Will my teeth fall out?: I value the... - Advanced Prostate...

Advanced Prostate Cancer

22,371 members28,137 posts

Will my teeth fall out?

monte1111 profile image
135 Replies

I value the few teeth I have left. They serve me well during midnight snacks. I have had monthly Xjeva injections for 2 years and 9 months. I was suddenly switched to Xjeva injections once every 3 months. In a hurried meeting in a corridor of the hospital, in hushed voices, like it was a drug deal, the doctor explained "After a couple of years, we have found your teeth may fall out." And that was that. I think she left out the part about the jaw being attached to those teeth. Or do the teeth just fall out? Why can't doctors be like Paul Harvey, and say "And now ... the rest of the story." This is where I come to get the rest of the story on so many things. I haven't stumbled on the answer to this yet, so I thought I would ask the gentlemen and gentlewomen here. "Have you been switched to 3 month Xgeva injections. Am I just offering up a tempest in a tea cup?" By the way, I've never had a bone density test in the three years I've been playing this game of blind man's bluff. Thank you, Toothless in Seattle.

Written by
monte1111 profile image
monte1111
To view profiles and participate in discussions please or .
Read more about...
135 Replies
LearnAll profile image
LearnAll

Mr Toothless Tiger in Seattle...

.The biggest mistake you are making is that you keep taking toxic medicine without even getting a Bone Density Scan (DEXA)

Doctors do not have time to provide high quality care because they are told to go by SOC(standard of care) which in true sense means "give everyone a bunch of toxic meds without thinking whether one needs it or not"

My MO offered me infusion of bone med..on my first visit. I told her that I will first like to know if my bones are weak..if yes how weak ? So I got a DEXA scan and paid privately. My T score came totally normal. I showed the results to Doctor and she said..O..Ok we can wait for few months....I got DEXA again after 6 months..it id show slight lowering in Bone Density

but not significant, So its one year...could avoid any bone infusion and have my full set of teeth....Save your teeth and your jaw too..and get a DEXA scan ASAP to sehow is your bone density and fine tune your meds accordingly.

monte1111 profile image
monte1111 in reply toLearnAll

Your advice is spot on. No DEXA scan or testosterone test in 3 years. Guess they didn't think it was necessary for someone who was obviously over the hill. Of course I can't get tests until the insanity dies down. Sorry, bad pun. Sounds like we are prime virus targets. Don't want to be put in a Senior Care Home right now. The ventilators seem to be a scam.

in reply tomonte1111

You and I are going to stay off of the damed ventilators . Ok? I’m fully in osteopenia from continued adt .. I didn’t really want prolia but I’m going along with the dr ..

in reply to

Same

Magnus1964 profile image
Magnus1964

I was switched also but no one said my teeth would fall out.

monte1111 profile image
monte1111 in reply toMagnus1964

So I am not alone. Don't know how long you've been on Xgeva (FDA approval 2010) but after 27? years of this, I am amazed you have any teeth at all, that you can walk or that you can even talk. You are an inspiration to all of us, sir. Keep on truckin'.

Magnus1964 profile image
Magnus1964 in reply tomonte1111

I just checked my calendar. I have been on xgeva since November 2018. My teeth have not fallen out but my jaw cracks. I am told that this is not caused by xgeva. The timing is a little suspicious.

dentaltwin profile image
dentaltwin in reply toMagnus1964

If you mean cracking or popping noises and sensations in your jaw (generally in front of your ear) it is more likely that this is caused by irregularities in the fibrocartilage meniscus that normally lies between the lower jaw and the base of the skull. Unless you suffer pain or diminished ability to open the mouth this is a mild annoyance and doesn't call for any urgent action.

Magnus1964 profile image
Magnus1964 in reply todentaltwin

Thanks for the information. Much appreciated.

in reply todentaltwin

Great answer dentaltwin Thank you 🦷🦷

LearnAll profile image
LearnAll in reply toMagnus1964

As you probably know that bone strenghning infusions such as Zometa, Xgeva can cause a very serious side effect called "Osteonecrosis of Jaw" which means that the jow bone gets corroded which may lead to falling teeth and other complications.

Any one who is prescribed these must try to get a bone density scan first and possibly use them intermittently as guided by your bone density and fracture risk factors.

There is an oral formulation, called Fosamax . This medcine comes in tablet form and belongs to Zometa type class (biphosphonates) and is less likely to cause the jaw side effect and its dose can be controlled better.

