ONJ

[Anita-B]

My Oncologist would only allow me to have Xgeva for a year due to the risk of ONJ he said the risk increased greatly after a year on the treatment. So sorry for all your pain and side effects x

[EvaL]

That’s great your Oncologist was looking out for you. I’m initial Oncologist never said anything about it and then when he left the Cancer Center abruptly I was left with another Oncologist and she doesn’t believe it had anything to do with the Xgeva. I am now looking for a second opinion due to that and a few other concerns.

[Hidden]

Hi Anita-B, that's so interesting! So your doc anticipated possible dental issues where ONJ would become a problem or thought that ONJ might just arise? After seeing posts here in the community, I'm newly attuned to this issue...was always aware, but vaguely...

Thanks for sharing!

Lynn

[Anita-B in reply to Hidden]

Yes he was quite adamant that a year was as long as he would allow due to possible side effects.

[Andersl]

I told the oncologist I was coming off it when I experienced jaw pains

When I read the benefits and risks I came to the conclusion that the risks outweighed the benefits and the benefits were minimal.

My advice would be that if you do take it, stop if you start getting pains in or around your jaw.

Mine fortunately have cleared up but it was a concern at the time.

[Corrina97]

very interested in your post that your oncologist suggested you only stay on this drug for 1 year as many people seem to be put on it for life. I'm on Denosumab and researched a bit and I'm really worried about getting ONJ and started to get tenderness just below left ear in my jaw . I'm wandering if you were put on anything different to replace the denosumab as had thought of you came off denosumab there is a risk of spinal fractures. Plus I had thought we needed to be on it if we had mets in our bones to help with cancer? I don't really understand how it helps and would be grateful to anyone who can explain the pros and cons .thankyou in advance x

[Anita-B in reply to Corrina97]

He said it had already done what it needed to do, I am not on an alternative, other than Decal3 tablets which are vitamin and calcium. My treatment is Herceptin and Capecitabine.

[Anita-B in reply to Anita-B]

Sorry ladies I said one year it should have been two years on Denosumab!!

[Praising in reply to Anita-B]

Mine said for life. I’m going to say something.

[Kellyonekanobe in reply to Corrina97]

If you read side effects it also says it can cause you to break a bone easier. It increases bone structure but makes them hard as opposed to somewhat flexible as our bones should be so with a fall, you can break a bone easier is my understanding. My oncologist says the ONJ happens when you already have issues with your teeth. Don’t know but do not like the side effects. The cure is sometimes worse than the disease,

[Corrina97]

thanks a lot for your reply. I'm wandering what your onc meant when he said it had already done what it needed to do? Did he explain?I'm also on vit d and calcium tablets. My cancer is ER positive .I'm on Ribociclib,Fulverstrant and Denosumab .thanks for your response I will take my questions to my next review meeting and hopefully manage to make some sense of the answers I get. I really want to take all the drugs which will help me but feel a need to understand why I'm taking them as as we all know they can all have detrimental side effects . Hoping you continue to do well. Thanks again x

[love2golfwell]

I have recently read an article that said that the limit for Denosumab should be 2 years as the benefits after that time did not outweigh the risks. My doctor wanted me to go on it, but I told her I did not want to as I read about all of the side effects and felt it was too risky. She said she had given thousands of doses and none of her patients had those side effects, which I did not believe. However, when they were going to put me on it they said I had to go to the dentist and have all dental work completed before I went on it as ONJ was a risk!

[EvaL in reply to love2golfwell]

The Oncologist I have now said the same thing, she never came across anyone that had the side effect. I also was told you have to be off Xgeva when getting dental work completed. I really wish I had down more research and now I will!

[love2golfwell in reply to EvaL]

It is so difficult to know what the right decision is when oncologists give different information to their patients. My doctor wanted to give me Xgeva every month for 2 years and then every 3 months after that forever. I thought that was a lot and just did not feel comfortable taking it with the side effects I read about. I am glad that women on this site are having success with Xgeva and Zometa. I have been taking extra calcium and Vitamin D and including more of those things in my diet. I am hoping they will help my bones in addition to the exercises that I do.

[PJBinMI]

This is interesting. I was diagnosed in 2004 and at that time the bisphosphonates like Zometa and Aridia (sp?) were real game changers for those with bone mets, extending life and mobility. I have been on Zometa and then Xgeva for probably about 13-14 years, with a break a few years ago. Originally my onc told me that having had good dental care before diagnosis helped us not develop ONJ but I've known women who developed ONJ and had always had good dental care. I was also told to have any dental work, esp anything invasive, before starting on Zometa, and that if we needed to have invasive dental work, we should be off the bone meds for 3 months before and 3 months after. Zometa has a very long half life, the amount of time it takes for 1/2 a dosage to be out of our bodies. Most meds have half lifes in hours while these meds have half lives in months or weeks. Most recently I have gotten Xgeva every four months. All this just FYO, history.

[diamags in reply to PJBinMI]

My story is similiar to yours. I've been on for almost 8 years, no problems. I have spoken to oncs that are scared to death of Xgeva, but my main one at a top 10 cancer hospital mentioned that the data doesn't suggest a high risk of long term use. I couldn't find any when I looked myself. With that and a long run without progression (knock on wood), I'm staying on it!

