Jaw necrosis from zometa following breast ca cer treat6

Weary

Welcome to the forum, I'm Daisy53 one of the Community Champions on the forum.  I'm sorry to hear that you had triple negative breast cancer and that you have jaw necrosis from zometa.  While I'm not going through the same as you I've noticed that you haven't had any replies yet so I thought I'd reply to you to welcome you to the community and to move your question to the top of the discussion.  Hopefully someone will be along shortly with an answer for you.

Best wishes

Daisy53

Hello weary I’m so sorry to hear about your situation. From what I understand jaw necrosis is a rare side effect of Zometa. I had to have a dental check before treatment and my dentist had to sign a form to say I was fit for treatment. I was diagnosed with HER2+ and ER+ BC August 23. I’ve had surgery chemo radiotherapy and I’m still having Herceptin and Zometa.  I have developed Osteonecrosis in the knee, I suspect not as bad at the jaw. I am having a nuclear bone scan on 17th to check for secondary bone cancer. I hope your team can give you support and information. It’s a horrible situation for you. Wishing you the very best.

I’m so sorry you’re going through this on top of everything else. I’m due to start zometa and the last few days I’ve been researching it and after what I’ve read I don’t think I’m going to have it the side effects sound worse than the benefits and I had every side effects from chemo and can’t go through anything like it again. 
I’ve read people who have finished it have suffered with problems with their jaws and teeth.

i hope you get the support you need. X

I’ve had two lots of Zometa so far. After the first infusion I felt dreadful for 24 hours  but no side effects after the second. I have four more to go over the next two years. 
I respect your decision to refuse treatment. It’s tough to go through the diagnosis then the gruelling treatment only to live with the fear of further problems resulting from something which might prevent future spread. 
I wish you luck. 

For me the side effects were worse after the first one then have been ok. It’s very much a personal choice. I am 74 and on Exemestane ( Aromatase Inhibitor) for 10 years . I need the bone protection that Zometa can give me. 

Thankyou, have had some replies, fortunately  for others, no one yet seems to have my problems 

Thanks for your reply, yep had to have same dental sign off prior to Zometa.

Hope your scan ok & knee not too painful

Thanks for your reply, hope all goes well with you & you make the right decision  re Zometa

Thanks for reply, didn't refuse treatment, finished all Zometa treatments  2 years ago

Thanks for reply, I felt same re Zometa, now suffering rare side effect,  just unlucky I guess, still haven't  found anyone going through  same. Doctors  don't  seem to know what will happen next