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Osteonecrosis of the jaw (ONJ)

19 REPLIES 19
Jacksy
Member

Re: Osteonecrosis of the jaw (ONJ)

Hi Secondarysister,

That’s great news about your mum’s results! I’m so glad to hear that - I hope you found a way to have a little celebration… 😉 

All the best

Jx

MaryRose33
Member

Lobular bc

Hi Secondarysister2,

You said you are seeking out women with lobular bc. 

I have been diagnosed with lobular bc but am in early stages of treatment so probably can’t help you too much.

I was diagnosed with bowel cancer in Feb this year - found from a standard ‘poo test’ (I am now 75 so younger people may not know about these). Had surgery for bowel cancer and all went ok but they found breast cancer cells in the lymph nodes they took from the bowel. After tests they discovered lobular cancer in my breast - no lump, no symptoms but metastatic and now on letrozole, palbociclib starting soon.  Currently having various scans and blood tests and almost certainly denosumab to follow.

it’s all been a horrible shock and I am taking antidepressants to help me cope.  I had always been very healthy so all this has been such a shock, especially with no symptoms as a warning.

I hope your Mum continues to improve and happy to answer any questions but not sure I can help you.  xx

 

imac55
Member

Re: Osteonecrosis of the jaw (ONJ)

Hi Windflower

I have ONJ left un diagnosed due to covid and at time no dentists open. I was eventually referred via my oncologist to maxilla facial dept who also dragged their feet. I was seen by a doctor,  but discovered after undergoing 2 lots of surgery suggested by him, on the bone, that he wasn't an expert in the field! I pushed to see a consultant who put me on long term antibiotics as the surgery wound won't heal. If you have ONJ apparently surgery isn't recommende, the consultantsaid this! Sounds like in your case it was needed though, as surgery interfers with blood flow to the site. So if your wound feels like it isn't healing,  it likely isn't.  I was on Denosumab for 4 yrs. Been off it a yr but it can still affect the bone up to 2 years on. Its really got me down, especially when the wound smelt foul with infection that wouldn't clear. Lesson learnt,  will always ask for Dr's credentials before allowing them to operate on me! Hope it's sorted soon.

Stoney
Member

Re: Osteonecrosis of the jaw (ONJ)

Hello ladies, secondarysister2, great news on your mams results, great to hear the word 'stable'

windflower,, great too things seem to be moving in right direction for you too regarding your jaw/teeth ..

I had CT on jaw so am waiting on results which I will get week of 9th Aug... this really should have been resolved weeks ago, everything seems so slow... I'm in ROI, and what with the hse hack, and Covid, it's making life extremely difficult and stressful for patients ..

 

Secondarysister2
Member

Re: Osteonecrosis of the jaw (ONJ)

Hi Jacksy,

My mums scans came back as ‘stable’ with signs of improvement to the tumour on her spine. So the cocktail of Ribociclib, letrozole and denosunab are working their magic!! Relieved is not the word. I was on cloud 9. I just pray and hope that she gets a good run out of these meds and nothing changes any time soon! 

How are you doing ? I noticed you’ve been living with sbc for sometime now and I think you have the same type of cancer as my mum. My mum has lobular and although not in her peritieaum, I know it has a tendency to go there !

I’m always trying to find lobular ladies to shamelessly pick their brains! It’s quite a rare one, so the posts are few and far between. 

I hope your treatments go well and keep us updated ! X X

Jacksy
Member

Re: Osteonecrosis of the jaw (ONJ)

Hi girls,

I just wanted to comment as I’ve been reading your posts.

Stoney, I’m so glad it hasn’t turned out to be anything nasty. Good that they checked you out thoroughly though 👍🏼
Windflower, sorry to read of all this trouble and worry you’ve had. I’m glad you’ve been seen now and they’re sorting you out.

Secondarysister it’s an excruciating wait, what we call scanxiety! Just keep yourself and your mum busy and try not to think about it too much. I wish good results for your mum. Let us know how it goes 

Jx

windflower
Member

Re: Osteonecrosis of the jaw (ONJ)

The post I just sent should have been addressed to Stoney as well!

Windflower

windflower
Member

Re: Osteonecrosis of the jaw (ONJ)

Hi Secondarysister,

Sorry I haven't replied earlier, but my husband has hogged the laptop for ages and I hate using my tablet as it hasn't got a keyboard and changes everything I write!

Well, I finally managed to get a maxillo-facial appt with the consultant's second-in-command on 2nd July.  She has made another appointment for me for 26th August as I have a clinic appointment with the oncologist in September (not yet received the time and date).  Until then I am off the Denosumab and don't know if I will be back on it.  I don't know if the extraction site has healed OK as it still feels quite spongy and some of the jaw bone was removed after the tooth was taken out.  I don't have discomfort from it but am hesitant to brush with my electric toothbrush in that spot.

Best wishes,

Windflower

Secondarysister2
Member

Re: Osteonecrosis of the jaw (ONJ)

Hi Stoney,

My mum has her scans next week, so I’m feeling very anxious about it. She has extensive bone mets, so I’m praying praying for stable scans!!! My mum has been on her treatment for nearly a year now and has the Denosumab injection regularly.

Keep us updated with how you get on at the dentist! I hope you get it sorted soon xxx

Stoney
Member

Re: Osteonecrosis of the jaw (ONJ)

Waiting for an appointment for ent, but today my jaw is really sore, and my teeth on that side are very sensitive.. think I might pay a visit to the dentist..

How are you windflower, and secondarysister2 ?

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