Bad tooth while taking Xgeva

[rpeacock]

I started taking Xgeva shot not long after being diagnosed with MBC last year in April Since then I have had a bad tooth that may need cut out or root canal done.My onc said they want me to go off of xgeva shot 6 months in advance of having tooth taken out, but if I couldn’t take the pain of tooth and had to have oral surgeon take it out or do root canal, my onc would just stop the xgeva shot. Now this worries me. They say your dental work will not heal if on the xgeva shot. I wonder if anyone can tell me anything about being off of the shot. Looking for answers. May God be with you everyone! Thank you, Robin

[Francesca10]

Hi

They usually don’t want invasive dental work done on xygeva because of risk of onj. You should be off a few months is usual advice. If you have to do it then don’t do the xygeva for as long as you can. I don’t know if it helps but if it can hold on for a while wait at least 3 months.

Good luck♥️

[MMMP]

Get your tooth fixed!! Nothing worse than a tooth ache. I’ve have had 2 root canal s with new crown s and never stopped my Xgeva. I was getting the shot monthly in the beginning now every 3 months. I do need to stay on top of my shots because it seems they can get forgotten about. Need to be your own advocate!!! Just make sure you have a good dentist!!!!

[kearnan in reply to MMMP]

More than one person who is getting Xgeva is told NOT to have any invasive dental work done while getting the injections. You may have been lucky and have not had any issues, but there is a reason why the oncos and pharmaceutical company specifically say NOT to have any invasive dental work done because of possible serious issues with ONJ. So I would not advise someone else to go ahead and get the work done anyway because she may have an serious issue arise. She, like me, may be getting the shot every month. A person needs to be their own advocate but not at the risk of taking a chance of having more serious issues arise and ignoring the advice of her onco and the pharmaceutical company warning. To me, a good dentist would NOT do any work if they know you are on this cancer drug UNTIL they speak directly to your onco themselves.

[kearnan]

I am on Verzenio and falsodex injections. At my last visit this month, I was told from the CT scan, they see two holes in my spine from the breast cancer so now my onco wants me to ge a new injection of Xgeva because of my bones. I had it for the first time this month at the same time I got my falsodex injections.

My onco did make a big thing out of telling me (bc when on Ibrance, my front tooth (veneer) broke off and I swallowed it or something and I had to get extensive dental work and no dentist wanted to work on me once they seen on form I had breast cancer so I had to get a note from my onco. That was finally taken care of.

But with this new med, she stressed that I cannot have any type of dental work done while on this med. She asked if I thought I was going to need to have any type of work done and I said no, I had it all done a few months ago. So she stressed that I cannot have any type of work done while getting this injection and if for whatever reason I need to get dental work done, I have to tell her first.

Something about a possible side effect with locked jaw or something so since she was so adamant about it, I figure there is a good reason and part of what is on the warning label.

[rpeacock in reply to kearnan]

Right. My Onc said while on the xgeva injection your dental work will NOT heal and can cause osteomecrosis of Jaw.

[rpeacock in reply to rpeacock]

And thank you for all the info Kearnan. This app has been so wonderful!

[kearnan in reply to rpeacock]

No problem.. I just find it unsettling when a person tells another person not to listen to what the onco told her and go ahead and get the dental work done.

[kearnan]

Call the manufacturer directly. I am sure there is a good and valid reason why you are not supposed to have the work done. That is a bit scary knowing now that if one is in pain with the teeth, that we are kind of stuck.

[rpeacock in reply to kearnan]

👍

[Klamato in reply to kearnan]

Sorry everyone who is on Xgeva injection! I have been on this drug injection for more than 3 years! I now have osteonecrosis of the jaw and have broken 2 femur bones in 18 months! This is a very dangerous drug since the side effects for me are worst than the advantages of Xgeva! There are many folks on this site who have endured many of the same side effects! I wouldn’t be convinced to take these injections! Terrible outcome for me personally!

[Buffwright in reply to Klamato]

Hi, I’m just starting treatment for ONJ following a couple of years on Xgeva and before that, Zometa. Did your oncologist put you on something new?

[Klamato in reply to Buffwright]

No, my oncologist didn’t put me on anything new! I did have 5 rounds of radiation to alleviate some hip pain, but I’m thinking I may have more bs my legs and back continue to be painful everyday! It is very difficult to do any walking, ie. store shopping etc. this whole thing really sucks but at least I continue to stay alive! I did get Covid a few weeks ago and that was bad, but I am well and will be getting a PET scan in September! Hopefully that will be stable and I will not have to change meds again! We all need to have faith that new development are coming out to save our lives from this ugly disease! God bless. Kathy, Syracuse, NY

[Selmac]

I had to go off xgeva, it was affecting my 4 implants and my jaws hurt all the time. My Oncologist told me a mIle walk a day works as well as an Xgeva shot. I'm saving a ton of money.

[rpeacock in reply to Selmac]

Get out of here! Your Oncologist said that? Last bill I saw before ins paid was over $9,000.00. That was just labs and xgeva shot. How does walking help?

