[michaelcParticipant]

I am currently in remission from BOTH Lymphoma and Multiple Myeloma diagnosed in 2013.
I had Chemotherapy and Stem Cells harvested in January 2014.
I have been on monthly infusions of Zometa (Bisphosphonate) since May 2104. In 2017 I am prescribed to have the infusions every 3 months.
As at Dec 2016 I am currently having tests for Osteonecrosis of the jaw.

I had a square section of bone taken from under my gum on 15th Dec 2016 and some surplus bone removed. The biopsy has been sent away for development in a laboratory to discover what it is. Could be B.R.O.N.J. (Bisphosphonate Related Osteo Necrosis of the Jaw) or the return of Myeloma… or maybe something else? I will get to know in a few weeks.

 

[kpParticipant]

Hi Michael,

I have heard of necrosis of the jaw as a complication of Zometa. I do hope this isn’t the case for you.

I have been in cr since August 2015 following a SCT and have Zometa every month. I wondered what symptoms you experienced.

I know that Myeloma doesn’t like Zometa but having been on it for two years I wonder about whether to carry on as I read that the other complication is bones becoming too hard.

My dentist wouldn’t even do a filling for me!!!

All the best Karen

 

 

[susieParticipant]

Hi

I’ve been on Zometa for the last two and a half years. I’ve been trying to persuade my consultant to stop it, but all he’s agreed to is to have it every 8 weeks.

I’ve now got an abscess on a tooth root in my upper jaw. The gum is extremely swollen, very very red, and my dentist is referring me to the hospital to have it removed. I dread that this will become an osteonecrosis as I’ve heard its so hard to treat.

I would be really interested to hear others experiences.

Best wishes

susie

[michaelcParticipant]

In my case, my lower dentures were becoming uncomfortable, so I visited my dentist to get new ones. He discovered “something” in the gum, and was due to extract it. Fortunately, my  wife reminded him of my ongoing treatment at Christies. He subsequently looked up Zometa to discover it was a Bisphosphonate, and decided not to touch it and referred me to an Oral Specialist at the Hospital.

I have always kept my records up to date at the dentist; but it would appear that SPECIFICALLY telling your dentist that you are on a BISPHOSPHONATE is the way to go.

My January 2017 infusion of Zometa was cancelled at Christies, but will resume in 3 months.

Best wishes to Karen and Susie. Let’s hear from anyone else out there that can tell us what to expect.

I strongly suspect that I have B R O N J as all my markers for the Myeloma are fine (Light Chains and Paraprotiens). I am concerned about further invasive work when there is not a remedy to hand.

Oh, by the way, I feel very well xx

 

[janwParticipant]

After a successful sct in 2010, I started on monthly zometa a year afterwards and was still on the drug in 2015 when I found a small hard lump under my upper palette. The dentist suspected a floating piece of tooth, but a scan revealed a bone growth underneath the palette skin alongside two of my upper molars. Zometa was thought to be the cause of the additional bone growth, therefore the monthly infusions were immediately stopped, but the drug can apparently remain in your body for years afterwards.

Over the past year, the bone has slowly broken through the upper palette skin and has continued to grow but at present does not appear to cause me any problems, apart from me fiddling with it with my tongue. The specialist hospital dentist is reluctant to shave off the exposed bone and cover the area with pulling/stitching skin over the site, because if the bone continues to grow, it will just break through the skin again. In America dentists have apparently tried this solution, but without much success. The main issue with leaving the bone exposed is a possible future infection in the bone or surrounding skin. I’ve been advised to keep the area clean and monitor the situation along with my dentist.

My consultant has seen one other patient with this type of additional bone growth in the mouth, which occurred when they were taking chemotherapy. However their skin grew back over the bone when the chemo stopped and their immunity improved. With this in mind, I’m hoping mine might be a similar situation because the bone growth protruded and broke through the palette following six months of VCD after I relapsed in 2015. My second sct was completed in September 2016, so hopefully as my immunity improves this might help the situation?

I would be really interested to know what your biopsy reveals Michael and what further action, if any, is taken. In England Zometa has only been available since around 2011, therefore any potential long term side effects are just starting to show in patients, which presents the doctors/dentists with challenges as to how to successfully treat any issues.

Jan

[michaelcParticipant]

Hi Jan,

Thank you very much for your reply and information. Sounds like you must have been one of the first in the UK to have the Zometa infusion.

I will certainly update when I receive the results from the biopsy.

Kind regards,

Michael

 

[shadyladyParticipant]

Hello, coming late to this post.  I am so glad someone is posting about ONJ.  I tried to speak about this on a Myeloma Facebook page, but they closed ranks on speaking about the seriousness of this topic, preferring the …everyone is different and not wanting any examples of other ONJ sufferers.

