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biphosphonates

34 REPLIES 34
belinda
Member

Re: biphosphonates

Hi Alison, Ibandronate is taken every day, after a 6 hour fast and with good old tap water.. 😞
I've been taking it a while now but still miss my early morning cup of tea.
Belinda..x

Alison44
Member

Re: biphosphonates

Hi - Mrsblue - yes it is bonefos sodium clodronate - I wonder what the difference is I think your ibandronate is once a week but bonefos is more 'potent'?

I will stick with the water then and will check on the fruit tea - which is just flavoured water?????

A

mrsblue
Member

Re: biphosphonates

Alison, the morning/evening tablet sounds like a different drug - maybe clodronate??
Not sure about fruit tea, the instruction leaflet for my Bondronat/ibandronate say "do not take your tablet with any drink other than plain water". But if your onc says it's OK to take the tablet with fruit tea, do let us know!

Alison44
Member

Re: biphosphonates

Hi - I too am on biphosphonates but take 1 in morning and 1 in evening - and do the 1 hour either side bit !

But I do drink a cup of fruit tea around that time as a glass of water (and maybe fruit tea?) helps absorption?

i think its milk and tea and coffee/juices to keep away from but does anyone know about fruit tea? !

I was told to take two tabs at separate times to prevent the reflux and to take gaviscon if needed - and it is sometimes,

A

mrsblue
Member

Re: biphosphonates

Yep you are all correct - longer wait, better absorption of the drug! I quoted the leaflet because I didn't want anyone to be frightened off taking it, I feel happier myself if I wait an hour 🙂 But during this time I'm getting hubby's breakfast and packed lunch before he goes to work, and it is nice to sit down with a BIG MUG OF TEA (and paracetamol if it's one of those mornings) and a bit of breakfast cereal while he is in the kitchen with me.
I take my calcium supplement (an over-the-counter one) with my Femara with my evening meal.

Marilf
Member

Re: biphosphonates

Zippy & Belinda -- I also wait an hour before eating/drinking/other drugs after taking my Bondronat in the mornings. When I started taking it all those years ago, my onc gave me some research findings about taking this drug as a tablet that looked at its efficacy compared to its IV equivalent (as good as, if not better!). The "no food/etc" time gap after taking the drug is when the drug is absorbed into your bloodstream -- the longer it's on its own in your stomach, the better, but they couldn't find any significant benefit to waiting longer than an hour, so it's an hour for me, even though the patient info sheet recommends only 30 minutes. And don't forget to sit/stand for at least an hour after taking it, so you don't risk damage to your oesophagus/windpipe. Might sound a bit of a faf, but it's not really that difficult to cope with, and this is a drug that's really worked for me.

Marilyn x

Zippy
Member

Re: biphosphonates

hi belinda

thanks - good to hear that 🙂 wondered if was goin mad!!! 🙂 x

belinda
Member

Re: biphosphonates

Hi Zippy..I'm the same as you..I wait an hour..I read (somewhere) that the drug stops working effectively once you've eaten. I also leave at least 4 hours between Bondronat and Adcal D3 calcium tablet 'cos I know you're advised to do this if you're on Bisphos infusions as the calcium tablet can inhibit the take up of the infusion. Whether it applies to the tablets..I'm not sure but err on the side of caution. Belinda...x

Zippy
Member

Re: biphosphonates

bondronat 1 hour........... i appreciate the box says 30min but have read when i did my research and perhaps i should have explained - that 2 hours is actually preferable before eating and drinking as the drug absorbs more into your body - so hence i compromise and do an hour before food and drink ! but that is my personal preference! and i may have read duff information! so please dont anyone else panic about the length of time - just research it to see if what i found was right or not! may be talkin complete rubbish!!!! lol!!!

R 🙂

Marilf
Member

Re: biphosphonates

Hi all

I've been on Bondronat bisphosphonate tablets for over five years, since my bone (& liver) mets dx in October 2003. I was lucky enough to be offered it as a "named patient" (i.e. got it free from Roche) before it was licensed in Europe, and it's worked wonderfully for me. I'm very angry to read that some of us are refused this treatment on financial grounds -- another example of the dreaded post-code lottery that shouldn't be a factor in our lives now -- as my onc team rate it highly, and so do I. In fact, my onc prefers to prescribe this tablet bisphosphonate, rather than giving us IV ones, as it provides a regular everyday dose of the drug -- and unlike IV ones, doesn't give us any misleading pain when another IV dose is due. My GP has never refused to prescribe Bondronat or Aromasin (exemestane, an aromatase inhibitor for my ER++ BC) -- if your GP refuses, please ask your MP to take up your case!

