are deadly but hopefully won’t let our cancer come back. Prayers for you & all of us! ❤️🙏

[afraidofdrugs in reply to Scrapbooker]

Scrapbooker Yikes! thanks for reply. Ok that is very scary. I have found that when I've felt bad, moving helped. So I'm striving to exercise more. Doing the tumeric too, and every other anti-inflammatory I can get my hands on. Supplements have taken over my countertops.

[Scrapbooker]

I’m on Prolia. However spelled??? An injection ever 6 months. Had to go to dentist for ok. Only had one so far & no side effects...yet...shocker. Scary

[Jg1960]

Hi Mmnyc, My Oncologist wants me to also go on Zometa infusions after I finish chemo. She said it's an infusion every 6 months for 2 years. The reason is because it has been shown to reduce bone mets by 2% in post menopausal breast cancer patients, the bone strengthening aspect is secondary. The problem I am having is that my research shows there is a 1 to 3% chance of getting Osteonecrosis (the jaw bone dying). There is no real treatment for osteonecrosis if it happens. I've read that the osteonecrosis happens if there is any injury to the mouth, which I believe is why they want you to delay any dental work like tooth extractions and such. But they say good dental care is important. My concern is if the hygienist is a bit aggressive in cleaning (which happens) would I be causing more harm than good. In my mind the 2% benefit is canceled by the 1 to 3% chance of getting osteonecrosis. And the drug stays in your system for a long time and the osteonecrosis can happen years after treatment is over. Were you given any information on this? My oncologist never mentioned this to me when we discussed it. I plan to do more research on it but am leaning toward declining the treatment.

[Mmnyc]

Hi Jg,

Yes I did read about Osteonecrosis. My oncology nurse explained that Osteonecrosis is very rare. Honestly, I was very concerned about the jaw pain and possibly losing teeth. I know now that’s not a side effect but at the time I thought it was. Honestly, what choice do I have? My poor body aches everyday and I cannot imagine my jaw hurting as well. Just gonna pray a lot 🙏🏽🙏🏽For now, I’m putting it on hold. I’ll probably do it sometime after April.

Best of luck to you, no matter what you decide 😊

[Sadiedog12 in reply to Mmnyc]

Sorry I keep forgetting to add that I also have to take a huge dose of calcium every day to protect my bones too.

[Sadiedog12]

My teeth are ok so far no I have had three infusions. No jaw pain either🤞

[Mmnyc in reply to Sadiedog12]

How many infusions are they giving you? Monthly? Or every 6 months?

I’m glad you haven’t had any side effects.

Would you say your bone discomfort has gotten better? Same? No difference?

[Sadiedog12 in reply to Mmnyc]

Ps. Forgot to include that zometa has not given me any bone pain at all. However Anastrazole the hormone blocker certainly does!

[Sadiedog12]

I have had three infusions of zometa . They wanted to start the first in conjunction with my three infusions of herceptin, perjeta and dosetaxel but I refused to have this at the time as I felt this was not a good move because side effects from this. So they started later, three infusions, three weeks apart the last one being a week ago. Now they want me to take a daily pill called Ibandronic acid a biphosphonate. I’m not happy to take this as it can cause gastric issues and I already have problems with that 🙄 so I have told them that I would rather have 6 monthly infusions of zometa. I can cope with that.