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Velvetjb's Message Board Messages

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hello lucymay

i read your message with interest. being told not to worry about it isn't good enough. yes onj is rare but if you have it then it makes no difference if its rare or not.

i think you need to see a good oral maxilo facial surgeon, one who is up to speed on onj. if the omf doesn't know anything about it then go somewhere else. you need the latest info and advice.

telling you not to stop the fosamax isn't helpful either. i stopped having my bisphosphonate for about a year and my jaw condition did improve. some do not though.

i think you should have an opg x ray, its a revolving x ray of your jaws and from this you could find out exactly what your jawbone is doing, once you know that you can take better advice.

 apparently you don't have to have had cancer to get onj, just having had  bisphosphonates is likely to cause it.

many lawyers have poor and wrong information on their sites so do go for medical advice from someone who knows what they are talking about.

 one of the best things i have done over the years is to rinse 4-5 times a day with hot salty water. this is to prevent infection setting in. when the bone becomes infected the pain is something else and difficult to treat, clindamycin or metronidazole are the drugs of choice.

i can't emphasise enough to find someone who knows about this condition... difficult i know because it is so rare.. but i suspect not as rare as its said to be for dentists fail to diagnose it, likewise oral max fax's haven't the wealth of experience either to diagnose it therefore it isn't reported. i am in uk but i am sure you have a reporting system where you are, to report the adverse effects of drugs. i mean patients can report themselves... not left to doctors to do it.

you might get some help from the american dental society.. i have a feeling dentists have been informed and if you get on that site you might find some info.

here in uk we say leave well alone, for healing can be a huge problem. do not go for any invasive treatments, not jaw cuttting of any description. if bone is coming through leave it, allow it to come through on its own. once its through the saliva degrades it and after a while it turns soft and tears away or you can have debridement, cutting all above the jaw line but not below, not flesh. i have heard of cases never ever healing. some have had titanium jawbone replacement but healing has been the biggest problem.

prof. salvatore ruggerio  [marx et al ] at long island jewish medical centre new york is probably the world expert on this condition, type his name and onj and you will get all the current info. [marx is at miami univ i believe]

check out the american dental society, maybe contact them for someone in your area who could look after you. don't change md until you find the one who knows what they are talking about.

because i am in uk i find it difficult to suggest the best place to contact so if you find any one who is really very helpful please post here for the benefit of others...

also check out the american osteoporosis site.... they have some onj info but also may help with osteoporosis advice.

i hope you get the help you need.. there is a bit above to get you started 

one last thing keep a diary of when you began fosamax, when you noticed any dental/bone/jaw changes with dates and descriptions.. should you ever think about a claim then you have the info in your diary but also for the medic who is going to look after you, it is invaluable 

wishing you well lucymay... velvet jb x... uk

 

On 5/24/2009 Lucymay wrote:

I found this site by Googleing "Exposed jawbone in mouth"

I don't have cancer, although I have been treated several times for skin cancer and go regularly to my Dermatologist for checkups and treatment, as needed.

A few months ago I was looking at my teeth and one of them seemed to be a little "tilted" (bottom teeth).  When I looked closer in the mirror and tried to see the inside surface of my tooth I saw something white on the gum beneath the tooth.   I have a dentist's type small round mirror on a long handle and I used this to check the inside of my lower teeth/jaw...and discovered two spots, one on the right side of my jaw and one on the left side beneath corresponding teeth.   Running my tongue over both of these spots told me they were hard (the left side also feels "ridged", the right side is smooth).

I went to the dentist and he confirmed that it was bone tissue, specifically jawbone, not teeth bone.   He said it is not unheard of, but not common....maybe 5% of the population.   I didn't think, at the time, to remind him that I've been taking Fosomax for years.   Later I saw an advertisement in the newspaper pertaining to a law suit for several things, one being symptoms of osteonecrosis of the jaw (ONJ).   It listed several symptoms, the only one I have is the exposed bone.   I called my MD, who put me on Fosomax because I have osteaoporosis (sp?).   I told her about the jawbone issue, she said, essentially, don't worry about it and not to stop taking the Fosomax.   After a couple of weeks I decided on my own to stop the Fosomax.

