Jaw necrosis. Check up. Better safe t... - Advanced Prostate...

Advanced Prostate Cancer

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Jaw necrosis. Check up. Better safe than sorry. Thought I would get away with dying from my PC before I would need to be at a dentist lol.

CAMPSOUPS profile image
77 Replies

4 plus years on Zometa so getting a check up for necrosis to be on the safe side.

One of the members of my oncology team who I see about every other appointment finally for about the 3rd time bringing it up with me I agreed best to get a dental check for any signs of jaw necrosis. So delayed my Zometa infusion and I’ll get in to the dentist. Interestingly or importantly, she told me jaw necrosis does not have pain symptoms. It can be developing without pain. The rest after development we've heard here on the forum.

There are a lot of things I don’t want to add to my PC (colds, flu, covid, accidents, cardio, etc,) so honestly just letting necrosis possibly happen rather than catch it if its there seems a lot better to me with a little more thought. Its a nightmare to treat once its in full development in most cases it seems. Anyway, my musings for now lol.

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CAMPSOUPS
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77 Replies
Carlosbach profile image
Carlosbach

Do the SE's never end?

Hopefully you don't have any loss of blood to the jawbone, or you that you caught it in time to head off any serious complications.

Thanks for the head's up. I have had an increase in dental issues over the last couple of years, but I've attributed that to aging. I'll bring up Necrosis at my next dental appointment. I sure don't want to end up sucking progresso soups through a straw.

Take care Camps

CAMPSOUPS profile image
CAMPSOUPS in reply to Carlosbach

Luckily we don't suspect necrosis just making sure by getting dental check.

Yea if on Zometa as a reminder you don't want it in your system if you are going to have any serious at and below the gumline dental work and prior to dental work need to have x-rays etc. to make sure no necrosis is present.

treedown profile image
treedown

Its a scary thought. I have mentioned bone strengtheners to my MO but he just said they are controversial and I left it at that. I assumed (maybe wrongfully so) that its just not time yet.

CAMPSOUPS profile image
CAMPSOUPS in reply to treedown

Yea not for you really. I was full of bone mets at dx from skull to ankles so almost a no brainer. I'll never know if my bones haven't crumbled due to Zometa or just the nature of my mets. I have had a couple falls and luckily no breakage.

treedown profile image
treedown in reply to CAMPSOUPS

That makes sense. Here's do it staying the way it is for a very long time and clean bill of health from the dentist 🍷🍷

CAMPSOUPS profile image
CAMPSOUPS in reply to treedown

Thanks tree!

I have a Newcastle in the fridge just for a celebration of any good news lol.

treedown profile image
treedown in reply to CAMPSOUPS

Correction🍺🍺

CAMPSOUPS profile image
CAMPSOUPS in reply to treedown

Ha, ha. Good one. But no problem with some bare foot merlot cheap wine my wife has either.

treedown profile image
treedown in reply to CAMPSOUPS

Is it, wine before beer makes you feel qu... - bad, beer before wine make you feel fine? I fluctuate back and forth. Drink a bit more non-alcoholic IPA now. Only like 50 calories with just enough flavor to make it worth my time.

Carlosbach profile image
Carlosbach in reply to treedown

I've given up booze, it seemed to be hitting me harder. I don't mind a buzz, but sometimes I would drink a couple of beers or a shot and feel drunk right away. Do any of you have that problem?

CAMPSOUPS profile image
CAMPSOUPS in reply to Carlosbach

Yea I still think there will be some fun, some good taste etc. with some booze but about once or twice a year is all I muster up for having a drink.

I actually don't feel much from alcohol anymore. And as rundown, compromised as my body is I don't want anything to do with additional discomfort or stress on my body---hangover of any even minor magnitude lol.

Also once I start drinking I loose interest in various things. Cannabis keeps my interest and abilities going pretty much.

