Dental Health

[rogerandme]

Just saw the dentist this morning took xrays one of tooth bone is growng and also saw white spots on both sides of my jaw... Has anyone else started having dental issues due to prsotate cancer treatment...on lupron and xtandi 4 years now

[GP24]

White spots on both sides of the jaw is probably osteonecrosis of the jaw (ONJ) caused by bisphosphonates like Denosumab. It is a very bad side effect. Major clinics have specialists to treat this.

[Kaliber]

about four or so years of zometa , I started having mandible pains. My palliative care doctor made me get a bone scan of my mandible etc.

My mandible was , more or less , ok with no cracks or bone fractures / deterioration ( zometa famous for that ) but she ( my dentist ) , showed me smallish, rice grained sized ( this dental X-ray 1:1 ) spots peppered all over my skull, heavier in my nasal passages, mandible jammed with them etc. said she had never seen those before. I needed to follow up on those soon. I explained that I expected them because I had stage 4 aPCa that had spread everywhere , including my skull. Everywhere there was bone.

Nothing much has come of them 6 1/4 years in, except 60 infusions of zometa had made my teeth super brittle and several of my teeth have fractured into pieces. I capped a couple over time but those only last 3 / 4 months and my OFP ( out of pocket ) on my dental plan was several hundred each. It just wasn’t worth it , I can still eat painlessly just fine, no point to keep throwing money at it since I’m WAY past my expiration date. I’ll spend that money on QOL trips instead where I’ll get some return for it. Yes I look like a rather toothless dowdy ole fart with a toothless smile . If you are vain, you’d probably maintain those differently.

❤️❤️❤️

[rogerandme in reply to Kaliber]

Kaliber, I like your attitude going to Puerto Vallarta in April and Portugal in September...I have no pain so everyday I can live to my fullest I will take it..Surprised my dentist claimed to not know what it was....as a dentist I am sure she has seen mouth or bone cancer once or twice...

[Kaliber in reply to rogerandme]

my dentist looks young enough to be my granddaughter lol. With me , she gained some more knowledge at least.

Yessir buddy, work the heck out of that pain free era, boy those opportunities seem to fly by. Still you prolly got lots more time left seems like. I wish I had taken advantage of that opportunity better. Still, I can still get out and go, albeit a bit more difficult Rotflol.

Make sure to post lotsa pictures and info , sounds wonderful buddy.

❤️❤️❤️

[swwags in reply to Kaliber]

I hope you’ll still travel my brother.

[Kaliber in reply to swwags]

I hope so too buddy … I will if I’m able for sure.

❤️❤️❤️

[CountryJoe in reply to Kaliber]

Heh Kaliber. I always love your posts and am amazed at all you've been through. A recent bone scan with contrast (not Pet scan) reported "uptake" on the frontal part and both sides of my skull. Quite a frightening discovery. How common is this and what is the treatment? I am currently only on monthly Zoladex.

[Kaliber in reply to CountryJoe]

Hi country Joe ….

I’m not a doctor and don’t play one on TV ( lol ) but all of my scans showed some activity around both mandible ends and up my nasal cavities a bit, but , in my case, nothing much has come from them that I’m aware of in 6.25 years. If you have the spread / load of Mets anything like I do , it might not be too surprising. Your radiologist and / or oncologist is the best resource for that information. If those are superficial and you are on an effective ADT treatment, your ADT should put those Mets asleep . I wouldn’t stress too much buddy , until you get a detailed DX from one of your specialists team. Treatment wise , radiation is usually what we see as the remedy, if putting them to sleep didn’t help.

I have metastatic skin cancer as well and had three surgeries on the same location on my forehead, it went all the way to the bone. I posted some gruesome pictures back a few years ago. Xtandi has also penetrated my B-B barrier and caused ischemic , small vessel, white matter damage … and tharze nu nu nu nu nudd’in wrong with me … rotflol.

It’s just IMHO but you can probably relax until your you hear differently from that specialist.

Love ya buddy

❤️❤️❤️

[rogerandme in reply to Kaliber]

Thank you good insight… worrying doesn’t change a thing so why do it… thanks for your input….

[Kaliber in reply to rogerandme]

❤️❤️❤️

[CountryJoe in reply to Kaliber]

Thank you so much, my brother and friend. I am in the public health system of El Salvador, so I take whatever is offered, and it's usually basic. But you have helped to calm my nerves a bit. You are a light in this dark world. Kaliber. Stay strong.

[Kaliber in reply to CountryJoe]

❤️❤️❤️

[mrscruffy]

I have had poor tooth quality all my life. After a few years on Lupron/Zytiga they began to weaken. Had top set removed and went to dentures

[MooseJawg]

Just finished a series of dental appointments as ADT (Lupron/Enza) destroyed most of my teeth. Although they were never great to begin with, in the last year or so periodontal disease and teeth breaking and shattering. Not sure what preventative steps would have or could have had. Age 75

[ctflatlander]

I developed bone growth on one side of jaw due to Xgeva. I stopped Xgeva and the growth took about 8 months to disappear. Tissue grew under the exposed bone and eventually it released with the help of my tongue, Bob

[DiverDownCA]

My loved one developed this after Xgeva.No longer on it and saw a osteonecrosis dental specialist.

Gratefully we discovered it early and so it was not advanced and easy to treat. Oncologist definitely stopped Xgeva. Make sure and tell your oncologist.

It happens to about 1 and 100 on xgeva or other high-dose bone strengthener.

It's important to go to a dental specialist that understands it as many do not.

It can become quite serious and eat away the whole jawbone if it gets advanced.

So seeing a specialist is of utmost importance.

I'm a dental hygienist and in the early 2000's I was going to a lot of continuing education with periodontist and oral surgeons.

They were shaking in their shoes as patients were showing up with this with entire jawbones eaten away and did not know why.

Later it was discovered that it was a side effect of the bisphosphonates at high doses in cancer patients.

So my advice is to get it checked by a oncology dental specialist that understands osteonecrosis of the jaw.

Like I said it was a simple fix for my loved one caught early.

But unfortunately can be devastating if not.

[Splash1953]

Xgivia was added to my treatments to keep my bones strong. I developed a very bad case of necrosis of my left jaw which put me in the hospital for a week about two years ago. Since then I have an exposed dead jaw bone with no gum on it. I have had several infections since my hospital stay which heavy duty antibiotics do the trick. I have lost 3, implants and now have false teeth covering that area. I see the oral surgeon at the hospital every 4 months and he takes a panoramic X-ray . He looks at the X-ray and tells me there is nothing he can do until and if my jaw bone breaks. He says you better pray that doesn’t happen because the operation is disfiguring. I try to eat my meals on the right side of my mouth . Just another side effect you have to deal with and accept. Were you given a bone strengthening drug like Xgivia ? If so this could be the cause of your issue.

[leo2634]

I feel you brother had oral surgery four times to remove bone fragments that were growing wound up losing All of my top teeth and not being able to get implants because of all the damage Xgeva did to me over about a year so had to settle for an upper plate. Once my Doctor stopped the Xgeva everything subsided. Never give up never surrender Leo

[j-o-h-n]

Regarding our Pca and Dentition . I wish to quote William Bendix who played "Riley" in the "Life of Riley".

Quote: "What a fucking revolting development this is"?

Good Luck, Good Health and Good Humor.

j-o-h-n