I appreciate the candid information and historys that you folks are writing about here.  I've been considering changing MDs, and now I think is a good time to follow through on that.  I like my present MD very much, but I have felt for awhile that I'm not getting the thorough attention that I think I need.   I'm a 77 year old female, in quite good health condition, and I'd like to keep it that way!  (grin)


 

hello Mel

I know it is ages since i was here last but i couldn't find this post again till today. It seems this site has ONJ under bisphosphonates, Zometa side effects. ONJ, Jaw problems and a few others ~ someone organising the site needs to read these and put them under one heading

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html-- " target="_blank" rel="nofollow">http://www.cancercompass.com/common/guidelines.html--

 this is what you asked for over a year ago.

 I hope this finds you Velvet

On 5/2/2007 Velvetjb wrote:

Hi Mel remember this... jot it down as I will fill in the rest when you join

 dir.yahoo.com/Health/Chats_and_Forums

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html-- " target="_blank" rel="nofollow">http://www.cancercompass.com/common/guidelines.html--

 

Hope all is well with you

Velvet x

 

 

 

On 5/1/2007 Mella wrote:

Thanx Velvet can you post a link for the yahoo forum... I am having trouble finding the site.


 

 

Hi Cath

 I have written some notes on this problem before, the problem being is that on this site there isn't a seperate heading for ONJ or bisphosphonates with all messages on. I cannot find my previous notes anywhere now. I can type in a variety of things and still I can't find them. If this was under a seperate heading like breast colon ovarian etc it would make things easier.

I have had ONJ for several years. I suspected it and diagnosed it myself in 2002, pressed for more info in 2003 told to remain on Zometa. then in 2004 it was finally confirmed and off zometa. I have spent a lot of time researching this and it seems that until a case in brought to the companies it is unlikely to get much media attention.

 Still I find doctors and dental surgeons alike know nothing about this condition, so I have found my own way reading through the maze of little info. One site you can look up is Professor Salvatore Ruggiero at LOng Island Jewish Medical centre, He and Marx et all warned the drugs companies 99/2000 that they were seeing this condition and it was they who pressed the FDA to ensure the drug companies listed this condition in their side effects.

Still 8 years on little is known how it might be caused, no evidence links the Bisphosphonate induced Osteonecrosis of the jawbone to Biphosphonates or any one of them in particular. No case to my knowledge has yet been tried in the courts.

 My knowledge so far is

Zometa is more potent than any other Bisphosphonate

BISONJ can be seen after taking BIS

ONJ is difficult to diagnose.

Onj causes much suffereing to those affected.

Numbers affected are presently misleading as  it is not diagnosed accurately, if at all.

There appears to be a link with the strength and duration of time the drug is taken.

All advice is to leave well alone.

No surgery should be carried out to correct dying jawbones. it has failed to heal.

Extrusion of jawbone through the gums can be debrided but no invasive procedures are recommended as healing is delayed considerably.

All dental work should be completed and healed before taking the drug.

 Hot salty water rinses are as effective at reducing the risk of infection as any prescribed mouthwashes in my own experience (5 times daily)

It has been proposed that only myleoma patients are affected. if you have had chemotherapy, if you have had steroids, had cancer, only in cases where BIS is given IV. In the cases I have heard about, this doesn't seem to be the case. I had proposed to start an ONJ UK website but I have stage IV cancer and have been too ill to follow through with this.

National dental associations are now getting to grips with this and if you look up various countries' sites you will gather more info, more than oncology sites.

 

I hope this helps

Velvet (UK)

 

Hello Kathy

The MRI is much more detailed than a bone scan. I like the bone scan because I can see it and have copy whereas I can't the MRI because it is digital. The MRI is a much more expensive scan than the bone scan so I am told.

If nothing shows on the MRI then you can safely say that there is nothing to be seen, no tumours but something must show to account for your pain. It could be muscular and you maybe should see a pain consultant who can give you a good analgesia.

I sense in you post that you are convinced that you have tumours in the spine, in some ways I think you are experiencing too wide and area for spinal bone tumour pain and I say this only from experience not because I have any medical quals. The area you describe is more like muscular or nerve pain.

