Anyone doing Zometa to reduce risk?

I had one Zometa infusion. It gave me fever and body aches so severe I could barely walk, and I'm a pretty tough old bird. My onc switched to Prolia every six months, and then I moved to another state and found another wonderful onc. He said denosumab (Prolia) and alendronate (Fosamax) had the same mechanism of action for prevention of mets, and alendronate was cheaper and taken orally once a week. So I've been doing alendronate for a year or so.

It's all a risk/benefit decision. My teeth are very healthy but I would worry if extractions were necessary. There's also emerging information about risk of atypical femur fracture.

Cancer. The gift that keeps on giving.

I just did a search and found this thread. Holy cow. I just had my first zoledronic acid infusion last Tuesday and I thought I Was having an allergic reaction and ended up at the ER. I was told to expect minor "flu like" symptoms but I was so focused on the jaw stuff, I never imagined what it might be like when I got home. A few hours after the infusion, I started to feel the flu symptoms. By 11pm, I had a fever, my muscles were hurting from head to toe so much that I couldn't hold my own body upright. I am not brought down easily - I've been through multiple surgeries, chemo, radiation, etc. - I'm 53. I've got a very high tolerance for pain. This knocked me down and scared the crap out of me. It wasn't an allergic reaction, just a very painful, very awful one. Here I am almost a week later - it took 3 days to shake the fever and body aches, but I'm still headachy and just not 100% right. I couldn't eat for a few days. Constipation too. Just really as bad as any reaction I had to any chemo infusions. I am totally blown away by what the infusion did to me. I understand all of the reasons to do these things. And I guess, now that I know how bad it can be, I'll mentally prepare differently for the next ones (once every 6 months). But I wish someone had said "just be prepared, it's possible this will be as rough as anything you've done so far" and maybe then I wouldn't have freaked out and gone to the ER. Not even my worst chemo days (and I had some very bad ones) led me to the ER. But I think that's because I expected to feel horrific. Anyway, now that I've read this thread, I feel much less alone. And maybe - based on what I've read here - the next ones won't be as bad. To me, I'd really do anything to protect myself from recurrence - but I just feel like I need to know what I'm getting into in order to cope effectively. Or to endure. Anyway, wow! I could never have guessed that, after everything I've been through, this one "should be fairly easy" infusion would be the thing to send me to the ER. Thanks for all of your posts. I feel so relieved that it wasn't just me! Onward!

hi there- I am almost 4.5 years out from and doing well-have had stable osteopenia for years-- I am one who will be on letrozole for 7 years--stage 2b- with high oncotype score--/2 nodes--I had my first zometa infusion in july and will continue every 6 month for 3 years--I was not expecting the side effects I had--awful total body aches the 2 nd day that lasted only 1 day and on day 8 my 3 areas of regular age related arthritis - foot,neck ,base of thumbs flared and very painful for 3 days- treated with warm hand soaks and otc pain pains--will be better prepared next time in January---will stick with it as doing all I can to reduce recurrence risk to bone and progressing to osteoporosis--next dexascan next summer

have been on letrozole 4 years this January and other than insomnia and morning stiffness am doing fine with it-think of it as my best friend going forward--best to all-

Hi, all!i know this is an older thread, but I was so happy to see some more recent posts! I had my first Zometa (zoledronic acid) infusion today to counter any negative effects of Exemestane and potentially minimize risks of bone mets - it was infused over 20 minutes and ended at about 1:15 PM EST. It’s now 10:30 PM and I haven’t felt much but a headache, but I got my second Lupron injection today, too, so the headache could be from that.
I am hoping I get lucky and don’t have the Late Phase Reaction, but it sounds like several of you didn’t have any symptoms until hours or a couple of days later.

I will be getting the infusions as a preventative every 6 months, and understand that the first one is the most likely to cause reactions. I haven’t had my Dexascan yet, as the schedulers are a bit overwhelmed with back-logged appointments and absences due to Covid. I’m curious to see how these 51 year old bones are holding up!

Any advice from anyone who has endured this treatment for several infusions?

Hope everyone is well and enjoying the beginnings of a new year!

Jen

Jen stay really hydrated and be prepared for delayed symptoms. I think mine kicked in about 18 hours after my first infusion. Just felt fluish kind of crappy for a day or so. Hopefully you won't experience any symptoms at all.

I forgot about the hydration - my MO warned me and I prepared by starting extra hydration a day or two before the actual infusion.... no idea if it would have been worse without the hydration.

I think I might have had saline with my second infusion...