Hi all - I’m due to start my 1st Zoledronic infusion next month but I’m very worried of the ONJ side effects. I had a DEXA bone scan and my bones are fine for now. My onco wants to give me the biphosphonates as prevention since I’m taking letrozole, and I understood that it can also help prevent bone metastasis. I’m being told ONJ a rare side effect and was just asked to have my teeth checked. I googled the topic (maybe I shouldn’t have) and I read that the ONJ risk is 1% the first year and this risk increases after 3 year treatment. 1% risk is not that rare! and treating ONJ doesn’t seem to be something easy. I know it’s a always a question of benefit / risk ratio but I’m considering not to have these infusions
I guess I’m looking for reassurance here… thank you for reading
Hi Marie911, I had my mastectomy, chemo and radiotheraphy 5 years ago now. I am also on Letrozole. I had 6 monthly infusions of Zolodronic acid for 3 years. My oncologist explained all the side effects to me and I also spoke with my dentist who seemed to know quite a lot about Zolodronic acid which
actually surprised me. My dentist always checked my jaws and luckily for me I had no problems with my teeth. I had bad diarrhoea after my first infusion but no other side effects. It is a very personal thing choosing the right path to take. I can only tell you about my journey. Good luck. Take care.
Sunshine21
I was offered Zolendronic acid/Zometa for 6monthly infusions over 3 years due to my diagnosis. I wasn’t offered a dexa scan as they said the infusions were the treatment for any bone density loss.
Yes there’s a lot of scary out there about possible side effects but like all medicines there are lists in every packet, not all of us have them.
I had a dental check before and am good with my dental hygiene. Told any invasive procedures ( root canal/ extraction) needed to be done 6 weeks before or after infusion and yo let my team know. I took paracetamol 30 minute a before the infusion as it was recommended due to aches in your bones. The infusion was about 30 minutes. I had a couple of days with flu like symptoms afterwards. The worst part for me was sitting in a Chemotherapy chair again, I was on a different ward so didn’t expect it.
For me, it was part of my plan and I wanted everything that would give me a good outcome.
You will probably have more replies but you can also search at the top of the page for Zoledronic acid/Zometa and see what others have said in the past.
You can also talk to your breast care nurse or the BCN nurses if you need more information * Helpline: 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm). Speak to our trained helpline team. No questions are too big or too small.
Take care🥰
Dear @marie911 , if you are unsure about the infusion there is an alternative (Ibandronate) which is taken as a weekly tablet. If you react badly to that you only have one weeks worth of drug inside you as opposed to 6 months worth all in one go. I chose to refuse the infusions and couldnt take the tablet as there was not a soluble version. My oncologist said that the benefit of a biphosphonate for me was quite small on Predict. Maybe worth asking what the percentage benefit is in your own case? I am not recommending any particular course of action as we are all different in our pathologies, risk of recurrence, and what we are comfortable with treatment wise. I wish you well. Love Tulip x
Hi there…i would ask you Where have you got your information? Because when i read studies/literature and discussed with my onc…the risk was deemed to be less than 1 in 100,000 patients …so way way less than 1 % …get your teeth checked and have any work needed before you start …my first infusion made me feel a bit rubbish but the next 5 were fine…i wouldnt make any decisions from a random google…if you do google…then google scholar …and look at studies from the last few years only …and discuss with your team if you have worries…i wish you well
@cat15 : thank you for your reply. From what I read the risk is not the same if you use Zoledronic acid to prevent osteoporosis in people who don’t have any cancers or if you have cancer… maybe this is due to the dose used or the length of exposure, I don’t know. You’re right I need to discuss it with my Oncologist and what you wrote is very reassuring
That’s one article here : Risk factors for bisphosphonate-associated osteonecrosis of the jaw in the prospective randomized trial of adjuvant bisphosphonates for early-stage breast cancer (SWOG 0307)
Yes there is some evidence to say the risk is slightly higher with cancer patients. I had a dentist tell me she knew all about it as she had lots of old ladies on alendronic acid (similar treatment for osteoporosis), the dentist thought it was ok to do root canal on the treatment when it is not. It may well be different for ladies on alendronic acid. When I mentioned that to the oncology team, they told me to tell the dentist that it wasn’t the same as I have had cancer and the treatment associated with it including chemotherapy. The dentist was a bit uppity and in the end if didn’t need the root canal.
It’s really about being aware of issues.
This is from the information given to me from my team.
Hope this helps 
Hello, isn’t it awful that we have to make these choices. I was terrified of JNC and refusing bisphosphonates. I was told the same as you - 1% risk in the first year rising to 3%. That doesn’t sound small to me. Somehow the oncologist talked me into it by saying my risk of recurrence was too high. BUT we are all different in diagnosis, risk of recurrence and approach to risk. I have had 2 infusions, the first with mild flu symptoms for 48 hours, the second with just fatigue. I have a dental check up every 6 months.
I did some research and, as I didn’t really understand the stats, I wrote to a leading academic, he said:
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.
So - clear as mud when compared with the statistical risk from oncology!
I hope you find this helpful
Elaine
I’ve just been prescribed the Ibandronate meds but only have to take it once a month. I was originally prescribed Alondronic acid taken weekly but couldn’t tolerate feeling so ill for half of the week. I figure if the Ibandronate has the same effect at least I’ll only feel rough for a couple of days a month. Due to start on September 1st, not looking forward to it. Would be interested to know how others found it.
@laneycass : thank you so much for sharing this. This is exactly what I was looking for and I wish my oncologist had given me this information. I said yes to all of the treatments (chemo, radiotherapy, hormonotherapy and targeted therapy) but somehow the fact that the half life of the biphosphonates is very long (you often see written 10 years) terrified me. My teeth are ok now but who knows if I need treatment in 3 or 5 years… and the risk of ONJ could still be there, although lower I assume… but…when you compare with the stat risk from recurrence or dying from BC , as you said, clear as mud !
I turned down biphosphonates due to the fear of ONJ although my dental health is fine as of now. I’m on Anaztrazole for last one year and have been having aches and pains in my joints which are getting worse. My DEXA shows that I have osteopenia and my oncologist thinks that I will benefit from biphosphonates. I’m still undecided about it 
Maybe you can talk to your team about the risk of ONJ, I as told it is very rare.
You might also want at chat with the BCN nurses to discuss the pros and cons.
Helpline: 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm). Speak to our trained helpline team. No questions are too big or too small