Hope you get this reolved,

Velvet

Hi Mel remember this... jot it down as I will fill in the rest when you join

 dir.yahoo.com/Health/Chats_and_Forums

velvetjg@uk

 

Hope all is well with you

Velvet x

 

 

 

On 5/1/2007 Mella wrote:

Thanx Velvet can you post a link for the yahoo forum... I am having trouble finding the site.


 

Hi Mel, I read you reply from today but then the computer did something odd and i lost it. I was hoping you would join the forum recommended as I can give you my home email address. Then we can keep in touch.

However I did read part of you reply re coming off the drug.

Again I can't advise you but if you have been diagnosed with ONJ then all the info at the moment says come off it although there are one or two that say it doesn't make any difference because the drug is in the body for years. Get some way to a diagnosis with OPG X ray and bone density scan to see if your bones are 'up to scratch' Do you really need to be on the drug?

 Hope this helps yo come to a decision

Velvet

Hi Roseanne.

 I don't know whether I have replied to you or not, the cancer compass site isn't downloading all the pages today, something odd going on.

However low the risk it can still happen to you (or me) You are lucky in that you have had some warning that ONJ can happen ~ I had no warning, it was me that informed the oncologist, me that diagnosed the problem but the oral max fax did know about it and was very good but then retired and as yet no replacement for him. I am seeing someone locally (my oncolgy hospital is the Marsden in London some 70+. miles from me)

 I can not advise you what to do but can give you some facts and the benefit of my unfortunate experience,

What you are writing, sorry to tell you this, does not sound too hopeful.

Did you have just the tooth Xrayed if so get an OPG done at your hospital (won't cost ) or if NHS dental surgeon ask for one. It is a panoramic Xray of all your jaws and teeth.

You could ask for a Dexa scan to be done of your bones to see if the osteoporosis needs any treatment, no point in taking a drug if you don't need it.

Ask if you could change to pamidronate as this is less potent than Zometa but is over 90 minutes instead of 15. Ask if you could change the interval inbetween IV infusions, maybe to 6 weekly.

 

What is know about ONJ is the potency and the legth of treatment you have had affects your chances of ONJ though not always.

I am not surprised that doctors don't know much about it. It is so new that there isn't that much data on it. New for medics generally.

You can look up Ruggiero and Marx 'Bisphosphonate induced osteonecrosis of the jawbone,' rather heavy reading but you will learn so much. You could print off and take to your oncologist or suggest he read it. Likewise the dentist.

But there is no treatment other than symptomatic treatment and that means treating symptoms as they appear, infections with antibiotics, pain with analgesia but what ever you do do NOT have any invasive treatment ~ leave well alone, cutting the gum and/or removing the bone will surely make it worse. This is fact not experience. 

My jawbone problem has been just horrendous. I have BC mest to the bone and all the pain I have had with those is nothing like the pain I get from the jawbone.

 I sincerely hope this has not alarmed you but I can only write from experience and from studying ONJ over the last 3-4 years.

I was hoping to set up a web site called ONJ UK but I have been too ill thiese last few months and this idea is on the 'back burner' for a while.

 I hope you don't have ONJ, please let me know how you are doing.

Velvet (UK)

On 3/17/2006 Roseann wrote:

Velvetjb Saw your message on jaw bone problems and felt I had to reply.Last November I noticed a swelling and tenderness on my lower jaw bone I have not had teeth there for many years,on seeing my dentist for a normal checkup in January he xrayed and said it might be a bit of tooth and as there was no infection he would leave well alone,curious as there had been no teeth there for years.I returned 2 weeks later as I was still having problems,he xrayed again and said he thought it was bone under the gum.He referred me to a maxillofacial surgeon I am still waiting for the appointment here in the UK. I am due to have infusions of zolendronate (bisphosphonate)this month but I am now wondering what to do?.I have osteoporosis and have taken oral bisphosphonates for 1 year and this was 9 years ago, the risk of ONJis supposed to be low with oral bisphosphonate.Doctors here dont seem to know much about ONJ.Can you keep me posted as to how you get on

 

Hello.

