XGEVA and ONJ

[spencoid2]

I finished 10 cycles of doxytaxel and got XGEVA several times. The last two it was discontinued because I reported minor oddities in my teeth. These have gotten a little worse. I will be seeing my dentist but not for about a month.

Questions, now that doxy is done (for now) do I still need the XGEVA or should I not worry about it?

I am having some inflammation and recession of some of my gums in a couple of teeth. There is very minor pain and at least one tooth in the area seems a little loose. Does this sound like the beginning of ONJ? Does it usually progress once it has started?

It there anything to do to prevent progression while it is still minor if this is what I have?

[rsgdmd]

Are you on ADT? Do you have bone mets? Osteoporosis? Osteopenia? Do you have a history of any gingivitis or periodontal (gum) disease? What you describe sounds more like gum disease than ONJ, though need a dentist to look at you. ADT greatly increases the risk of periodontal disease, which comes with inflammation of the gums and loss of bone support for the teeth (& loosening of the teeth).

[spencoid2 in reply to rsgdmd]

My MO wanted me to be checked by a dentist because of the ONJ side effect of Xgeva. I currently do not have osteopenia or porosis. I have had an orchiectomy so not on chemical ADT. Not doing any secondary like aberaterone either as it was determined that it was not working? I do have bone mets including one that is still growing. Do not have a history of periodontal disease. Gum recession last time (that awful pokey test) was only "bad" in a few places and not terrible, forget the numbers which fly by so fast, but dentist was not concerned.

I could not get an appointment locally for months and we are going to Seattle on the way to Paris so will see our "former" dentist there who had no problem fitting me in on our schedule. He is a fabulous dentist and we only (In Edmonds where we used to have a second home) wish we could get him to move here.

[rsgdmd in reply to spencoid2]

While you don't take any meds, your surgery effectively makes you on ADT for life. It's the lack of testosterone that's the issue. Good that you are getting checked out.

[spencoid2 in reply to rsgdmd]

what meds are you referring to? xgeva is on hold and i don't know if i need it anymore if not doing chemo? bones are fine according to last bone scan. i am taking prednesone and the rest of my :meds" are things like vit b and prophylaxis for UTIs. The rest are various supplements and not a lot of them. I am also taking ivermectin without the approval by my MO but also his saying that he can not see it doing any harm. will be interesting to see what my PSA is in two months once the effects of chemo have stabilized.

[rsgdmd in reply to spencoid2]

Your surgery means you don't need Lupron, Firmigon, etc. That's the meds I meant. Chemo isn't the reason for Xgeva; no testosterone is why you might need it.

[spencoid2 in reply to rsgdmd]

funny but it was never suggested until i started chemo unless i am remembering wrong which is entirely possible.

[Scoofer33]

I was advised of a 1.8 percent chance of having problems with Xgeva, but was told the benefits far outweighed the potential for bad. I'm certainly no mathematician but, unfortunately, if you are in that 1.8 percentile your chances of having problems is 100 percent.

I started waiving Xgeva injections when my tongue became painful from something scraping against it. One oral surgeon ground down either a tooth or bone protrusion to rescue my tongue. Another oral surgeon understood what was really happening and removed the lingual side of my left jaw. He hardly had to wiggle it back and forth before the whole thing came out.

I use a Waterpik and floss and also bought an elite toothbrush that brushes 10 times better than i could. I gargle with a prescription mouthwash to deal with the bacteria which could give me severe Halitosis. I have my teeth cleaned quarterly. I'm not a doctor but I say if you're on Xgeva and have pain in your mouth get a team of dentist type specialists to help you retain your teeth and or jaw.

Best of luck, my friend. Some would say I have not written with the correct amount of sympathy and concern. They may be right, however, I would like you to take this as seriously as you seem to already be. It is not a fun condition to deal with. But please proceed without fear. I only want to give you important info from one who suffers.

[spencoid2]

thanks for the reply. sounds perfectly awful. i hope i do not need to go through with that.