Hello again
ok - I am beginning to understand all the names linked to bisphosphonates - Zoledronate (Zometa) and Ibandronate (bondronat).
My Oncologist has asked me to take part in a trial of bisphosphonates for 2 years, possibly up to 5 years.
The trial is looking into which is the most effective drug and the best method of administering it to the patient.
Zometa would be by I.V. every 4 weeks at the hospital.
Bondronat is by taking a daily tablet.
The trial is the only way I can get access to these drugs. - If I do not do the trial I will have to have a drug called H… (cannot remember the name) by I.V.
Now, I vaguely remember all the posts about these drugs - is everyone else who is taking theses drugs part of this same trail.
Has anyone been able to just choose these drugs without being part of a trial?
I will do the trial and the research nurse will come back to me tomorrow to tell me which drug/routine I will have. I have no say in the matter, and apparently, neither does she.
What experience do any of you have with either drug? Has it relieved pain and slowed down the progression of cancer spread in the bones?
Would be very interested to learn other people’s experiences. On Monday I was told that, as well as further spread in the sternum, I also have spread to a rib, my spine and a hip.
I’ve been using Zometa for almost 2 years now. As you say I have a monthly drip. It’s administered very fast compared to some of the chemo I’ve had. But it has done the job and there has been no change in bone mets, although the ones in my liver continued growing and I developed lung mets as well. So I am glad I had the Zometa. Very few side effects, had pain in my neck and shoulders after the first 2 and then stiffness after the 3rd but no side effects whatsoever since then.
I’m on monthly Zometa IV and have had 5 so far. The oncologist put me on it as I had one small area of bone mets in my spine and a bit on my ribs and have the start of osteoporosis (chemo induced) and apparently the drip should sort both or at least help. As far as I am aware there is no issue regarding whether I could have it or not or in what form so it must be down to funding if you can only have it as part of a trial - disgrace !! I read that bisphosphonated cost approx £1000 per year but it will save more in the long run if it stops the spread and fractures or is that too simplistic ???
I was put on the Zometa as I don’t mind going to the hospital once a month and the tablets can cause heartburn/acid reflux apparently and I was getting that from the chemo and rads. As long as my rubbish veins hold up and it works I assume I’ll stay on it.
Hi Ena
I think you will be on the ZICE trial - you can (presumably) do a search on here and find out more, well, at least you could do before the changes! The only way I can get Zometa is to go on the trial as Southampton HA don’t prescribe it! A cost issue I’m sure. I am on 4 weekly pamidronate but would go on the trial if it doesn’t work. You don’t know which arm you get but if progression occurs on the tablet form (or vice versa ?) I think they will change you but this is only from what I’ve heard. Good luck.
Nicky
Hi Ena…my understanding is Zometa is the most effective of all the bisphosphonates. I would jump at the chance to be on it but unfortunately you are only given Zometa at my hospital after you’ve had serious progression. Good Luck whichever you decide. Belinda…x
Hi girls
Thanks for your replies.
The research nurse rang yesterday to say I will be on the Bondrat tablets and not the I.V. Zometa as I would have liked ! typical, my luck, or lack of it. And, yes Nicky, this is the ZICE trial.
I have no idea which bisphosphonate is most effective…I have heard Zometa is good but I suppose this trial is to try and establish this.
I am worried I will not get on with the tablets - tendency to nausea etc, so I asked research nurse what would happen if iI felt I had to come off it. She said only option then, at Portsmouth Hospitals Trust is this older bisphophonate, H…(begins with H) taken through I.V.
Oh well, it is in the lap of the Gods. As I am Triple Negative this is the only treatment option open at the moment.
Take care everyone
Ena x
I am on bondronat - its great, and dont have any side effects. Only thing as said before on other threads is the annoyance of waitin an hour befor can eat or drink anythin but water and have to stay upright so no slouchin in bed!!! lol! but if you wish can do anything after 30 mins - I just wait an hour (as others do i understand) as it supposedly absorbs more into your body from an empty stomach. otherwise no probs.
i had probs gettin it but managed to get my gp to prescribe it luckily.
good luck and at least you wont have trips to the hospital every month! its not that bad once in a routine, and by the time youve showered in the morning and read a paper the hour or 30mins is up!
