Bisphosphonate-associated Osteonecrosis of the Jaw

I thought I should do a post about my bad experience with bisphosphonates which are bone hardening drugs that help to strengthen the bone (and reduce the risk of fracture), reduce pain in the area and also help with preventing the release of calcium into the bone. The problem I suffered from them is really, really rare and maybe my experience will help someone. It's called bisphosphonate-associated osteonecrosis of the jaw and unfortunately, was the catalyst for the infection that landed me in hospital in February.

Originally, I was receiving a bisphosphonate called permiginate every four weeks. This was given to me intravenously at the hospital and took about two hours. It's not an unpleasant experience and there were no side effects that I noticed - some patients feel a bit flu-y and/or sick apparently. But as I mentioned in this blog post, despite taking it, I still suffered from high calcium levels which ended with my being back in the hospice being pumped full of a different bisphosphonate (Zometa) to reduce them. This particular brand only took 15 minutes to administer and worked really well to reduce my calcium levels, so we agreed to switch to that one from then on.

And then, as documented here, my mouth went wrong; probably around September 2013. I don't think it was anything to do with switching versions of bisphosphonate but part of me does wonder. The bones in my mouth started to poke though the gums at the side and scratch my tongue. I mentioned this to the oncologist who said to go straight to the dentist; the earliest appointment I could get was December. Love those dentists! The dentist had a look and that was when I was referred to the maxilliofacial department.

Luckily, the maxilliofacial appointment for this came through very quickly - to be honest, they have been, and continue to be, pretty good throughout the whole debacle. They confirmed that it was probably due to the bisphosphonate - and also that it had probably been happening for a while, so before the type was switched - and reassured me that it was unlikely to be something cancerous. We also agreed that I would have an operation to smooth out the bone inside the mouth so it was no longer scratching the tongue, but there was not much else that could be done. And there you go, the rest of my experience in this matter is history; the operation triggered an infection and I ended up in the hospital and hospice for several weeks.

In terms of what I had (have?) where the bone pokes through, it's called Bisphosphonate-associated osteonecrosis of the jaw. It seems it's only recently been identified as a side effect and is extremely rare. I spoke to a nurse who had 20 years experience in this area who said she had never seen it. Then I heard one in 500,000 taking bisphosphonates may get it. And that would be me. Yay!  Unfortunately, it's not going to go away and the bone will always be exposed in my mouth, but the maxilliofacial department have done a great smoothing job so it doesn't bother me any more.

So I guess the point of this post is to reassure anyone else who may get it that this disease isn't so bad. Just make sure that there is minimal risk of infection if any oral surgery is needed, especially if one's immune system is compromised like mine. Smoothing the bone has been brilliant and well worth it, despite the subsequent infection. To be honest, if it hadn't been this, would it have been something else?! I also need to be really particular with my oral hygiene, so thorough but gentle brushing, flossing and special mouthwash.

Some Good and Bad News?

Last week was fairly busy with various clinical visits and appointments, but the main ones were with the maxilliofacial consultant at the hospital to look at my mouth and remnants of the infection, and with my oncologist to discuss next steps.

The appointment with the maxilliofacial consultant went really well.  My mouth is 'nice' and the infection looks to be completely gone. He was very happy with progress but is keeping me on his books so if there are any problems in the next six months, I can call them to ask for advice - and then I go see them in October for hopefully a final appointment. So great news there.

On the other hand, the oncology appointment was not so great. I thought the plan was that I would be starting with chemo mid-April to reduce whatever is happening in my liver; the cancer isn't going away, of course. However, with all the problems I have had, she feels that it is not in my best interest to have chemo right now - if ever in the future. My body won't take it and the chemo won't reduce the cancer in my liver enough to justify the side effects and other risks. She is worried that my quality of life will be awful if I go through it and I understand that. In addition, where I have fluid pooling in my body will be where the chemo drugs pool too - and I don't have cancer there! So even if my body could take it, there's no guarantee that the chemo would go to where it's needed and would just attack healthy cells. It was a real shock to be told that my body was in such poor condition; it still is when I think about it. I don't like being properly unwell. So bad news in that respect but good news - no horrible chemo! I've also been taken off hormone tablets which aren't working to reduce anything.

In terms of how the cancer's being managed, therefore, it's continue as we are, managing the symptoms rather than the cancer itself. The bone cancer is manageable still and I don't think I really need to worry too much about that. It's the liver cancer that may be a problem. I'm being sent for some more scans over the next few weeks to see progression, but originally there were just spots of it so fingers crossed it's staying slow.

Moving On!

Yes, I am moving on, literally!

It's getting easier to stand up, virtually unaided by another person - although I do still need to be raised a little  before doing so and to use my zimmer frame or walking trolley for balance. I'm walking with the trolley, which is much easier and more 'natural' feeling than the zimmer frame - plus I feel slighty less old-lady-ish with it. I really need to get on with pimping it somehow...

But the real treat is that we are getting more and more used to going out in the car; we seem to have got the knack of this really well. We've been out for a few more meals and we had a lovely time at Harbour Park yesterday. It's amazing to be able to do these things as a family again - I missed it so much.

Next steps this week are to check out my infection - or lack of - with the maxilliofacial people at the hospital (tomorrow) and to start to think about chemo with the oncologist (Wednesday). What fun!