Carlosbach profile image
Carlosbach in reply to CAMPSOUPS

I hear you. I have enough of a problem keeping my head straight. Unless I'm having a really bad day, I stay clean (except for all the stuff my docs have me taking) until about 8:30 or 9 when i will take 1/2 of a gummy (10 CBDmg, 5 THCmg).

mrscruffy profile image
mrscruffy in reply to CAMPSOUPS

I drink like a college kid about once a month and 2 day hangovers. When it comes to whiskey I can't say no to Pappy Van Winkle

treedown profile image
treedown in reply to Carlosbach

I have made that realization recently as well after a couple nights with the boys. I am now a lite weight. It's ok.

Carlosbach profile image
Carlosbach in reply to treedown

My mother-in-law was such a lightweight that she was known as 1-beer Betty. Trying to come up with a similar moniker for you and camps

treedown profile image
treedown in reply to Carlosbach

Good luck with that! I have been on ADT for a over year so 1 beer Betty kind of fits :)

Carlosbach profile image
Carlosbach in reply to treedown

NO! Say it isn't so, don't be like Betty, you wouldn't like it very much. Maybe try the handle of 50 (per)cent

treedown profile image
treedown in reply to Carlosbach

I haven't met the lady but I'll take your word for it and retract my consent. 2 beer fall down treedown?

CAMPSOUPS profile image
CAMPSOUPS in reply to treedown

Retract consent funny.

I'll go campsoups 1 beer wonder except he takes 2 beers.

For a minute I thought we were in the fog brain post. I guess that makes sense lol.

treedown profile image
treedown in reply to CAMPSOUPS

:). Aren't we?

CAMPSOUPS profile image
CAMPSOUPS in reply to treedown

Just a minute I think I'll have the answer. I wrote it down somewhere.

Carlosbach profile image
Carlosbach in reply to CAMPSOUPS

Sounds like you still have some testosterone camps

CAMPSOUPS profile image
CAMPSOUPS in reply to Carlosbach

A minor surge up to 2ng/l maybe but its gone again. Still dont know where I am.

Carlosbach profile image
Carlosbach in reply to treedown

1-beer timmbeerrr?

treedown profile image
treedown in reply to Carlosbach

It's getting there. How about 1 beer champ his name is camp - soups.

Carlosbach profile image
Carlosbach in reply to treedown

I'm thinking Twinpak Camps

treedown profile image
treedown in reply to Carlosbach

Kaliber should be real easy compared to these :)

Carlosbach profile image
Carlosbach in reply to treedown

Remember, we're talking about the guy that broke the Tesla tequila bottle...

treedown profile image
treedown in reply to Carlosbach

That's right I remember. Ouch!

CAMPSOUPS profile image
CAMPSOUPS in reply to Carlosbach

Yea so I was trying to invent a new name for tequila that would match a new name for kal like kali and tequileee. However couldn't come up with anything catchy to match lol.

Carlosbach profile image
Carlosbach in reply to CAMPSOUPS

Maybe PeeWee Kalman?

TEQUILA!

via GIPHY

CAMPSOUPS profile image
CAMPSOUPS in reply to Carlosbach

We're all wee in the pee here.

mrscruffy profile image
mrscruffy

I had all my upper teeth removed before starting Zometa. Never had good teeth and knocked one out with friends so out they came

CAMPSOUPS profile image
CAMPSOUPS in reply to mrscruffy

Me too as far as issues but have only one missing tooth. Other teeth are missing chunks. I went into this with bad dental condition but luckily no pain or infections. Chunks missing from molars. Maybe some teeth have shifted too. gum disease but no adverse symptoms.

mrscruffy profile image
mrscruffy in reply to CAMPSOUPS

My tooth got knocked out kissing a female friend, she was a bit aggressive hahahah

CAMPSOUPS profile image
CAMPSOUPS in reply to mrscruffy

Sounds it. lol. Whoa.

