[KerryParticipant]

Hi I am a newcomer to this forum and am writing on behalf of my Mum. She has had myeloma now for 14 years and recently is suffering with osteonecrosis – she is wondering whether anybody has (or is) going through this and whether there is anything that can be done to help relieve the pain. Can it be operated on, and if so, what is the recovery time… any advice would be gratefully received.

[MicheleParticipant]

Hello Kerry and welcome to the forum.

After 14 years your mum's doing very well. Is she or has she been on Zometa or a similar drug used to strengthen the bones? I know this can be a cause of jaw/teeth problems and needs to be reported to your doctor or specialist so that they can help you.

Best Wishes
Michele

[KerryParticipant]

Hi Michele

Cheers for your reply and yes I guess she has done well to last this long however I gave up work last year to come to Spain to look after her and in that year she seems to have got a lot worse. Yes she was on Zometa for a number of years and following the bone growth her consultant has stopped it for the moment to see if it makes any difference, however she has been told that it can take up to a year for the Zometa to leave her system. In the meantime her mouth is getting worse with swellings and bone growth which is affecting her every day, she can only eat soft foods etc. Anyway she wondered whether anybody had been operated on to remove the bone or not, she is wondering whether it would be worth having done or not. We are seeing her consultant this month so am hoping she may have some answers then. Life can be so unfair at times. But thanks for writing back, appreciate it.

Kerry

[tomParticipant]

Hi Kerry

Sorry to hear about your Mum but may I say a well done to her and her team 14 years is great and am sure more to come.

As for the Zometa am not sure how long it stays in the system? but am sure I read in here that some one had it removed (cant recall who or when?)

Good Luck to your Mum and give her my regards, and hope all is soon sorted.

Love Tom "Onwards and Upwards" xx

[KerryParticipant]

Hi Tom

Thanks for your reply – I shall trawl through the forum messages and see if I can find some more information that is specific about ops on the jaw.

Kerry

[tomParticipant]

Your More than Welcome Kerry, and dont forget you can Phone the Nurse/ send an Email to them.

Love Tom "Onwards and Upwards" xx

[KerryParticipant]

Tom – where do I get the email info from – am new to the site and currently living in Spain so email would be better than calling.

Thanks

[tomParticipant]

Hi Kerry try this
http://www.myeloma.org.uk/patient-services/ask-the-nurse/

this should open up a page on here so you can ask the Nurse.

Hope it works

Love Tom xxx

[KerryParticipant]

Cheers Tom – I shall give it a go tomorrow..

[PerkymiteParticipant]

Hi Kerry, a belated welcome to the site.

Tom is right your best chance for info on this is our Myeloma Nurse. I have been on the site since 2009 and cannot remember anybody actually suffering from Osteonecrosis.

Did your Mother have smouldering myeloma for some years that went to full blown Myeloma or has she actually had Myeloma for 14 years? If the later is the case I think your mother is ahead of us all. I vaguely remember a guy from Exeter, Devon who was 16 years and the site did have one or maybe two people who had had Myeloma for over 13 years.

I am sure we would all be interested in what you find out so please post the results.

Kind regards ? vasbyte

David

[KerryParticipant]

Hi David

Yeah Mum has had full blown Myeloma for 14 years, the doctors here in Spain are amazed at how long she has had it. It wasn't picked up for a couple of years cos she lived abroad with my Dads job so rarely saw the doctors, it was only when she returned to the UK and started seeing a chiropractor about her sore back that it all came to light, she was 55 when diagnosed and chemo was started (she is now 71) so yeah a long time. However, apart from the osteonecrosis she is still fighting the disease but I think she is now getting tired, bless her.

I will email the nurse and then let you all know what she/he says. Mum has seen a maxillo facial consultant about it and was told that the bone could be removed but it was likely to grow back 🙁 that is why I wanted to find out recovery times and stuff following any operation. Anyway as Tom said "onwards and upwards".

Kerry

[eveParticipant]

Hi Kerry

Welcome to the site,14 years is a long time,so your mum is doing very well.

What little I know about Zometa is Slim having a tooth out,was not a problem just had to be 2 weeks clear of having Zometa,told only 1%| of people get osteonecrosis very rare,so nurse or computer your best bet.I do know as time goes by Zometa does not work as well.That is why 2 years is the average that people are on it.IF your mother has been on it for 14 years,it is a long time.Eve

[KerryParticipant]

Hi Eve

Mum has not been on Zometa for 14 years it was only when she came to Spain that she was put on it, I think it has been more than 2 years but less than 5, not really sure but definitely not 14. I will find out from her exactly how long, she is resting at moment as she has just had a cataract op so is very tired.

I have just emailed the nurse so will put post up when I get a reply, and thanks for your message.

Kerry

PS

Mum just confirmed that she has been on it since she came to Spain 6 years ago but she was also having an oral bone strengthener in UK – unfortunately the UK wouldn't release her medical records to Spain and Mum didn't make the connection between them and the Zometa 🙁

[KerryParticipant]

Hi All

Well I messaged the nurse and she pretty much told me what I had found out on the internet about osteonecrosis – not recommended to have any extractions or removal of the bones in the jaw as seems the jaw bone doesn't heal very effectively and could only make the matter worse. It is linked to Zometa and the fact that Mum's consultant here did not tell her of the side effect has not helped because he let her continue with it for more than the recommended 2 years, so all that can be done is pain management. Also seems it takes years for Zometa to leave the system so if any of you out there need your teeth seeing to best to get it done before you have any bone stengthening treatments.

On the plus side following Mum's cataract operation she is now back to 20/20 vision.:-) although still quite fatigued but given the length of time she has been fighting this disease she is doing great.

Cheers all

Kerry

[tomParticipant]

Hi Kerry

Hope your Mum is doing Ok. I was told Zometa only for two years and that is now complete so far Jaw intact and teeth still good (check out my smile Ha ha)

I do hope they can control the pain for your Mum.

Love Tom "Onwards and Upwards" xxx

[Author]

Posts