ONJ, zometa, xgeva

[LisaT23]

Hi,

I did 2 months of zometa then switched to xgeva due to side effects of the zometa. I took xgeva for about a year and a half then had a small piece of exposed jaw bone. Oral surgeon said ONJ, onc said no more xgeva or any drug in it's class. Oral surgeon removed a large piece of upper jaw bone 4/23/19 (1.1 x 2.6 x3.3 cm). So far it is healing and did not affect my sinus thank god. I still have a hole in my gum a 5 weeks later that is healing . Oral surgeon says it will take time, and I will see him in mid June for a follow up.

Luckily the only tooth this cost me was my back upper molar, my wisdom teeth were removed when I was 16. the piece of upper jaw bone removed was big (1.1 x 2.6 x3.3 cm) but it was where the back molar, wisdom, and behind that. We were worried the sinus might open into mouth and be a big problem, with food and drink able to go in. But after the DR came out of surgery he said he didn't even see the sinus!! Now he says the hole is a "blind hole" not opening anywhere else, and will take time to heal. I have to rinse every time I eat, and he gave me a syringe to squirt water gently, but it seems to be getting smaller.

I am not sure if the bone will grow back, but as long as the gum fills in it will be fine. You can't tell by looking at me, it did not affect my cheek bone. If I press on my cheeks it feels a little more hollow?? He said that I would never be able to do an implant, but could wear a partial denture once it heals.

The tooth extraction was covered by dental and the jaw debridement was covered by my medical insurance.

It seems that ONJ is alot more common than they say. Oral surgeon said that zometa stays in your body up to 11 years, while xgeva uas a half life of 3 months.

Lisa

[Francesca10]

Hi Lisa

Sorry you are going through this but thank God no face altering affects. The fact the sinuses were untouched is so positive. 🙏🏻🙏🏻🙏🏻 For speedy recovery.♥️

[LisaT23 in reply to Francesca10]

Hi,

Thanks, we were afraid of the sinus, in the xray before the surgery it looked like it might be involved. I asked the DR about it twice while I was waking up. He said "didn't even see it, didn't go looking for it, but didn't even see it" sounded like the best outcome.

Praying for the tooth in front of the hole.

Lisa

[Red71 in reply to LisaT23]

He sounds like a good guy! I like his “didn’t even go looking for it” reply. Doing what you need to do but not anymore sounds like good policy. Keeping my fingers crossed that everything will fill in and it will feel more normal. I too worry about the side effects of Zometa since I have some TMJ from a tooth removal a year before my diagnosis.

Elaine

[LisaT23 in reply to Red71]

Hi,

The oral surgeon is great. If he had looked for the sinus it stood a bigger risk of rupturing. He was even the head of Oral & Maxofacial surgery in my hospital before he went private! He has written many articles and lectures on "bisphosphate related ONJ". There were over 14 student/doctors that I saw before I went under that came to observe.I am on Long Island, NY if anyone needs a recommendation.

Thanks,

Lisa

[Francesca10 in reply to LisaT23]

Good to know because I am in bayside queens.

[LisaT23 in reply to Francesca10]

Hi,

My surgery was at Long Island Jewish! Right next door to you! The surgeon is Dr Salvatore Ruggiero and he is the best! He also goes to Stony Brook and has a second office out that way.

Thanks,

Lisa

[SoCalLady]

So no more xegva, etc. Did they at least recommend calcium and Vitamin D (at least 5,000) or any thing else for your bones? Also, regarding your other post re markers, which I also replied), I see you are in the New York area. There are nine centers in the area that are involved in the Ribociclib trial. Lucky you!

[LisaT23 in reply to SoCalLady]

Hi So Cal Lady,

I replied in the other thread as well. That is the study, with my ONC listed. The problem is that the first exclusion is "Prior selective estrogen receptor down-regulator use (SERD), including fulvestrant" and I am currently on fulvestrant.

My calsium is already high so I have been told only "regular calcium",of which I get alot and vit D.

Thanks,

Lisa

[SoCalLady in reply to LisaT23]

Oh, that's right. I've not been on Faslodex yet, just Ribociclib & Letrozole, so it was the perfect trial for me, but unfortunately, I'm in California. Wish they had some kind of cooperative arrangement by invitation. I've heard some trials will do that, particularly since I'm already on a trial with Novartis for Ribociclib & Letrozole. I mentioned Vitamin 5,000 because my dentist takes it who just pulled a cracked tooth for me. He feels it helps the immune system also. Let us know how your markers are after June 12th and what is the game plan. Take care.

[PJBinMI]

I'm sorry that you developed ONJ but it sounds as though you've done very well given that! Alot of oncs are not prescribing Zometa or Xgeva on a monthly basis any more. I'm a long timer with bone mets, denovo in 2004, and only had monthly Zometa until the 2004 San Antonio Breast Cancer Symposium that December had presentations on ONJ and it become much more widely known as a risk. I got Zometa every other month a few times and then switched to every 3 months. As soon as Xgeva was FDA approved, I switched to that because I am allergic to Zometa and had to have alot of extra stuff due to that--half dose, longer infusion time, IV benedryl and hydrocortison pre-treatment. In around 2013 I had to have non-cancer related back surgery and the surgeon found my bones to be like bones with osteoporosis so I was off the bone meds for a few years and now am back on Xgeva. A friend of mine had ONJ and a dental school oral surgeon suggested she use Arm and Hammer Peroxicare toothpaste and original flavor Listerine to rinse, to help prevent infections in her mouth, so I have superstititously use those. I have not seen statistics about how preventant ONJ is and it does seem to be another of those things that is highly individual. Frustrating! No known way to absolutely prevent it, so far. But these bone drugs have really been game changers for those of us with bone mets. Before them, bone mets would cause multiple fractures which would lead to becoming bed ridden which led to pneumonia and death. Compared to that, ONJ doesn't sound quite so bad, but it is still one of the nastiest side effects we can face. Lisa, it sounds as though you have a really great dental team! I hope your mouth will heal well and that this will turn out to be a one time occurance.

[LisaT23]

Hi PJBinMI,

I wonder if I was allergic to the Zometa. I did 2 full then 1/2 doses and each time I would get a fever over 103 that lasted at least 5 days. That is why I switched to Xgeva.

My oral surgeon says these drugs are a double edged sword, balancing the risk vs the benefit. He also says that ONJ is more common than we are warned. Zometa stays in your system for up to 11 years, so stopping it for him to do something does not make sense to him. Xgeva has a 1/2 life of 3 months, so he would rather we take that and just go 3 months without it before he does something. He says it is much easier to control.

Both the oral surgeon and my ONC say I will probably never be put on these meds again, (unless absolutely needed).

I am glad I found him, the oral surgeon I had before recommended him, said he was " the man to go to for this. He had attended lectures and trained under him."

I am very happy with my "team".

Just hoping it heals and I never have to do THIS again though.

Thanks,

Lisa

[Selmac]

Lisa, I was on xgeva and had to stop. I have 4 implants and my gums started receding and I could see one post. My jaws hurt almost all the time. My Oncologist told me walking a mile s day is just as good as taking an xgeva shot. I haven't had any horrible problems from not taking it and I've been off of it over a year.

[theresac1]

Sorry to hear about your experience! I was so hesitant to start Zometa. I have been on Zometa for about 8 months? I have had major procedures done to my teeth, from root canals to an implant. The fact that it stays in our system for such a long time worries me. I wish you all the best for a full recovery and bone growth!

[NPmary]

Thanks for the information. I'm sorry this happened to you. Wish you comfort and healing ♥️