70518members
370906posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Osteonecrosis of the jaw

21 REPLIES 21
Premmious
Member

Re: Osteonecrosis of the jaw

These doctors don’t listen to our symptoms that’s the problem and I am so frustrated.

Capriati
Member

Re: Osteonecrosis of the jaw

Hi Maldives

I'm so sorry that you seem to be having an horrendous time.  Most of us have a grim time, but you seem to be sufferring more than most.

My teeth/jaw problems started after chemotherapy and long term Tamoxifen in 1994 as treatment after radical mastectomy.  It settled down a bit after stopping Tamox 5 years later.  However my teeth continued to become loose and I eventually decided on implants.  At this point I did not put two and two together re the cancer treatment and my loose teeth were constatntly attributed to smoking (I HAVE NEVER SMOKED).  It was always denied that chemotherapy and other cancer drugs played any part in my loosening teeth.

I was clear of cancer until summer 2014 when I had pain in the shin and a bit of discomfort in the breast bone.  Diagnosed with widespread bone mets, mainly in spine, skull, jaw, sacrum and long bones.  Initially prescribed Letrozole and Ibandronic Acid tabs (which caused burning in my throat and indigestion). Ibandronic Acid was replaced with a monthly injection of Denusumab.  After a year of Letrozole, I was almost suicidal; though it seemed to keep the cancer at bay, the side effects made life not worth living.  I was then given Tamox, which was better but not by much and I don't think it's working as well as Letrozole.  After a year of Denusumab, the dentist identified the problem in my mouth.  I came off Denusumab with no alternative, as all these bone strengtheners have the same risk. I suspect that Tamox also contributes to the jaw problem.  

I'm not sure where to go next.  I feel that everything on offer is more damaging than the cancer itself.

I think that perhaps smaller doses are the answer - or doses 'tailored' to each individual. That suggestion was not welcomed by my Onc. 

I am supported by my homeopath with pain relief and keeping me upbeat.  I also take a range of supplements and ESSIAC herbal infusion.  (look it up everybody)

Best of luck, Maldives,

Hugs

C

x

Capriati
Member

Re: Osteonecrosis of the jaw

Yes, Denusumab,
c
x
Capriati
Member

Re: Osteonecrosis of the jaw

Hi Moijan

I have recently had new set of scans and see the Onc this coming Friday, so I'll know a bit more after that.  Not yet sure about the availability of Hyperbaric Oxygen Therapy, but I do know that most of the drugs on offer are  not likely to be beneficial to the osteonecropsis of the jaw.

My nearest hospital is an hour's drive away, but the cancer treament is usually at another one which is nearer to a two hour drive. 

You are quite right, the medics seem not to want to take notice of drug-related symptoms.  I know it's 'no pain, no gain' but there are limits.  We do really want to have some quality af life and they should be listening.

Has anybody ever seen their consultant taking notes about these symptoms?  If they did they may eventually notice some repeating negative symptom patterns to pass on to the pharmacutical industry. 

It was the dentist that reported his concern about the Denusumab and the state of my jaw and referred my to the Dental hosptial - but it's taken a year for it to be confirmed.

I hope that the dangers of this drug become more widely known so that early problems can be dealt with promptly.

Wishing you all the best on your health journey,

C

Capriati
Member

Re: Osteonecrosis of the jaw

Hi Dawn

Yes, I too had about a year before they diagnosed it - passed around like a hot potato from Oncology, to ENT, to Fac/Max and back again - trying to blame everything except their blessed drugs!

In the meantime a lot of pain with inflammation not made better by antibiotics.  It finally eased up after a Balloon Synoplasty procedure, which cleared out my sinuses!!?? 

Not too bad now, though like you, I have a peculiar taste in my mouth and mouth odour, no matter how many times I clean my teeth and mouth rinse.

My query now is whether or not the Tamoxifen is continuing to contribute to the damage, but of course, guess what, nobody knows!

The motto is 'keep bu**ering on'!

 

Good Luck and best wishes,

C

x

 

Capriati
Member

Re: Osteonecrosis of the jaw

Thanks Nicky. It's so good to know that you care.
C x
Maldives
Member

Re: Osteonecrosis of the jaw

Thanks carolyn. Keep an eye on the jaw. My onc says you shouldnt have the juice if your jaw hurts. Xxx
Carolyn52
Member

Re: Osteonecrosis of the jaw

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 !!
Maldives
Member

Re: Osteonecrosis of the jaw

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
Moijan
Member

Re: Osteonecrosis of the jaw

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

 

Moijanxx

Moijan
Member

Re: Osteonecrosis of the jaw

Hi Dawn,

 

thank you So much for posting on here....it will no doubt scare some people, but im so very glad you have told us..we need to know, because then -if we get symptoms we can rush off to get them assessed. My dentist did

say that onj rarely hurts,but from your info, clearly it does...at least can do...so now we know.thank youxx

 

I do wish you a speedy recovery from it...please keep us updated as to how it goes.

 

love and hugs,

 

Moijan💚💚💚

Dawnp
Member

Re: Osteonecrosis of the jaw

Hi....from memory if you do need any dental work doing you have to come off the injection for a while to clear it from your system...so please ensure your dentist knows your having this injection....

 

i follow chris Woollams as well and have added one of his articles on bisphonates, of which he actually gives them good credit ......

 

take care.....


Bisphonates in cancer treatment
Share this article:-
Could Bisphonates save women from Breast Cancer chemotherapy?

Bisphonates are drugs that strengthen your bones. These bone drugs, as they are often called, are used to treat osteoporosis patients and people with multiple myeloma, a cancer of the white cells that weakens bone tissue. Now, research is showing that their use may well prevent recurrence in cancers like breast cancer. And if that turns out to be the case, bisphonates could be a new cancer treatment and even replace the need for certain breast cancer chemotherapy drugs.

