So had my first infusion yesterday. OMG I feel like crap, every bone in my body hurts temperature 38.9 headache from hell, I’ve taken paracetamol twice today already so trying to ho,d out for a few hours as can only take 8 in 24 hours. Any suggestions anyone?
Hi Jaxs
ive had 6 infusions I was told to hydrate prior during then after as it very dehydrating . I got UTI for the first time in my life after first and second then learned to drink a lot more
The aches and fluey feeling lasts for about 7/10 days for me but we all differ . After approx 5 days I get pain in gums similar to sinus pain . Two week since no 6 and I feel back to “normal” whatever that is
Let your unit know about high temp they will advise best way to treat it
one more left in Dec …. ending of three year treatment
I felt like I’d been hit by a bus with flu like symptoms after my first one but they passed after 24 hours. Drink lots of water and take paracetamol. Best wishes
On my first infusion, my symptoms lasted about 36 hours. I didn’t really get out of bed and slept through most of it. The second wasn’t quite so bad - had aches though. I didn’t know it was dehydrating, so thanks Northerner for the tip.
Hello, I am glad the end is in sight for you with the infusions. Oncologist assured me that no 2 (3 weeks ago today) would be better than no 1. Wise chemo nurse told me some people are sensitive to it. Different bad this time. First of all the most extraordinary overheating I ever experienced (January was the opposite but I guess this is just because our thermostats are bust by hormone suppression treatment). Since then got achey jaw, low mood, and sinus oddness. The jaw thing in particular is worrying me as it’s catapulted me into red alert for osteocronosis (sp). I also put my neck out in the achey immediate aftermath. I no longer really know what’s zometa and what’s letrozole but so far got my neck checked by BCN who summoned a doctor and who saw nothing of concern. My own actual BCN who is very experienced is back from leave now and I’m hoping to see her end of the week. I’m a terrible jaw clencher at the best of times and so I’m hoping everything will gradually subside or have ok explanations. I found your post very helpful - thank you
Hi all depends how you are on chemo with SE . I had 6 x EC felt rough by no 6 so then Herceptin felt not too bad but still every three weeks . To be honest now zoledronic SE every six months feels t too bad lol
My dentist was adamant not to worry too much about jaws it’s a rare SE .
Make sure you get your dental check prior to the start of treatment .
best wishes for rest of treatment
I think I’m the exception not the rule, plus some of what I’m experiencing will be due to letrozole. SE are so different for everyone. Various friends were laid out by Covid vaccinations but I have sailed through 5 as I’m in the extremely vulnerable group for non cancer reasons with a different condition. I am also in an acute anxiety phase at the moment so overly anxious and making connections that don’t exist. The jaw thing is super rare and the dental check pre ZA is the key thing. The vast majority are fine on ZA especially after no1. I think I should have rested after no2 rather than being in denial! Schedule is organised for no 3 to allow that.
I'm waiting for my first infusion too. I'm on letrozole and my dexa scan put me I th osteopenia range but after chats with a very helpful nurse from Royal osteoporosis society, plumped for 3 yearly treatments. The info especially regarding hydration is really good to know. My own GP was pretty useless and the most useful bit of advice was " Well you don't want a broken hip, do you ?"...
Thank you all for your responses to my fear of Zoletronic acid infusion! I am not afraid….
Let us know how you get on just do the usual thing we all do let your imagination run riot with horror stories then find imagination can be a bloody liar
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