Hi, I have just had my first zoledronic acid (Zometa) infusion. I am having this to protect my bone density, rather than to treat a secondary bone cancer. I am 31 years old and are on tamoxifen and zoladex. For the first 2 days I felt like I had flu, high fever, aches in limbs, felt a little sick, then after 2-3 day it got better. It is now 6 days post infusion and I still don’t feel 100%, the only way I can describe it, is I feel like it is day two after a really bad hang over (drank bottle of wine, stayed up late), where your head still feels a bit heavy, your feeling a bit tired, and you have the feeling you need to keep yourself well hydrated, and not wanting to touch alcohol. Has anyone else felt this way, or can advise me on the side effects of this treatment? I only have to have it every 6 months.
Hi Boo,
It shouldn’t be too bad for you - even if you were to get the same side effects each time it will only be once every 6mths as you say. I have been on bisphosphonates too long to remember what the first time was like but it was only a few months ago that I switched to zoledronic acid. I have it every 3 weeks and don’t notice any side effects - so good luck with it. It is supposed to be good stuff.
Dawn
xx
Hi again, I am really keen to hear from those who take Zoledronic acid infusions. I have experienced flu like side effects, now I feel I have symptoms of anxiety, got it checked out today and pulse rate is very high, I am having trouble sleeping, and I am mildly breathless at times. Anyone have these problems? Do they last long after the infusion? Boo
Hi Boo,
I am on zometa for bone mets and then zoladex and arimidex (was on tamoxifen initially but side effects bad). Have been on this combo for over 2 years now.
I think the anxiety/high pulse/poor sleep is more down to the zoladex rather than the zometa. Last year, I got so bad I had to go on prozac to ‘calm’ me down - I would snap at the slightest thing like whether I wanted a cup of tea or not (!!) and was getting so little sleep I was at the end of my tether. Had tried all sorts of natural remedies without success. I wanted a break from the drugs but onc etc advised against even a month’s break as I was at such risk of further spread so prozac it was. The difference was immediate - not a complete cure but enough improvement to make me feel more normal. However, I gather you cannot take tamoxifen with prozac but there are other anti-depressants or perhaps you could swop from tamoxifen to something like arimidex. Do get in touch with your oncology team to discuss it further.
Re the flu like symptoms - I had them after the first couple of lots but have been fine since. I do however get very tired, very suddenly the night after the infusion and this happens every time. Drink plenty of water while the drip is going in too - that helps.
Sorry if I’ve blabbed on a bit but I hope it’s been helpful. PM me if you want - that’s fine. I’m 45 now by the way.
Liz
Hi Liz
I was starting to think Dawn and I were the only ones on here being given Zoledronic acid. Very interesting you say it might be the Zoladex, making my pulse fast, sleeplessness etc. I have been on Zoladex since June this year and apart from the dreadful hot flushes and night sweats, emotionally I feel a lot more stable, than I use to when I had periods, pre breast cancer days! I seem to tolerate the tamoxifen OK, again apart from the hot flushes. I have to say the poor sleep is really getting to me. I never get a good nights sleep, just spend the night switching a fan on and off! Coupled with having a 3 year old up in the night, it is not good.
The thing that is different since having Zometa 10 days ago is I can’t get to sleep, this I had no trouble with. I feel anxious, toss and turn, my heart is racing, and I keep having to make deep breaths to feel like I am getting enough oxygen. Does sound typical anxiety I know, but even the GP who catched me over today said he felt it was something that was causes it rather than it coming from my mental state.
I am also on thyroxine, but a very low dose, was checked 8 weeks ago and thyroid spot on, they are going to check blood tomorrow and then go from there.
Emm I wonder… Thanks Boo
Boo,
There are quite a few of us on zometa but I think we all have bone mets and therefore have it 3 or 4 weekly as a regular bone strengthener. It does appear to be a good drug though. I had a bone density scan last month to compare it with the one from 2 years ago and my density had improved - woo-hoo!!! There’s now only one bit that is borderline osteoporosis and that’s where the mets are so it appears to be doing its job. Hope this helps you too.
All those side effects you are getting are sooo much like mine were - and at least I don’t have a 3 year old to deal with!! I often find I can feel sleepy in the day and have a mid-afternoon nap and then go to bed, doze off for a bit and then wake up and am wide-awake for ages! It’s so frustrating and really takes it’s toll long term. Please do get some help and look at other options. I was lucky in that my onc and surgeon fully appreciated how much I was struggling and they are both aware of the se of the drugs and don’t just dismiss them out of hand in a sort of ‘be grateful you’re alive’ type of way that I know some ladies have had to deal with. The anxiety feeling is all part of the lower hormone levels caused by the zoladex jab and is not part of a mental state.
Anyway, hope it improves for you. If you want a moan or whatever, I know how awful these se are, just shout!
Liz
Hi Boo
I have Zometa every 3 weeks for bone mets. After the first one I had flu-like symptoms and felt really awful - it lasted about 24 hours. But I never had them again - and I was told it would only happened for the first one. Hopefully it will be the same for you, and the next time it will be better. I imagine you had a higher dose and that is why your symptoms lasted longer.
finty xx
Hi Liz
Thanks for this, I think I will go back to them to discuss options. I will await the result of the thyroid test but I am sure these will still be stable and like you say it is probably the low hormone levels. I still think it might be the Zometa, or at least a contributory factor as it has only been a few days since the infusion that I stopped feeling like I had a bad hangover. I still don’t feel 100%, and the anxiety and sleeplessness does not help. My approach to all this is to keep life as normal as possible and try not to over analyse everything you are feeling, but I think maybe I need to see what I can do about these hot flushes and maybe if I slept a bit better I would feel better in myself. Thanks Boo