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Hi Louishenry
Many thanks for your reply. I”ll certainly discuss again with my Maxillofacial doctor about shaving off the exposed bone growth, but it might have to wait some months to see whether my current bone growth stops, which will also give my immunity levels chance to improve after my recent second sct.
Jan
Hi,
Well, the maxillo facial specialist has confirmed that I do have Osteonecrosis of the jaw.
It has healed up very well following the operation I had to take a biopsy and generally clean up the excess bone growth on my lower gum. I am delighted to say that the CINDAMYCIN antibiotic has got rid of the infection that was causing pain.
I expect to resume my Zometa infusions at the end of the month (I’ve had a 6 month break during this) and it will be 3 monthly now, instead of monthly.
I have no mouth pain and continue to clean my teeth as normal and use a mouthwash. I avoid certain foods like crisps as they could jab into that area and am conscious of getting anything lodged in the hollow that remains.
Unfortunately, I will not be able to have lower dentures made, as they would irritate too much and cause problems.
I continue to feel well and happy.
Best wishes to all,
MichaelC
Hi Jan and others
I have found your posts very helpful. I have been on Zometa from about 2012 – four weekly until three cycles ago when I ask my Consultant if I could come off. I had read it stays in the system and was finding the logistics of getting to hospital for the infusions more and more difficult. I had one break of three months so I could have a tooth root removed.
I have been on eight weekly infusions for last three cycles. I have a reduced dose because of kidney damage.
Two months ago I realised I had a problem under my denture at the site of an ulcer. Eventually went to Dentist last week to be fast tracked to Orthodontist Specialist tomorrow. In the short time I have been waiting I can feel bone growing in my gum and my jaw is very painful. I feel sure it os ONJ. I hope they can plane it off and hope I don’t get caught up in any funding problems.
Best wishes to all.
Mavis
(Diagnosed 2010. CDT 2011 in complete remission till about six months ago. PPs now slowy rising.)
Hello Mavis
It’s good to read that you have remained in remission since 2011. Hopefully your PPs will only rise very slowly and it will be sometime before you require further treatment. I had four cycles of CDT in 2010 followed by an SCT, but I relapsed in 2015 requiring 8 cycles of VCD with a second SCT in Sept 2016. My light chains have increased quite a bit since Christmas and I now wait anxiously for this month’s results to find out whether there is another significant increase in levels which would mean starting treatment quite soon.
I’m sorry to hear you think that you might have ONJ. I hope the visit to see the Orthodontist Specialist tomorrow will provide you with some answers, especially as you are finding the area around your gum and jaw under your dentures very painful.
Although my additional bone growth initially presented itself like a small ulcer in the upper part of my palette, a scan showed quite a large additional patch of bone growing beneath the gum almost running parallel to the roots of my upper molars. This additional bone has slowly pushed its way through the upper palette and now measures around 2cm in length and is about half a centimetre in height. Thankfully at present there is no pain, infection or sore patches around the growth. My Maxillofacial specialist opted not to shave off the additional bone growth due to possible problems with wound closure if the bone continued to grow especially as Zometa remains in your body for 5+ years.
Perhaps you can ask the Orthodontist Specialist for a scan of your jaw bone to see whether there is any additional bone growth underneath the gum which would also determine the best treatment path to ensure you are pain free and that your dentures are comfortable when you eat. Why would you get caught up with funding problems?
All the best for tomorrow.
Jan x
Hi,
It’s a damned nuisance having BRONJ, but at least we’re still here.
I have a full set of top dentures, and used to have partial bottom ones. Obviously, I cannot wear the bottom ones any more, as they would rub against the lower gum/bone.
I have some exposed bone, which has increased lately, bit my Maxillo specialist is leaving it be.
I did have bone shaved and chiselled off initially, when they drilled out a tiny square sample for testing.
So I am managing to eat a bit like a rabbit, having no useful molars. I brush with an extra soft toothbrush, use mouthwash morning and night… and try not to traumatize the gums … no crisps or sharp chips etc.
So, apart from that; to say I have Lymphoma AND Multiple Myeloma, I am doing great after being diagnosed in 2013.
Good luck to all you fellows out there… keep smiling… or maybe just a grin!
x
Mike
Hi Jan and Michael
Thank you for taking the time to reply to my post. It is good to know that others are cheerfully coping with the Google’s this horrible MM throws at us.
