Well. I do indeed have ONJ but caught it early and both my husband and I really liked the oral surgeon I saw yesterday. He spent alot of time with us, and tried calling my onc while we were there. He recommends that I stay off Xgeva, and prescribed a mouth wash for me to use twice a day. He thinks that it will help the small area of exposed bone will sluff off and heal, and has me coming back in two months. The rest of my mouth looks good. I'm fine with this plan.
I'm on hold with scheduling for an MRI and CT. Got cut off awhile ago after waiting for about ten minutes....so frustrating! So much of the health care system is understaffed these days!
I appreciate the notes several of you left in response to my note yesterday! This is a great group!
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PJBinMI
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Good news! Mirrors my experience. I still have a flashlight in my bathroom that I used to check it wasn’t getting worse. After 3 months I got the all clear but I’m done with Xgeva. Chris
Happy for you, pleased you have a plan. Will you share with us your oncologists thoughts on xgeva, please. Once someone has had ONJ - do they ever take the med again? Scheduling is a nightmare - coonsider sharing how difficult it is with a social worker or patient representative at your center - sometimes when enough people do this they make changes to make scheduling a bit easier and friendlier. Wish you the best. 🌺
Would you mind sharing how long and what frequency you have been taking Xgeva? I have been taking it every 4 months for the last year after monthly shots for 3 years. I have had slight progression and onc wants to go back to monthly. With MBC patients living longer it seems we are taking meds longer than they were originally tested for.
Hi Aunt C, my wife was on Zometa for the first three years or so on her journey ( six year metaversary coming up in a few weeks) and she had a pretty bad case of ONJ. Supposedly that happens to around 10% of Zometa patients, but I know others on this board think it’s much higher… At any rate, it was pretty painful at times and took about a year to clear up. She had an excellent team of dental oncologists at Dana Farber who monitored her quite closely and were able to work with some of the bone protrusions and help manage the symptoms pretty well. Eventually it cleared up and she has been off Zometa ever since, as it also resulted in two other hospital stays along the way, she switched to Xgeva and that’s been fine so far…
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