According to multiple research studies, Fosamax can increase hip bone density by 8% and Spine bone density by 6% in men ,if used for 12 months.

Also, bone building micronutrients along with dietary calcium and Vit D tabs plus Vit K2

are icing on the cake and enhance the effects of bone strengthning medicines.

Last but not the least, weight bearing excercises does increase bone density..no doubt.

monte1111 profile image
monte1111 in reply toLearnAll

Thank you much for all your knowledge. I do love icing on the cake. With 2 bad spinal disks and a T12 spinal compression fracture, bringing in a 36 pack of beer is almost something of a past memory. Compared to most here, my treatment has not been SOC, it has been soc.

in reply toLearnAll

This is the horror story of bone meds.. my first year I lost 15% bone density and annually at least 5% .. at this rate I’ll be a slug if I live five more years ..😂

LearnAll profile image
LearnAll in reply to

First year is the worst year for bone density decline. After one year ,bone density falls 3 to 5 % in most people if they are on lupron continuously.

Bone density alone doesnot decide your risk of fracture. Other significant factors include ...family history of bone fractures, use of steroids like prednisone,dexamethasone, excessive alcohol use, cigarette smoking, lack of green vegetables in the diet and of course..couch potato life style.

There is a scoring system which determines your overall fracture risk..its called FRAX score.

in reply toLearnAll

I got hit hard due to tubes and a foley and not being able to lift more than 10 lbs for my first year and a half while under double adt and. think 8 weeks of Imrt sacked my SI joints and hips too.? I’ve been under a holistic plant based diet my entire time with APC no smoking or drinking either . My osteo is purely from treatments . I started bone nutrients along with my prolia and feel less pain now due to which or both I don’t know?

LearnAll profile image
LearnAll in reply to

I think you are doing your part well. ADT does cause lot of harm but if we need it..we need it.

I saw your photo you posted taking sun bath... that kind of posture every day in bright Arizona sun can help preserve some of the bone density. I hope you are eating enough yogurt or drinking some fatfree milk along with it.

in reply toLearnAll

I might be the nosy only guy on hu using strontium citrate for bones.. I try to get 20 minutes sun but must watch for the skin c . Which I dont want either . As a blond haired fair skinned dude i did way too much sun worshipping in my years growing up . I love the sun but must use care .. Take care

monte1111 profile image
monte1111 in reply to

Sorry. I don't know why, but every time I see the word slug, I just start laughing. I'm sure j-o-h-n has an explanation.

in reply tomonte1111

J-o-h-n ...is a tribute to the world . Love that guy .. I’ve had great healthy teeth until now . I’m just lucky to be alive .Everything Else is just collateral damage and the price we must pay to to run the engine a little further . Living with APC is a test of how much one can endure . Good day !

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

Thank you for my tribute....about how I learned to read Playboy magazine with one hand.... (love you too).....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 04/29/2020 7:53 PM DST

in reply toj-o-h-n

Yah , me too! Couldn’t forget Barbie Benton . I liked the brunettes .

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

my favorite was Hugh Hefner.... some pipe.......

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 04/30/2020 4:31 PM DST

in reply toj-o-h-n

I must say that he lived life his way ...

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

In a robe................and a pipe.......mumbling....

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 05/04/2020 4:25 PM DST

monte1111 profile image
monte1111 in reply toj-o-h-n

mumbling....bed time Barbie.

j-o-h-n profile image
j-o-h-n in reply tomonte1111

I tried a lisp..... didn't do anything for me.....(licking my eyebrows, did)....

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 05/04/2020 6:49 PM DST

lewicki profile image
lewicki in reply toj-o-h-n

Been there .

j-o-h-n profile image
j-o-h-n in reply tolewicki

Do you have tee shirt to prove it? (Better than notarized)....

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 02/28/2022 5:25 PM EST

lewicki profile image
lewicki in reply to

Amen!

j-o-h-n profile image
j-o-h-n in reply tomonte1111

Not now... next slime.....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 04/29/2020 7:44 PM DST

in reply toj-o-h-n

You’re slurring you’re words slick.

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

youtube.com/watch?v=x_YFUJV...

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 04/30/2020 4:36 PM DST

in reply toj-o-h-n

I like the Gucci mane. Thanks J

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

youtube.com/watch?v=_WtaRSI...

