Xgeva and femur fractures?

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Lynn1234
Lynn1234 Member Posts: 169
edited April 2018 in Stage IV/Metastatic Breast Cancer ONLY

Hi everyone!

I've been on Xgeva monthly for bone mets for going on 5 years and have developed a very small fracture on the shaft part of my right femur. I've read that Xgeva can cause this, though rarely. It is not very painful at all. It was discovered as a hot spot on a regular bone scan. I then had an xray and MRI to check to see if it was a met or impending fracture. My MO sent me to an Orthopedic Oncologist who knew right away that it was from the Xgeva and took me off the Xgeva for now. Have any of you had a fracture due to Xgeva?


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  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited March 2018

    No,but my MO takes me off of Xgeva after two years, gives me about a year or so break, then puts me in it again. He says he doesn’t like anyone to be in it for more than a couple of years at a time. Maybe this is why?

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  • Lynn1234
    Lynn1234 Member Posts: 169
    edited March 2018

    Do you have any side effects from coming off of the Xgeva? How about going back on? Are you on Arimidex also?

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  • Lynn1234
    Lynn1234 Member Posts: 169
    edited March 2018

    I'm trying to find out what to expect.

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  • JFL
    JFL Member Posts: 1,947
    edited March 2018

    Lynn, there have been a few others on these boards who went through a femur fracture after many years out. I hope they chime in. What is your treatment for the fracture itself? Is your physical activity reduced? I know this is certainly a risk that I am very aware of, being on XGeva for 3+ years. My MO has had me on a plan to space out my XGeva doses farther and farther apart but I have had trouble at times scaling back. My bones were so damaged and far gone when I was diagnosed due to delays in diagnosis that I still rely on the XGeva to keep my bones strong even though my mets have been stable all this time since I first began treatment. The issue is that XGeva prevents the bones from going through the breakdown process (resorption) which keeps them relatively stronger but, at the end of the day, the bone tissue is lower quality and more brittle than typical healthy bone tissue, as it never has a chance to go through the normal, regenerative breakdown/build up process that healthy bones would go through.















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  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited March 2018

    no side effects going on and off. I’m currently on Faslodex and Afinitor, along with Xgeva. We went off the Xgeva the first time because I got ONJ, went back on about three years later because I had some bone progression and the benefits outweighed the risks. My ONJ hen been healed for two years all already. Went off about a year or so later because bones were stable, but that did not last more than twoyears, so now I’m back on again.

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  • Lynn1234
    Lynn1234 Member Posts: 169
    edited April 2018

    Thank you so much for everyone's replies. I appreciate your input!..... So far I have a small impending fracture and not much pain.Have to limit lifting over 10 lbs and climbing stairs, walking long distances. I have appts in a few weeks with the MO and then the Orthopedic Oncologist to see if there is improvement. I imagine that I'll probably have another xray or MRI to see if it is healing. But it sounds like that might be a little premature. I haven't had any progression since my diagnosis, I was stage 4 at diagnosis with mets to spine, pelvis and sacrum. All in my bones.

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  • cherylking2005
    cherylking2005 Member Posts: 61
    edited April 2018

    a beautiful sunset - curious as to what your symptoms were for ONJ. I've been on xgeva for 18 months and think something is terribly wrong with my teeth, gums and jaw. I've heard that one of the side effects of xgeva is necrosis of the jaw so I'm kind of freaking out a little bit. Have an appt with dentist next Wednesday and see onc the following Tuesday for labs and my monthly xgeva shot

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  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited April 2018

    Cheryl, don’t let your dentist do ANYTHING. 99% of them have never seen a case of ONJ. My oral surgeon, who should have known better, not only pulled a tooth while I was on Xgeva, but later, when it wouldn’t heal, went back in to clean it out again. ALL the wrong moves. Please see an ONJ specialist. They aren’t not easy to find. UCLA has a few. Trust me. ONJ is HoRRIBLE!!! You dont want it.

    Sunset


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  • cherylking2005
    cherylking2005 Member Posts: 61
    edited April 2018
    Sunset, not sure what is going on. Maybe it's something else. What was your symptoms for ONJ?
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  • dlb823
    dlb823 Member Posts: 9,430
    edited April 2018

    I had a pathological femur fracture prior to ever starting Xgeva. I also go to UCLA and was sent to their ONJ specialist prior to starting Xgeva. She’s abdolutely wonderful, and I have her contact information if anyone needs it. I was also cut back to getting Xgeva only every 3 mos due to the possible risk of ONJ with long term use, especially when combined with a med that keeps neutrophils low over a long period of time. My UCLA onc assures me that every 3 mos. is effective and safer, and after 3 years on it, my bones feel very strong. So maybe something to ask your onc about if you are concerned about the risk of ONJ.

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  • bigbhome
    bigbhome Member Posts: 840
    edited April 2018

    A beautiful sunset, I developed ONJ after 2 years of xgeva. I did not know that it was possible to go back on it. I have not had any problems for over 3 years. Cheryl, sunset is right! Don't let your dentist touch your mouth. Your Mo should be able to recommend someone.

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