Anyone dealing with osteomicrosis?

[Mkeman]

I am on Iligard, Zytiga and 10 mg prednisone. My PSA is undetectable and the mets in my bones have regressed. However, as happens with these drugs, my osteoporosis,is progressing. My spine remains normal but my right hip T score is -2.7 and the left is -2.4. My MO wants to start me on Zgeva. One of the nastiest sides effects is rare but does happen....osteomicrosis of the jaw. The jaw can literally disintegrate, bone can become exposed in the mouth, extractions don’t heal and it is painful. it is irreversible and no really good treatment exists. I have to see an oral surgeon on Friday for a full mouth exam before taking it. The option is increasingly weaker bones likely leading to fractures at some point. Has anyone experienced this problem taking this drug?

Thanks!

[StephanB]

I have been on Xgeva for over a year, and so far so good, no osteonecrosis of the jaw. My sole issue with this medication is that I've had hypocalcemia (low calcium blood level) but nothing big to worry about and that can't be helped by taking calcium supplements.

[Tall_Allen]

It's a rare side effect (about 3% I think) that increases with time on the drug (Xgeva or Zometa). Be sure to take Celebrex with it - the combination increases survival by 22% in men with metastases.

[benninger]

Husband had 4 shots of xgeva . last one in March, he was complaining of pain in his jaw but we thought it was from the chemo because he was getting sores in his throat . I called his dentist to take a look to see if he could see anything and he said he could see a spot way in the back on his jaw bone. We then went to an oral surgeon who confirmed osteonecrosis of the jaw. No more xgeva for at least a year. Yes we did have him checked out before starting the chemo. Really rare to happen so quick but it does happen.

[Mkeman in reply to benninger]

Thanks for your post.,Eveyone say don’t worry...it’s rare...you won’t get it. But your post shows that the 1% or 3% are real people...like me. Other than suspending the Xgeva, did your husband get any other form of treatment? Is he showing improvement? I have been told that Xgeva becomes part of the bone itself so effects don’t go away after quitting the drug. Also, I have been told that fractures of the spine can occur more easily after you stop the drug. Has anything been said to your husband about this? Good luck to both of you.

[benninger]

They put him on antibiotics and we go back to the oral surgeon on June 5th. He said it is rare to get it . He only had 4 shots of it one every 4 weeks. The spot is way in the back by his wisdom tooth you can see the bone. Hopefully it helped the bone mets. It is not hurting like it was. Nothing was said about fractures . His oncologist just said he is off it . We all make choices in this horrible disease hopeful it did some good. With our luck this past year ,and three out of hundred one was bound to be ours. But 97 came out good and you could be one of them.. good luck and prayers your way