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 05/04/2020 6:54 PM DST

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

It's called relaxed pronunciation....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 04/30/2020 4:49 PM DST

in reply toj-o-h-n

Slur it is!

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

Are you slur?

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 04/30/2020 6:44 PM DST

in reply to

Quite right Rick! 😂👏🏼👏🏼

in reply tomonte1111

I remember people made slugs out of metal for vending machines. Most of the time jamming them up. Darned sluggers...

monte1111 profile image
monte1111 in reply to

"I’ll be a slug if I live five more years ." This still keeps me laughing. I am picturing Jabba the Hutt.

in reply tomonte1111

A real life Jabba .. 😂

in reply tomonte1111

“Slug” hey that’s my line. Toothless

monte1111 profile image
monte1111 in reply to

They just charged me $78 to clean my tooth. Insurance says should be free. Something rotten in the State of California.

CAMPSOUPS profile image
CAMPSOUPS in reply tomonte1111

Whether medicare, obama care, our politicians decided its cheaper to pull out teeth and you can still work with no teeth. So there you go. Crappy dental coverage.

in reply tomonte1111

That’s cheap . I pay $250 each six months for cleaning x-rays and dental exam! Ouch ..that with no problems . A failed post now leaves an empty space for a nice Kentucky smile . It was a molar ,now A hole in my jaw . All part of the fun amigo . God bless!

monte1111 profile image
monte1111 in reply to

You have a nice smile. So does Lulu.

in reply tomonte1111

Thanks . Thanks had great teeth before . Lulu is our love child . Great day monte! 🏜

in reply tomonte1111

I’ve been on the prolia 3 yrs almost .

monte1111 profile image
monte1111 in reply to

Xgeva 5 years. Hoping for another 5 years.

in reply tomonte1111

I’ve been on the watered down version prolia 3 yrs.

ctflatlander profile image
ctflatlander in reply toLearnAll

I received disappointing news last week about my last Dexa scan. Been on Hormone therapy for 2 1/3 years plus Xgeva. Ostopenia is stable in arm but now the reports shows it is in the hip and the lumbar. Been on calcium and vit D supplement, exercise, nutritional diet. Doc says Xgeva will protect me but I want to reverse it. Any suggestions? Thank you

LearnAll profile image
LearnAll in reply toctflatlander

Reversing osteopenia is very difficult if you are on continuous hormone therapy.

That's why some doctors prescribe intermittent androgen therapy.

Bone loss is almost half in intermittent therapy than in continuous therapy.

The difficulty is that not everyone is a suitable candidate for intermittent therapy.

Basic criteria for considering Intermittent therapy are:

(1) Gleason score 8 or less.

(2) Super response to initial ADT..meaning PSA was knocked down to 0.2 or less.

(3) Absence of visceral/organ metastasis

(4) Absence of Neuro endocrine, ductal ,small cell type or any other rare type.

(5) Overall health should be good without other serious chronic illnesses.

Only some oncologists will agree to prescribe Intermittent therapy as it requires

more close monitoring and comes with increased litigation risk as mainstream oncologists have not accepted it fully.

in reply toLearnAll

I ‘d argue that it’s dam near impossible! 😳

in reply toctflatlander

I’m in the same boat basically . Except I’ve been on adt over five years .. Do you have any hip or joint pains? I Did severely but started nutrients and prolia and the pain has greatly lessened . Due to which , I don’t know? Maybe the combo . Exercise is your strong suit . May we both be lucky in all of this ...

ctflatlander profile image
ctflatlander in reply to

I don't have any ongoing pain with bones or joints, only after I overdo it like XC skiing or doing hard labor in the yard. I miss my 3 times a week at PT and hope we get over this virus soon. Living in northern Vt is difficult to find an easy walk, but I just came back from a 3 mile walk which I try to do daily. Hope you have success with nutrients and try to do exercise in something you enjoy.

in reply toctflatlander

After yard work for me too. We will all be happy to get back to he normal routines . Take care

in reply toctflatlander

Im the same. Dropped gym with Covid. I’ve suffered for it. Sold all of my extensive gym equipment in our move prior to Covid. P fitness down the street. Not going til Covid flees us?

in reply toctflatlander

Hey Ct! I went four years on adt before putting me on prolia after osteopenia was present. After 2 yrs on prolia my last scan told me all of my joint on fire )djd) and my L- 3 rib had a None displaced fracture? Hmm ? I didn’t even know it . Just another of random pains I get . I thought prolia is supposed to prevent fractures. Damed if we do? Good luck . If we survive treatments we must then deal with these depleting after effects. And those are lucky ones . Good luck

