Hi
the BC facilitator posted me a link to information on biphosphonates but I cannot get into it. I have tried using the search key on this website but no luck.
Does anyone know where I can find info on biphophonates as I want to persuade my onc. to let me have them.
Thanks a lot
Ena x
I dont know Ena - but it amazes me that you have to persuade your Onc…good luck, sure someone from BCC will pick this up,
cathyx
Hi Ena - I tried the link and it didnt work for me either.
If you go to the main page - www.breastcancercare.org.uk and put in the search box on the top right the word bisphosphonates (make sure you spell it right though) then in the nexxt page click on the word bisphosphonates in the list then click on the bisphosphonates pdf link it should come up
Dawnhc
Hi Cathy and Dawn
Thanks for replying. Dawn, found article, thanks for talking me through it. I went into search on another page and it came up with a Topics category and a Comments category but was in neither of those. I noted the spelling!
Well, interesting article. When I was diagnosed with mets to sternum and surrounding tissue, onc said not worth taking bis - risks outweighed the benefits. I was pleased not to be taking any more drugs having just finished 5 months of awful chemo (Cisplatin/Gemcitibine). However, now I appear to have spread to the ribs (waiting for bone scan to confirm this) I think I should be on bis, although Onc. did not mention it the other day. My husband thinks this is down to cost - apparently £1000 a year to put someone on bis.
Do either of you take bis? Tablet form or IV? do you know which is best?
Ena x
I have been taking pamidronate (a bisphosphonate) for more than a year now to counter the effects of anti-oestrogen hormonal pills. It involves an infusion IV of 1.5 hrs once a month. for the first three months I felt very zapped out the next day but now I get no side-effects. My oncologist says I must have these infusions for 2 years and then go on to tablets. I was on Femara (now on another, similar drug) but she said it was essential to prevent osteoporosis. I’m surprised that Ena was not offered this!!
Judith
Ena, was your bc a hormone-positive one? The drugs for treating this type of bc (though not tamoxifen) cause bone thinning, so we need a bisphosphonate to strengthen bones - I take a daily tablet (Bondronat) though I had intravenous pamidronate when first dx with bone mets.
I hope your onc reconsiders! - or maybe you could ask for a second opinion.
Hi Ena - I am on pamidronate which is intravenous bisphos. Have been on it for 6 years now every 3 weeks. I tried the tablet form some 3 years ago but couldnt get on with it. As i have to have iv herceptin every three weeks I asked to go back on iv pamidronate.As your bone mets has started to spread I would push for bisphos. Mine spread very extensively and rapidly before I even knew I had bone mets! I know we are all different but if he says no I would want to know what steps he was taken to be sure it wasnt spreading further. I would also ask what were the risks of taking it.
dawnhc
HI Ena, I think the main risk of bisphosphonates is osteo necrosis of the jaw (ONJ) which happens in only a very small percentage of women on bisphosphonates. I have also been told it can be quite “hard” on the bones and that taking calcichews is a good thing. But I was prescribed bisphosphonates (zometa - a three weekly infusion) as soon as I was diagnosed with bone mets and I definitely think it has slowed things down.
Deirdre
Hi I was prescribed infusions on pamidronate at the start of chemo. Once chemo had finished (Sept 2007) i went onto the tablet version. Have coped really well with no side effects. In almost two years since diagnose my bone mets in my hip have stayed stable and have not grown. I put this down to the bisphosphonates
Hope you get them prescribed
Jools
Sorry to steal/jump in on your thread Ena, but just wanted to say that this is all really encouraging to me as I was only diagnosed with bone mets just before Christmas. I had one infusion while I was still an in-patient (Pamidronate) and within about ten days the pain was loads easier (I have to put it down to the Pamidronate as I didn’t change my painkillers)
However that was about three and a half weeks ago now, I’m due another infusion next week and my back has been really stiff and achey again for the last couple of days whereas up until Mon/Tues of this week I had pretty much full mobility. Is this normal? Do the effects wear off and need to be topped up again or is it just a coincidence that my back was so much easier within days of the Pamidronate? I’ve had real trouble getting in and out of the car today.