[diamags in reply to diamags]

I'd also have to say that we need to remember that we all respond to meds differently. No Onc out there can know how we'll respond before subscribing. With that said, they have to rely on scientific data, and it is probably best that they not to go by what one person said or did. I don't believe any of them are trying to make our lives miserable or shorter, they are just trying to do the best they can to keep us alive. It's hard for us because we want them to cure this damned disease for us.

[Hidden]

This topic has really grabbed me, with our docs giving such different advice. Is it possible that Denosumab has the limit but not Zometa? I don't even understand the landscape here, e.g. some on zometa, some on denosumab (sp?), and xgeva's in the mix, too (are the last two the same?) .

I'll relay a fuzzy memory/perception from something my doc has mentioned a couple of times...Something about the zometa infusion sort of "reorganizing" the mets? I believe this came up maybe when things were heating up and she'd note that I had recently had zometa infusion and so maybe that was driving a bit of extra activity?

My point is that *my impression* is that the effects are not long-lasting in terms of years...After you get the infusion, your body gets to work using it to heal the mets a bit?

Like the others, I'll try to remember to ask my doc...

[Iwasborntodothis in reply to Hidden]

My doc says it (Xgeva) constant regeneration of bone and therefore makes the bones inhospitable to cancer. This is why no dental work because it will (in his words) never heal.

[EvaL in reply to Iwasborntodothis]

Well I can attest to the jaw bone not healing because mine did not! So that gives some understanding.

[Hidden in reply to EvaL]

Mine didn’t heal either. I’ve had five pieces of jaw bone removed, all small and I have a huge hole in my gum where the tooth was. I still have a sharp piece of pertrudin bone that gets sore at times. I’ve recently undergone treatment on another tooth. The dental hospital advised no extraction and I’ve gone through so much pain and infections from the root canal treatment. There is a tiny stub of tooth left. I’ve been on Denosumab for around 18months. I had to have a six month break when ONJ set in. A stupid nurse gave me an injection a week after the tooth extraction and it caused the ONJ. She was reprimanded but that didn’t help me. Good luck with this really horrible, nasty outcome from just having a bone strengthening injection. I was on Letrozole and Ibrance. A month ago it changed to Exemestane and Everolimus with Denosumab injections once a month. I also take Adcal every day as my calcium levels were low.Best wishes

Cheryl

[Pbsoup]

I have been on Xgeva monthly for about 18 months.

Before I started I had a bunch of teeth pulled. (I have horrid teeth) there was a bit of a fight between my dentist and my then oncologist about whether or not I needed implants. Interesting the oncologist was pro waiting to start Xgeva while I got implants (which takes months to do due to healing time etc) but the dentist thought I should get started on Xgeva as soon as possible.

In the end I didn’t bother with the implants— I wanted to focus on cancer related treatment, although that was when my former oncologist’s nurse made the famous quip that I might end up wishing I had them when all of my organs fail and I’m no longer able to chew properly. This was only a few months after diagnosis so while pragmatic, it was not an image I wanted to focus on just then. 🙄 (One of the reasons she is my former oncologist)

As I do have dodgy teeth, I worry about ONC. Hearing everyone’s stories, I’m now wondering now if I should ask about having Xgeva less often. My new oncologist just gives it to me each month without comment.

[Corrina97 in reply to Pbsoup]

I only have mine every two month .Hard to know what's best really with oncologists having varying views and prescribing different intervals for the injections x

[Anita-B in reply to Corrina97]

I had mine every month over two years.

[Hidden in reply to Pbsoup]

Maybe it depends on the severity of your bone mets and age. 😕

[Corrina97 in reply to Hidden]

They were going to give me it every month but I felt really washed out after 1st injection so they onc said I could have it every other month. Might have something to do with age or severity but no one mentioned anything like that to me x

[Kellyonekanobe]

I’ve been on Xgeva for a little over a year. I asked my oncologist about it last week. She said it was really only an issue for people who had problems with or did not take very good care of their teeth. So not sure but it is a worry.

[Anita-B in reply to Kellyonekanobe]

I can only say what my Oncologist told me, I did not have any issues with my teeth and have as sways taken good care of them. So it is obviously different advice from different Oncologists makes it hard for us to make informed choices!!

[Kellyonekanobe in reply to Anita-B]

True that! Blessings to you💕

[Iwasborntodothis]

I think it’s disingenuous for them to saw this jaw problem is rare when they should be saying is that is rare so long as you have zero need for dental work. I have good teeth I go to the dentist twice a year and my cracked tooth and root canal issue has been a four month long several thousand dollar stressful ordeal. The dark side of me thinks they don’t say anything … never mind BUT I am going to ask my Doc next week for a serious discussion as to why I would consider taking it again.

[Kellyonekanobe in reply to Iwasborntodothis]

It’s your body. You have a right to listen to your body and do what you feel is right for you. Sending love and prayers.

[Iwasborntodothis in reply to Kellyonekanobe]

I apologize but this is getting under my skin and it has nothing to do with you lovely ladies

[Hidden in reply to Iwasborntodothis]

I am right there with you!!!!🤨😡😠

[Iwasborntodothis in reply to Hidden]

The nurse today told me that she was going to commit to being more clear about dental challenges with new users of the drug in their practice and recommend that their be a joint consultation with our dentists PRIOR to starting this drug so as to identify concerns ahead of time.I am off the drug until my gum heals around the remaining bone.