Just like to confirm what Zippy has said. I’ve no problems with Bondronate, once you get into the routine. The first thing I used to do when I got up was kettle on and breakfast. Now its take tablet, get ready, feed cats etc and by then ready for other medication and brekkie. I had no problems getting it either. Good Luck and take care x
Hi everyone
yes, just know it is a question of a new routine! Had my first tablet this morning and no ill effects - my friend took my son to football at 8.45am just to give me a bit of time to get used to tablet!
Am not sure what to do in the mornings - I take my 8 year old son to school at 8.15am and then walk on the hill for 45 mins - my daily exercise.
I can either get up earlier and ensure I can still have breakfast before the school run or get up a bit later, take tablet, go staight out for walk/school run then back for breakfast. I think I know which routine will win out…! I am still so sleepy every morning from the Oramorph that getting up is struggle. And painful as painkillers have worn off.
oh, that is the other thing…usually I make staight for the kettle and the pain killers but cannot take the pain killers for at least 30 - 60 mins after bondrate, so pain was bad this morning for longer than usual. In fact, have not been able to get on top of it at all.
Does anyone else have this problem in the morning?
Ena x
I think that’s the down side of the tablets Ena. An hour must be a very long wait when you’re in pain. Not very helpful right now but hopefully you’ll really notice the pain eases up when you’ve had a few weeks of Bondronat. Belinda…x
Just wanted to add my appreciation for Bondronat – I’ve been taking it for over five years, since my bone (& liver) met dx in October 2003. It’s really worked very well for me – I’m OK to wait an hour after taking it before I eat/drink/lie down/take any other meds, and have never had any side effects from this drug. My onc team feels that daily bisphosphonate tablets help us avoid possible problems of increased bone pain at the end of the month before IV bisphosphonate treatments. Hope Bondronat works as well for you as it has for me!
Oh something to add in praise of bisphosphonates! I went crashing down on an icy pavement last week. Landed heavily on my hip that has bone mets. Was wondering if I’d broken anything and how I’d feel the next day…stiff? painful? Anyhow I was fine…2 big bruises but ok!
x
Glad you are ok Belinda. The family wants to go skiing next year but I’m abit concerned with the bone mets and if had a fall. Going to ask onc when next there, I had assumed skiing would be a no no(not that I hurtle round the slopes mind you). I can still apres ski which would make up for it somewhat, hic! lol.
I must admit I’ve been a bit worried about falling on the ice over the past week or so - it’s snowed heavily here and then frozen. I had thoughts of my hip shattering into tiny pieces if I fell - nice to know you tested it out for us Belinda. Maybe these bisphos do work
Nicky x
Hi Lynni and Nicky…and I was completely sober.
For years now I’ve worried about falling over and breaking a bone but thank goodness for the bisphosphonates!
Belinda…xx
Hi Lynni,
Best to check with your oncologist but the bone mets do not necessarily mean an end to skiing. I skied for six consecutive days in January and have another week planned for April. I feel fitter than I did a year ago (perhaps thanks to the bisphosphonates!). Have fun and hope that you can enjoy the ski and the apres ski!
Shelley
I have been on the oral biphosphonates since Dec prior to that on pamidronate for about a year (had a break for teeth extraction).
I wake up and take the tablet with water and then have fruit tea which I think is ok I think a drink with no caffeine ie no tea or coffee, is ok (not juice tho) ? Also I was told it was alright to have pain killers with them (tho I leave it half an hour) if pain in joints from arthritis side effects of Arimidex is bad I take pain killers first then an hour later take the biphosphonate, and then have something to eat !
I have got used to not having breakfast and doing the school run now tho I do try to have a fruit tea as its warm !
Thought I would quickly bring this to the top again.
I asked my Onc. about bisphosphonates yesterday, or rather, specifically about Bondronat.
I have been worried by others on this site saying that they wait an hour between taking the bondronat and eating breakfast, just to be on the safe side. The packaging on my bisphosphonates say - wait 30 mins before eating and one hour before bending.
My onc. said if pharmacy said 30 mins then it means that. She said the drugs have been through a lot of testing and if it says 30 mins, then it is ok to eat after 30 mins. She believes waiting an hour will bring no greater benefit. She said I wasn’t to starve !!
So, don’t know if that helps anyone wondering what to do.
Ena x
otherwise no probs.