Zoledronic acid SACT

Hi sorry to hear about your diagnosis and welcome to the forum, although I am sure you would rather not be here! Like many women on this site, I am on the Zoledronic acid infusions. You can read my story on my profile. I had my first infusion in June and like you I was also worried about side effects especially jaw necrosis. Everyone is different but I have so far been fine, apart from a few days afterwards of feeling like I had flu. I have just had a filling done at the dentist and again so far it has been fine. My dentist has assured me that it is just extractions or other work affecting the bone that need to be avoided whilst on the infusions. Have you been to your dentist for a check up and to discuss it with him/her as the hospital normally ask you do to that before commencing the treatment? They have also advised me to leave 6-8 weeks either side of any dental treatment before/after an infusion just to be on the safe side. The bisphosphonates strengthen the bones to reduce the chances of spread. Best of luck for your CT scan and your treatment. x 

Hi. Thanks for your reply and info.  It's so good to hear other people's journeys to get an idea of whether to take these awful but life saving drugs.. Your journey so far has not been without an incredible amount of worry and at some stages lots of pain.  I can't comment as I've not started my treatment but I can give you my full blessings to hope you get through this and out the other end with some kind of normality. Hoping and praying that we all do... Keep fighting, stay safe xx

Kind regards

Thanks , sending the same good wishes back to you. Hang in there. You will get through this. Once you have talked to your dentist, try not to worry too much about the zoledronic acid as it is meant to be very beneficial for our bones x

Hi 

Thank you so much for posting this question as my oncologist gave me the option of Zoledronic acid infusions last week and like you, I didn’t like the sound of the jaw necrosis bit!  For me, the benefit of the ZA is marginal (1-2%) so he’s giving me the choice - sometimes I’d rather just be told what to do....

Thank you PictureThis2 for your positive reply which is very encouraging.  I’m waiting for my oncologist’s letter before discussing with my dentist and will then decide what to do. I’ve been unlucky with side effects from other treatments so far so didn’t want to push my luck with this potentially nasty one!

I’ll be interested to know how you get on Maggie.   Wishing you both all the best with your treatments

Loffie x

Thanks Loffie, whichever way you choose to go with the Zoledronic Acid, I wish you all the best. Statistics are really just statistics I guess, there is no way of knowing exactly how much the ZA would benefit you in reality, but in theory its a very useful addition to our treatment regimes. x 

I'm so sorry to hear of your diagnosis, it's certainly a scary time.  I was so glad you posted this question and the responses regarding Zoledronic Acid have been really helpful.  I have HER 2 +ve  early stage breast cancer and have almost completed my treatment with just 5 sessions of radiotherapy to come.  I've taken all my treatment 'like a good girl' confident in the knowledge that it will all be worth it.  When it was recommended I now have Zelodronic Acid I was also freaked out!  The side effects sound awful and went to see my dentist for a more thorough, critical inspection. I have now had a tooth removed incase I decide to go ahead with this treatment. Anything I read suggests it  'may' prevent spread to the bones and as stated in a reply the benefit is marginal. My gut reaction is to say no, but there's always the 'what if?'  It's such a stressful and anxious time for us all.  At the end of the day we can only be true to ourselves and go with our own deep instincts, which are usually right.  I do hope your treatment is going well and CT scan gave a good result!

These threads are so helpful.  I am on my 3rd EC on Tuesday and my CT scan indicates there has been no spread, thank goodness. 

I am due to have my first ZA on Tuesday but Im still not happy about it. I've not been able to see a dentist because of covid and its unsettling as my teeth are so sensitive at the moment.  Ho hum what to do.????.   Sounds like we pretty much all feel the same about this drug.  Good luck everyone,  we got this, whatever we decide xxxx