🍀

ctflatlander profile image
ctflatlander in reply to

Wow This post goes a way back. Hey Lulu, Life is not getting better, although my MO in 2017 said I have 5 yrs and I think I'll make it. I started on Xgeva 1 1/2 yrs after starting ADT and the doc says I will stay with it forever. I had the boys removed a year ago so but still on Zytiga. I get to go to a physical therapy gym and work out 2 days a week. It used to be 3. Its a pain wearing masks and cleaning the equipment. There are cops there so you don't get away without cleaning. I'm going xc skiing later this morning but I don't have the stamina I used to have. Getting my next bone density test next month and hope osteopenia didn't get worse. Exercise and calcium, protein power hopefully improved or at least stayed stable. Although I have a reoccurrence in a met on T3 I don't have pain and Doc says keep doing what you are doing. I'm not sure what comes next, Provenge, Xtandi or Doci. Psa at .38 Bob

in reply toctflatlander

It does . I stumbled on it . Time flys as we have fun ehh? Oh boy! APC is non stop fun . My uro said I might make it 36 months at most . They don’t know Jack! I’m at 7 yrs dx this month . I was given 50/50 shot to survive the first yrs with tubes and foley . But I did! I did the orch also in 2017 and dropped the lupron but I’m still taking 4 pink pills a day stopping adrenal production . Muscle painfully first left me then the bones depleted now my joints are screaming in painful disintegration . No Psa no signs of pc . Thank God! Stay the course the MO says! . We have no choice but to suffer . My hope is that we will find some little rays of light each in life . Keep the boat afloat best we can . 😳

Magnus1964 profile image
Magnus1964 in reply toLearnAll

Great information, thank you for your posting. I sounds like my cracking jaw is caused by xgeva. I going to hold some one's feet to the fire on this.

in reply toMagnus1964

Both feet .😂

dentaltwin profile image
dentaltwin in reply toLearnAll

I can't rule out that oral bisphosphonates have been used to control bony metastases in PC, but I've never heard of it. Dosing for zoledronic acid for osteoporosis is very different from its use to control bony metastasis in cancer.

LearnAll profile image
LearnAll in reply todentaltwin

What drives Doctors to use stronger medicines in each case is that it usually has less risk of legal problems. In a simple,milder case of Osteopenia, the first medicine to try should be Fosamax which is in tablet form. Infusions of stronger stuff gives doctors more control as they dont need to worry if pt is taking tablets or not.

In a pathogical capitalistic societies, standard of care doesnot always mean truly high standards...rather sadly it means "standard of huge profits for Onco Industrial empire". And families go bankrupt in the process....its shameful to say the least.

Vulnerability and weakness of such anti people,antifamily societies get exposed when faced with a calamity like Covid-19 when they can not even provide protective clothings to their Nurses and Doctors....so much for a super power !

scarlino profile image
scarlino in reply toLearnAll

That’s what happens when you outsource all your manufacturing to this friendly countries across the sea...

LearnAll profile image
LearnAll in reply toscarlino

In my neighborhood hospitals, 3 reg Nurses died because they were short of protective clothings and face masks . It makes me angry..why a healthcare professional needs to die in line of duty...just because the super power was unable to provide "damn protective clothing' Whats the use of trillions of dollar economy. One of the deceased I knew..a 33 years old with husband and 2 little children. Sorry for expressing my frustration.

in reply toscarlino

Everything on Amazon is Chinese

in reply toscarlino

I got a Swiss tech Bowie knife , and some Smith and Wesson throwing knifes .= both China?

RyderLake2 profile image
RyderLake2

Hello,

I think you need to push the pause button. I have been taking Prolia (aka Xgeva) for nearly seven years with no serious side effects. The medical name is denosumab. What you are describing is osteonecrosis of the jaw. This is a nasty side effect but fortunately relatively rare. I think about 2%. You need to let your dentist know and have him (or her) keep an eye on your jaw. You do need to have a bone density test, as others have mentioned. To have your doctor tell you that your teeth are going to fall out is, in my opinion, irresponsible.

