This topic contains 6 replies, has 6 voices, and was last updated by 
andyg 10 years, 12 months ago.
Hi Everyone,
I have popped in and out of the forum for over a couple of years since my Dad was diagnosed with MM and AL Amyloidosis and love the support and info available.
I'd just like to warn people who are going to start a course of Bisphosphonates the importance of understanding the risk factors and being fully informed.
My Dad had successfuly had CTD and velcade, harvested stemcells and is now in remission, it has been a long journey but he seemed to turn a corner and has had a new lease of life.
He was told before starting treatment to go and have a dental check up because the treatment could cause "problems with his mouth", no further info was given as to why this was required or any documents given for him to produce to the dentist regarding why the check up was necessary. My Dad went to the dentist and told him he was to start a form of chemo and needed a check up. Dentist concluded my Dad had a couple of slightly wobbly teeth but no work was necessary.
Dad received his treatment including Zometa then Pamidronate. After Velcade treatment my Dads teeth started falling out, spoke to consultant who said go to the dentist, dentist pulled another few teeth. No problem!
Then after a few weeks my Dads mouth failed to heal, dentist gave him antibiotics and mouth wash, 7 weeks later my Dad couldnt eat he was in so much pain, the extraction wounds weren't healing, back to Dentist who refered im back to hospital.
In the meantime my Dads mouth looked like he had mouth cancer, his breath was foul and he was in pain, I feared the worse but I went online but discovered a disease called Osteonecrosis.
We visited his MM consultant who said wait for appointment with Maxio Facial department? I asked if my Dad could have Osteonecrosis a side effect of Bisphosphonates and he told us it was extremely unlikely as this was a rare condition, reluctantly he looked at my Dads mouth and said "hhhmmm oh dear yes in my opinion I believe it does look like you have this condition! This is very unfortunate"
Unfortunate, NO this was preventable, my Dad has the worst case of Osteonecrosis the top Maxio Facial consultant in the region has ever seen, he will need surgery and won't ever be able to wear dentures. My Dad has fought MM and Amyloidosis with dignity, pride and positivity and has came out the other side only to be left with the consequences of a side effect that will leave him feeling insecure, unable to chew food and speak properly. This side effect could have been avoided.
The Maxio Facial Consultant has said that Osteonecrosis WAS a very rare disease, however the past couple of years because bisphophonates have been used in previous years this is becoming increasingly more common and he is trying to inform all medical professionals involved with cancer treatments using bisphosphonates to fully make patients and all involved aware of the importance of having the CORRECT dental examination before treatment.
In his opinion my Dad being 64 he would be at risk of losing teeth and therefore any teeth that were wobbly or slightly decade should have been removed PRIOR to starting bisphosphonates, had this been done and the my Dad and the dentist had the correct information my Dad wouldn't be in the painful situation he is in and facing surgery and osteonecrosis could have been avioded.
Osteonecrosis is a side effect that is rearing its ugly head but is avoidable, bisphosphonates are crucial in the treatment of MM and other cancers but consultants and patients must make sure the emphasis on having the correct dental survey and treatment/extractions prior to treatment is crucial to ensure, osteonecrosis is avoided.
It has made me and my family so upset that my Dads quality of life will deminish not due to his MM and Amyloid conditions which he is now in remission for but a side effect of one of the treatments is now having a detremental effect on his life and it could have been avoided if the correct info had been provided.
I understand that some hospitals might provide the relevant info and I don't want to scare people because bisphosphonates have a positive effect on treatment but if my Dad had known what he knows now this could have been avoided.
Love and best wishes to all C x
Hi Clarabell,
Thank you for the information on Bisphosphates.My Dad has just started treatment on Zometa and he had his first course about a month ago.My Dad was told by his Hematologist that he could attend the Dentist but not have any treatment.Before my Dad was diagnosed with active MM he had to go for treatment as his back teeth had gone bad and he had 3 extractions and a course of Antibiotics.This now we know probably was the MM that caused all this and the jaw problems he had.I will keep an eye out on his teeth now that you have brought this to everyones attention.At the moment though my Dad has been stopped his course of Chemo and Steroids for the second time as he has had a chest infection of which he has had Antibiotics and even though they seemed to have worked they have put him on a stronger dose of his Antibiotics for his leg just as a precaution to ward off the raspiness of his chest.
The only reason he has been taken off his course of treatment his Hematologist Nurse phoned him on a routine check up of how he was doing and as the conversation went towards his chest infection and increased amount of his leg meds.The Nurse told him he could not continue on his treatment while on a increased dosage.I don't understand why the Dr's did not inform the Hematologists straight the way,surely your local G.p's electronically send all problems relating to illness to your specialists.so in the mean time he awaits the go ahead to resume treatment.
