Just thought I’d post about this in case it is of use to anyone as, from what I can see, not everyone who could benefit is being routinely prescribed Bisphosphonates (Adjuvant Zoledronic Acid, e.g. Zometa). There is evidence that this very cheap drug can reduce both osteoporosis while on hormone therapy AND also reduce chances of getting secondary breast cancer in the bones in post-menopausal women. It’s a no-brainier.
I think the evidence base relates to the six-monthly intravenous infusions of the drug, rather than the tablets but am not sure. I am getting it but think this is only because I asked for it.
I think we should campaign that the funding issue is sorted out so that the treatment is given routinely to everyone who could benefit.
I had my first infusion of Zometa yesterday. I am post-menopause and had a lumpectomy in June, then a lymph node clearance in July. I am currently having rads, 7 down, 8 to go. I was given a leaflet listing possible side effects, the chief ones being aching bones and flu-like symptoms. I have been having pain today in my bones and joints which seem to move around my body. These are supposed to ease after a couple of days. I have also been on Anastrazole for a month and so far I haven’t had any problems with it. I am glad to be having both these treatments as I didn’t have chemotherapy. Hope other ladies in my situation are offered this treatment. Best Wishes x Lily
My oncologist has suggested I have Zometa Infusion - 6monthly cycle, however I will be expected to self fund! A lot of decision making for me as the cost is £600 a treatment.
When I asked about it I was told that they were not going to give it retrospectively - I finished chemeo and rads last december and I am taking Anastrazole. Is this what others have experienced?
It certainly seems to be a bit of a postcode lottery! I asked about iv zometa and luckily my centre was just about to start providing it so had my 1st dose end of August,Mitchell seems very hit and miss.
Interesting to hear the different approaches. I think it is criminal that this treatment is not available to everyone who could benefit from it. I was told by the Onc (who is very frustrated that it is not routinely funded) that it costs £4 a dose - so the £600 you were quoted, LGC Middlesex, seems excessively high. I would talk to your GP about funding options as it is an invest to save treatment - ie investing the money now potentially ensures no high treatment costs later. It’s effective use of resources and therefore a no brainier for the NHS.
Is Breast Cancer Care or another organisation campaigning about making Bisphosphonates universally available on the NHS already? I would love to support this.
if this article is right bbc.co.uk/news/health-37432935 it does seem to down to who is going to foot the bill. Health investment for an area is given via a variety of routes - through Public Health England, through NHS England and through Clinical Commissioning Groups (I work in the latter) - so plenty of opportunities to pass the buck on decision making. Where people are getting Bisphosphonates I suspect the hospitals are absorbing the costs as they are paid an agreed price for every patient contact by CCGs or NHSE depending on the type of care. Where people aren’t getting them the hospitals will probably be waiting for the costs to be funded - either as an additional payment or for the price to be increased to cover the costs - and it could be a long wait. I will rummage around and see if I can find out any further info.
I have been recommended to have zoledronic acid. I start Chemo next week FEC-T but not sure when you have the other. I will ask at the hospital Friday. I’m in the South of England, so there doesn’t seem a problem getting it here.