Xgeva...OH NO ...JAW

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NicoleRod
NicoleRod Member Posts: 2,906
edited June 2019 in Stage IV/Metastatic Breast Cancer ONLY

Ok everyone I just figured I would start an Xgeva thread because I do not want to keep hijacking the Ibrance one. So yesterday as some of you know was my 1st Xgeva and I had hives...now I got better today with the hydroxyzine (antihistamine) but now earlier I started having some pain in my upper jaw all the way in towards the back where your wisdom tooth would be. It stopped ...now 4 hours later I have it again.... Not gonna lie I am so scared its gonna get worse and permanent. Please Please give me some advice.

Nicole

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2019

    I don’t think it can develop with one injection, Nicole. It has something to do with jaw bone renewing itself so it is going to happen over time not all at once

    This is a good video about ONJ

    https://www.webmd.com/osteoporosis/video/osteonecrosis-jaw

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  • NicoleRod
    NicoleRod Member Posts: 2,906
    edited June 2019

    Thanks Olma looking at that now. My husband got me worried too because I was chewing gum earlier when the pain started he thought maybe I shouldn't be chewing gum? I thought that seemed a little extreme but then when the pain came back I was like "wait could he be right?!" lol

    Any way I made it almost all day with minimal itching so the Hydroxyzine worked well but my doctor did say she is a little leary and may consider the other med that starts with a "Z"....but she did say that we will play it by ear.lol

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited June 2019

    I developed the same pain about two years after starting Zometa. Went to the dentist, and x-rays showed no problems. My dentist theorized that I was a night time jaw grinder, and that "occlusional trauma" was causing the pain.

    I was fitted for a night time jaw guard, and - slowly - the pain went away.

    Now if I could stop losing the darn thing every other week, life would be better. Also, if you get one, hide it from your dog. The like to chew them.

    If the cost at the dentist is too much, try the boil and bite type you can get at the drug store. They can sometimes cause the pain to be worse because they are soft, and can cause an instinctive chewing reaction, but they are MUCH cheaper.

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  • NicoleRod
    NicoleRod Member Posts: 2,906
    edited June 2019

    Thanks for that info. My jaw is very intermittent with it feeling that way it actually is getting less and less.

    So has anyone gotten pain relief from bone mets with the Xgeva if so where was your mets/relief and how long on it did it take to notice that the pain was less?

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  • gailmary
    gailmary Member Posts: 332
    edited June 2019

    Nicole, glad you started this thread.

    I didnt catch it earlier cause we were in Yellowstone with snow storm and no wifi.

    Sorry to hear of your jaw pain. I agree its probably not the xgeva. But it sure does hurt and should be reported to Onc. I had intermittent severe jaw pain 10 yrs ago on alendronate and dr stopped it. Had been on it maybe 7 months.

    My husband recently had a tooth pulled and post put in. The tooth was causing infection in the jaw. Dont know if root broke off or if it was a chip of bone but there was something trying to poke through the jaw. Dentist said he could cut jaw and file it smooth but it will probably go away. It did! That made me feel better in case I have an issue down the line. I've read that too here. You stop the xgeva for a while till jaw heals.

    One thing is for sure. We dont hear often on this forum about gals getting ONJ. Thats encouraging. OTOH give us a few more years. Incidence goes up 1% per year your on it. At least I thought I read that in the fine print.

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