Hope that helps!

monte1111 profile image
monte1111 in reply toRyderLake2

Thank you so much! I surely would like to push the pause button and rewind the last three years. Most of us would like to rewind the last few years. But we keep pushing the play button. The doctor did say "your teeth may fall out". She also said I "may live 2 and a half years if I did chemo". That was 3 years ago. Doctors are just stuffed with opinions. I do need that bone density test, in my opinion. Thank you for the help.

in reply tomonte1111

You need to know that .

in reply tomonte1111

Can I push the rewind button back to 1987 my best year ..

monte1111 profile image
monte1111 in reply to

Absolutely!! I paid a ridiculous amount of money for a receiver and speakers to mostly listen to the '70's music. But then, its always back to the future.

in reply tomonte1111

I know the music from the 70’s all too well. That was my era. Damed disco imploded towards the end . Once they came out with the disco duck , it was over . I was into the rock more so back then . Never learned to disco dance .. I was too young for the clubs .. and had two left white boy feet ...

monte1111 profile image
monte1111 in reply to

When me and the wife danced, people were astounded. Everyone just got out of the way. This was before internet, digital cameras and cellphones. And if someone had an issue it was a boxing/wrestling match in the alley. No one brought a gun. And if you pulled a knife, the intoxicated mob would beat the crap out of you.

in reply tomonte1111

Ah! The good old days?😂😂

in reply to

I was King in

87!😎👏🏼👏🏼

in reply tomonte1111

I get em bi-annual.. it just shows the depletion .. I regained 10% bone density after 2 yrs prolia and nutrients. But that was after losing 25% first dexa and 15% the next , I’m still in the old hole . The math ain’t good

monte1111 profile image
monte1111 in reply to

Most doctors are sales persons. Not Mathematicians. I said most. No angry replies please, from the great doctors who are on HU. We appreciate you.

in reply toRyderLake2

My MO tells me that I’ll do 4 six months shots of prolia then stop . I’m surprised that you’ve been on it for 7 years . Great that you’ve had no bad effects. 😎

RyderLake2 profile image
RyderLake2 in reply to

Hello,

Everyone is different. What works for me might not work for you. I was diagnosed in May, 2013 with aggressive metastatic prostate cancer. At the time of diagnosis my PSA was just a little under 1700 and the cancer had metastasized to my bones from my neck to my knees. Multiple lesions everywhere. I started Zoladex right away and three years ago added Enzalutamide. At the time of diagnosis my oncologist recommended Prolia to provide additional bone strength and to minimize the possibility of a Skeletal Related Event (SRE). In his opinion, it was superior to Zometa (Zoledronic Acid) with fewer side effects. Certainly, I don't have to have frequent tests to monitor kidney function. I receive an injection from my family doctor every six months. As mentioned, it has been seven years with no side effects! PSA currently is undetectable. Touch wood! Hope that helps.

monte1111 profile image
monte1111 in reply toRyderLake2

Undetectable PSA after 7 years? Nice. I am 0.1 after 3 years. Also extensive bone mets. Does seem to be a small quiet revolution underway. I believe that all of us are really changing the statistics. Best of wishes.

RyderLake2 profile image
RyderLake2 in reply tomonte1111

Hello,

It hasn't been undetectable for the whole seven years. It was going up quickly prior to me starting Xtandi (enzalutamide) in 2017 but right now it is largely behaving itself. My PSA was also starting to climb a year ago but for some miraculous reason that I don't quite understand it went back down again. The last test a couple of days ago was 0.014. Fortunately, my oncologist watches me like a hawk with monthly PSA and testosterone tests. A great doctor and a great guy, I am fortunate to have him.

monte1111 profile image
monte1111 in reply toRyderLake2

You are fortunate indeed. My doctor watches me like a bat. She is always smacking into walls.

in reply toRyderLake2

Good doctor.

in reply toRyderLake2

I agree . No two of us are exactly the same .. Many variables .Your side effect free seven years with prolia gives me hope that I’m going the right thing. Thank you Sir .

Boywonder56 profile image
Boywonder56

Been on lupron, erleada...3plus yrs....have lost 3 tooths.......

LearnAll profile image
LearnAll in reply toBoywonder56

Boywonder...What are you doing to keep your bone density OK ?

in reply toBoywonder56

Ouch.

monte1111 profile image
monte1111 in reply toBoywonder56

I am truly sorry. If I lost 3 more teeth I would be down to Processed Imitation Cheese Products. Don't think that promotes prostate cancer. But of course, when they bring me in on a stretcher, the doctor will say "Good God! What is that in his arteries?" Good luck. I think we're going to win this. If they don't keep moving the goal post.

in reply tomonte1111

Pass the cheese wiz and ritz crackers .

