Hi everyone. I’d appreciate thoughts and feedback on the above. My oncologist has asked me to decide whether I want to undertake this treatment. She said that if the benefit to my overall survival % rate had been 3%, she would recommend it, but as it’s 2%, I’ve to decide if I want to go ahead. I’m nervous about making this decision, and also about the side effects. I wondered if anyone else is or has been in this position and what you have decided. Thanks.
Maggie
Hi @maggiem1 I have had 2 Zoledronic Acid infusions. I’m having 6 infusions, one every 6 months.
You would need a blood test a few days before each infusion, and a visit to the dentist to check there are no problems. I was told to go before each infusion but some people seem to just have one at the beginning.
The actual infusion only takes about 15 mins. I drive myself there and back. The first time after 24 hours I felt a bit grotty, a bit nauseous and unwell. This passed by the next day. The second time I felt a bit tired and ‘off’ but again it passed quickly. Several people I know had no side effects at all.
Only you can decide whether you feel it’s worth it but I personally don’t find it particularly traumatic, rather a bit of an irritation!!
Just read ur post . I had 4 session of Zoledronic every 6 months for 2 years and had very little side effect apart from feeling a bit weary. I was 69 (6 years ago ) and decided to have this bcoz of helping my bones as I get older, if I’d been 15 years younger perhaps I would have thought is it worth it 
Dont know if this helps but good luck with your decision and stay strong 
Hello, I was recommended to take this treatment to try to prevent cancer getting into my bones. It does, of course, have other benefits as our AI meds are detrimental to bone health and density. I was (and still am) absolutely terrified of getting jaw necrosis and I kept saying I did not want the treatment but the oncologist said that my risk of recurrence/metastasis was high enough to warrant it. In the end I wrote to Professor Coleman at Sheffiield University, a lead researcher on bisphosphonates and breast cancer, and he kindly sent me this:
The combined analysis of all randomised trials of bisphosphonates used alongside standard adjuvant chemotherapy and endocrine treatments was published in the Lancet in 2015 by the EBCTCG. In summary, their use prevented 1 in 4 bone recurrences and prevented 1 in 6 deaths at 10 years in women who were postmenopausal when they started treatment. This was statistically significant and clinically important. The benefit seemed similar between the different bisphosphonates tested and treatment for 2,3 and 5 years. As a result, most clinicians offer either intravenous zoledronate or daily oral ibandronate if the risk of recurrence or dying from breast cancer is considered significant, defined as more than 12 in 100 women dying from breast cancer within 10 years from the initial diagnosis .
Fractures with letrozole are common occurring in around 1 in 5 women over 5 years of treatment; a rate that is about twice that of an age matched population not taking letrozole. Fractures occur not only in patients with osteoporosis so normal bone mineral density is not a guarantee that fracture will not occur. Bisphosphonates reduce the risk of fracture by preventing the accelerated loss of bone that occurs while taking letrozole.
Risks with bisphosphonates are low. About 1 in 3 get a flu like illness for a day or two after the first infusion but this is much less common with subsequent treatments. Oral treatments may cause indigestion but not the flu like effects. However they have to be taken every day first thing in the morning and no food or drink other than water for an hour so the infusions are much more convenient. The risk of osteonecrosis of the jaw where an infection occurs in the jawbone typically after a tooth extraction is very rare with the six monthly treatment (or oral treatment) at less that 1 in 1000 women treated and much less than when infusions are given every month to ill people with advanced cancer that has spread with poor immunity or on chemotherapy.
I found this very helpful and I decided to take the treatment. I have now had 5. I have a dental check before every treatment and my experience has been very much like that @pat had.
It is a hell of a decision to have to make because with side effects you can usually say ‘I don’t like that so I am going to stop the meds’ but if you get jaw necrosis there is no going back. I still worry about it. I hope this helps you to make your own decision.
@laneycass I was also advised to have it to reduce the risk of bone secondariesand to protect as Im on Letrazole for 10 years. I am also on Calcium tablets because of the risk of Osteoporosis with AI’s.
I believe there is only a real risk of jaw necrosis, already a very low risk, if you have invasive dental work eg. root canal work or similar. So provided you maintain good oral hygiene and get regularly check by your dentist then the risks are very low.
Hi
I have had 2 infusions of zolendronic acid and not experienced any side effects at all. I have my 6 monthly dental check ups and my dentist explained that the risk from jaw necrosis is small . My dexa scan showed whilst I don’t have osteoporosis, my bone density is thinner. Given that bisphosphonates can help prevent a spread to the bones I am of the view to throw everything at it!