I was diagnosed with Oesteonecrosis. I have to say that on this occasion the NHS has been marvellous to me. In less than a fortnight from my visit to the Dentist, I was seen by the Consultant, was xrayed twice, photographed, prescribed antibiotics and mouth wash, had my denture altered to relieve pressure, had blood tests and had a CT scan! I can’t believe how quickly things moved.
My upper gums already feel more comfortable although I think I will have to have the bone shaved to stop another ulcer. I am now awaiting another appointment so they can share the outcomes of the various tests.
JAN, good to get news of you. Like me, still battling on. I do hope your PP level is behaving itself so you can escape the next level of treatment for the time being.
MICHAEL, I really do sympathise with your problem with your lower jaw. I feel lucky now that I couldn’t get on with my lower dentures so have never used them! If I had, maybe I would also be dealing with problems on my bottom jaw. Keep fighting.
Two amusing things happened at the Dental Department. First, two trainee dentists were able to look at the growth in my mouth, and I was asked to sign to say that the photos they had taken could be used in teaching materials! Fame at last! Obviously now so many more of us are living longer with MM dentists need to be aware of the possible side effects. I go to see the Oncologist in a fortnight so will see if he says I should resume Zometa. I suspect he will because of the sad condition of my bones.
Best wishes to you both and all out there.
As friend Andy says “every day is a gift.”
Mavis x
Hi Maureen and Michael
Mavis, you must be very relieved to know that a thorough check up of what’s happening beneath your ulcer has been carried out so quickly and efficiently by the NHS. Let’s hope a good plan of action will be drawn up for proper treatment to help you maintain the good fit and comfort of your dentures.
Reading through some of the reports online, Osteonecrosis seems to affect some myeloma patients who have received long term bisphosphonates for three years or more. According to the American Myeloma Beacon website, there appears to be a consensus of management for monthly Zometa infusions in America to be offered for a maximum of 2 years and then reduced or withdrawn for a period of time in order to try to avoid the development of ONJ, mainly due to the drug remaining active in our systems for five years+ once stopped.
I started on bisphosphonate tablets after my first stem cell transplant in August 2010, but changed to monthly Zometa once the drug was approved by NICE around 2012. When I visited the Maxillofacial specialist in February 2015, he discussed shaving off the exposed bone but felt a watch and wait approach was advisable especially as the bone was in the upper palette rather than under my teeth. Over the last three years, the growth of exposed bone has certainly increased and it does interfere with eating, speaking and oral hygiene procedures with food continually getting trapped in-between the bone and gum, which I suppose is why mouth wash is recommended together with regular monitoring for possible gum infection.
However I’m extremely fortunate not have the discomfort and pain from an exposed bone underneath dentures which both yourself and Michael are suffering. In these circumstances at least there is the option of surgery to shave or remove the exposed bone which could be potentially curative. Although there does appear to be the need to continually be monitored to see whether gums heal over, or whether the exposed bone continues to grow or become infected. It’s definitely an ongoing problem.
Unfortunately I have just relapsed after 20 months of my second Sct. I had hoped to achieve a similar remission period of five years following my first Sct. I caught a cold virus a year last September which increased my light chains quite considerably from 100 to last month’s lelvel of 2400 and rising by 500 last week. With the myeloma becoming more active, I visited clinic last Thursday to sign up for my 3rd line treat of Ixazomib, Revlimid and Dex. I started the drugs yesterday and already experiencing the steroid sleepless nights following 40 mg dose. Fingers crossed the treatment will work and the side effects won’t be too harsh.
Best wishes. Janice x
Hi Jan,
Sorry to hear about your readings. I hope you are coping okay (have we a choice?)
very best wishes,
Michael
Hi Mavis,
Glad to hear that you find things funny… well done you!
I doubt if even the saddest person will be into BRONJ porn, so doubt if your photos will become viral :-))
I’m going to see the dental hygienist tomorrow for the first time since having my BRONJ. I have been super careful to notify them to be gentle.
I wonder if anyone knows how long Zometa stays in your system, (I have heard about 5 years) and if BRONJ still persists after that?
Best wishes,
Michael
Hi Michael
I hope the dental hygienist goes OK tomorrow for you.
Many thanks for your kind wishes about coping with my new treatment. If you’d asked me yesterday then I’d have said very badly due to 24 hrs of harsh withdrawal symptoms from 40 mg of high dose steroids, which was quite a shock to my system after only experiencing 20 mg of steroids per week on my previous 2 treatments. But as you say, we don’t really have a choice and I’m thankful I still have a treatment to try. My husband has learnt to keep out of my way to avoid my emotional mood swings from the steroids.
