For those of you on zoledronic acid, what is the procedure in taking it and what are your side effects? I’m trying to decide if I should start. Dexa score last year wasn’t super great and I have rising ALP levels that started since letrozole so that was offered to me. Thank you!
Hi @Kay0987 , I’ve been having zoledronic acid infusions every 6 months for the last couple of years, and have two more sessions to go. I also have some osteopenia, revealed by a Dexa scan when I started taking anastrozole. I go to the chemo unit each time and am there about an hour, mainly because they struggle to get a cannula in. The infusion itself is around 20 minutes. I have zero side effects - I wouldn’t know I’d had it if it weren’t for the trip to hospital. My recent dexa scan showed no deterioration in my bones since I started, so it seems to be working. Best of luck!
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Do you mind me asking what your T-scores were? Two of mine were below -2. In the US though we aren’t automatically put on biophosphates and I think you all are. It’s nice to know you have no side effects though. Blood work still holding up with it, too?
It’s not automatic here to go on a course of infusions of zoledronic acid. I am having it because they think my cancer could go on to metastatic bone cancer and zoledronic acid aka Zometa hardens bones making cancer less likely to invade them.
I was very reluctant to have these infusions and have found the chemo suite anything but welcoming.
It’s got a team of dermatology staff running a call centre in it which I found weird and I am out into a cold cupboard like area well away from women having normal chemo.
The blood test beforehand is a bit of a nuisance too as I have to go in to London by train on separate days.
Next blood test is late December and infusion is on 4 January 24. I thought this was mad but I couldn’t change it! I also have to go to the dentist on 18 Dec to make sure my teeth are ok as Zometa can affect them.
So far so good on that side despite ageing gnashers of a 68 year old. After next infusion I have had 3 of 6 so halfway but I will be glad when it’s over.
Seagulls
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Imon zoledronic acid tablets 1 per day and so far so good. I take it as soon as i get up with my letrozol and apart from mild heartburn for the first week ive had no other reaction . You are told to take it at least an hour before eating with just water but over the last few weeks ive started having a coffee with it and have been fine x
Hi Tricia! I didn’t think zoledronic acid comes in tablet forms. Are you sure that’s what you’re on because that would be much better than an infusion.
In tablet form its ibandronic acid but basically the same thing
Hi @Kay0987 , my original T scores were -1.0 and -2.0, I can’t remember which was my hip and which was spine. I haven’t seen the scores from my recent scan two years later but the oncologist said they hadn’t changed. I think all my bloods have been fine so far, nothing noteworthy.
Thank you, Sephie!
Zeledronic Tablets can irritate the oesophageal tissue and cause cancer. So the tablet form has drawbacks as well.
I think on balance the infusions may be safer unless you get either of the rare side effects of damage to the jaw or the thigh bone associated with infused version.
I am looking forward to the third infusion soon half way through…
Seagulls
Thanks so much, Seagulls. I think I’ll probably choose the infusion instead of tablets after more research. My oncologist (and the nurses here) did confirm that rising ALP levels in post menopausal women could signal bone loss and that’s my gut to what we’re looking at. Would prefer to head it off if possible before I go on to develop full blown osteoporosis. Granted, that’s not cancer but it still wouldn’t be a good time.
I’m gonna be having Zoledronic acid infusions, don’t know when yet.
Bit concerned about side effects.
The more i read about it, the more i worry.
What’s the worst side effect anyone has had ?
Thanks.
I had my first one last month and it was pretty easy. Being back in the chemo room was a little triggering but I was in and out in half an hour. For the first couple of days after I felt a tiny bit achey but it wasn’t bad at all. Ear hurt a little which was kind of surprising. Got a runny nose with it that seems to be hanging around but that’s not particularly bothersome either. Hoping next infusion I have nothing 
But truly, pretty easy. I know a lot of people are fearful of starting them due to the jaw issue but that’s so rare. Personally, I figured I’d rather have the lower recurrent rate associated with them and not have to worry about osteoporosis.
Thanks Kay.
It feels a bit like i’m starting all over again.
Will keep posted, how i get on.
I decided to think of it as a safe medication to take without awful side effects that will help me continue to fight cancer. And that’s exactly what it appears to be thus far. Good luck!!
I seem to have escaped the jaw and inner ear rare side effects but I am now getting mouth ulcers which are apparently a rare side effect of zoledronic acid too. I got myself some bonjela which I am using regularly . It has definitely helped but they are still there.
I think having 6 infusions over three years is not that bad but you need to drink a pint of water or so in the hour before you have the infusion and have blood tests within three weeks or so of each infusion.
I think this is to check your calcium levels are good before you have the treatment. I take two adcal3 tabs a day they have sugar in them and I can’t stand them unless I suck them and then chew the remains. They are huge and sickly yuck yuck
They just check my kidney function for it and call it a day. But then I get my blood work every six months right now so no need to do more than that they said. I started getting a mouth sore but the mouthwash I bought for chemo I still had and that got rid of it.