[kearnan in reply to Selmac]

Confused. I can see the onco telling you to get off the xgeva because if your quality of life is suffering obviously from the implants and your jaw is hurting, so it does not make any sense to stay on it.

The minute my quality of life suffers from any med or shot, I am not doing it. But I cannot see how walking can take the place of the shots. I just had my first injection this month (already on verzenio and falsodex injections) because the CT scan showed two holes in my spine from the breast mets so I was advised I need to take this otherwise since the cancer is already there, it will make my bones very brittle. She also has me taking calcium supplements. First time I am taking any kind of supplement. My onco told me that if my bones become too brittle a simple fall I could break a hip. I am NOT thrilled about another injection, but I do not want my bones to become brittle. Does you onco have you take calcium supplements then to strengthen your bones?

Since mine originally started in my lungs, I can only walk so far bc I find it hard to breathe so I have to stop and rest for a while. I wish it were not in my lungs because I think walking would help me lose some much-needed weight and mentally feel better, but there is no point if every 10 minutes, I have to stop and rest.

So that proves that it does affect dental work even if you had invasive dental work in the past.

[Selmac in reply to kearnan]

I'm not as knowledgeable as a lot of people on here. I just know that my implants were hurting and my gums were receding to the point that my posts were showing. He said no more Xgeva and about walking. I have a degenerative joint disease. Before I got cancer in 2013 I had several surgeries including 2 hip replacements, a knee replacement and 2 back surgeries. Rods and screws are holding my lower back together. I have holes in my discs from this disease. My cancer spread to ribs, spine, shoulders and front of hips. I know I must be careful not to fall. Pain isn't any worse now than before. It is hard to get that walking in sometimes.

[kearnan in reply to Selmac]

Oh my goodness. I was terrified at first when I had they seen two holes in spine. God bless you for all you have been through. I could see where if it affects jaws and such where a person that has implants may suffer from taking that injection. Wow, you have been through so much already. So glad that you are not suffering from pain. It is hard enough to deal with the side effects, but it is not pain. Once pain starts, then for me, it will be a whole different ballgame. Glad that you are not suffering from pain.

[Klamato in reply to Selmac]

I can only tell you all that Xgeva injections caused me 2 broken femurs and osteonecrosis of the jaw! Those are the side effects from taking Xgeva for more than 3 years! Now I cannot take any of the bone shot bc of this happening! I only wish I could go back to getting my walk of 2 miles in as I used to! I have gained weight and I think losing pounds will help to alleviate some of this muscle and bone pain! I am on Weight Watchers now and will be doing some Yoga to see if that helps me! This crazy ugly disease causes so much discomfort, but I continue to be grateful that I’m still here fighting and enjoying my family and friends! Good luck to you and God bless! Kathy. Syracuse

[Selmac in reply to kearnan]

I do take calcium with vitamin d.

[kearnan in reply to Selmac]

I just started taking them. Do you take 500 mg;. or 1000 mg?

[Selmac in reply to kearnan]

I take 500

[Klamato in reply to Selmac]

You are smart! Walking does strengthen your bones! Stay away from Xgeva, I’ve suffered the break of 2 femur bones in 18 months! No one connected the dots for me and continued to give me the injections after the first break! I was never told that Xgeva caused the first break, Buyer beware! Never again!

[TammyCross in reply to Selmac]

It is two years later -- but I have ONJ around implants. The periodontist saw that, but no one seems to have gotten the connection. I do walking, exercise, didn't need that Xgeva that has started destroying my jaw.

[Selmac]

Oncologist told me walking builds up the bones. I haven't had an xgeva shot in over a year. I'm not saying this is the absolute truth, just what my Oncologist told me. Honestly, I think so much is just for the money they get. Also, maybe some people can't walk at all. All I know is I'm doing ok without it. He told me even if I stand and iron an hour or more it's good.

[rpeacock in reply to Selmac]

You know if I have to do a lot of chewing, my mouth just hurts, and it’s like all my teeth are just weak. If you don’t mind me asking, What’s your Oncologist name and where is he?

[kearnan in reply to Selmac]

Maybe the doctor told you that so that you would be doing something else in place and not worry about not having the injection. I don't think they just give these xgeva injections for the money. I have had been on Ibrance and falsodex injections. I hated the Ibrance and was only only for three cycles and had problems. So she put me on verzenio on the lowest dose (I could NOT handle the 150 mg. or 100 mg. twice daily).

The only reason she put me starting this month on the xgeva shot is because the most recent CT scan shows two holes in my spine from the breast cancer so. I am not thrilled about another injection as I already get falsodex injections but now that the cancer is also in the bone, I want them to stay as strong as possible. My breast cancer had originally spread to my lungs. I was happy that it was NOT the bones, but now it is.

Did you onco at least tell you that you needed to take calcium supplements with vitamin D that is supposed to help strengthen the bones. The last thing I want/need is a simple fall to turn into my hip breaking or my leg.

