Jaw necrosis from zometa following breast ca cer treat6

Gosh that’s tough for you. These late side effects are scary. Hope you have the support you need. Thinking of you x

Thankyou

I’m so sorry to hear what you’re going through.

How long were you on Zometa and what dose? Did you only develop problems after the cycle was complete or right from the start?

I’m not being nosy but it might help others to know what to look out for. 

Hi had Zometa with my chemo, so for 6 months, then 6 monthly for 2 years, sorry don't  know dose, problems  have only started  1 - 2 years post infusions,  hope this helpful,  didn't expect it as rare side effect 

This is really worrying me. i am on my 3rd Zoldronic acid. I was told to have regular dental check ups to prevent this for example if your have gum desease you are at risk. Thankfully i dont have gum desease

I’m sorry to read about your issue, and in particular, that you aren’t getting any answers, even from your doctor. Whilst there are some known risk factors, this side effect can also be random, affecting some people who did not have gum disease or any of the known risk factors. There are some research papers about this out there on Google, but I’ve never come across a charity that deals with this, and that might offer a support group. Would it be worth ringing the freephone MacMillan helpline and speaking to one of the diagnosis / treatment advisors? They might be able to refer to you to someone, or an organisation that could give you the answers that you need. 
I’m sorry that I can’t offer any more than this for you. 

Hi have looked at all that you mentioned with no answers, thanks anyway

I had my 4th Zometa infusion on Thursday, so 2 more to go July then January. I worry a bit about the longer term side effects but decided to keep on with it. I get my teeth checked regularly and upped my dental routine. 
I read that aches tended to come only with the first infusion, but I get them every time, starting the day after and continuing for two days, then gone. I keep walking and resting and hope that the aches don’t mean that it’s more likely that I’ll be a candidate for a femur snapping!

All the best to all of us!

After my first infusion I had dramatic reaction. I thought my head would explode and I shivered so much it felt like I was fitting. That lasted about 24 hours then I was fine

After my second (most recent) infusion I was fine until day three. I’ve now developed a headache and jaw ache which so far have lasted 24 hours. I hope the pain will reduce in the next day or so otherwise I’ll speak to my oncologist. 

I do hope it moves on for you. My first infusion was given at the same time as an EC chemo so I felt dreadful anyway. I have at least developed a pattern with doses 2,3,4- 12-24 hrs ok, then bad aching and headache for about 48 hours. My teeth and jaw don’t seem to be involved.

xx