I've been taking oral Ibandronic acid tablets every day since starting on aromatase inhibitors nearly 3 years ago.
Before starting the aromatase inhibitor or the ibandronic acid I had a DEXA scan to use as a base line indicator. These are repeated every 2 years approx whilst on aromatase inhibitors.
I have been advised the length of time for taking both is 5 years.
After taking you can't eat or drink for 30 mins and half to sit upright for an hour also.
I was advised 3 years ago that IV infusion was only possible by self funding and it was also only available at certain hsopitals.
Hope this helps
thought I would add my penny worth into the discussion. I am 3 yrs post finishing treatment and I had 4 doses Iv of zoledronic acid and take Femara I have had I bone density scan. I think you should all request a bone density scan at some point especially taking an A1 lo g term.
i have not heard of taking the biphosphotates orally but that may be a new thing I believe 6 doses of Zoledronic acid are suggested now although my Oncologist said the research really didn’t show any difference between 4 and 6.
Hopefully you'll be fine with the IV, I had that through my chemo only felt a bit tired nothing else. I think some people get some flu like symptoms for a couple of days for the first one then their symptoms improved. I think it's a bit rough that your insurance won't pay for your infusions - it's all part of the treatment, hope you get refunds for it soon.
That's interesting what you were told about the scans etc, I wondered why I've not had any either but not seeing my onc for another couple of weeks to ask, thanks for sharing.
Good news, and thanks for updating us and also for sharing what your onc said about bisphoshonates (I’ll never spell that word!).
Go you indeed! All the very best to you for your IV next week. 🤗 xx
Well I’m chalking today up as a marginal gain!
doing extra rads instead of node clearance surgery ✅
got iv bisophosphonates instead of the tablets but have to self fund as health insurance won’t pay - yet! That’s half a ✅
no scan unless any symptoms, once it was explained I did get it, apparently only a few yrs ago bisophosphonates weren’t prescribed as they are today so if you had aromatase inhibitors you automatically got scanned regularly and bisophosphonates would be prescribed if necessary . Now that most people are given them both because the bisophosphonates actually have a side effect of stopping the cancer spreading to the bones. Hence no scans unless there is something to be checked.
I now have the iv stuff next week to look forward to now - go me!!!
thanks guys xxx
I hope your appointment went well. I'm sure you discussed bisphosphates during your appointment but thought I would still answer your questions.
The bisphosphate I take is a daily tablet, I understand there are others which are weekly/monthly. You have to leave it at least 30 mins (45 mins for some) after taking the tablet before you can take any other meds. I take the Letrozole at bedtime as it can cause dizziness and as a driver I did not want to risk this. I can't say whether this is a side effect which would affect me as I'm asleep but didn't want to risk it, you may find you're ok with it during the day - I think it's trial and error as to what suits each person.
I would be a bit reticent taking the oral form if I suffered from heartburn as these can definitely make them worse. If I was you I would have a frank discussion with the Onc on whether you would be better taking them by infusion rather than orally and ask them to explain their reasons for each method.
It always seems that no matter what stage of treatment we are, there is always things to cause us confusion and anxiety. I think it is even harder to get your head around when you're trying to make sense of things with little medical support but at least there are some fab people on here all to willing to offer support when you need it.
Good luck and hold your corner in the negotiations! Always easier said than done though. I didn’t realise that about the Nice guidelines, I had a DEXA scan even though I am on Tamoxifen. I would have thought it would be good to have a baseline measurement - but I’m no doctor!
Do come back and update us if you have time/would like to.
Thanks Evie I’ll ask but I doubt it very much as the nice guidelines say you can only have a dexa scan if your having AI and no bisophosphonates
i know he’s going to recommend both but we haven't begun negotiations yet!
appointment is at 3.30 pm today xxx
Hi ruthie2 - all the best for your appointment today, I hope I’m not too late to suggest you ask about a DEXA bone scan to check your bone density before your start aromatase inhibitors. It’s a simple scan, they just scan your hips or hip area and use it as a baseline to check in a year or two, as AI can cause bone thinning.
Thanks Joemic, that does sound like the road I’ll be advised to go down. Can I ask if you have to take them every day? I know some are taken monthly which sounds much more doable. I do get heartburn quite a lot, plus like most I don’t like taking tablets anyway so I’m not keen anyway!
do you have to take the other at night? I’d rather take them all at the same time as I won’t forget as easily!
it does seem very hit and miss re scans and tests etc, I’ve not had a thing apart from ultrasound at diagnosis, just the bloods before chemo and today will be the second time I’ve seen the oncologist. I’m supposed to have rads next but there’s no rush, all this makes me think that if they’re not that fussed then my particular cancer mustn't be serious so why do I have to bother!?!
I'm on both Letrozole and Ibandronate (tablet form of Bisphosphonate). I have had no scans or any other tests before being advised to take them. My gp told me that the oncologist just asked that I have my bloods taken on a yearly basis to check U's & E's (urea & electrolytes) and bone profile whilst I'm taking the Ibandronate, no other scans, checks or anything, some oeople seem to have lots and others none.
I have been taking the meds for about 10 weeks with only the odd hot flush. I've not experienced any side effects from Ibandronate yet.
You need to follow the instructions for Ibandronate carefully as it can cause issues with your stomach and oesophagus if you reflux. Basically I take it as soon as I get up with a glass of water. You have to remain stood up or sat upright for one hour following to make sure it has gone down properly and does not come back up. The instructions say you can then eat and drink 30mins after taking it but says an hour would be better. I wait the hour then have a coffee, the best tasting drink of the day. I eat some breakfast 2 hours after taking the meds and so far have not had a problem. It also says it must ne taken on an empty stomach at least 6 hours after last eating, drinking or taking other medication.
Oncologist said it would have to be stopped 6 weeks prior to dental treatment and for 6 weeks after so as to prevent the osteonecrosis of the jaw.
I take the Letrozole before I go to bed, again so far so good.
Hi having finished 3 x ec and 3 x docetaxel 2 weeks ago I see my oncologist tomorrow to discuss the next steps.
i know I’m having rads to breast and armpit - eventually! There appears to be no rush or sense of urgency at all.
also it seems that oral bisophosphonates and aromatase inhibitors are to be advised as well as they give me an 8% and 2% extra on the 10yr predict.
are there any tests/scans I should be having? I only get the bare minimum so if it’s not essential according to nice there’s little chance- that’s private health care for you!
Any other tips advice or questions I should be asking I would be very very grateful x