Zometa Infusions — your experience?

Wow...so many different experiences with Reclast, Zometa, etc. and awful side effects!
I am 4 months out from Anastrozole and already have osteopenia and ongoing-never ending lower back pain that is quite painful. Not too mention the daily headaches.
I will be seeing my new breast oncologist soon. And wonder what she will advise?
So concerned about reading all of the side effects from medications to protect our bones.
Fractures, jaw necrosis, tooth moving/problems, leg issues & unable to work, flu symptoms, ongoing low grade fever, etc. etc.
It is all very scary to me. I know I am not alone. But I don't want osteoporosis!
It's very confusing to a recent breast cancer diagnosis. Not sure what direction to take.
Anyone have thoughts? So kindly appreciated.
What a battle we must fight for our quality of life - post cancer diagnosis!
Blessings to all!

I did Zometa infusions every 6 months for 2 years. My doctors ordered an extra bag of hydration with it and they gave me Tylenol. It took about an hour and I had no side effects afterwards (except having to pee from all the liquids). My Dexa scans (every 2 years) shows some improvements. I am usually the person who experiences every possible side effect so I was happy that this was pretty much a non-event. I wish you well in your journey and send you a virtual hug.

Zometa affected my jawbone more than anything. My teeth are now crooked and have moved quite a bit. I had one more infusion and stopped as now most all of my teeth are crooked.

@briarrose

@briarrose
Hi,
I wish before my Zometa infusion, my oncologist had used the Predict tool to compare survivor statistics for treatment versus no treatment after surgery .It’s free, on line, and highly regarded. I only learned about it on this site. It appears for me preventative treatment will not appreciably affect my chances of survival 10 or 15 years hence. I’m 75. I’m going to doublecheck this with my oncologist. It appears Zometa may reduce the likelihood of recurrence by a few percentage points but not my likelihood of surviving. Given the very serious side effects of treatment and quality of life issues, I think this is important to discuss with your oncologist.
Most of us are given recurrence statistics but not survivor statistics. I think if given the stats, one could make an informed decision. If these treatments would give us many more years of life, we could accept the trade-off of pain and discomfort more stoically. And if treatment appeared not to make a difference, we could forgo it more comfortably.
Good luck making your decision.

Thanks so much for your "spot on" thoughts!
But must ask...what is the tool you are mentioning - the "Predict tool", is that correct?
On line and free?
Thank you!

@windyshores
You are correct on everything. I felt like I had a mild flu after first infusion, after that no problems. Drinking water before is a big help.

I took the Zometa infusions for all but my last month and the reason I wouldn't take it is because it affected my teeth. I didn't seem to have any other of the symptons you mentioned (if I did, they weren't bad enough for me to pay attention to) BUT my teeth have pretty much all shifted. They say it causes necrosis of the jaw. I didn't pay too much attention to it until my teeth started moving and my jaw now cracks. My bottom teeth are completely crooked now (they were straight before) and when I open my mouth, my jaw cracks. My back teeth are pushing away from my jaw and slamming into my tongue when I talk. I also have two crowns in the front of my teeth so I'm waiting for them to go ka-flooey! I'm done with that....................

I had a lumpectomy (stage 1 invasive ductal carcinoma) February of 2024. This was followed by 4 rounds of chemotherapy and 30 days of radiation. My tumor was estrogen positive and I have been on anastrozole (aromatase inhibitor) for 14 months. My recent bone scan showed that I had gone from osteopenia to osteoporosis, most likely due to the aromatase inhibitor which limits the estrogen my body produces. My oncologist strongly suggested Zometa by infusion once every 6 months for the next 3 years. I did not want to take it because of side effects I had read about. She pretty much insisted because they said the aromatase inhibitor is the "heavy hitter" in my cancer fight and if I don't want to do anything about the bone loss it causes, they may not want to treat me with the "heavy hitter" that is keeping my cancer at bay. I finally said I would go along with the treatment. I had my first infusion 5 days ago. 24 hours after the infusion I felt the flu-like symptoms everyone talks about. The aftereffects felt like when I went thru my rounds of chemotherapy but without the hair loss. The headaches and aches have now passed but yesterday a sadness and inability to concentrate has set in. I am 71 years old and have never been depressed in my life. I never saw psychological difficulties in the handouts given to me as one of side effects. I am seriously pushing myself to get out of bed and into the shower. Another serious push to get dressed. Feeling weepy and fighting tears for no good reason. I did a deep dive on the internet and saw that sadness and depression is a common side effect. Wish I had known beforehand. Can't wait for this feeling to pass. Has this happened to anyone else on this forum? If so, how long did it last?

I have been getting Zometa infusions once every month for over 2 years now. I had innumerable bone lesions by the time I was diagnosed with stage 4 breast cancer. So I was already having spinal fractures, that's actually what brought me into the emergency room the day I was finally diagnosed. I had fallen and fractured my T1, and also had pretty bad hypercalcemia so they were in a hurry to get me started on the Zometa to clear that out and have to stay on it because of taking Exemestane. At first I actually had it multiple times in a month to get the hypercalcemia and lesions stabilized. My first infusion I had a lot of bone pain all over and pretty bad flu like symptoms that lingered a few days after, fever, chills with teeth chattering, achy all over, very tired. The next time I had the same but the flu like symptoms were not as bad and didn't last as long only about a day. By the third time I mostly just had bone pain which was concentrated in my back, arms and legs. I continued with that bone pain each time and it would last maybe 2-3 days after. Eventually a new PA that had joined my oncology team told me about taking a 24 hour allergy pill like Claritin or Zyrtec the day before, day of and 2 days after my infusions. I now do that, I take Zyrtec because it works better for me than Claritin for allergies in general and it has helped greatly reduce the side effects. I only have very minor, occasional bone pain now. I get worse on any given day from moving too much. I was also placed on a daily Calcium and vitamin D supplement to help support my bones because of the lesions and being placed on an aromatase inhibitor.
I honestly couldn't say for sure if it gives me any other particular side effects because I went on so many different treatments all at the same time. I have so many different side effects now but can't pin the blame of one specific side effect on any one specific drug because of that. I only know these specific mentioned ones because they would only happen directly after an infusion, so it was easy to tie them to the Zometa.