I hear ya Monte! I’m in osteopenia and started prolia about 7 months ago. I had a dental post attempted a month and a half ago. The first post failed due to the bone around it breaking as it was put in . He put in the next size . A few days after the antibiotics wore off I got a terrible painful Pusey infection . They removed the post and put in some cadaver bone to hopefully graft it . So now I have a hole drilled into my jaw . Doc says come back in four more months to see how the graft took . . I’m pondering if my upper jaw is going to collapse from this . I had many gold crowns in the past . I’m praying this isn’t staring a dental decline for me . The post and new tooth cost $5K .. a bridge cost $4k now . If I have more failures don’t know what to do ?

Just might end up toothless before all’s said and done. Damed If we do , dammed if we don’t . . These bone drugs are said to strengthen then they make our bones more brittle and prone to fractures . Wtf? Take care monte!

monte1111 profile image
monte1111 in reply to

I hear you. Remember 30 years ago when doctors were switching to dental school. More money in it. Medicare doesn't pay for dental? Even the government can't afford dental. Maybe covered under medical necessity? I don't know. Shake that bush. Wait a minute, you're too young for medicare! I've got a very old Black and Decker drill I can loan you, but my self-denistry has worked out about as well as my self-haircuts. Good luck Scott.

in reply tomonte1111

I’ve been on Medicare medicaid four years now .. too young indeed. Fortunately I haven’t needed any treatments in awhile and my test adt drugs are free. I can’t speak much of how I’ll be treated in the future . No poor folks are out there getting expensive dental work . They need food instead .

monte1111 profile image
monte1111 in reply to

Cactus is nutritious, and you don't need many teeth. I need a new partial denture. $1,000 co-pay with my dental insurance that I pay extra for. Not including all the other charges they can think of. Maybe better off dumping insurance and pay cash to dentist I've had for years. How come I can't keep my dentist? I paid him for second opinion for something else. Glad I did. They were so scared about Pca. Thanks! You've helped me make my mind up. Screw the insurance and I will go back to my dentist. The doctor who never offered me a psa test ... I hope he's retired.

in reply tomonte1111

I have no dental insurance either . 5k for the post and tooth was 1/3 of my SSDI income. Living large. I’m thinking that I might not reach my goal of a mill in the bank by 2021.😂

monte1111 profile image
monte1111 in reply to

You, me and j-o-h-n. Oceans Three. Where oh where will we find masks?

in reply tomonte1111

We don’t need no stinkin mask, we are all already walking the plank !😳

Dett profile image
Dett

I’ve been on 6 month Prolia injections for almost two years (osteoporosis) without a problem - and it’s helped with the bone loss. The jaw issue was brought up, but not emphasized. My husband recently had a DEXA scan since he has been on ADT and has a familial history of osteoporosis. Turns out he has osteopenia but MO didn’t think he needed drug treatment, at least not yet. I’m really surprised that you were given treatment for an issue that you may not even have.

in reply toDett

Maybe his dr sees something that we don’t . ?But correct, my dr didn’t put me on prolia until the dexa proved the bone loss .. I just wonder if some of that could have been slowed downed earlier ??

Dett profile image
Dett in reply to

Good point, Whimpy. If it’s been shown that most men on ADT develop significant bone loss, and if the prescribed bone loss drug has been shown to cause no harm in men with normal bone density, then it might be worthwhile to prescribe prophylactically. I don’t know enough about the science to argue intelligently one way or the other. But I would note that most women are prescribed a bisphosphonate (e.g., Fosamax) before Xjeva (Prolia).

in reply toDett

I hope so for monte. Take care

monte1111 profile image
monte1111 in reply toDett

Pretty routine for extensive bone mets, I believe. With just a couple of mets, hopefully your husband can just shrug this off. I already had a bone fracture -- getting off my couch. Ok everybody, no fractured couch potato jokes. No, I am not a Lay's Potato Chip. Wishing you and husband the best. Now I need to go and lie down and watch the movie.

in reply tomonte1111

I think you need it then .

