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.
Will my teeth fall out?: I value the... - Advanced Prostate...
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.
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.
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.
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.
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.
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?
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.
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
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.
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 ...
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.
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 !
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.
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!
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.
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.
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.
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.
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.
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!
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.
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.
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.
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).
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.
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.😺
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'...
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.
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
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!
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!
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
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.