Dad is also having problems with his stomach and it is an on off thing even though he is not on any steroids or Chemo.I've asked him to phone his Hematologist Nurse to mention this but he does not see it as a problem to bother them with.I'm beginning to worry as this has gone on for a month now.And i believe any little niggle no matter how small should be mentioned.
Sorry to hijack your post a little.I'm getting things off my chest as i have had two sad but shocking Deaths this week of a relative and close family friend and they were so unexpected.I'm trying to stay positive but i do worry for my Dad at the news as this could make him get very down as these deaths were due to Cancer,of which these people had no knowledge that they had it.This is the 3rd time in six months that i have been told of people been treated for one thing by there G.P's and it has turned out to be Cancer.What is our system coming to.Sorry to ramble on,no doubt i'll bounce back shortly.Best wishes for your Dad.
Kind Regards,
Illona.
Hi,
It is very rare that I come onto this site however I do like to read the posts.
I am in remission from mm and will be on lifelong monthly zometa.
I strongly believe that your dentist has been negligent here. They are professionally bound to know of a persons full medical history prior to any dental treatment. Osteonecrosis is not rare in someone on zometa having an extraction, it is a recognised complication. This is just not right., I would be fuming. I can only hope and pray that this will heal under the expert care of the maxilofacial surgeons.
Mike
Hi all
Well I was having Zometa for two years post SCT and was told prior to starting to have my teeth checked the on my first visit for the infusion I was given two sheets of A4 paper with all the info on and part of that was no extractions of teeth.
So someone failed along the line am afraid, hope it's soon sorted.
Tom onwards and upwards x
Thanks for the replies,
The Maxio Facial Consultant has said he will be contacting all involved with my Dads treatment including the dentist, Unfortunatley my Dad wasn't given info sheets to provide to the Dentist and told him he was starting chemo, so its just been a failure of communication that has resulted in my Dad having a further condition to deal with.
llly68 I'm glad you have used this post to air your feelings, my Dad also had to stop treatment due to infection and we also worried that this would hinder his progress but fortunately it didn't. I have come to realise that GP's and different consultants don't communicate with each other, my Dad is very much like your Dad and doesn't want to phone about anything because he thinks they are too busy and doesn't want to bother them. I spoke to my Dads nurse and asked if it would be ok if I contacted her if I had any worries but did'nt want my Dad to know and she has been brilliant, when I called and told her about my Dad's PN and he couldn't sleep etc she brought forward his regular appointment (my Dad did'nt know I had contacted her and this was the reason his appointment was changed).
I go with my Dad to all his "big" appointments because he just tells them he's doing fine otherwise. He did'nt like it at first and I told him I wasn't going for his benefit but mine because I wanted to know what was happening and now its a standing joke that I'm his PA.
I have found out so much info from this forum its a god send! My Dad had an ongoing pain in his hip, and because of info on here I pushed the consultant to find out if he had a mass there and low and behold he did have! He then got radiotherapy which has helped with the pain but I doubt this would've been done if I hadn't been informed enough to quiz the consultant.
Its such a worry and horrible to see my Dad who has always been a strong fit man have to cope with MM and his other conditions I'm sure you feel the same and its frustrating when different medical areas don't communicate with each other, I have now came to realise they are so busy and under so much pressure I take it upon myself to make sure all involved with my Dad know whats been going on he's my priority, they have so many people to look after no wonder things get missed.
If you ever need to let off some steam feel free to let it out here, everyone is so supportive in what can be stressful uncertain times xxx
I am sorry to hear the problems your Dad has been experiencing with his mouth.
I like Tom have been on some form of Bisphosphonates since diagnosis in Jul 09. I was told about the problems with Osteonecrosis and had to have a Dental Inspection and any repairs done before I started. But, thank you for the warning that others will no doubt benefit from.
I hope he gets well soon.
Kindest regards – vasbyte
David
Hi
I’m very sorry to hear about your dad’s problems.
Like Tom and David I was warned of the danger of dental extraction whilst on Zometa. I was told before any extractions I had to stop Zometa for 3 months and also not start again till 3 month post extraction. I was also given a leaflet to take to my dentist though she knew about it already. Your dad’s dentist should of asked for a list of every drug you dad was on before doing any work on your dad. I have to update my dentist every time I go for a check up.
Osteonecrosis is a well known, if rare, side effect of bisphophanates. My dentist sees me every 3 months to keep a check on me.
I don’t bother with my GP if I have ANY medical problem I go to my haematology day unit first. They know my full history and organise appropriate treatment for me.
Every day is a gift
And a challenge
Andy xx
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