My husband was on Zometa up to his SCT in March 2016.  There was some dental treatment to be done, but was referred to the Maxillofacial dept at the hospital.  They did all the necessary examinations and X-rays then pronounced they no longer did dental surgery (they had not informed the consultant in the same hospital about this new non procedure…..he was extremely cross!!) and my husband would have to be referred for nhs funding.  This was last summer.  It took 3 months to get the funding through and a few weeks ago after root canal work and capping my husband is ready to go back on Zometa. EEEEEK

My worry is that my husband was not in any pain whatsoever, but to wait 3 months for funding if you are in pain has really made me think is Zometa worth it?  I’ve heard that Pamidronate does not cause ONJ but it does have side effects.

Sorry if I’m rambling a bit but it’s all a bit worrying.

Best wishes to all

Sonia

[janwParticipant]

Hi Sonia

I’m sorry to hear about your husband’s experience with the Maxillofacial clinic and having to wait three months for NHS funding. Hopefully all of his dental work has been successful and he continues to be pain free without any further dental problems.

I’m not sure whether Pamidronate is any different to Zometa as regards the side effects relating to ONJ. Your consultant or the helpline at myeloma uk would be able to advise much better. I think the tablet form of bisphosphonate is an alternative, but I’m not sure how effective it is compared with Zometa for bone strengthening. After having 3 collapsed vertebrae and several bone lesions identified in 2010 prior to my myeloma diagnosis, I know I need to closely monitor the situation. Reading the myeloma beacon website, it appears myeloma patients in America take Zometa for a max of 2 years on a monthly basis, then reduce the frequency to once a quarter. If the additional bone growth in my mouth remains stable, I would like to think I could resume on Zometa on a quarterly basis in order to try to prevent any further damage to my bones.

Jan

[shadyladyParticipant]

Hello Jan,

Thank you for your reply 🙂 Yes I’ve read the experiences of some of the ONJ sufferers on the Myeloma Beacon website…very very worrying.  I suppose if it were me would I want Myeloma  pain in my body or ONJ in my mouth/face.  If it’s in my body it would be taken care of more quickly through the Haematology department, but as you have read, it is now a waiting game through the dental route.

My husband (retired) has recently had returning pain in his hip (micro fractures…. and is permanently on morphine) BUT he is able to  go for his usual walks and the pain is manageable.    My worry is him being in dental pain, and waiting for  NHS funding for root canal work to be done.

Best wishes

Sonia

 

[louishenryParticipant]

I was referred to maxillofacial by my dentist when she spotted exposed bone in my mouth. The maxillofacial lady said it’s almost certainly caused by the Zometa, but if I need it I should carry on having it and she would sort out any problems. She has now twice scraped away the exposed bone and it has healed over OK. I can phone her directly now, I don’t need a new referral. Perhaps my local maxfax, at St Mary’s hospital on the Isle of Wight is unusually helpful. I must say virtually all the medical staff I have dealt with since diagnosis have been brilliant.

[adriwest1Participant]

Hello Henry, I also live on the island, Godshill. It great to hear about St Mary’s and would agree that they have been very good. Glad to read you are doing well and hoping to get an update from Southampton tomorrow. Dr Jenner- any advice would be well received, regards Adrian.

[janwParticipant]

Hello Louishenry,

I found your post to be very interesting due to the similarities which I am facing with exposed bone growth in my mouth due to Zometa. My maxillofacial consultant is reluctant to remove my exposed bone whilst it is causing no problems, because he feels the bone might be still growing and therefore he would rather wait and monitor the bone growth to see what happens. It’s interesting to see the different approaches between the specialists.

Would you mind if I asked you a few questions? How long have you been on Zometa before you noticed the bone growth? Where about is it located in your mouth? When the bone was scraped away was the skin stitched over the area or did it heal by itself. Are you currently on chemotherapy treatment and what are your immunity levels like at present. How quickly was further treatment required again and can you feel further bone under the skin in the same area?

Thanks in advance to your reply.

Jan

[louishenryParticipant]

Hi Adrian, I spent a week in St Mary’s two years ago when I was first diagnosed. I signed up for the Myeloma XI trial so most of my treatment is at Southampton under Dr Jenner. I’ve been very happy with how I’ve been treated at both hospitals. I hope your appointment with him goes well.

[louishenryParticipant]

Hi Jan, I’ve been on Zometa for two years since diagnosis. It was stopped for a few months when I had dental work done and again when my kidneys were complaining. The exposed bit is by my bottom right back tooth, on the inside of the jaw. The max fax doctor started with just mouthwashes then decided to scrape off a bit. It was very quick, not painful, and healed over without stitches. About six months later it came back again, same treatment. Now, another six months on I can feel it under the skin but it’s not broken through the skin yet. It doesn’t worry me, it’s just yet another appointment to fit in.

[louishenryParticipant]

I’m on lenalidomide maintenance, neutrophils are a bit low but I’ve not had many infections.

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