Regards Jan
Hi Jan,
Well done. Don’t be too hard on hubby! ….Good days/ bad days.
Those steroids are tough!
All went well at the hygienist today. I did explain the possible problems again, and she was most sympathetic and helpful, and subsequently very gentle.
Kind regards,
Michael
Hi Jan
I do hope that you settle into the new drug regime and that it works to bring your PP readings down. Sympathise about the effect of the steroids. One thing I found though, is that it really helped my joint pain.
I waited to reply as I was seeing my Consultant today. My PP has just gone up by 1 to 10 in three months so no treatment needed yet, but he said I must chase the dental department up about a follow up appointment to get results of the CT scan. No Zometa for the time being. I am hoping to have a very long break from it. I asked the question “if it stays in your system for 5 years why do I need to keep on taking it?” I don’t think they know the answer as it is all so new. I think in the States they only do 2 years. It will be interesting to see if my PP goes up faster now I am off it.
Do hope things work out well for you. I just thank a God that there are so many more options for treatment than there were when I was first diagnosed.
Hi Michael
Glad all went well with the hygienist. I don’t know about you, but I think I am going to become fanatical about mouth hygiene now!
Love and best wishes to you both.
Mavis x
Hi Mavis
It certainly is worrying when your myeloma levels start to increase over a short period, but you are definitely right in that there are now many more treatments available than since we were diagnosed and many more in development, which is so hopeful for the future. When you get the results of your CT scan, if possible see whether you can get a copy of some of the main images to show your usual dentist so that they are aware of what’s happening in your mouth as regards any future treatment/cleaning.
Zometa monthly infusions were only approved for use in the NHS in 2011/12, which is when I first started Zometa. In America they appear to be highlighting possible ONJ issues for a small proportion of myeloma patients who have been receiving the drug monthly for 3 years or longer. Therefore with the drug being quite new, it will take sometime to see whether the number of cases with ONJ increases over the coming years, especially as it’s now being used for breast cancer and prostrate cancer patients. I wouldn’t have known I had a problem until a little bit of bone started to become exposed in my mouth. Perhaps those patients on the drug for 3 years or more should have yearly CT scans of their mouths?
I have just completed my first week on my new treatment. As usual nausea remains an issue for me and I learnt today that the anti nausea drugs which I have taken in the past, and have been effective, are not suitable for long term use due to possible negative side effects to the heart. I’ll have to trial some other anti nausea drugs over the coming months. My PN in my legs is starting to tingle and throb, but I’m hoping this doesn’t get too bad. Steroids have been reduced for next week because I was horizontal for 24hrs last week with swollen glands, severe headache and increased temperature. It’s so hard when you start a new treatment because you want it to work, but you don’t want the side effects of the drugs to be too difficult to handle on a daily/long term basis.
Like Michael and yourself, we will all be paying a lot of attention to our dental hygiene which can only be a good thing. Hopefully your myeloma levels will not increase as result of stopping Zometa, especially when the drug has quite a few years when it remains effective in our systems.
Love Jan x
Hi All
During my second cycle of Ixazomib, Revlimid and Dex my exposed bone growth in my upper palette broke off whilst I was eating a meal! What a shock, but it definitely feels good not to have a large piece of additional bone in my mouth. Although the overall exposed growth was about 3cm in length and 1 cm wide, it appeared to be attached under the palette by only a thin piece of bone. The hole is healing well and I have a visit with the Maxilliofacial team next week. My dentist wants to keep the exposed bone for reference purposes and to use with his dental hospital teaching.
I suppose I now wait to see whether any further growth appears over the next six months because my CT scan a couple of years ago identified quite significant extra bone growing alongside the back molars underneath my upper palette.
Love Jan
Hi Jan,
I was a little alarmed on first reading this; but I appreciate you posting it, as none of us really know what to expect. I realise that excess bone growth continues; and have had a tiny piece drop off myself, but didn’t realise that such a large piece as yours can detach itself. It may not be quite as solidly attached as I suspected. Having had some chiselled off, I feel re-assured that it can detach itself sometimes….”every cloud etc.”
I hope you are well in yourself, and tolerating the treatment.
I am now four and a half years on from my diagnosis of Lymphoma and Multiple Myeloma… I continue to enjoy good health and thanks to the weather a healthy looking tan. I am not currently on any medication at all.
Love and best wishes,
Michael x
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