Letrozole Ibrance and Denosumab Meds

Hi ladies, just a quick question. Has anyone on Letrozole, Ibrance and Denosumab had any tooth problems?

Since being on the meds I’ve had a tooth extracted and as most of you know it caused ONJ that hasn’t healed in 14 months and now I have a broken tooth and lost a crown on the other side of my mouth. I just can’t make it out. I have a good diet and keep as fit as possible. My teeth have always been strong.

I told my Cancer Nurse, she doesn’t have an answer. Told my Oncologist who admitted he didn’t know to much about the ONJ problem and neither does my Dentist. I’m still waiting to see a Facial/Cranial Consultant. My dentist wrote to them 1st June then phoned them 3 weeks ago, they told her I am on the emergency list. God help anyone that’s not on the emergency list. They will wait forever.

If the Denosumab is causing a problem then I will ask for an alternative bone strengthening med. I am on a high dosage of calcium now and my levels are just acceptable (apparently).

I’m hoping for some feedback ladies as it seems nobody knows why this is happening.

Best wishes

Cheryl

[breezie]

Hi Cheryl, I haven't had ONJ myself (touch wood) but I've got the patient information leaflet for Denosumab here and it says ONJ is a side effect that "has been reported commonly (may effect 1 in 10 people)". It also goes on to say that ONJ "can also occur after stopping treatment. Your cancer nurse and dentist must know about it? I do hope you get proper treatment soon, it sounds horrible.

Best wishes,

Sue

[Hidden in reply to breezie]

Thanks Sue. Sometimes think they don’t want to know.

Cheryl

[breezie in reply to Hidden]

My cancer nurse asks me at every appointment if I’ve had any pain in my teeth or jaw, any loose teeth or trouble eating. It’s like a mantra. It’s so strange that a bone strengthening treatment can have the opposite effect on the jaw.

Sue

[hdhonda]

Dear Cheryl,

I don't have any answers but wish you the very best. Blessings, Hannah

[Hidden]

Sadly, its the Denosumab. My wife has lost a few teeth due to these injections. Can't understand why a bone strengthening drug does this but it is a well-known side effect.

[Hidden in reply to Hidden]

Thank you for replying. I’m sorry to hear your wife has had a problem with teeth. It’s really concerning me. I have, yet again, a small piece of exposed jaw bone from last years extraction. I’ve had 5 small pieces of bone removed already and the tooth socket has never healed due to Denosumab. Now I have very sensitive teeth but use a toothpaste prescribed by my dentist that helps. Is your wife having regular check ups by her dentist or did the hospital deal with the problem?

Best wishes

Cheryl

[Hidden in reply to Hidden]

The hospital; she's too ill to visit the dentist, sadly. Have started to blend a lot of her food. Just another cruel side effect of MBC and its treatment. Because she's also had a stroke she is on aspirin so needs Omeprazole to counter the risk of bleeding. A side effect of Omeprazole is brittle bones - which seems to make her Denosumab injections pointless anyway! Good luck with your treatment.

[Hidden]

I am sorry to hear this and your wife will know we are with her and yourself all the way. I also take Omeprozole but not every day. It does destroy some of our vitamin intake I know. I spoke to my GP last week and there is an alternative but unfortunately due to Covid they are unable to obtain supplies. I would say the Denosumab injection outweighs the side effects of Omeprozole. Your dear wife has to be comfortable.

Best wishes to you both.

From rainy Liverpool

Cheryl

[Selmac]

Hi, when I was on xgeva my jaws started hurting. I have 4 implants on the bottom. My gum started receding and I could see most of one of my posts. One post started hurting like a toothache. Oncologist said, no more xgeva. Get a mile walk in every day and you'll be fine.

[Hidden]

It’s a worry. We have an allotment that keeps us fit and twice every month we do a four mile walk to the hospital and back. Eight miles in two days is enough. We were walking everywhere as we,live in a,City Centre but unfortunately with Covid and our City being in lockdown again it’s not possible. The Denosumab helps,with my pain so much but I just do not want all my teeth fallling out as a,consequence.

I hope you are fine now. Thanks for replying.

Cheryl

[Hidden]

Sorry to hear this Cheryl.

I had some pain at my jaw a while ago and I wasn’t very convinced that anyone knew what they were talking about. My Oncologist told me to get checked out by my dentist who was no help whatsoever and just said onj Is rare. I think they are relating us to people who take these meds for Osteoporosis which is a different dose. I would telephone the craniofascial consultants secretary and ask them whereabouts you are on the waiting list and you can take a cancellation appointment if any come up. If you are desperate and don’t mind paying, a private appointment is about £130-£160 for a consultation. If you need any work done, this is still on the nhs, it just gets you on the list quicker.

Keep your chin up

Clare x

[Hidden in reply to Hidden]

Thanks Clare. I’m thinking of taking this option. We have a Spamedica Clinic in Liverpool that deals with dental treatment. I’m just so annoyed that any health professional doesn’t seem to know what to do. It’s ridiculous that I have to wait so long with no appointment in sight when I have exposed jaw bone that’s sharp from where the Consultant just snapped it off last time and didn’t even stitch it.

Will update soon.Best wishes

Cheryl

[Hidden in reply to Hidden]

I agree and find it worrying that there is such a lack of knowledge in this area. The nhs is a bugger of a system when it comes to waiting. As an nhs employee, I do find that those that ring and ask seem to get, if you know what I mean? You really need to see someone that knows what they are talking about. Get on the blower!!

Clare x

[Hidden in reply to Hidden]

I’m at the hospital for treatment Wednesday Clare. I will try and channel it through that way but I won’t hold my breath. If I get on the blower I have to battle with the receptionist first. Not allowed in the Dentist without an appointment. It’s like Cort Knox in there. I worked for the NHS as well and I understand the difficulties with appointments so know exactly what you mean on that score.

Will let you know what’s what on Wednesday.

Take care

Cheryl