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zoledronic acid
Aud
13 Posts
Anyone have any input on this drug or similar for bones while taking letrosole? I’m nervous of yet another drug .
27 Replies
Runner Girl
2894 Posts

Hello @Aud

I'm going to tag @Essjay who has experience with the Zoledronic Acid.

Runner Girl

jocrawford
11 Posts

I have my last Zometa injection on Jan 26. I'm also on Letrozole (coming up on my 3rd year of what will be 10). I would usually feel lousy a few hours after the injection and the next day. Kind of like having the flu. It only ever lasted about a day. I hope your reaction to Zometa will be mild too.

Essjay
2051 Posts

@aud I only tolerated 3 doses of zoledronic acid due to side effects. I’m not on an AI though.

I believe @Kims1961 is on both and may be able to share her experience

Kims1961
2303 Posts

@Aud Great question - thanks @Essjay for the tag.

Thankfully I found the zoledronic acid treatments not that hard to manage. They were every 6 months, with minor side effects for me ( mild bone aches/headache - Tylenol managed them well)

Now Letrozole was another story for me! I was on and off it for a year - until I was just switched to Tamoxifen. I tried to manage Letrozole but the side effects were too challenging.

How is the Letrozole for you?

Sending you positive energies! Kim

Aud
13 Posts

I’ve only been on the Letrosole for 2 months. Not too bad yet, hot flashes occasionally. Thanks for your experiences.

Hellen529
22 Posts

I’ve been on anastrozole for almost six months with no side effects and I’ve had one zoledronic acid infusion again with no side effects. Hope this helps. Good luck 😉

Viva
64 Posts

I have been on Letrozole for 2 months with minimal side effects. Over half done my radiation treatments right now. No problems there at all - yet. I do start the Z acid in a few weeks so this post is of help to me too. I was sent to a Dentist the other day in preparation of the Z acid. Which I found very confusing as I was just at my own dentist for a cleaning and check up. I am so grateful I did. I guess your jaw bone cannot be disturbed once on the Z acid. You can have fillings but no extractions. Anyway I had a molar pulled that had been annoying me but my own dentist had said to leave it. It was a very good decision to have it removed and am so thankful I went. Now I’m ready for Z acid every 3 months for 2 years.

L.A.R.K.
6 Posts

I have not personally experienced taking the drug Zometa, but online they claim it is administered by IV every 6 mos. for 3-5 years. My dr. is supposed to discuss me having this treatment. It sounds really good about what I have read, but it is yet another drug my oncology dr. may prescribe for me if I agree to take it.

Hezz
117 Posts

I've been on Anastrazole for 2 years (of 7-10) and had 3 Zometa infusions with a 4th coming up soon. The first infusion I got very dizzy (prob due to low blood sugar) so they don't infuse quite so quickly anymore to be on the safe size. I often feel a bit flu-ish the rest of the day and the next day. Nothing too bad at all. Good luck with it! If you can manage the AI and the infusions it's a statistically good plan!

Hezz :)

@Aud

I am taking both Zoledronic Acid and Letrozole currently. I was very tired and had joint pain when I first started Letrozole but now my body’s got used to it and feeling a lot better.

i only had one infusion of Zoledronic Acid so far. A friend of mine who’s also on it suggested I ask the nurses to administer it slow (twice the time) and I felt fine during the infusion and for the rest of the day. However, I woke up in the middle of the night with chills and fever. It knocked me right out for a day. I even went to get COVID tested because the symptoms were pretty bad- worse than when I was doing chemo. I am hoping it’s just a one off since I am scheduled to be on it for 2 years. The thing thing is it only lasted a day. :-)

hope it all goes well for you!

MBC
15 Posts

I had my first zelodronic acid infusion on January 13, started Letrozole on the 14th and Ribociclib on the 18th.

So far, so good. No side effects. Maybe it’s too soon to tell though.

I hope you have a similar experience.

Shora
24 Posts

Hi @Aud

I had my first treatment of zoledronic acid in November, which I'm scheduled to have every 6 months for 3 years.

The evening of the treatment I had a bit of a headache but it didn't last long. I was fine until 4 days later when I got clobbered with flu-like symptoms, which apparently isn't uncommon. I had a low grade fever and all my joints ached, especially in my hands, and I was on the couch under a blanket for a few days.

I told my oncologist about this and he suggested that I double up on my calcium supplements for four days before my next treatment and four days after. Hopefully that will help prevent it next time.

Good luck!

Shorra

Aud
13 Posts
Sounds like everyone has a slightly different outcome with this. After a lengthy discussion with my oncologist nurse practitioner, I decided to not go ahead with it. I’ve done everything else, surgery, chemo, radiation, hormones, and this seemed like the risks outweighed the benefits for me. This may not be everyone’s case I know. I feel good about my decision and if it turns out to be a mistake later, I’m ok. I just want to start back living with as few side effects as possible. Best to everyone on your journey.

@Aud Thanks for sharing your decision with us. I'm glad to hear you consulted with your health care team and made the best choice for you.