Fanger1 profile image
Fanger1

Hi Monte,

Sorry to hear about your dental concerns. When things get back to pre-CPC virus I urge you to get a dental check-up and cleaning. You can prevent tooth loss with healthy periodontal status. You want to avoid calculus or tarter in any remaining teeth, so your dentist may need to do periodontal scaling and root planing. Brush, floss and rinse with anti-bacterial mouth wash. Also, in addition to the Dexa Scan your may ask to get the CDX serum test (C-Telopeptide). That test measures bone turn over. If the Xgeva is doing it's job, that test should be with in normal range. There's some great dentists up in your area. Best of luck maintaining your remaining teeth. Screw what you were told brother. Dr.😺

in reply toFanger1

Our friend Fanger ain’t fooling around about his dental advice. I’d follow it explicitly . Never knew of the cdx test before. Thank you Sir🤙🏽

Fanger1 profile image
Fanger1 in reply to

When all is said and done the dentist, periodontist or oral surgeon has to be involved in decision making. Only they should give your teeth the death sentence. As a restorative dentist, my goal is to preserve that which remains. Best wishes for everyone's dental health😸

in reply toFanger1

👏🏼👏🏼😷

immunity1 profile image
immunity1

Dear Toothless, thanks for the running commentary on the woes of misplaced mastication and the paranoia of loosing that last prized tooth. Eventually this precious dentine-encrusted item has been imbued with a reverence it so rightly deserves. No dwelling on the putrefied gums struggling to retain it, or the aimless tugging with dental floss. If only the Good Lord had given us open rooted teeth, like herbivores, that kept on growing so that we only needed to grind off the top periodically to prevent having a wave or stepped lineup of dentures, and of course if they dropped out, no problem grow another.

As per Th' Dudes in Bliss...."forget about the last one, get yourself another'...

in reply toimmunity1

Oh! To be a cow! Poetic

monte1111 profile image
monte1111 in reply toimmunity1

New Zealand would be a nice place to be right now. Of course, its almost impossible to go anywhere. Lu177 a hop, skip and a jump away. Hope you are doing well. Many of the folks on this site are actually herbivores. Reminds me of the song Grazing in the Grass. T-Bone and Porterhouse steaks are on sale for $2.99 a pound! Probably be gone by the time I get there, just like the toilet paper. There is talk of a meat shortage. I fear cannibalism is next. BBQ season just starting here. Guess you are just starting winter. The virus is just now on upward trend is Central California. This will be a summer like no other. Enjoy.

in reply tomonte1111

Summer of 2020 doubt and fear. “Grazing in the grass can you dig it”?$2.99for porterhouse ?...mmm...260 million are said to face starvation this year worldwide. Whoa nelly! Stay well monte!😷

dentaltwin profile image
dentaltwin

FFS! Did she really say that? I have read no reports in the dental literature of any association between Xgeva and tooth loss. Neither is it a cure for periodontal disease. I would take her dental advice with about the level of concern you should if I were to suddenly call myself a medical oncologist.

Steve Bornfeld, DDS

Scoofer33 profile image
Scoofer33

I’m staged 4TbN0M1 Gleason 9 mCRPC diagnosed in 2015 when I was turned down for a change to my life insurance policy because my PSA was too high. Like everyone before starting Lupron I was warned of a 1.8% chance of contracting Medicine Related OsteoNecrosis of the Jaw (MRONJ), but was told its benefits to my challenged bones would outweigh the slim chance of any negative side effects. I take good care of my dental health so I had no teeth pulled or had any trauma-causing procedures that might be problematic before starting quarterly Xgeva injections in 3/16. By 10/18 after a total of 10 injections, I was already waiving injections due to pain in my tongue. A hole had opened up on my gums exposing jaw bone beneath. On 2/19 I was diagnosed with MRONJ and oral surgeon #1 ground down bone protrusion which was tearing a groove in the side of my tongue. On 7/19 oral surgeon #2 removed a 3/4” x 2” section of the lingual side of my jaw leaving the roots of molars #18 & 19 attached to the buccal side of the jawbone but with the roots fully exposed and dangling in mid-air on the lingual side of my jaw. I receive annual teeth cleaning to remove black stains between my teeth left behind from the residual Peridex mouthwash created stains I can’t remove with flossing. I’m grateful that in spite of how horrific this situation seems, it’s actually created far fewer inconveniences than anticipated! So far so good!

in reply toScoofer33

Sounds like a horror story to me ... 1.8% .. sorry you’ve had to go thru this .

monte1111 profile image
monte1111 in reply toScoofer33

About all I can say is wow! Wish I had some of your so far so good attitude. Good luck going forward.

noahware profile image
noahware

I didn't notice any mention (yet) in this thread about estrogen. My understanding is that much of the bone density problems from ADT is not from the loss of T, but from the loss of E that follows with that.

