Zometa Infusions — your experience?

Posted by monimoa @monimoa, Jul 6, 2024

I am now a little over one year from the end of chemo, radiation and surgery, and one year into taking an AI. I’m in my early 50s and chemo put me into osteopenia. In response to the bone loss, my oncologist recommended Zometa. After being initially put off by the list of risks, I eventually agreed to my first infusion. It was administered 1.5 weeks ago.

I’m noticing that the side effects of the infusion are different from what a few reputable medical websites report and from what my oncologist said I should expect. I’m wondering if my case is unusual or if my experience is pretty common.

For instance, I was told that the infusion would cause flu-like symptoms for 3 days. It did. No surprise. What I was not expecting is the pain that started on Day 5. The type and location of the bone pain changes every 2-3 days, and I can’t shake the low-grade fever. I’ve had two instances so far with my blood pressure getting too low and I’ve almost fainted (I’m not on any BP meds and my numbers are always “normal”).

Those of you have had Zometa treatments every 6 months—what’s been your experience?
How long might it be until I feel better again?
Is this what all Zometa infusions will feel like in the future?
Any Zometa life-hacks you’d recommend?

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@rustydog3

My wife has been under treatment for stage 2 breast cancer for over a year and now is being advised to start Zomenta infusions. Does anyone have experience with this drug?

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I had my lumpectomy in February 2022 followed by 15 radiation sessions. At the time, I was considered osteopenia. Had first Zometa infusion August 2022 with no apparent side effects. Second infusion in Feb 2023 and not a good experience. Within a week, had severe leg pain on the infusion side and it was pretty debilitating for about 6 months. Would never do it again. However, last bone density scan from 9/2024 shows me in the normal range and no longer osteopenia so that is the silver lining in my experience. Goood luck.

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@rustydog3

My wife has been under treatment for stage 2 breast cancer for over a year and now is being advised to start Zomenta infusions. Does anyone have experience with this drug?

Jump to this post

If you mean Zometa, I do. Here's my opinion.................I went for the infusions as it is supposed to help keep your bones strong. However, in doing that it has affected my jaw and all my teeth have moved. And it causes your teeth to ache in the process. I am now looking into Invisalign and not really looking forward to it. My teeth were straight until all this. If I had to do it again, I would not!!!

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@rustydog3

My wife has been under treatment for stage 2 breast cancer for over a year and now is being advised to start Zomenta infusions. Does anyone have experience with this drug?

Jump to this post

I have stage 1 breast cancer triple positive and am on Zoladex, and Anastrizole. Recent DEXA showed osteoporosis. Doctor is recommending Zometa. Please advise of side effects or what I need to ask my oncologist.

Thank you

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@trinhttt

I have stage 1 breast cancer triple positive and am on Zoladex, and Anastrizole. Recent DEXA showed osteoporosis. Doctor is recommending Zometa. Please advise of side effects or what I need to ask my oncologist.

Thank you

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Please ask your oncologist if it will affect your jawbone. I did not and all my teeth are now going crooked.

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@rustydog3

My wife has been under treatment for stage 2 breast cancer for over a year and now is being advised to start Zomenta infusions. Does anyone have experience with this drug?

Jump to this post

I was diagnosed with metastatic breast cancer a year ago, 12 yrs after my initial BC. In addition to my oral meds treatment I started Zometa 1x per 3 months, due for my 3rd on Dec. 27.
The 1st treatment hit me after 48 hrs., excruciating pain in my legs and could not walk for almost 3 days. Did my own research and found out if I drink extra water (8 to 10 glasses a day) starting 7 days prior to and 7 days following the IV treatment as well as doubling the water in the IV, the difference was night and day and I had little to no side effect!!!
So I'm drinking LOTS of water this week and the next😉

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@sally484

If you mean Zometa, I do. Here's my opinion.................I went for the infusions as it is supposed to help keep your bones strong. However, in doing that it has affected my jaw and all my teeth have moved. And it causes your teeth to ache in the process. I am now looking into Invisalign and not really looking forward to it. My teeth were straight until all this. If I had to do it again, I would not!!!

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I was stage IIIc. I have to be honest, I took it on the slight chance it promoted protection against bone tumors. I had all 3 years, but I am now extremely limited in the dental treatments open to me. This is significant because my lower teeth cracked, broke and eventually I had needed extractions and in the 2nd phase of restorative care. Truthfully, however, they're not sure it was the Zometa or all the chemo I had over 5 years ago now, causing the breakage, etc. Dentists don't like to treat Zometa patients: too much risk for them, so I ended up having the extractions in hospital (outpatient) which went extremely well. Zometa can put 3-4% at risk for jaw necrosis.

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@rustydog3

My wife has been under treatment for stage 2 breast cancer for over a year and now is being advised to start Zomenta infusions. Does anyone have experience with this drug?

Jump to this post

I have read that 40% experience an "acute phase reaction" with fgver and malaise with the first infusion but it tends not to happen with the next infusion.

Hydrate well (IV hydration can help), ask for an hour long infusion (vs 15 minutes). If kidney disease is present it is good to do a lower dose (more frequently).

Most people I know do fine. I am on Reclast and doing fine. Fractures from AI's effect on bones are painful and disabling in my case. I wanted to do Reclast but my doctor did not want to do it due to my other health issues.

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@rustydog3

My wife has been under treatment for stage 2 breast cancer for over a year and now is being advised to start Zomenta infusions. Does anyone have experience with this drug?

Jump to this post

Thank you all for taking the time to share your experiences and thoughts on this subject. The information is very helpful and we are much more comfortable making a decision knowing what you have experienced and the knowledge you have gained in the process. We had no idea that there would be this many caring people willing to take the time and effort to post here.

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@rustydog3

My wife has been under treatment for stage 2 breast cancer for over a year and now is being advised to start Zomenta infusions. Does anyone have experience with this drug?

Jump to this post

That may be my answer.
I have drunk 80-100 ounces of water every day since early May of 2024. Might that be what has helped me limit side effects.

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