i have always (okay, not always but since becoming mbc) been curious why a supposed bone 'strengthener' could cause such damage to the jaw bones? made no sense to me. and i was scared to death of that side effect...took me a while to agree to the tri-monthly Zometa infusions. what finally 'sold me' on it was when my oncologist explained that it changes the 'micro environment' of the bone, making it an unfavorable environment to the cancer cells.....as in a cancer repellant of sorts. and then i read an article that used those exact words...micro environment.. and i was in.
so back to the explanation. i read an article recently that explained that Zometa increases the blood flow to all bones...and the increased blood flow accounts for it's strengthening properties etc! EXCEPT the jaw bones. for some reason, it actually DECREASES the blood flow to the jaw....hence the necrosis issues. no blood flow equals tissue dies (necroses). this was just a very small portion of the article i was reading....wasn't even about this issue...but i came across it. found it really interesting. not a cure, no. but interesting. (this article only spoke to Zometa, Xgeva not mentioned, but assuming it does the same thing...but not sure)
best wishes
carole xo
ps.. also wanted to mention that i am no longer on Zometa although i was for four years. i am 4.5 years in. 6 months ago, my bone scan showed issues in my jaw bones....they were faint but visible even to me, had never been seen before, and radiologist report mentioned question of bone disease in jaw, especially in the upper. so that was it for me! and my oncologist was on board. i feel like maybe i dodged a bullet.. will be very curious what my bone scan shows this month. and dental appt this month as well. maybe the time allowed on Zometa should be capped? (and Xgeva?). perhaps they can only sustain the decrease in blood flow for so long.....just me thinking 'out loud' ; )
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Thank you for more information. I was on Xgeva and taken off. Then had a bone show up in my mouth with rotting tissue where a tooth had been pulled. Lost 5 teeth with getting rid of the dead tissue and the bone.
hi. very sorry to learn you lost 5 teeth from the side effects of Xgeva. that must have been very traumatic for you. very disheartening when the side effects of the treatment can cause such harm. this disease is challenging enough on it's own....carole xo
Yes I was on board with Xgeva believing it kept the cancer in my bones. After 5 years I’ve lost partial sight in my left eye which they believe was caused by Xgeva (uveitis). I was ready to come off it anyway but then started reading about the rebound effect and how the Doctors don’t have an answer to stopping fracture’s especially in the femur. A few weeks ago I had a problem with my gum and the x-ray seems to show bone loss. I’m now scheduled to see an oral surgeon. My last shot was July 2021 and 7 months seems to be the witching hour. My Onc says he’s never heard of these problems but there’s tons of information out there and I’ve read quite a few people posting on this site so as they don’t have an answer then they’ll not admit to it. Someone else on here that posted said 1-100 had problems. I started calcium tablets then stopped as I read it destroyed magnesium and my calcium level has always been good. I’ll continue to try and eat healthily and I do try to exercise every day. I’m 71. Oh btw the best answer was that you should start a bisophonate first before denonusab then go back on bisophonate when you stop denonusab but they weren’t too hopeful even about that. Wish I’d never started it! Hope this is helpful Chris
hi Chris. so sorry to hear about your eye! and wishing you best of luck at your upcoming appt with oral surgeon....hoping the bone loss is minimal and no sign of necrosis! it really seems that most oncologists really downplay the seriousness of this possible side effect of Zometa and Zgeva. just from word of mouth....it seems a lot more prevalent than we are led to believe. i know my oncologist never mentioned anything about ONJ to me....only after i brought it up (that was almost 5 years ago)....and brought in articles to show her did she acknowledge it, but still very nonchalant. i realize you need to weigh the benefits vs risks with all drugs we take....but this is a serious side effect and not to be taken lightly. it should at least be mentioned!!! how can you make an informed decision if you are not informed in the first place. thanks for your reply.best wishes!
Thanks Carole and all the best to you on your journey. I’m in the PNW and the hospital billed my Insurance $10,000 every time I had a shot. My co-pay was around $500. You can understand why they were reluctant to discontinue this treatment. Trying not to be cynical but that’s why I appreciate this group and the research we all do and share. Take care Chris xx
oh, i hear you loud and clear Chris! makes me sad that we MBCer's are revenue producers to Big Pharma and docs and hospitals...that they profit from our pain and suffering. i had the same experience with my oncologist regarding Ibrance. i opted to decline ibrance (personal choice, personal reasons, my body and ultimately my decision) and yet my onc pushed like crazy. i did my own extensive research and made an informed decision that i felt was best for me at the time. she continued to bring it up at every appointment for the first 3 years. i get it....it's a huge money maker for all involved (my opinion) except the patients. it made me so uncomfortable. and she would not acknowledge that any of her patients ever had any negative side effects?? thank goodness she finally stopped asking. i remained bone only on letrozole and Zometa and now just letrozole. we are the captain of our ship! okay.....off my soapbox....lol. i wish you the best!sending hugs....
