xgeva

[Trish]

I have had two injections of this drug. Is anyone experiencing tooth pain so soon after starting treatment

[nonna70]

I have been taking Xgeva for 8 months with no dental side effects. I think you should see your dentist right away and be checked out.

[Pachira]

it took 5 years before I got osteonecrosis. It’s a very very strong drug. When I came off it the end plate is n my spine collapsed and I have 2 compression fractures. You have to do your own research but though it saves the bone ultimately you can end up with fractures to the femur . I did read (too late for me) that if you started in Zometa then progressed to Xgeva, you could return to Zometa. I can’t because of the ONJ. Your oral surgeon will advise you. Maybe I’d have been in worse shape without Xgeva. The problem is the doctors gave no answers if you get onj or fractures. Sorry if I’m not being very articulate. Good luck in your research. Chris

[Bunny50]

Hi Trish,The pain might indicate you have a sensibity to this drug. In my case, it took about 6 months until I got osteonecrosis. It was a nasty experience but I got rid of it. Onco wanted to put me back on it but I refused. Ofcourse, every case is different and it doesn't mean you'll get osteonecrosis of the jaw but know this: ONJ is way more frequent than doctors say. I know this for a fact.

[bikebabe]

Go to dentist to get checked out again. Assume you had precheck before going on xgeva. you tend to get problems when you have an extraction or procedures involving trauma to bone. I’ve been on it (monthly) for 3 yrs and I’m hyper nervous to any sign of a problem as My mouth is full of gaps, very old crowns (35 yrs) and large fillings and a I had a jawbone infection two year before cancer . I upped my dental hygiene massively by using interdental sticks, elec toothbrush with recommended technique and most importantly a high strength fluride toothpaste (prescription only), My teeth do hurt from time to time in same places but this tends to be temporary ie two days. And so far I’ve not needed any dental treatment.

[Warrior77]

I have been on xgeva for about a year with no problems. It’s done wonders for my bones. I too have extensive dental work that was all done before my cancer metastasized, I work very closely with my dentist and periodontist to make sure everything stays in order in my mouth. I also got cleared by my dentist before starting xgeva, so if you haven’t discussed it with him/her yet, I would definitely schedule an appointment so he can be part of your care plan. It takes a village!

[Ycats277]

no I did not have any tooth pain until you mentioned it. I would have that check at Dentist. What I do have is my hair my eyebrows those things were affected majorly. And I know it’s from that because I had to haul the treatment for dental procedure and my eyebrows started growing back in and some strange stray hairs I don’t miss .

[Photo-Bug]

I have been on it for years with no problems except my bone density is now normal.

[Suite1000]

This is one of the many reasons I have refused (for now) bisphosphonates. My bones are healing on their own. I don't believe this treatment is one size fits all, which is the position at my oncology clinic. I am reserving this treatment until if/when I really need it.

I am currently 18 months post diagnosis. My bones have healed amazingly well with an AI and

Ibrance.

[RNwithMBCsince2013]

Hi....I relieved my password to talk to you....

Is it constant gnawing pain? I'm betting it's in the lower jaw behind the last molar?

Gnawing pain is the first sign of ONJ....

Sadly your regular dentist and likely your oncologist will not know much about ONJ....

I will share this your tube by Dr Robert Marx....he rediscovered this side affect....

In the video if I shared the correct one....he explains which antibiotics you need to start on...

Take the video to any doctor you can get into now...

Maybe with early intervention....ie antibiotics....you can stop the progress of ONJ?

I started the fb group for ONJ many years ago...

Rinsing with salt water can't hurt right now...

Doctors will unfortunately likely dismiss you right now...."its so rare" " there's no way you can have it"

The fb group is

Living with Osteonecrosis of Jaw

There are other good video s in files there

[RNwithMBCsince2013]

Ohh the video....youtu.be/T154sGspn-M?si=YXE...(Not working as expected?)

[TammyCross in reply to RNwithMBCsince2013]

Oh, that is something. They said they couldn't do any reconstruction after I had dead jaw bone removed (with teeth attached). He said they could do it at the time, with titanium. I am on my second partial. The first one was leaning too hard on the adjacent teeth which had no bone on one side and damaging them. This one actually supports them and I have to keep it in all day and when chewing.

This endodentist that I am now seeing said that I will eventually lose additional teeth, that my remaining jaw bone is thin.

No one knows how long Xgeva stays in your system. My sense was about 8 months. This endo said it is years; a very strong drug. So I gather from what he said that it is still thinning my jaw bone two years later. Or maybe that is just me?

[TammyCross]

It seems likely that maybe you have an independent dental issue, not immediate ONJ, BUT you must get that addressed right away, and I would stop the Xgeva. I wish I had stopped it sooner. It was really helpful with my bone mets, but...stayed on it too long, after the bone mets were resolved.

Now they will not let me go back on it. They act as though the ONJ is a permanent condition, or ongoing. The Other Chris.

[Gramat]

YES 100%. I have been having injections every 6 months for the past 4 years and it ALWAYS happens to me three days after injection. I was checked at the Royal Marsden two days ago, had Jae X-ray and all was okay. Many patients complain of the same thing