Oestrogen-driven Breast Cancer

Women with oestrogen positive breast cancer typically receive several general chemotherapy drugs and surgery to remove the lump. Then they may well be given 5 years of Tamoxifen treatment, followed by three years of an Aromatase inhibitor like Arimidex.

The initial drugs aim to check the cancer´s growth prior to surgery. The Tamoxifen aims to block receptor sites on healthy cell walls, from attack by dangerous oestrogens like oestradiol, and then the Aromatase Inhibitors aim to cut production of oestrogen in the body. All these drugs are covered more fully in our A to Z guide to cancer drugs, click here.

Oestrogen is also involved in the density of the bone tissue, and women on Aromatase Inhibitors can suffer osteoporosis.

A couple of months ago, regular readers of icon´s Cancer Watch research centre will have noticed some research where women who were treated with bisphonates (an injection every 6 months) actually had an improved rate of survival from breast cancer - by about a third.

Bisphonates may block some breast cancer spread

When oestrogen-driven breast cancers (and indeed, many cancers) spread, cells are fired off from the tumour and they often go to the bone or bone marrow. Here they cause a weakening, which in turn causes growth factors to be produced. And these growth factors are used by the cancer to aid its own growth. Bisphonates seem capable of blocking all this.

There have actually been several research studies done on this issue and the effectiveness of this strategy seems dose-dependent. (In other words, it may be that it only works above certain levels). However, if the findings can be confirmed, it looks like women with oestrogen-driven breast cancer may need less chemotherapy drugs and bisphonates could, instead, prove their best friend.

Other cancers too!

Of course, it is not just breast cancer patients that may benefit. Many cancers are now known to be driven by the female sex-hormone oestrogen, and not just female cancers. Research has shown that some colon cancers, lung cancers and even prostate and testicular cancers can be oestrogen driven. Blocking the production of the stimulating hormone in the bone may be an important step in treatment programmes, rather that using general chemotherapy that merely attacks all rapidly dividing cells, whether they be cancer cells, intestinal cells, hair or nail cells.

In 2010 there will be the results of a trial involving 3000 women with breast cancer using a stronger Bisphonate, Zometa. Other bisphonates include the drugs Clondronate (Bonefos), Ibandronic acid (Bondranat), Pamidronate and Zoledronic acid.

We will keep you posted.

Share this article:-
Want the latest news on this?
Email:
Add to mailing list
CANCERactive - leading the way in Integrative Oncology.
It's the future of cancer treatment.



Carolyn52
Member

Re: Osteonecrosis of the jaw

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 ....
Dawnp
Member

Re: Osteonecrosis of the jaw

Hi Moijan

 

it was Denusomab....

 

my my dentist has been great and keeps a regular eye on me and measures the bone protruding each time....he also coated my teeth...not quite sure what he did, but apparently it's a treatment that they give to children before doing fillings....it was supposed to seal the teeth to avoid infection etc.....

 

no no treatment at the mo, other than the daily antibiotic, of which I have chosen to go for natural option with c silver as was trying to reduce the toxic load in my body.....

 

i also see see the max fax when needed or once a year, so far dealing with it......

 

the he oxygen treatment is something I do for myself as not available on nhs and it's not a recognised treatment so no prescription.....you need to find a ms society near you as they are the ones that have the chambers or if you are by the coast - there are sometimes ones there for divers....I am lucky as there is one about 30mins away....it is £17 per dive.....apparently oxygen treatment at same time as undertaking chemo is meant to make chemo more effective....

 

i had an apology from my onc and said he had never come across it before and yet my max fax consultant said it is quite common 😨 .....after that the max fax and onc did have a meeting, so hoping it may help someone else down the line to not have to suffer.....

 

also didn't mention but since not having the injection I have been no worse off in respect of bone pain and took up yoga and found that really helps with the bone mets....well for me it has, although very nervous about doing it at first.....

 

love and healing.....

 

dawn❤️

Moijan
Member

Re: Osteonecrosis of the jaw

Dawnp,

 

are you referring to Denusomab? Or Zometa? I know both can do this..

Mx

Moijan
Member

Re: Osteonecrosis of the jaw

Hi Dawnp

 

my goodness, you too have had/are having a bad time! So sorryxx and as the lovely Carolyn said - we do all

dread this possibility...and it sounds as if you werent on the drug for very long either.!

 

i do wish there was something I could say or do that might help.  What plans have they got for your treatment as regards your mouth? The hyperbaric oxygen sounds a really good idea, but this isnt generally available is it? Or maybe, once prescribed you can have it....do you have to travel far?

 

am so blessed with an excellent dentist, but I have to agree with your sentiments re oncs. In general....

 

.I suspect that curing the cancer is their main concern and they must get lots of people asking anxious questions re this topic, maybe they tend to deflect them, as most people seem to get by without such a horrid side effect!

 

what did your onc say when it was confirmed?

 

i hope your dentist s supportive and has given you some hopeful support?

 

please come back and tell us how things are going?

 

love and hugs,

 

Moijanxx💚💚💚

Dawnp
Member

Re: Osteonecrosis of the jaw

Hi....

 

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 😡

Moijan
Member

Re: Osteonecrosis of the jaw

P.s. Capriati,

 

I did reply on your duplicate thread last night, xxx

Moijan💚💚💚

Moijan
Member

Re: Osteonecrosis of the jaw

Hi Capriati,

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💚💚💚

Carolyn52
Member

Re: Osteonecrosis of the jaw

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
nicky08
Community Champion

Re: Osteonecrosis of the jaw

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.

Nicky x

Capriati
Member

Osteonecrosis of the jaw

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.

 

Has anyone else had a similar problem? 

 

Capriati