Hi Carole,Please post the reference to the article you read. My oncologist keeps asking me to start Zometa, and I would like to have more information about its issues.
hi Cindy. i usually tag articles that i like, however, i guess i didn't this time. i checked my history and still couldn't find :(. so sorry about that! going forward, if i post from an article, i will be sure to include the link. my apology!!!wishing you the best....
I broached that very subject to my onc. I am on Xgeva and also concerned about longer term effects. With new meds for MBC, patients are living longer and I think we need to be mindful what those drugs do to us. Standard of care may not be appropriate after a certain period of time. I am now on Xgeva every 6 months and may phase it out altogether at some point.
hi. i am in total agreement that while these meds have potential important benefits, that perhaps the length of time on these meds need to be capped?? like you stated, many are living longer with MBC and maybe not appropriate to be on these bone meds any longer than necessary.carole xo
I am going to end up with gums instead of teeth along most of my upper right mouth. The longevity issue to me means that I don't want to live too long without being able to smile, and I do plan to live a few more years, since things are going very well, so they had better come up with an alternative. My oncologist said I could come off Xgeva because there is no evidence of cancer in my bones (inactive).
hi Tammy. well let's hope that doesn't happen....have you already lost some teeth or are you anticipating it could happen? i hear you on the smile issue....i would not want to lose 'that' either. i personally am already quite deformed from cancer ridden twisted spine. i feel like the only thing i have left that is 'normal' is my smile😀. fingers crossed that going off the Xgeva will help you maintain your smile! and good for you on 'no evidence of cancer' in your bones....yay! best wishes to you!hugs...
Just reading this belatedly. That is the explanation of the ONJ effect, but not an explanation of why the blood flow is reduced to the jaw only. What interested me is that your scan showed possible bone disease. I never see my scans, can't read them, but the radiation oncologists' reports mentioned "caries" in my teeth for the two scans before ONJ declared itself. My oncologist scoffed, as did the dentist, that the radiation onc. thought he could detect tooth problems. -- Now I wonder if he was on to something, a warning sign or something. I will raise that possibility with my oncologist. I am always hoping to enlighten her so she won't screw up with the other patients as she has with me.
Carole, that sounds very uncomfortable, twisted spine. Is that why you can't exercise? One of my dance teachers has severe scoliosis, and the dancing, muscles, help. When she was bedridden for two weeks, her back hurt again, so she has to keep staying in shape. Don't know if that applies. -- I just picked up a thread from months ago and am reading and replying. I guess by now you know I lost three teeth. They don't show. One more to go on that side. People tell me it won't show. The periodontist says there is one on the front on the left upper side that is iffy, and that will definitely show.
Smiling is important in this predicament! I think it keeps people from treating us as...I don't know, damaged, beyond the pale, scary.
hi Chris. i just replied but not directly to you....posted to the thread by mistake. so please read my reply below. and while i was writing to you, you were writing to me under the thread MBC. we just crossed in the universe....lol.carole xo
Carole- thanks so much for posting this. I have taken zones and have been off for 8 months due to an ongoing tooth repair…. I may opt to not continue in the future!
i knew what you meant....lol. and good to hear you liked the info in the post👍. i really do think Zometa is appropriate med for mbc.....stronger bones and changing the 'micro environment' making the bone less favorable to the bone mets. but the risk of ONJ is real and if your teeth are 'iffy' in any way....i personally would give a lot of thought. i think they usually advise getting any noted dental work done before starting on Zometa...and that is helpful i am sure. but many times, teeth issues can just pop up without much warning and they can't control that not happening...i am talking about what can happen after you have already started Zometa. just like what happened to you. btw...best of luck on your tooth repair....hopefully it is going well. fingers crossed!
so i have mixed feelings on the benefits vs the risks. i'm not sorry that i agreed to take it. but now that my jaw bones are 'lighting' up faintly on my last 2 bones scans....i think i would be tempting fate to continue. i went off of it 6 months ago (and my onc agreed with me....which was a surprise...haha) and don't plan to restart. however, i was on it for 4 years and tolerated fine. repeating myself, but my personal thought is that they should 'cap' the amount of time that we are on these bone meds.....maybe 3 years?? i guess would entail them doing a study before making changes to 'protocol'. just my own thoughts and opinions. everyone has to make their own decisions.
how long were you on Zometa before needing to stop it for your tooth?
did your oncologist tell you to stop the zometa or was it the dentist? or you? just curious.