Is low-dose transdermal E2 a potential substitute for bisphonate meds?

Also worth mentioning is the importance of adequate vitamin D here!

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

And for a wonderful topic.... I am awarding you with a little plaque....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 04/29/2020 7;59 PM DST

Fanger1 profile image
Fanger1 in reply toj-o-h-n

You get a A in Calculus 🙄

j-o-h-n profile image
j-o-h-n in reply toFanger1

Thank you.... that gives me something to chew on.............

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 04/29/2020 9:40 PM DST

Fanger1 profile image
Fanger1

Well then you deserve a 👑

j-o-h-n profile image
j-o-h-n in reply toFanger1

A crown? Hmmm well to tell you the tooth, I think that's a bridge too far........

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 04/30/2020 2:04 PM DST

monte1111 profile image
monte1111 in reply toj-o-h-n

Does your mind ever stop? Is there a strange ringing in your ears? (Snicker, snicker). Do you always have to have the last word ....er the last joke. You must drive Annie insane. No candy bar jokes please. Do not reply to this reply to the reply.

in reply tomonte1111

It’s a steal trap up there.

monte1111 profile image
monte1111 in reply to

You are so right! He's always stealing the last laugh!

in reply tomonte1111

He who laughs last , laughs last ! Any humor is appreciated on HU. Be well monte ..

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

Nope.... but your gums will.............

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 04/29/2020 10:36 PM DST

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

1. Ringing in my ears..... answering my phone all day....(no one there)...

2. Insane? Ana, my son and I live in a rubber house.... Address is on Condom ave.

3. No candy bar... just a B.A.R...

4. I grew up in the south Bronx where we all played "the dozens" and you always had to have the last word.... it's in my DNA now....

5. Finally you're one of the coolest guys here and I like to break your chops.....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 04/30/2020 4:19 PM DST

monte1111 profile image
monte1111 in reply toj-o-h-n

I knew you just couldn't resist. Especially since you grew up in the south Bronx and played "the baker's dozens". And you with a tall, white chef's hat, a meat cleaver, saying "Here's Johnny! And I have the last word!" I am so sorry that you have started to hear things. With you and Ana, excuse me, on Condom Ave, and you and Annie on Rubber Lane, you must be stretching yourself pretty thin. If some nut gave you a B.A.R., I am definitely skipping NYC. There is going to be a chop shortage, so I bought 5 freezers to put chops in. I will not be caught sitting on the toilet saying wtf like when the Great Toilet Paper Shortage was here. You are the bestest Good Humor Man out there. Make 'em laugh, make 'em laugh, make 'em laugh. It is not necessary to reply.

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

I won't........

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 04/30/2020 6:16 PM DST

monte1111 profile image
monte1111 in reply toj-o-h-n

Ok. I quit. You win.

j-o-h-n profile image
j-o-h-n in reply tomonte1111

If I won, then that means you lost........

Hey Ana!!!!!!!!!!!!!!!!!!!!!!!.............................

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 04/30/2020 6:29 PM DST

in reply toj-o-h-n

😂😂😂😂Who’s on first?

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

The second batter..........

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 04/30/2020 7:19 PM DST

Batter up! Knock it out of the Park j-o-h-n ⚾️

Not what you're looking for?

You may also like...

Breaking teeth

Recently I have had a couple of molars break off . I've only had a treatment of Lupron for 6 months...
runtrails profile image

Dentist wants to pull my teeth prior to Xgeva....

Gleason 9 (5+4). Under Dr. Myers lasted 14 years with his ADT and supplement treatment. Now have...
SUPERHEAT12 profile image

SOC options have run out, PSMA negative, declining health - what's next?

My husband was diagnosed with high grade prostate cancer in 4/06 Gleason 4+3=7 in 12/12 cores with...

Stable PSA, deep fall testosterone lab results.

At this point I am only getting Lupron injections every four months. Zytiga and Prednisone stopped...

Almost 3 years on ADT + Erleada

I am almost 3 years on ADT I was diagnosed as stage 4 with a bone biopsy on a lesion.My MO started...
mynacho profile image

Moderation team

Bethishere profile image
BethishereAdministrator
Number6 profile image
Number6Administrator
Darryl profile image
DarrylPartner

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.