The shot is supposed to help my bones from becoming even more brittle now that the cancer has went there. I doubt she decided to prescribe it to me for the money but rather to prevent my bones from becoming even more brittle from the darn cancer that is now there. With how I feel already, I do not need any problems with my bones and the cancer weakening them. And considering its about $2,000 a shot once a month, there is fairly low compared to the Verzenio and Ibrance that I was on.

[Klamato in reply to kearnan]

Sorry to disagree, but after breaking 2 femur bone and recently diagnosed with osteonecrosis, Xgeva doesn’t do you any favors. The surgeon who recently repaired my femur told me that Xgeva makes the bone thicker but more brittle! I have since learned about several woman have stress fractures in the femur and jaw problems! The pain I have endured is absolutely the worst and I am presently on my 7th week of recovery with therapy and still in pain on a daily basis! This drug hasn’t done me any favors. I didn’t need to fall, my bone was in pain for 5 weeks and my onc told me to see the orthopedic surgeon and never associated the pain or break to the Xgeva drug and continued to administer it and after 18 months, more pain in my other leg and subsequent breaking. I was told by my team that “breaking femur was EXTREMELY RARE”. JUST NOT TRUE! I’m done! My cancer has remained stable, but my quality of life because of this drug, has been the real problem! Be your own advocate! I loved my onc and therefore I trusted what she said and meds she prescribed for me! I wil question EVERYTHING going forward! Good luck to you, considered being warned! Kathy

[Klamato in reply to Selmac]

Because of my femur breaks, I can’t walk very far without distress. Also have lung disorder so I’m short of breath with exertion! I was use to walking 2 miles everyday until this stupid cancer invaded my body! Now I’m dealing with excess weight and discomfort!! It is what it and I’m just grateful that I got out of the jaw pain after weeks of antibiotics. Xgeva did me in with 2 femur breaks and osteonecrosis of the jaw! I cannot take. ANY bone meds, just Vit D and calcium, that’s it! It’s okay, as long as I’m out of pain!

[Bubbles001]

Keep in mind that ONJ occurs in only about 5 percent of those on a bisphosphonate who have dental work. Also the drug has a half life of 11 years, so will continue to work even if you aren’t taking it. I have ONJ and had to stop a year ago and my bone Mets are still stable. Those with small jaws are more susceptible to ONJ because the blood flow is more easily interrupted during surgery, is my understanding.

[rpeacock in reply to Bubbles001]

Thank you so much! This has really been weighing on my mind.

[kearnan in reply to Bubbles001]

LOL...I immediately started to feel my jaw. I think I have an average jaw, not small. But as I was reading your response, my hands went to feel my jaw.

[Klamato in reply to kearnan]

My jaw is small and I have been diagnosed with osteonecrosis! Not pretty! Be warned! Kathy

[Selmac]

I don't know if I'm allowed to say his name on here. He d oes a lot of studying on breast cancer. He's with UPMC out of Pittsburgh, PA. Dr. William Ferri. Just moved one week ago to Myrtle Beach so I'll find out what my new Oncologist thinks. I'd go back to Dr Ferri. I loved him.

[rpeacock in reply to Selmac]

Ok Thank you.

[kearnan in reply to Selmac]

It's odd but even among oncologists they have varying ideas to how they treat certain issues with stage iv. But if I have any pain, I will stop it. To me it's all about quality of life. I just feel super super exhausted since I got it three weeks ago.

[Klamato in reply to kearnan]

Use your own head, because I trusted the system and I ended up with 2 femur breaks and osteonecrosis!! All caused by Xgeva injections! After the first break, no one investigated why and therefore continued me on Xgeva injection! 18 months later, I broke the 2nd femur; no fall, just spontaneously break! Live and learn, but suffering because of a lack of investigation! Good luck! Kathy

[JoyBe]

I had a experienced dentist inform me when he removed 2 of my teeth before I started my monthly Xgeva shots, that if I had any teeth removed after starting the shots there was a good chance my jaw would break!!

I was diagnosed in March 2018 when I was 59 with MBC in my bones, HER2 neg. with positive PR and ER.

Going off my Xgeva shots for me is not an option with a family history of rheumatoid arthritis and a bad knee.

I use drTungs Smart Floss which is soft and I have to floss after every single thing I eat. My dental appt. is next week for a filling that fell out and to look at a tooth that some sensitivity. I'm hoping it's just the sensitive gums from the Ibrance and Letrozle.

Because I sure am not going to ever come close to the tiniest risk of breaking my jaw.

I am not in pain and I don't plan on creating any situation for pain.

My suggestion is to take an extreme conservative approach and continue your research.

[rpeacock in reply to JoyBe]

Thank you for sharing your info. I have been and will continue my research!

[Geulah]

I went to see a dentist who isan expert in oncology,please do the same. They understand risks i volved and can advice you.

[rpeacock in reply to Geulah]

Thank you