Long-term bisphosphonate treatments

This is a reply to a question on the Xeloda top tips thread, breastcancercare.org.uk/comment/2058195#comment-2058195 seemed best to give it a thread of its own.
I’ve been on bisphosphonates more than 10 years!
Was dx with osteoporosis 2001, after hysterectomy/ovaries removal (no cancer): prescribed Fosamax (oral alendronate).
BC/bone mets dx 2006, IV pamidronate 1 year, then 6 months of IV Zometa to stabilise a hip met.
Then oral ibandronate. As far as we know, my bone disease is stable. (I also have liver mets and am on Xeloda/capecitabine.)
Been asking my BCN about having another DEXA scan - to see if my bone density is reasonable for my age (62) and diagnosis - but the oncs are not keen. Nothing has been said about kidney damage!

And a second post, to make sure that this new thread appears in Latest Posts!

Hello Mrsblue,
Not sure if this is relevant but I have wanted to ask someone about this. I had a diagnosis of bones mets same time as I was diagnosed with BC. Since then, 2010 I have been on zometa once a month without any problems. Recently I finished chemo for a recurrance and saw my ONC after treatment to go through scan. Treatment had worked but he said bones were still abnormal. He then said my bones were “very” dense and did I want to stop zometa. What puzzled me is that I thought this treatment was for the rest of your life if you have bone mets. I decided to keep the treatment as I’m now on Arimidex which is supposed to thin bones. He didn’t offer any other treatment after zometa.
Claire

Hi Claire! You raise several issues in your post:
Bones being “very dense” - as we all know, bisphosphonates build up bone, so an increase in bone density is normal. When I was re-scanned (DEXA) after two years on Fosamax, the b.d in my hips had improved by 10%. (In fact I’ve never heard of anyone on bisphos who hasn’t had stronger bones as a result).
A complication is that there are two types of bone mets, one of which causes abnormal overgrowth of bones, while the other one makes holes in the bone tissue (this is an over-simple explanation, please check it out somewhere, looking for the words “osteoclastic” and “osteolytic”). This could be why your onc used the word “abnormal”. However, both types are helped to heal after treatment with bisphos.
Then there’s the question of Zometa and hormonal treatments such as Arimidex, which do cause bone thinning (though tamoxifen does not). At my hospital, it’s usual to give IV pamidronate or Zometa when bone mets are diagnosed, then switch to tablets (ibandronic acid) when the mets are stable on bone scans. (the nuclear medicine tracer scan, not DEXA). Zometa/zoledronic acid is the strongest bisphosphonate licensed in UK. I have done well on ibandronate, but not everyone can tolerate tablet bisphos… and for those having regular IV Herceptin, it can be convenient to have Zometa on the same treatment day.
Hope this makes some sense and helps! There is also BCC’s booklet on bisphosphonates,
www2.breastcancercare.org.uk/publications/treatment-side-effects/bisphosphonates-bcc94
Also, the Wikipedia article en.wikipedia.org/wiki/Bisphosphonate has been rewritten since I first read it. It’s now very useful - as you’d expect, some chemistry, but it also explains their uses in treatment and side effects (might be too much information for some…)

Hi

I was diagnosed with bone mets in 2008. I was pamidronate for 3 years. It was stopped about 12 months ago because mets were stable and there was a concern that long term use could lead to kidney damage. Last bone scan report Sept 2012 said mets were stable but more avid and that this could be because of because of healing. When I checked out what avid meant I was advised that this is also associated with progression. I am a bit confused by the scan results. I am going to ask for another bone scan in a couple of months time as this may shed more light on the avid issue i.e. is it healing or progression. It just goes to show that bone scan results can be difficult to interpret.
I don’t know what type of bone mets I have. I think I did read somewhere that the holey type ‘lytic’ are more common than the one’s that make bone howeverr I may be wrong on this. I would be interested to know if anyone else has info on this.
Alex