I know exactly how you’re feeling, I had my final mammogram after nine years because of having breast cancer twice so I had a little add-on. Couldn’t wait to get it over with, but then went downhill worrying about what’s the future held. However after chatting to a couple of the lovely ladies I’ve decided to pay for a private mammogram from now on. (This may not be possible for everyone).
Should you feel concerned about anything you will still be able to call your breast cancer team, I feel sure they’ll be there for you.
Please don’t worry. I had my first infusion in October with absolutely no side effects. My second one is due in April. It’s only once every six months and it doesn’t take long. Thinking of you.
I am having zoledronic acid for three years, twice a year. That is, every six months so I end up with six of them. I got told about the huge list of side effects including the death of jaw bones and the inner ear bones, not to mention about 40 other rare and less rare ones. I was 67 at diagnosis so I was worried about my teeth as I have had a lot of dental surgery over the years mainly due to overcrowding so a lot of healthy teeth taken out, also my wisdom teeth. That must be why I lack wisdom now.
Anyway, the first one I had I was told to drink loads of water a couple of hours before hand on the day, and I had a blood test a week before. I am not sure what the blood test was for but it may have been something to measure how much calcium you have in your blood. I had been taking AdCal3 tablets for quite a long time at that point.
On the day I sat in a very cold and uninviting room, and was linked up to a bag of watered down zoledronic acid after my temperature had been taken in my ear. My husband was with me in the same room which helped with moral support. The stuff was pumped round by a machine that made a bit of a noise and the room was so cold I felt a bit like I needed more clothes on. I have always been in a similar room since then and always cold! I am on my third now, so only another three to go and freedom!
I was worried about the jaw but in the end the only side effects were tiredness and fluey feelings for the first and that didn’t stop me going and doing a shop at Tesco and driving there about five miles each way. The next couple of days were a bit similar so I had short afternoon naps and drank water and ate sensibly but I do that anyway.
Sine then I have had two more infusions. The first I was cold as usual but had a different side effect a few days later. I developed what I thought was a tooth abscess under my back molars. I rushed off to the dentist to try and get rid of it, and was told my teeth were fine. So that was good, as I was convinced I’d need to have one of them out at least.
The next infusion went without side effects but I did find the blood tests a nuisance as I had to go by train for them and for the infusion and on different days. But at least I knew I was ok to have the infusion. You can have a blood test several weeks before the infusion so that gives a bit of flexibility. I got the same side effect though, a lot of mouth ulcers under the left molars, on my tongue and roundabout. I discovered this was a rare side effect of zoledronic acid and found the most effective remedy was using Bonjela and corsodyl toothpaste and always using toothpicks, brushes between the teeth and keeping my teeth scrupulously clean. I fact they have never been so sparkly!
Good luck, it’s a bit of a pain but I have survived despite thinking how horrible it would be. And I tick off each one I’ve had and keep thinking I am closer to the end. I am half way through now. Some cancer research on Zoledronic acid infusions in the Netherlands (I think) has been done that suggests 4 infusions may be as good at 6 so if I think I want to stop before 6 I may do that. Incidentally another name for Zoledronic acid is Zometa which sounds more soothing!
Hi @haylo77, just checking in to see how did your first Zometa infusion go? Did you suffer any side effects? Zometa is also recommended to me by my onc but i haven’t gone on it yet… still need to get my teeth checked. I have gone through all the posts in this thread and the side effects didn’t sound too scary/ Would love for you to share your experience. Sending you hugs.
Thanks everyone for all the advice. I had my infusion on Saturday and was able to take a sedative after speaking to the nurses which really helped the anxiety. The smell of the ward was a bit triggering but it wasn’t for more than an hour and I had my Mum with me for moral support. I felt very achey afterwards and didn’t feel well enough for work today. I have reached out to the mental health service for some extra help so I can talk things through. I feel much more prepared for the next one in 6 months.
I thought I was doing great! Even forgetting about it sometimes. Now I want to pick a fight with everyone. Even people who were with me the entire time. I want to tell my sisters that It was totally ignorant to laugh at my appointments, even though I know it was out of nervousness. I want to tell them there was not one funny thing about the appointments and I wished I had gone alone. But I can’t. They laughed because they were scared to death about losing their kid sister
I am sure you are right. I get the same reaction to bad news. Laughter can help but other people may well get offended by it. But it is a spontaneous reaction isn’t it?
