zometa

hi. I had my infusion this last July with horrible flu like symptoms for over a week. I just wanted to clarify. I think that when you get it for bone density only issues it's called reclast. When it's for bone mets it's called zometa. Not sure why.

I will get a dexa scan again in July before i have another infusion. I am on arimidex.

I think it's funny that they tell you that severe side effects are rare when there are many on this site who have experienced them.

I agree with the original post this was worse for me than chemo and very traumatic to have to be so sick again. I hope others don't have the "rare" side effects. I will try to hydrate better next time and keep my fingers crossed!!

Bc101I had a crown for a cracked tooth put in this summer and all was fine. I used a very experience dentist that specializes in crowns. I think the risk of onj is rare. Good luck. Thanks for the advice!

my dentist said I have severe bone loss in my jar. My teeth have shifted and not sure he can save them all. He is sending me to a specialist to see if bone grafting is an option. Each time I had my Zometa infusion all my teeth hurt for weeks. Now we know why. I am so bummed out. Has this happen to anyone else?

Diana, I recieved 2 Zometa infusions in 2014. My bottom teeth started shifting after the 1st infusion. They hurt. I went to my dentist, had them x-rayed. Roots looked good, healthy.

I am scheduled for another infusion next month. I had to convince my MO to get this. She brought up the tooth risk, and that getting Zometa for prevention was not standard of care. Well, I was convinced a year ago that I "had" to get it. Not happy the way my teeth look. I wish I had gone to a orthodontist, right in the beginning. So expensive, and one more thing.

bc101 it was recommended to me at the time I received the script for Arimidex that I get 1200 mg of calcium per day (preferrably from diet but if required the rest from supplements) but, more important, 1000 iu of vit D too. this was 5 years ago I've since been told to increase the D to 2000 iu per day. This was due to the effect of the AI on bone.

When I was prescribed editrondate (an oral bisphosphate) for the osteoporosis it actually came as a 90 day cycle, 14 days on the drug, 76 days with an included 500 mg calcium carbonate tablet.

When I started prolia the drug company sent me a package in the mail with information about osteoporosis and the extra special need to get a total of 1200 mg of calcium a day from diet or supplements if you are on this drug. They also included a sample bottle from a well known company for 500mg calcium carbonate + D tablets.

[the preview shows this post with 3 paragraphs, I don't know why it all runs together after submitting, sorry]. Kathy

Kathy, yes that's what I take, too. I actually probably get more than I need because I take 1200 mg in supplements, plus drink milk and whatever I get from food. I've increased my Vitamin D, too, as I've read how it can maybe help prevent recurrence and plus it boosts your mood. At least it does for me!

When I first talked with my NP about Zometa, she said it is even more crucial to take calcium because of the way it works in your body. Sorry, but I can't remember exactly how it works. I was just wondering with the ladies who have tooth / jaw problems, if they take calcium or if there are other factors that increase the risk for ONJ. Just curious.... The ONJ thing really scares me and I am thinking about going off Zometa. The more I read, the more it seems the original study that showed Zometa helps reduce the risk of recurrence is inconclusive. And I'm told the benefit is only 3%. But I"m on Aromasin, postmenopausal and have osteoporosis, so I know I should probably stay on it. Just having second thoughts....

Bc101, you asked about my bottom teeth shifting. There were a little loose. I think it is not that unusual for "older" people to have there teeth shift. I will be 60 in a few months. Wow, that's hard to write....lol....

Also after the Zometa I did have bone pain in my jaw, it was minor, I had pain in all my joints & bones. I think I am more nervous this time (3rd) than I was the first 2. I guess, the further out from dx you get, the more you wonder what is worth the pain & expensive, And what is not. My bone dexa was normal when I was dx, almost 2 years ago. Also, yes, I take calcium & Vit D...

I will have my first Zometa infusion next Thursday, and then every six months after that.  I'm assuming it doesn't take very long, but my husband wants assurance that I'd be fine driving myself.  I understand that the first time often causes flu-like symptoms, but that's not immediate, right?

Shycat,

You will be fine to drive yourself, the flulike symptoms aren't immediate and hopefully you won't even have them at all. My infusion usually takes around 30 mins total. Best wishes to you.

Sarah

Shycat - you should be fine driving home. Be sure and hydrate well prior to infusion and pop a tynenol. I had flu like issues the second evening and lasted about 12 hours. Just completed #2 with no issues. My infusion last 1 hour....slow with plenty of fluid.

Best wishes to you!

I went to a specialist about my teeth shifting and the bone loss. He said not much can be done because Zometa stays in our system too long. Years. Only thing they can do is scaling. Sounds like fun, not and a mouth guard to wear a night. Totally bummed out! One of my front teeth is loose. This sucks.

I had 3 infusions over 18 months. I don't want anymore!

Hi all -

I have been off the boards for a year or so, but am checking back in -- fun to see some posts here from friends I remember from my lumpy, chemo and rads days. I am on Tamoxifen and Zometa every 6 months now. All has been good for almost 2 years, minimal SEs. But lately a lot of stiffness and pain in my right hip and knee, plus pressure in my right shin, kind of like shin splints. I see my onco after my next Zometa in April, but wondering if anyone else has dealt with this? Maybe it is arthritis and I am just getting old! Lol

cp.....I had read that too....but they didn't say whether or not it was warranted for those of us previously treated with Zometa ....especially those who don't have bone issues. Worth digging deeper? I like Dr. Gnant and I think he is well respected both here and in Europe...

VR - it took me a while to find this article I previously read. See this link.

http://www.breastcancer.org/research-news/prolia-r...

"Our new data suggest that this treatment should be offered to all patients with hormone-receptor-positive breast cancer who are receiving adjuvant aromatase inhibitor therapy, irrespective of their bone health status," said Michael Gnant, M.D., professor of surgery at the Medical University of Vienna.