Hi Carole— Thank you for your response! I was on Zoneta for 18 months before I went off of it. I’m working with a dentist who is doing an alternative remedy ( instead of pulling the tooth) it’s “ old school” and most don’t recommend this anymore. Glad he is trying this— I had a tooth break off at the gum— root of tooth still ok. he built up the tooth and I’m wearing Invisalign’s to pull what is left of the tooth down from my gum so it can be capped! Whew! It will be at. Least six more months to see.
i fit into that 'damaged' category...so i 'get' what you are saying. i don't get out much, but when i do, people want to 'help' me and their reaction is immediate. although some just avoid eye contact. (one extreme or the other). this is recent within last 6 months. where i didn't look sick before, now i have noticeable symptoms of the spine mets and people treat me differently. such a mind trip. i don't care that much but what i do care about is that it makes me realize how much my body really has changed. so if i am trying to be in denial...it gives me a jolt of reality. doesn't change my overall survival, it does affect my self-identity. it impacts every aspect of my life. something as simple as brushing my teeth is a big ordeal. all those little things we take for granted when we are able to stand and walk.
i agree that moving a muscle is better than not. i used to be very active and fit....and i would often push my limits. but no amount of willpower is going to allow me to dance again. it's painful to accept as it brought me Joy. but the real problem is that i am so disabled that it is hard to participate in my own life. i can't exercise because i can barely stand up. and i can hobble, hunched over from the hip at 110 degree angle (sometimes as low as 90%) angle. and face facing the floor for only a couple moments and then MUST sit due to the unbearable pain. and leaning way to the left and very unbalanced. my spine has 'collapsed' from degenerative issues superimposed on the spine mets that i have thoughout my lumbar spine. (and several thoracic as well.) but it is my lumbar spine that has been destroyed from the spine mets.
after mbc diagnosis shock...i was doing really well for the first 3 years. i didn't have the energy i had before mbc, but my quality of life was fine and i didn't look sick and didn't feel sick. this painful spine collapse is/was a game changer. the last 2 years have been rough but these past 6 months have been brutal. what will happen over the next 6 month?. what will happen when i can't even stand at all? it's scary at times.
sorry so long and for sounding negative. but i don't like to complain to family or friends...i try to be a 'trooper'. this is the only place i can really share my thoughts and feelings. thanks for 'listening'.
i did not know about your loss of three teeth. it did sound like it was heading in that direction but last i knew you had only officially lost one. sorry to hear that but so relieved to hear they don't show! and sounds like you have two more that won't show either...yay! let's hope that the front 'iffy' tooth can be saved!!! fingers crossed on your smile😊. what is the next step?
I am in my first three years, and denial works beautifully for me -- although our knowledgeable colleague who left this site would chide me for it if I let it show. I know the time is coming when that won't work anymore. For someone like you -- active, pushed their limits -- this incapacitation is particularly rough. Those who enjoyed being sedentary I imagine can adjust more easily -- but not to pain. That is so bad. You sound so perky on here, I had no idea until last night when I read your posts starting only two months ago. (I am confused about where I posted vs. where you posted.)
From the beginning of my finding dance to pull me out of the doldrums and give me -- as you say -- joy, I worried that I had found something that I can do only when I am completely well, something I will lose with the next assault of mbc on my body. (Looks as though that will be on my lungs.) Or the side effects of the next, more aggressive treatment. I even got my hair back with the treatment I am on. People are surprised when I announce cheerfully that I have mbc. They think I am so brave, resilient -- but that is only because I am not suffering at all, except for sleeping too much.
The other thing I thought of that I can do is photography. I have found taking pictures to help other times I have felt lonely and depressed, and I thought it doesn't require moving much, just getting somewhere. But I realize it requires more than you can do.
Writing, too. You certainly do that well. I hope it is helping you feel engaged. It certainly is rewarding for us readers of your posts. I wonder if you can reach a wider audience somehow.
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