Thank you for your post which I have only just seen. Yours is a very interesting case. Did your dentist describe your condition as osteonecrosis and have you had any follow up Xrays or scans to see how the rest of your jawbone is reacting?

I only hope you do not have ONJ as it is quite a nasty condition. Has anyone explained to you why this might be happening?

Has anyone else looked at your jawbone?

I hope the bits of bone that came thorugh have disappeared and all is well for you now, thanks again for responding to my post.

 Velvet (UK)

 

On 2/9/2007 Vicki Lynn wrote:

I had BC in 1998 and went through chemo and radiation.  This past summer I started to have a lot of back pain.  Most of the pain is in the thoracic area, then lower back, and neck.  Nothing seems to help the pain.  My family doctor gave me musle relaxants, but that didn't help.  He also had me go to physical therapy.  That didn't help.  All the time I kept trying to tell him this was not a muscle issue but the spine itself.  I had an MRI of the lumbar and a cyst/tumor is seen in the T-12 thoracic area.  My family doctor said he did not know what else to do and suggested I go see a pain management doctor. He knows I had cancer in the past. Is it time to get a new family doctor or what?  I decided to see my oncologist before seeing a pain doctor.  The oncologist did a PET Scan and it showed no cancer.  I don't know if PET Scans indicate if there is cancer in the bone or if you have to have other tests. I am constantly in pain day and night.  I have had two cortisone shots in the spine area two weeks ago.  No much resulted from that.  I have another appointment for this coming Tuesday for cortisone shots.  This doctor is not sure that the cortisone shots are going to work.  I am suppose to get another MRI done the beginning of April and my oncologist has been so kind and wants to see me after I have the MRI and if the shots are unsucessful.  Has anyone had cancer of the spine/tumor on spine/vertabrae?  Thanks for our help!

Hello Vicky

I had BC in 1996 and the disease progressed in 2001 with bony sites. I still have only bony sites and no spread to the soft tissues. I am sorry to hear about your back pain and your concern that things may have spread to the spine.

You are being vigilant which is what we need to do.

I had a bone scan, full body and this picked up the disease in the bones wherever they were, initially in the pelvis and sternum and now in ribs, collar bone, skull, hips and spine. The pain is very distinct, a gnawing pain that seems to be worse during the night and quite different to nerve pain or from previous sciatica or general back problems.

I have been on a variety of aromatase inhibitors, unfortunately I have developed resitance to some of them but still have a number of treatment options.

 I was interseted to hear about your scans and the PET and MRI should have picked up any abnormalities but my preference is the bone scan that scans the whole skeleton. You simply get a the whole bony structure scanned, this is why I prefer this type of diagnostic tool. I have had one done just about every 6 months for the last 6-7 years. Also a plain Xray will pick up a bony site if it has developed to a certain amount.

 I am inclined to think your scan is OK though follow up the cyst that was found on the MRI. You could also ask for a blood test (not costly) to measure your tumour markers CA 153 and other relevant blood markers. The fact that your pain is still evident requires further investigation.

Steroid shots have worked in the past for me, then not worked, quite why, I do not know, one given into a rib junction in September worked beautifully and then the next in exactly the same place in January didn't touch me. But I had some palliative radiotherapy to a number of sites and the pain is reducing all the time, it can take up to 12 weeks for the full effect but already I am reducing the pain medication and feel a whole lot better for it.

 I know it is a scary time watching and waiting but I think you are following up the best way you can. I know you are in pain but I hope the pain is something simple and maybe your best bet is to see a pain consultant. You could also ask to see an oncologist and ask to have your scan re-read (another opinion doen't hurt)

 I saw a pain consultant and eventually got on the correct dose of morphine (don't take much) and live my life to the full, yes, I have bony disease but that won't stop me from doing what I want to, I just treat my disease as any other chronic disease and get on with life.

I wish you well, Velvet (UK)

 


 

Hello Rosie P. SALT. salt is the one thing that will dissolve mucus, suggest lots of gargles and rinse well away. The salt will only attack the mucus in the throat/mouth but to remove it from further down or in the lungs, i.e. to stop production in the first place, you need to find a good expectorant or ask the doctors to prescribe. Hope this helps Velvet (UK)
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