I cant seem to come up with a pleasurable fantasy thinking about that happening lol. (tooth fetish, "I love your teeth so much I want one for myself,).

mrscruffy profile image
mrscruffy in reply to CAMPSOUPS

Truth is even better, she says "that is a friend of my husband and he has no idea who you are, let's pretend to make out" then bam tooth to tooth hahahahah

spencoid2 profile image
spencoid2 in reply to mrscruffy

aren't we a little too old for this sort of thing :)

mrscruffy profile image
mrscruffy in reply to spencoid2

My friend group is 22-42, I don't care for most people our age. They are usually boring and have lost their sense of adventure and get offended when I don't want to see their grandkids pictures hahahaha

Kaliber profile image
Kaliber in reply to mrscruffy

lol … if I kissed a female friend and the hammer found out about it, I’d have to start calling her “ the hammer - extractor “ 😂😂😂

mrscruffy profile image
mrscruffy in reply to Kaliber

MY wife just shakes her head and says I am an idiot

Kaliber profile image
Kaliber in reply to mrscruffy

lol …. I’m sure she means that in a loving , supportive, way. Our ladies are what keeps a lot of us going . Both literally and figuratively.

😂😂🐊

* funny but I fixed it anyway * lol

mrscruffy profile image
mrscruffy in reply to Kaliber

You are not lying. My wife has been great with my diagnosis and the changes it has brought our lives. She is a God send

Kaliber profile image
Kaliber in reply to mrscruffy

Even tho things here come with a monumental “ caveat “ …… still, the hammer gives me wonderful care and having been together 45 years means we nearly read each others mind all the time.

spencoid2 profile image
spencoid2 in reply to mrscruffy

sound like a perfect match. she knows you are an idiot but is still with you. perfect.

Kaliber profile image
Kaliber in reply to spencoid2

Omg …lol….

Kaliber profile image
Kaliber in reply to mrscruffy

My Zometa teeth crack and break when eating fresh marshmallows ….just say’in 😂

GMorz profile image
GMorz

hi , I am a dentist in Australia. It is very unlikely you will have any problems unless had some more major dental work especially extractions or periodontal disease.

If concerned you dentist for an OPG X-ray to check all very quickly and simple

joeguy profile image
joeguy in reply to GMorz

I had 1 shot of Xgeva 4 months ago and now need a back, upper tooth extracted next week….. Hoping to avoid the whole rotting jaw thing, but who knows

GMorz profile image
GMorz in reply to joeguy

Risk levels very small but ideal to see a specialist oral maxillofacial surgeon so can be closely monitored post op and during removal take extra steps to reduce risk

joeguy profile image
joeguy in reply to GMorz

yes, the extraction is being done by an oral surgeon....... hate the thought of having part of my jaw fall off

tsim profile image
tsim in reply to GMorz

One of the times a panographic x ray is actually useful. Most of the dentists here is the US use it as a money making scam.

spencoid2 profile image
spencoid2 in reply to tsim

I have a great dentist. We sold our house in WA state where he is and only have a house in CA now, WE have never found a good dentist and even the not so great ones are not taking new patients. When I was put on xgeva i was told i need to get checked by a dentist. I was referred to a local dentist (not really that local hours of driving) who could see me in about 8 months. Thanks so much, they could not find time to do a 15 minute xray.

So i called my old dentist. He said sure I'll fit you in no problem. We planned to go to WA soonish anyway. He did a panoramic xray which insurance paid for but maybe $25 and checked out my mouth in general. He found some things to fix and fixed them too. He is great at multi tasking and has a great staff. He probably spent 35 minutes actually working on me (the rest, resin stuff etc done by his assistants) and then some more time catching up on gossip. Even though he makes time for his patients and does "emergency" work there is never a long wait to be seen. He just knows how to run an office or someone there does. Even with his chatting ( i have no idea if he spends as much time with everyone as with me but it sure sounds like it) he is productive and everyone loves him. I will fly to WA for an appointment with a great dentist rather than take my chances with a local unknown.

CAMPSOUPS profile image
CAMPSOUPS in reply to GMorz

Thanks for your input. Yes thats what I had always understood.

Prior to starting Zometa make sure you dont need any major dental work.

And stop Zometa if needing major dental work.

I have had for many years however periodontal disease. It wont hurt to get checked.

