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Osteonecrosis of the jaw (ONJ)

9 REPLIES 9
Secondarysister2
Member

Re: Osteonecrosis of the jaw (ONJ)

That is brilliant news Stoney!!

So pleased to hear this! I bet you are relieved. Stable scans and nothing abnormal going on with your jaw. It’s a bloody rollercoaster this secondary breast cancer malarkey! Xx

Stoney
Member

Re: Osteonecrosis of the jaw (ONJ)

Just thought I'd update, I had ultra sound, nothing abnormal showing up ..they thought it might be blocked glands, but they appear fine..

So I'm none the wiser, but obviously delighted nothing abnormal...

I got the results of my CT scan, and everything remains stable, thankfully not spreading to my organs just staying in my bones for the time being.. 

Windflower, I definitely would request to be seen by somebody else, as that wait is just not acceptable...

Secondarysister, the scans do not be long about coming around, hopefully all is ok with your mam.

Secondarysister2
Member

Re: Osteonecrosis of the jaw (ONJ)

Hi Windflower,

This is not your fault that the consultant has had to take leave. Someone else should surely see you!! The consultant might decide to take more leave and what then?!  Could they change from Denosumab to something else? Keep me posted! I hope you are not in discomfort with your jaw?

Have your bones mets remained stable or have they ever progressed these last 5 years? My mum has the exact same breast cancer as yourself, so I’m very keen to keep in touch !! She has scans beginning of July again!! They come round far too quick! It’s all I can think about the few weeks before hand... my mum is only 57 and I still can’t believe it’s come back after 10 years!!! 

Take care Windflower!! I hope you get to see another consultant soon xxx

windflower
Member

Re: Osteonecrosis of the jaw (ONJ)

Hello Secondarysister2 and Stoney,

I have written about my experiences regarding ONJ on another thread that I can't find.  I have been on Denosumab for more than five and a half years and had trouble with my gum round about the new year.  I had to wait 2 months for a dentist appointment and was told my tooth (a molar) needed to come out and he didn't feel capable of doing it as I was on Denosumab.  Oncology referred me to Maxillo-Facial and the tooth was taken out at the end of April.  Apparently I had an abscess on my gum but the tooth was OK.  However, it was loose so needed to come out.  The consultant then had to remove a bit of the bone as it didn't look good.  I was supposed to see him again early July and not have Denosumab until I'd seen him again.  But the appointment has been put back until October!!! because he has had to take leave and his patients have all been put back.  I phoned his secretary who "didn't know anything about medication" and suggested phoning whoever had referred me.  So I've phoned the cancer unit and am now waiting to see what they suggest.  I don't even know if the wound has healed properly.  There is a strong possibility that I won't be able to have Denosumab in future.  Covid really seems to have affected other patients in lots of different ways.

From what I've read/heard, I wouldn't think that a lump on the gum would be metastatic breast cancer but it certainly needed investigating.  Hopefully you will have found something out by now Stoney.

All the best,

Windflower

Secondarysister2
Member

Re: Osteonecrosis of the jaw (ONJ)

I know I’m probably not helping much, but I really doubt its a tumour! Your mind plays tricks when you have this awful, insidious disease!! I really dont think the jaw is a place that breast cancer goes to ? 

Whatever it turns out to be, i’m sure they will be able to help and get it sorted for you. They will just want to be thorough and check all bases! They cant see what is going on without an X-ray. It could be an infection or anything!! Did your nurse or doctor give any indication of what it may be? 

Sending you loads of love and hugs!! Look after your mental health too. Its just as important, if not more so, than physical health! Xx

Stoney
Member

Re: Osteonecrosis of the jaw (ONJ)

Saw nurse yesterday, getting CT scan next week. I'm so worried this is a tumor 😢

Stoney
Member

Re: Osteonecrosis of the jaw (ONJ)

Thanks secondarysister2, I'm seeing my oncology nurse next week, my gp suggested CT scan, so I should know within the next couple of weeks..

Thanks for your reply...

Secondarysister2
Member

Re: Osteonecrosis of the jaw (ONJ)

I also just re-read that your dentist sent you to the GP.... insist the GP refers you to someone in that field!!! Dont let them fob you off !!! 

Secondarysister2
Member

Re: Osteonecrosis of the jaw (ONJ)

Hi Stoney,

I’m sorry I cannot be of help, but could I ask how long you’ve been on bone injections for ? Is it Denosunab ? 

I’m not saying your GP is right or wrong, but I always find them to know a little bit about everything! They are not specialist in any area. I’m sure you already are doing, but definitely speak to a specialist in that field. Maxillo consultants or dentists. 

I hope you get it sorted! Let us know how you get on! Xx

Stoney
Member

Osteonecrosis of the jaw (ONJ)

Hello All,

So I discovered quite a large lump developing on my jaw bone, initially went to dentist as I thought I had infection as tooth was also sore, a course of antibiotics didn't work, so he sent me to my GP, who contacted oncology for me and I've to go in next week to them.. nurse said she thought it sounded like ONJ, but my GP seems to disagree.... Im up the walls worrying, as it's now quite large and sore. 

Has anyone ever heard of this..(I've metastatic of the bones)

Thanks