Hi Lesley - i found when i was on pamidronate 4-weekly I always knew when my next one was due! I was switched to 3-weekly after my 3rd one I think. This was mainly because they were so extensive and because they did get worse before they started to improve. Now I have been on pamidronate for 6 years i don’t usually get the ups & downs.
dawnhc
That’s an interesting point about the IV treatments. I have had both pamidronate and Zometa, 4-weekly (at separate times though!) and I didn’t particularly notice a difference in bone pain when the next infusion was due.
Regarding osteonecrosis of the jaw, yes there appears to be a risk but almost all cases have been associated with tooth extractions or gum/jaw problems, normal filling of cavities should be OK but remember to inform your dentist.
Hi Ena and All…I used to feel a bit achey just before my next Pamidronate infusions. Ena I now have bisphosphonat tablets, Ibandronat…they are a bit of a bind, you have to drink them with water and wait an hour before eating or drinking first thing…you also have to stay upright for that time…no back to bed for another 40 winks…but I’ve got used to a routine and take them when I get up…what I was going to mention though was if you think you’re not getting bisphosphonates 'cos of the cost (I think this does happen sometimes) it may help you if you ask to try the tablets as after the first pack I got mine through my GP…prescription…so your hospital might need to only provide the intial 30 days worth…just an idea…Belinda…x
Hi Belinda, my GP won’t prescribe my Bondronat (ibandronate) tablets, I have to get 3 months’ supply when I go for clinic appointments, and I have had to pay, too! Apparently it’s something to do with this being a relatively new drug, rather than cost. The £7.10 prescription charge is only a small contribution to the cost.
Hope all this (or some of it) is helpful to you, Ena.
Hi Mrs Blue…yes I’ve heard of some GP’s refusing to prescribe…hope you get bisphosphonates one way or the other Ena…it makes me so cross we get these differences in what’s available to us across the UK…I’ve never had a problem getting my tablets through my GP…one pack at a time and standard prescription charge.
Belinda…x
Hi Mrs Blue
I have taken oral bisphos for 2 years ( Bonefos) and the Chemist never had sufficient tablets in stock to supply me. They told me once that each tablet cost £10 and so they carried a limited amount. These were prescribed for me by the Oncologist and although I had to pay for my prescription prior to reaching 60, I never had a problem with my GP continuing to prescribe them. My understanding was that you GP is not allowed to refuse if your Oncologist/Specialist says you need a certain drug. Maybe PCT’s operate to their own rules I don’t know. Since my bone mets have progressed considerably I am now going to have IV bisphos, not sure if it will be 3 or 4 weekly but I hope that it stabilizes them. No idea whose budget it will come out of because I will be able to have the infusion at my local hospice.
Barbara x
When I was prescribed oral bisphos, some 3 years or so ago, there was resistance from my GP about prescribing them. He said it was a category of drug that needed to be prescribed by the hospital, the hospital disagreed. I had a suspicion that the GP disapproved of the expense. Fortunately the bc nurse sorted it out and the GP did prescribe in the end. I have now swapped to IV pamidronate as the hour after taking the tablet waiting for my cup of tea each morning got a bit wearing.
I do have ‘numb chin syndrome’ so do worry about osteonecrosis of the jaw but have thought that the benefits outweigh the risks. Maybe I will check that out with my onc next time!
so are IV bisphosophonates stronger? or does it depend on which one you have?
gill
I think the IV bissh bosh is stronger than the tablet forms, I have been on IV Zometa for 14 months every 4 weeks, and my insurance company is none too pleased about it, but I have very little bone pain and my bone mets have been either improving or stable the whole time, I don’t know whether that continue but its a pretty reasonable result so far. The reason GPS sometimes dont prescribe things is purely down to an argument over who pays the bill - I have had this discussion with them, they want the hospital to pick it up so their budget doesn’t get used up. As for side effects - the first one or two I infusions I did have flu llike symptoms but after that its been OK.
Ena - I hope you get what you need, I think anyone with bone mets should be on them, it may be in clinical guidleines somewhere that you can quote to your onc…
Cathyx
I am on IV pamidronate - I find this much easier than the tablet form. I have it 3 weekly with ,my herceptin. No side effects to my knowledge, and seems to work.