Thanks for the heads up on the OPG X-ray. I'm not interested in fixing everything wrong with my teeth at this juncture. Just avoid necrosis.

joeguy profile image
joeguy in reply to CAMPSOUPS

I did the pre bone drug dental exam, but somehow they missed a developing cavity on the root of a non-funtional mular ........ Im not going to be a happy camper if part of my face rots off !

CAMPSOUPS profile image
CAMPSOUPS in reply to joeguy

Hang in there. Hopefully you'll come thru with minor issues.

I once had a dream I pulled out half of my lower jaw. In the dream I was telling myself "you better leave that alone, quit messing with it".

Finally there I was in front of the mirror with my jaw in my hand. Saying to myself "now you did it, look at the mess you created" "how you going to fix this one"

I would like a shrink to tell me someday what the heck that dream was about.

j-o-h-n profile image
j-o-h-n in reply to CAMPSOUPS

Shrink would probably ask.........So what was in your hand when you woke up?

Good Luck, Good Health and Good Humor.

j-o-h-n

NewPotatoCaboose profile image
NewPotatoCaboose

This has been on my mind as I await a Reclast injection. Then yesterday I saw an article on Medscape: Outside the Guidelines: Denosumab Overuse in Prostate Cancer medscape.com/viewarticle/ou...

It is about this study: ascopubs.org/doi/10.1200/OP... Costs to Medicare of Nonrecommended Bone-Modifying Agent Use for Castration-Sensitive Prostate Cancer

Medscape writes: "The American Society of Clinical Oncology has endorsed guidelines that recommend the use of denosumab in men with nonmetastatic prostate cancer at high risk for fracture while taking androgen deprivation therapy.

Among men with metastatic castration-resistant prostate cancer, guidelines also recommend zoledronic acid or denosumab for preventing or delaying skeletal-related events, such as pathologic fractures and spinal cord compression.

For patients with metastatic castration-sensitive disease, however, the bone-modifying agents show no benefit in preventing skeletal-related events and are not recommended for that indication."

My thoughts on this are, ased on that, should I be getting the Reclast infusion?

Kaliber profile image
Kaliber

just IMHO but keeping an eye on your mandible and head X-rays are well advised and definitely could head some things off.

I’ve had several teeth crack pieces off from over 50 infusions of Zometa and during one head xray to check the soreness I had in my mandible , the dentist could see more broken pieces of teeth to come and that , besides my mandible paved with them , had a lot of tiny Mets in my nasal areas and front of my skull. This xray is a good way to compare additional Xrays to keep an eye on spreading and where head met issues are popping up most.

❤️❤️❤️

CAMPSOUPS profile image
CAMPSOUPS in reply to Kaliber

I have that too. Chunks of molars missing. And facial mets. The x-rays from the dentist should be interesting in showing more of my facial mets.

So many mets that with my regular scans it seems the radiologist chooses an area to cover on the scans. The generalized diffuse, sclerotic, numerous, axial and perpendicular bone mets through out always is noted then will add some detail about a area. One time it was my femur and hip left side for example.. I have also had mention made of mets around my upper right eye socket. AND lower left mandible. I felt that one when I started Pluvicto. The Pluvicto interacted with the mandible met and nerve and caused my lower front teeth and gum to go numb lol.

Carlosbach profile image
Carlosbach in reply to CAMPSOUPS

LOL? Really, that sounds pretty damn daunting camps.

CAMPSOUPS profile image
CAMPSOUPS in reply to Carlosbach

Weird stuff. Interesting too. But too bad I am my own medical example lol.

Luckily I don't sweat it. Its been like this for a little over 4 years.

Carlosbach profile image
Carlosbach in reply to CAMPSOUPS

I hear you. Sometimes positivity is pretty much what we have going for us.

Have you drawn or painted recently?

CAMPSOUPS profile image
CAMPSOUPS in reply to Carlosbach

I havent actually. In fact most of what you see from me is from my youth. I found a box with some of my stuff in it since we just moved here 3 years ago.

I still have some discomfort kinda often and going into those you tube rabbit holes with mini bikes etc. and stoned distracts me fairly well. At least until I get a Oculus.