Marilyn x

mrsblue
Member

Re: biphosphonates

Bondronat for 1 hour... my leaflet says, "After taking your Bondronat tablet, wait at least 30 minutes before taking your first food, beverage, or other medication of the day. You should remain in an upright (sitting or standing) position while taking Bondronat tablets and remain upright for 60 minutes after taking your tablet."

I do try to wait 40-45 minutes after my tablet before having breakfast though.

And yes, I don't know how people with bad pain cope in the mornings or if they wake in the night with pain, at least 6 hours should be left between taking medication and the next morning's Bondronat. I suppose they would need a slow-release painkiller as late as possible the previous evening?

Zippy
Member

Re: biphosphonates

hi

Ive been on bondronat for over a year now - I had trouble getting it too. when diagnosed with tumour in my spine nov 07 (seems ages ago now!!!) my onc wanted to put me on bondronat but couldn prescribe it due to funding. i did some research saw how amazin it was decided i wanted it! and called my gp to see if they could prescribe it, it was a no to start with but after a discussion with her manager because someone else in the practice was gettin it, they allowed me too 🙂 and its the best tablet ever. it is i agree a pain in the rear to take, esp having the flu as when you wake up cant take a paracetomol or anythin so have to sit for an hour till you can eat and drink then take a tablet to sort yourself out! but apart from that its great and easy - much rather do that than visit hospital all time! 🙂

anyway - i think its disgusting that some peopl have to pay for it. i see on another thread that the governmetn are introducin free prescriptions for cancer patients about time - hope that this may help thos who pay for their bondronat treatment now??????

R 🙂

gill23
Member

Re: biphosphonates

Thanks from me too on your comments
I have a Groshong Line in atm and am hoping I can have it removed - which is why I was asking about oral instead of IV Bisoph - thing
I did have a dye injection into a vien on friday though and it was ok - so maybe my veins are recovering-?
gill

Ena222
Member

Re: biphosphonates

Thanks everyone for your comments.
Have just been to hospital for radioactive (?) injection, then back at 1pm for bone scan. Then at 3.10pm see Onc at a different hospital to get results. Will ask Onc, about bish -bosh's
Ena x

lizcat
Member

Re: biphosphonates

Hi all,

I had my 5th Zometa on Fri. I was diagnosed with bone mets from early on but they are only small - 1 in spine and some on ribs - and then in Oct a bone density scan showed the start of osteoporosis. My onc had already decided to start me on bish bosh and after a discussion it was decided to give the iv as long as my veins hold up ( 2nd go was successful this time !). Apparently the tablet forms can give heartburn/acid reflux as more of a side effect plus there is the waiting around and as the chemo had given me some heartburn, she was trying to keep it to a minimum. As I'm still not at work, going to the hospital once a month for the drip is fine and I'm monitoring the heartburn and see if gets any better or if it's the food I'm eating - cutting back on the cakes and biscuits at the mo !

The good news so far is that the zometa seems to be working and keeping things under control so long may it last !

Ena - hope you get what you want. I've read that it costs approx £1000 per year but let's face it, that's going to be a lot less than if you don't have it and need more expensive treatment later on.....A GP I saw once wouldn't prescribe branded tamoxifen on grounds of cost - had to have the generic form and that was the grand total of £2 a month cheaper. Wouldn't care but I pay anyway !! Nurse told me to see a different GP and get the branded one which I did no problem !

Liz x

celeste
Member

Re: biphosphonates

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.

KatherineM
Member

Re: biphosphonates

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

gill23
Member

Re: biphosphonates

so are IV bisphosophonates stronger? or does it depend on which one you have?
gill

LottieLemon
Member

Re: biphosphonates

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!

geobar
Member

Re: biphosphonates

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

belinda
Member

Re: biphosphonates

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

mrsblue
Member

Re: biphosphonates

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.

belinda
Member

Re: biphosphonates

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

mrsblue
Member

Re: biphosphonates

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.

dawnhc
Member

Re: biphosphonates

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

LesleyLP
Member

Re: biphosphonates

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.

jools
Member

Re: biphosphonates

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

Deirdre
Member

Re: biphosphonates

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

dawnhc
Member

Re: biphosphonates

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

mrsblue
Member

Re: biphosphonates

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.

ForumMember
Member

Re: biphosphonates

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

Ena222
Member

Re: biphosphonates

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

dawnhc
Member

Re: biphosphonates

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

KatherineM
Member

Re: biphosphonates

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

Ena222
Member

biphosphonates

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