All the best,

Lacey

Skye2
225 Posts

@Aud

Hi there! I’m supposed to start Letrozole (double mastectomy spread to lymph nodes, axillary dissection, chemo and radiation) and my oncologist wants to do Zometa as well, but I’m very concerned about the “osteonecrosis of the jaw” side effect. I have a ton of crowns and veneers, and need 2 implants. I’m wondering if there is an alternative to xometa?

thanks

Sue

@Skye2

Here is a link to some discussions about Zometa: Search - CancerConnection.ca that I hope you find helpful.

Have you had issues with your jaw in the past? Have you talked to your Oncologist about your concern?

Keep us posted with what you decide,

Lacey

Skye2
225 Posts

@Lacey_Moderator

Hi Lacey

…no, I haven’t discussed it yet as I haven’t started the Letrozole or the Zometa. My concern is that I have quite a bit of dental work, and will be looking at getting a couple of dental implants this year, and I’m worried about the health of my jaw (bone) especially if the Zometa causes osteonecrosis of the jaw.

I do have an upcoming appointment with my oncologist and will discuss it with him as well, I was just looking for personal accounts or experiences with the Zometa.

Thanks for your help!

Sue

@Skye2

This is a great place to hear about other's experiences. Here are some members who have experience with Zometa: @Country Girl, @Essjay, @Daisycake, @Hezz, @A64

Hope you get some feedback to help you with your decision,

Lacey

Essjay
2051 Posts

@Skye2 i remember being a little freaked out about the potential for dental issues and I have heard some scary stories….

I had three doses of Zometa but I found the side effects (headaches, flu symptoms and fatigue for three days) was too much. I was keen to get back to daily life since my cancer was gone. We tried slower infusions, antihistamine and pain meds before during and after - didn’t help me.

I did my research and learned that my breast cancer (triple negative, basal cell-like) is less likely to attack the bones than other types of cancers. While I knew the Zometa would potentially benefit my bones in the long run (protect me from osteoporosis) I decided to try the diet and exercise route with supplements for vitamin and and calcium. I presented my research to my oncologist and she didn’t push the issue - it was my choice.

Ive had a couple of bone scans since and no cancer, which is good although it has flagged arthritis (nothing to do with my treatment)…

Skye2
225 Posts

Thanks @Essjay

im going to have to do some reading before I make my decision. Is it the “only” drug they can prescribe for osteoporosis?! I’m truly leaning towards declining the drug, but will wait and see what my oncologist has to say.

Essjay
2051 Posts

@Skye2 there are other osteoporosis treatments available…

Skye2
225 Posts

@Essjay

Yes! …just reading about some now! …feeling better!🤗

Faith1
1025 Posts

@Aud I have been on Letrozole and getting the Zoledronic acid every six months since January 2021. The Zoledronic acid just gives me a bit of flu like symptoms for a couple of days. Tylenol does help somewhat. The Letrozole gives me muscle and joint pain but I also have arthritis so not sure how much from which one. I have hot flashes but they are better now than in the beginning. I find thinking positive, doing exercises, lymphatic massages, eating healthy and asking for support when needed all help!😊Best Wishes to you!

@Skye2

You may find it helpful to call and speak to one of our Information Specialists at our Cancer Information Helpline. You can reach them at 1-888-939-3333. They can help you research a bit more as well so you can make the right choice for you.

I hope this helps compliment the experiences shared here,

Lacey

#Zometa #ZoledronicAcid #treatmentoptions

Daisycake
18 Posts

The first experience I had with the zoledronic acid infusion AKA Zometa was terrible. I had it in my right arm because it is usually easier for them to find a vein there. I had fleeting pains the first day, then I woke up in the middle of the night with severe tendonitis in my right ring finger. It lasted for about three weeks. The oncologist suggested I was getting arthritis But it doesn't come on that suddenly. A nurse thought the injection may have nicked the nerve that runs to the ring and pinky fingers, but the pinky was fine. My doctor said it sounded like gout over the phone - I couldn't bend my finger anymore. She asked me to come and and examined it and said it wasn't gout, but must be an irritation from the zoledronic acid. It finally went away after 3 weeks.

It was scary to think about having it again. This time, I asked that they give it in my left arm (non-dominant). They managed to find a vein. I have had two more, both in my left arm, with no further side effects, except some mild muscle aches. I am okay with it now; the oncologist offered to discontinue it after the first episode, but I persevered, listened to people here who said it gets better. It did get better for me. Make sure you report any unusual side effects. The last time, the nurse wrapped my arm in a warm flannel and it really helped find a vein…not to mention relax me!

DarleneH
22 Posts

I had my first Zometa IV 3 months ago and had horrible back pain that lasted for 6 weeks. They said the first treatment is the worse.
I had my second one last week and absolutely no side effects. A trick the oncologist told me was to take Claritin a few days before and a few days after as it helps with the inflammation side effects and bone pain. It worked!

Nightowl
27 Posts
I had to quit Zoledronic Acid infusions as it decreased my kidney function (a relatively uncommon but documented side effect). The lost kidney function did not return, and I now have CKD (chronic kidney disease. Zoledronic Acid is not for everyone.
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