Xgeva
Has anybody had their Oncologist say ... - SHARE Metastatic ...
Has anybody had their Oncologist say that Xgeva doesn’t cause oral problems? I have heard a lot of bad stuff about Xgeva that’s not right!
Written by
EvaL
To view profiles and participate in discussions please or .
Read more about...
15 Replies
•
It has rare side effects of jaw bone problems so my doc constantly asks about my mouth and I had to tell my dentist about the drug...it’s odd that they would say that as it’s even on the commercials for Prolia on tv which is just a lower dose of the same drug
When I asked my oncologist about all of the side effects of Xgeva, including oral ones, thigh bone fractures, etc., she said she has given out thousands of doses and did not have patients with those. I do not believe that statement at all and I have fought going on it because of all the side effects I read about. I just think our doctors should tell us the truth.
Like I said my Oncologist basically said the same thing. I have also been visiting with more dentist and they have been stating the opposite. Now I have just went through oral surgery which the doctor removed a bone in the top pallet of my mouth that was so large it left a hole in my sinus cavity. I also lost 4 teeth. Yes they did say after I was already taking the shot, it can delay healing when you have work completed on teeth but just not have the shot for a little while and it will be fine.
I really believe more needs to be said about Xgeva when the Oncologist starts to explain it to their patient because if I would have known more I would not have taken it.
I am so sorry you are going through all of this. I have tried to get answers as to why Xgeva causes these oral problems as well as possibly fractures when it is supposed to help your bones, but have not been able to get answers. My doctor keeps pushing me to go on it and gets irritated with me when I tell her I don't want to.
So I agree. In the past it has been shown that Vitamin D and Calcium is good for bones. I really believe it should have been explained more because I was already having a few issues with my teeth so I would have said no.
I asked my doctor yesterday about the Vitamin D and Calcium as I have been taking both of those for the past several months. She said they do not help stop fractures to the bones from cancer but that Xgeva would. She did say before I would go on it that I would need to have clearance from a dentist and any needed dental work done. I also have read that people who already had dental issues would have a greater risk of issues on Xgeva. Your doctor should have explained all of this to you.
Sounds as if you have a good Oncologist because that’s really what should be said.
She has great credentials, but I am not keen on her personality. It is good she told me about the ONJ, but I still am disappointed if she sugarcoated the other side effects.
I'm a long timer with MB C, bone mets and have been on bone meds (first Zometa, now Xgeva) for almost 17 years. When I was first diagnosed, the osteonecrosis of the jaw side effect was not well known and I had invasive dental work without stopping the Zometa, which I was getting every month at the time. I have not gotten ONJ. I have met only a few metsters with ONJ and I would not have guessed that they had it if they hadn't told me. The incidence of ONJ is not high among those of us on these meds. I believe that the usual recommendation is for us to be off these meds for 3 months before and 3 months after any invasive dental work. Of course it isn't always possible to wait three months........ One friend who did develop ONJ, saw an oral surgeon at a dental school and when she told him that she kept getting infections, he suggested she brush her teeth with Arm and Hammer Peroxicare tooth paste and rinse her mouth with original formula Listerine. She stopped getting infections once she did that. So for a long time I used those products, hoping it might help prevent ONJ. Kinda a superstitious thing! I believe that the problems these bone mets drugs help prevent are alot worse than any risk of ONJ! I hope you can find peace within yourself with whatever you decide.
Well I started my Chemotherapy December 2015. Put on Xgeva shortly after told it was good for my bones since cancer was in my bones. Didn’t really get an in-depth explanation. So then I needed a tooth pulled in 2017, I was off the Xgeva a little before and a little after. I go to my dentist every six months for cleaning and check ups. They were a little concerned about the area the tooth was pulled but never overly until August 2020. The area basically never healed but the X-rays in the dentist office never showed it. Now it not only had so much dead tissue but a bone. When taking the bone out it left a hole in my sinus cavity. I am telling everyone this because it has really turned my life upside down.
Thank you for the information about Zometa and Xgeva. Also, wow 17 years is a long time. I would love to be a long timer like that. I like the advice about the toothpaste and mouthwash, too. About the side effects I am worried about, I just wanted my doctor to be honest with me. I don't believe that not one of her patients has ever had any of the side effects I am worried about. I am very new to MBC, having been diagnosed in October. So far I have had 2 small bone mets and am feeling really good on Ibrance and Letrozole so I am waiting a bit to decide to take anything else right now. My doctor has said if I really wanted to, I could do shots twice a year. I may try that.
I've been on it monthly for 7 years. No problems.
That is good to know! Thank you. I hope you continue to do well on it.
I have been on Zometa and Exemestane since 2013. I was told as the cancer dies off in the bones that the Zometa helps fill in the bone so that your bones are not like Swiss cheese with holes. January 2020 one of my teeth cracked. The periodontist referred me to an oral surgeon to pull the tooth. The oral surgeon sent me back to the periodontist to have a root canal. The oral surgeon said that I should do everything I could to preserve the tooth. I thought you could pull a tooth, put a stitch in and it would heal. The oral surgeon explained after a tooth is pulled that the hole in the bone where the roots were may not heal. Osteonecrosis of the jaw, ONJ, can occur which is where the jaw bone dies. Then you would have to have months of antibiotics and surgery to remove the dead bone. I think you could lose other teeth and have disfigurement too. By the way the oncologist said it was fine to have the tooth pulled. Thank goodness I had an experienced oral surgeon that said no.
You did the right thing to not have the tooth pulled. Hope everything is good for you. I have now lost 4 more of my teeth and a lot of dead tissue cleaned out.
