Don't know whether I'm lucky or not but I am the first patient for whom my onc has prescribed ibandronic acid, a bisphosphonate. I understand why, having chanced upon a paper reporting the reduction in bone mets and overall survival in primary breast cancer patients.
Business case just approved locally; included removal of need for bone density scans while on anastrazole.
Don't know why it's a daily 50mg tab (pretty onerous since it has to be taken on an empty stomach, & have to stay upright for an hour after). No background info apart from the leaflet with the meds.
Have seen the dentist who has only ever seen one case of osteonecrosis in someone with faulty dentures, so a bit reassured by that.
Presumably there will be many in my situation shortly, so thought we could share knowledge. I'm sure Macmillan will have an info section on this soon.
Hi Dosydo,
Thanks for sharing! Macmillan has some information on bisphophonates here you can look at.
In our Ask an Expert section, our dentists have answered a few questions about them too which you and others might like to read.
bisphosphonates - possible complications?
biophosphate for breast cancer
I hope you find this helpful - is there anything else you think our information could do with including?
Best wishes,
Jess
Macmillan Community Team
Hi Dosydo, I just wanted to add something but am not saying it to worry you, but to just show there are two sides to everything! Can I assume you saw your usual dentist before starting this drug? And that it was he/she who has only ever seen one case of Osteonecrosis?
I have bone mets and have been offered denosumab which is given via an injection. After reading side effects and researching things I decided that for ME it wasn't the right time to start with this drug, especially as my cancer is currently stable. I did however get my teeth checked and was then referred to the hospital dentist to have my wisdom teeth removed as they said it would be better to take them out in case I change my mind about taking the denosumab.
I chatted with the dentist in detail and he had a lot to say about the subject. He has seen many cases of the Osteonecrosis, which makes sense as if you do have jaw issues it's the hospital dentist that you would be referred too! He said with my history and my current situation and age etc, he thought I had made a sensible decision. Especially as I would be having the injection which apparantly according to him, has more chance of causing this than the tablet bone strengthening drugs!
At the end of the day we all have to do what feels right for us, but I am starting to think they are giving drugs out that 'could' create more issues and quite serious issues, to people who may not of gone on to get bone mets anyway?! I suppose it's good to have the choice, but I wish they could find drugs that didn't create more problems!
I hope I have worded that right as I don't want to scare anyone, just wanted to point out the other side.
Wishing you all the best xxx
Just saying hi I've been prescribed this too but not started talking it yet. Like you I couldn't find much info on it and not keen on the complicated way of taking it every day. I've asked about the six month infusion as seemed much simpler waiting to see how much it is private will also be available in my area in time but not sure when. Doubt ill pay private though just curious. I've been told it reduces chance of bone mets by tablets just the same as the infusion. Think I'm lucky to have it too and felt bit guilty asking about the infusion but that's my nature anyway ! Interesting to see what info we get. Good luck x
HI there
I have been having the infusions of bIphosphonates every six months for two years... Just finished now. The first infusion caused achey bones for a few days - worse at work when I was sat in front of the computer all day. Exercise definitely eased it. THe last three infusions caused no side effects at all. I'm also on Letrozole. The first pill ever made me throw up, so I take it at night now and after some food. No problems with it since then thank goodness. Just hear so many negative stories about these drugs I thought I'd put a positive comment on here, I know we are all different but for me, I want to take everything that is offered. I can stop if it doesn't agree with me. Good luck with these difficult decisions everyone.
I'm having denusomab injections every 6 months instead of biphosphonates as recent research shows better outcomes (18% lower relative risk of bone mets). However, here in Australia it's not yet subsidised by the Government, although it is approved for use, so I have to pay for it - $290 per injection (that's about 170 pounds). Only one other person on this forum has been offered denusomab for treatment after primary only cancer but I can't recall who it was, so I guess it hasn't been approved by NICE for general use.
As for osteochronosis of the jaw, I've got dentures anyway so it's not an issue for me.
I'm in Scotland, and was given the option of tablets or injections - I decided to go for the tablets simply to avoid having to traipse to the hospital via ferry every three months (plus, I'm sodding tired of hospitals!) Very surprised to find that some women aren't given a choice, though.
"Experience is the hardest kind of teacher. It gives you the test first, and the lesson afterward."
- Oscar Wilde
I am getting 6 monthly Zoledronic Acid infusions. My oncologist didn't hesitate when I asked, and no need for bone density scans either.
I am 49 (nearly 50) and had been on HRT since 38/39 - early menopause after hysterectomy at 30. I took HRT because the risk of osteoporosis was too high if I didn't. And the higher risk of BC and heart disease were minimal until I reached normal menopause age (51-55). My pathology was ER0, so the cancer had nothing to do with HRT.
Karen
Hi Kacang,
I'm the one that's in England and has been having the 6-monthly Denusomab injections. I've had two. However, my hospital is discontinuing these injections for their patients and putting them on bisphosphonates instead. I understand that this is because the medical profession are finding that, when women have completed the course of Denusomab, their bones are left in a weaker state. I've only heard this from other patients and will ask the nurses at my next appointment, as I'm due another Denosumab this month. You might like to check this out too.
Hannah
Thanks Hannah. I'll check it out, although it sounds a bit odd as denusomab hasn't been around very long.
I just asked Dr Google (yes I know that's not enough and I will ask my onco next time I see him) and ironically the only article I found was relating to recent research (Feb 17, Imperial College London) showing that biphosphonates leave microcracks in your bones:
"The results revealed that the bones of people who had been taking bisphosphonates had 24 per cent more microcracks than the bones of people who had not been taking the drugs, and 54 per cent more than healthy aging bone.
However, as expected, the bones of people who were taking bisphosphonates were also found to have fewer holes.
But despite this, the bones from patients treated with bisphosphonates were also found to be 33 per cent weaker than people who had suffered fractures but were not taking bisphosphonates."
I'll have a more detailed look later, when I've got a bit of spare time.
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