Ice melted out of the lakes about a week ago. A very warm winter, record breaking, here in the twin cities. But could have some snow coming up soon.

Anyway fishing (there is a lake every couple miles around here lol) I look forward to.

I just might have to get serious about some artwork. I know I would enjoy it.

Carlosbach profile image
Carlosbach in reply to CAMPSOUPS

I get you on the rabbit holes. When my brain is wandering I can fall into a web search or Youtube and not come up for air for a while. You're right, it does help to distract, but not as much as fishing. Hope you can get a worm wet soon.

I had so much fun drawing with my grandaughter that I broke out some of my supplies and have been dabbling. Nothing show worthy, but very gratifying.

Kaliber profile image
Kaliber in reply to CAMPSOUPS

You and I seem to share a lot of commonality in the amount of cancer damage we have … I think you can still walk ok tho. That’s one of the most devastating things for me … I really hate not walking properly. Early on , people told me and I too believed that the proper “ exercise “ would loosen me up and fix things. Such a stupid thing that is to think tho …. No “ good “ comes from bone on bone contact / abrasion.. it results in more damage and discomfort. In our business, one size “ does not “ fit all.

Like you , I don’t sweat it much either … after 5 1/2 years I’ve normalized it …kinda … and ( thanks to opiates ) try to move on past most of that …. making adaptations like my wheeled chairs and my etrike. If either of us sat and moaned over our spilt milk much, it’d destroy what little QOL we have remaining. We don need dat chit buddy … do we . Lol

Love ya brother camps

❤️❤️❤️

Vangogh1961 profile image
Vangogh1961

Chemotherapy isn't beneficial and missed a couple appointments because of COVID, I ended up needing a couple crowns.

Sunnysailor profile image
Sunnysailor

my husband’s MO told him to get to the dentist at the beginning of his treatment, which we were just at so it wasn’t needed. He did prescribe prolia, any one else on that?

fast_eddie profile image
fast_eddie

Well, speaking of dental problems, I had to quit taking 5 mg finesteride. About a month after starting it I developed dramatic tooth sensitivity problems in both upper and lower teeth on left side. Before I figured it out that it was the finesteride I consented to a root canal on a lower tooth. Helped but didn't eliminate sensitivity in that area. So one less potion to use in my prostate cancer fight. I am refusing dutasteride too. Same mechanism of action so I am not inclined to try it. I am taking a saw palmetto supplement for the heck of it. If push comes to shove I will opt for intermittent ADT. I tolerated eligard seven years ago.

FourString profile image
FourString

I had the same hope!

CAMPSOUPS profile image
CAMPSOUPS in reply to FourString

I forgot what music you play bass to?

FourString profile image
FourString in reply to CAMPSOUPS

I play a four string guitar, not bass. Play punk pop mostly.

CAMPSOUPS profile image
CAMPSOUPS in reply to FourString

Cool. Im into it.

FourString profile image
FourString in reply to CAMPSOUPS

In that case: jdstriker.com

j-o-h-n profile image
j-o-h-n

We have several members who are active or retired dentists. They appear to be friendly and would answer any of your dental questions. So look them up if you need help.

Me, I was a Chippendale dancer and can advise you on how to wear your briefs in public.......

Good Luck, Good Health and Good Humor.

j-o-h-n

CAMPSOUPS profile image
CAMPSOUPS in reply to j-o-h-n

I never saw you "dance". I was in the other clubs. But I once accidentally walked in on girls night. There was one female dancer with the males. She invited me on stage with her. The women in the audience liked me. Man some of the opportunities, some of the what could have been, that passed me by in my youth lol. Kind of like when the female tech did the ultrasound on my balls when I was in my 20's. I used to dream of how that could have gone differently lol.

She said she would try not to cause any pain. I said should probably make it hurt a bit otherwise we are both going to be embarrassed.

j-o-h-n profile image
j-o-h-n

Great!!! Now let us see the tape reply.......

Good Luck, Good Health and Good Humor.

j-o-h-n

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