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.