I have been having Zolendric infusions 6 monthly and the last one is in May 2026 . I was told that because my cancer had spread to lymph nodes and had a total node clearance and had 5 months of chemo pre surgery the advantages outweigh the slight risk with jaw when having dental treatment and went along . I did not have any significant side effects .
Hi Pat, thanks for getting back to me about your own experience and thoughts on this. It’s all such a minefield! I’m feeling a bit more positive now. Cheers.
Hi, thanks for replying and letting me know your thoughts on this, My gut instinct is like yours, it’s just the nerves that go with it!
Thanks so much for this clio. I appreciate your positivity and letting me know about your side effects. Take care.
Hi, this is so detailed, thanks for taking the time to share. It’s good to know I’m not alone in worrying about this, despite the low risk of jaw necrosis.
Just jumping on this thread. There are lots of threads about zolendric acid/bisphosphonates and I wasn’t sure which one to add to so I’ve gone for this one as it’s the most recent.
I had my first ZA infusion last Friday. I’m having it 3-weekly alongside weekly paclitaxel (chemo) and 3-weekly herceptin (a different week to the ZA). I had successful mastectomy in November but as my cancer is HER2+ and OR+ I’m on all this adjuvant treatment to prevent recurrence.
The ZA is what I was least sure about as in the Predict scores it gave me no additional %. However my oncologist persuaded me there’s enough evidence to merit having it. I’ve had almost no side effects from chemo or herceptin and was doing really well until ZA. 24 hours after ZA I was running a high temp with other flu like symptoms and had to go to my local cancer hospital for assessment. All the tests showed no evidence of an infection (common chemo side effect if you become neutropenic which I’m not) but I was given antibiotics anyway. Doctor said it could well be ZA side effects. My temperature thankfully went back to normal midday Sunday but I’ve been very achy, fatigued and had 2 days constipation. I’ve had none of that until I had ZA.
I have an oncology review this Thursday and am going to flag the side effects up and see if it’s worth continuing for me as there is no stated benefit. I’m happy to put up with feeling crap if there’s a real benefit but I’m unconvinced at this point. My forward plan was to have an infusion every 3 weeks whilst receiving chemo then switch to 6 monthly injections. I appreciate that a lot of the leaflets etc say you’re more likely to get side effects on the first dose but I’ve read enough in this and other threads on ZA to think that won’t necessarily happen to me!
If anyone is still active on this thread (or others on ZA) any thoughts would be welcome 
Hi @sam1204
I just had my first ZA yesterday, was living in hope i could work today, out of the question, i feel awful. I to am questioning whether it is worth continuing. I had a terrible time on chemo. I dont have anything helpful to advice you, just thought to reply to say your not alone in questioning. I may give it one more,prepare time off. See how it is then i can at least think i have given my body a boost. I am not however in yout current position of everything at once.
Take care
@trix1 thanks for making contact on this. I had my review with a pharmacist who said if she was me she’d not have any more infusions and consider moving to the daily tablet after chemo ends (it would be daily for 3 years!). I’ve gone with that and asked for future infusions to be cancelled. I’ve also pretty much decided not to have the tablets either, as a detailed discussion with the pharmacist helped me understand that their approach is a “one size fits all “ one and I already protect and strengthen my bones through my lifestyle and the amount of weight bearing exercise I do. She told me im better doing that than taking drugs! Especially when ZA gave me less than 1% improvement in my score. It felt empowering to say no to something which I already had doubts about. I do think people need to consider their own personal circumstances when these treatments are offered and not just blindly accept what we’re told we need.
i hope you’re feeling better and that this helps in some way 
Thank you @sam1204 yes it does, i never thought about speaking to a pharmacist. I am hoping to start the gym soon and get on a programe,so that should help too then.
You have provided support to have a further conversation and gather more information.
May you continue to feel empowered and the treatments be smooth. Take care
You’re very welcome @trix1. The pharmacist did my 3 week oncology review as I don’t think the oncologist could be bothered to travel to my hospital which is a bit out in the sticks 
. The pharmacist was amazing and actually better than the oncologist as she didn’t apply a “one size fits all” and actually listened when I talked about my lifestyle and concerns. I think it helped that I was well informed and sensible in my approach. I’d definitely recommend a chat with an oncology pharmacist if you can find one. Good luck 