AIs and Zoledronic acid infusions

Hi c22 

I was diagnosed with TNBC in April 2022 and started zoledronic acid infusions (Zometa) in December 2022. I have them every 6 months so have had 4 so far with no side effects. The actual infusion only takes about 15 minutes but then I have a saline flush afterwards which lasts another few minutes. 

My oncologist wants me to have this for a minimum of 3 years but 5 years if I can tolerate it. So far I haven't had any side effects so it looks like I'm on course for having it for 5 years.

Happy to answer any further questions you might have about it.

Thankyou great to know 

are you on AIs as well? How are they for you?? 

As I don't know what Als are, I think it's safe to say I'm not on them.

Ok!!

maybe I should have said Aromatase inhibitors like Letrozole - I think that’s what they are suggesting for me as I’m post menopausal 

No, I'm not on Aromatase inhibitors.

Hi there, I've been on letrozole for almost 3 years now.  No major side effects, just some occasional joint pain and that's only when I don't do enough exercise. I find walking keeps that joint pain at bay.  Like Latchbrook, I am also on Zometa every 6 months, for 5 years.  I felt like I had bad flu after the first one, but all subsequent ones have been fine in terms of side effects.  Best wishes 

Hello,  post menopausal and cancer was 100% estrogen positive so have been on Anastrazole since May 2022.  Doing pretty well on it but have made some changes to adapt to side effects.  I took Anastrazole in the morning for about 2 years and noticed when I went out cycling around noon that my thigh muscles ached.  Put up with it but now have changed to taking it at dinner time.  I am able to cycle in AM and early afternoon with not too much sore muscles.  
Some other issues are hot flashes, fatigue, sleep disturbances, very dry mouth at night, dry vulva and vagina.

Here are some tips.  I exercise regularly and every morning do stretches before getting up for the day.  Really helps. 
Wear light clothes and dress in layers.  Live in Florida so it is hot and steamy right now.  Keep myself hydrated too.

Use xyli melts for my dry mouth at night.  Sleep with a sheet and light blanket and throw off the blanket if I get hot.  Sleep naked too.  

Use a hyaluronic acid vaginal suppository every 3 days.  It is called Revaree but I don’t think available in the UK.  I am sure you have some some good ones there.

 I would like to take vaginal estrogen but medical oncologist said no but I am doing more research and going to see if I can.  
Well that is about it.  I also eat a plant based diet so I think that helps too.

Spoke with my surgeon today (not seen oncologist yet and will ask him the same questions) but when i asked if there was anything I could DO to reduce symptoms and more importantly to stop a recurrence he kind of looked at me blankly as if to say. Nope. Other than don’t drink too much and eat healthily he didn’t seem too fussed about anything else. Infact he said there’s no proof that anything else affects recurrence…… exercise….. turmeric….. nothing! And yet you have liz o Routan saying exactly the opposite re exercise. 

I mean you can’t blame a girl for being confused can you!!

anyway my plan is to carry on exercising as much as I physically can. It makes me happy if nothing else. And although I know being fit did nothing to stop me getting cancer (something I struggle with a bit tbh) it definately has helped me recover pretty easily for three surgeries and I’m just hoping it works for the next bit!!

thanks for helping me out with the replies…. It’s so interesting….. and whatever the doctors say o can’t help but see an anecdotal trend here that exercise helps…..

I had a lumpectomy and lymph node removal last December I had radiotherapy and am now on Letrozole every day for 5-10 years the side effects are minimal apart from fatigue and slight depression. I am having a Zoledronic Acid infusion next week and then every six months I would like to know If there are any side effects, I have been warned of possible side effects but would like to know if anyone has experienced any. This is my second experience of breast cancer I had grade 3 in 2010 and had a bad time with chemotherapy, this time it is grade 2 and I opted out of chemotherapy. It has been very tough as I live alone.

Hi Brighton 

I've had 4 infusions of zoledronic acid and no side effects.

I'll keep my fingers crossed that you'll be the same.