Diagnosed with recurrence of breast cancer, now in the bones, in September '14. After about a year on Letrozole and Denusomab, I was truly suffering with virtually every common side effect. In addition, I had sore gums, inflammation, toothache (though all my teeth are implants!). I was prescibed Tamoxifen instead of Letrozole, but it was another few months before it was discovered that I may have osteonecrosis of the jaw - caused by the Denusomab. So I came off that about a year ago. Despite that the jaw has worsened and I now have exposed dead bone in my mouth and a worsening of pain in the areas of bone mets.
So sorry to hear this about your jaw. I think all of us on bone strengtheners are aware this can happen but I’m not sure if anyone else on the forum has actually developed it. I’m sure they will be along to add advice if they have and I’m sorry I can’t offer anything else other than a big welcome to the secondaries part of the forum - a place none of us want to be!
Take care and I hope some form of treatment may be availalge to help your discomfort and pains.
Oh …this onj thingy is something we are all scared of happening. I’m having lots of teeth probs at moment and plan to ask oncologist to see the max fill dentist.
Unfortunately …a lot of us have old teeth from primary chemo in my case and dentistry has to be non invasive but i think its time more reasearch was done on this side effect as its quite a new drug and realistically …I think we are guinea pigs !
I hope that it doesn’t cause you too many problems .
Carolyn xxxx
Oh dear, no, I havent had that yet…im grateful to say.
i am so sorry to hear about your jaw necrosis. did they think it may be because all your teeth are implants?
I dont see why it should be …one would think should be the opposite as there are no teeth needing fillings!
the only comfort I can offer, is that my dentist had the first patient who got jaw necrosis. And he told me that now the lady is off the drugs, her jaw has started to grow back again…maybe things will feel worse before they improve? Who knws, maybe the jaw pain is related to regrowth?
i am so sorry tho, it must be really awful and eating must be difficult. Do let us know how things go.xxx
love and hugsxx
Moijan???
i too have this jaw disease now…like you, Unfort it was caused by the bone strengthening injection…
so so frustrating as I suffered for months and months and even asked my onc if I could have possibly have got this side effect…was told no it really only comes in those who have had dental treatment…it wasn’t until I had swollen up like a balloon, could not open my mouth more than about 2 inches…
i was was so badly infected and had emergency appointment with a max fax consultant - straight away diagnosed the condition and after strong antibiotics and liquid morphine, it thankfully got easier and could eventually start to eat and open mouth more…
i too have protruding bone in my mouth which has got bit bigger over time, but now had this disease for over a year now…touch wood whilst I do get some aggregation and sometimes can get pockets of a nasty smell as slight hole by my last tooth I have managed to live with it ok so far…
i stopped taking the antibiotic they prescribe for me to be on for life and now take c silver every day, I also go into a hyperbaric oxygen tank as often as I can, try weekly, but very least monthly which does help bone healing…
i personally do not think the oncologists are clued up enough on side effects of some of these drugs…I virtually contracted this disease after only a couple of injections, but I was taking it for over a year before I came off it as it was not diagnosed…everyone thought it was just nasty mouth ulcers and perforated ear drum causing the problems ?
Hello dawn
I have been reading your posts with interest as I also doubt denosumab too. I have been on it a year now …after six months I got terrible bone pain for two weeks out of four so now have it six weekly which helps a lot
I have terrible teeth since chemo in 2004 and haven’t really got a decent one so obviously dental work is going to be necessary for me and the onj is always on our minds .
Although, I try not to …do read a lot about it on other websites …the jury seems to be out on its long term effect …
Thanks for that Dawn, yes, biphosphonates can cause onj too. The research hows a slightly higher risk for denusamab…I have great respect fro chris Woollams site…very ethical and usefulxx
Hi dawn. I have been looking for a tread that could give me some answers to why my jaw and teeth are numb on the left lower side and the rest of my jaw teeth and mouth are so sore. The pain varies from a dull ache to sharp shooting pains. My teeth hurt and mouth is very sensitive, even a polo mint will burn it. I started on denosub june 2015. I had a rare reaction to it and spent 6 months in and out of hospital with hypocalcium. My body could’nt hold calcium. Apparently there was only 30 of us in the world. Well once i got over that i was put on zometa jan 2016. I was on and off it during chemo bouts and calcium levels. Each time it knocked me off my feet with pain and flu like symptoms 2 out of 4 weekly cycle.
The last two i had were worse. I wasnt going to have the dec one as the nov one i was ill for 3 out of the 4 weeks but pain was so bad i had to have it. This time again 3 weeks in bed really unwell. Ive been having headaches and all this mouth problem. Ive got mri scans on head and liver friday and max fax booked for following monday but im so scared. I cant sleep im just so worried its gone into my brain. do the symptoms im having relate to the jaw disease you have? I have bone mets in my neck and right side of the skull so its something ive always dreaded. My onc says it cant spread from bone to organs. It goes the route it origionally went in my case through my blood. i’d be grateful if you or capriati could offer any comparison to the symptoms. Part of me would be happy if it was the jaw thing rather than brain mets. Joijan and carolyn you must be wondering whats going on with me. Im popping up everywhere. Basically ive got bone mets head to toe. Also liver and sternham mets. ive had femur nails put in my thighs. Im doing ok tho to look at me i look ok apparently lol. This is the most scared ive been since diognosis. Please help. Sue xx
Hello sue
Don’t worry about posting …we like to hear from you.I’m on denosunab and have been for over a year …I just had it last Wednesday and this time …feel jaw ache and sensitive teeth too …but i did have a surface filling on xmas eve …I’m having a scan in March and will be interested if this bone juice is working still …if not …I feel I want to stop it. My old oncologist said before she retired earlier this year to eat plenty of dairy stuff for the bones so I do eat butter and cheese more …so could have a heart attack with the extra cholesterol now !!