ONJ with bone and liver met

thria157 · May 2019

hi all

I am writing on behalf of my mother. She is a 6y MBC survivor. Cancer recently moved to liver but it’s small and manageable. She is currently on everolimus and exemestane that decreases the TM rapidly.

However, she has developed a osteonecrosis on 4 areas on the jaw that the skin doesn’t cover the bone. She had to remove her teeth but she is not able to eat properly because there are open areas there.

Also due to E&E she has developed stomatitis.

The doctor is sceptical in regards to performing an operation due to her low RBC.

I want to know if there are any other people here that had similar cases that manage to get over it and recover because she is losing hope.

Thank you

jessie123 · June 2019

Was it caused from drugs for osteoporosis?

Greenteatwo · June 2019

thria157, I experienced the side effect of osteonecrosis of the jaw one year ago when I was on the bone support medication called xgeva. That is one of the side effects of that bone medication. I recovered from the onj after I had the effected tooth and bone removed. I did go to a specialized maxillofacial Surgical dentist for that procedure. After frequent rinsing with the medication to keep the mouth clean the area healed. I have not had returned symptoms.

I also have Mets to the liver and I am taking the everolimus and exemestane combination as well for the past 13 months. In regards to the stomatitis it is vitally important that your mom be on the steroid mouthwash. Stomatitus is a side effect of the everolimus. Also there might be a consideration of lowering the everolimus dosage. Mine was lowered after one month due to severe fatigue.

Your mom's issue is complex, please insist that the Medical oncologist decide on how to reduce her symptoms from the everolimus.

thria157 · August 2019

thanks for the response. Did you stop denosumab before the surgery and then start it again ?

Thanks

ONJ with bone and liver met

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