Bisphosphonates

Hi, I had my first Bisphosphonate (zoledronic acid) bone infusion a few weeks ago, after my chemo and surgery, I was advised to have a dental check up first as there can be problems with the jaw, so I did that.   On the infusion itself, I had some flu like symptoms the day after, felt drowsy, lethargic etc for about 12 hours, and then I was fine.  No aching bones,no jaw problems. I guess we are all different but this was my experience. 

Hi, I’ve had one dose of Zoledronic acid with next due in January and every 6 months thereafter for 3 years. Like Missi K I’m very concerned re my teeth. I also am led to believe that the effects, on your jaw, last for a long time after the infusions stop. 
I too would welcome the views of others who have been on this drug.

I was worried about taking zoledronic acid too as I run and do other bone strengthening exercises so wasn't sure that it was needed. However, I then read that it was also used to help prevent breast cancer coming back in your bones so I was happy to have it then.

I had my first IV a couple of months after radiotherapy and I didn't have any side effects.

i recently had a tooth infection and had to have a root canal. I was really worried about jaw issues so called my oncologist beforehand. You can have a root canal as long as it is 2 months either side of the zoledronic acid, which it was. I have had no jaw issues.

Tooth extractions are not advised during the time you have tit as they interfere with your actual jaw, but other dental work is OK - as long as you time it. That is why you need a dental check up beforehand.

I was told that the zoledronic acid can be a bit painful if you have issues with your bones - but then that's also a good thing as it is repairing them

Thankyou all for sharing your personal experience regarding This drug. 
I have read that it is not advisable to have extensive dental work for 10years after treatment due to the half life of the drug lasting this long in the body.

My worry is , how does anyone know if they may need a tooth extraction in the future, even with the best oral hygiene routine sometimes an extraction is necessary.

My mum had breast cancer 16years ago and twice since she has had to have necrotic bone removed from her mouth (which wasn’t due to any dental work having been undertaken )I think this is adding to my concerns.

Im torn between taking it because of the advantage of possibly warding off bone mets , but also don’t want this constant worry every day regarding mouth issues.(forgot to mention, I’m very nervous of the dentist) although I always keep up with dental checks regardless .

sorry for the long post , I’m just getting myself in a right state worrying about this .

wish I was brave enough to take it like all you ladies . Breast cancer is hard enough without all this worry and decision making.

Hello Missi K, bisphosphonates are not always recommended, or given alongside, chemo. Have you spoken directly to your oncologist yet about whether bisphosphonates will be recommended for you? My oncologist used the NHS Predict tool which is used to predict which treatments will increase survival rates, and by how much, when deciding on treatment options. The details that are input include the size/grade of the tumour and whether there is lymph node involvement or not, which may all have an effect on the likelihood of future bone mets. The outcome will show how much benefit bisphosphonates would be in terms of an increase in survival rate for you, so you would be in a better position to decide whether to have this treatment or not. Here's a link to the Predict tool but please raise your concerns and fears with your oncologist as getting yourself into a state worrying about something that may not happen is not good for you. 

https://breast.predict.nhs.uk/

Thankyou for the link I will definitely try the predict tool but as my tumour was huge almost 10cm and with lymph node involvement (due auxiliary clearance next month to find out extent of lymph nodes affected) I’m assuming this won’t be good news as regards size of tumour. The two nodes initially taken both contained cancer.

Im assuming this all taken into consideration I would be at high risk of reoccurrence. Thankyou so much for your reply.

Hi Missi k,

Like others on here I've just had one Zoledronic Acid so far. Needed every 6 months for 3 years. I was told it was to prevent recurrence of cancer and I certainly don't want to go through all this again!! I had flu like symptoms after for 24/48 hours. Paracetamol sorted me out. Next time I'm going to schedule in a duvet day.

I've already done chemo, surgery, Radiotherapy... Just targeted therapy on going...phesgo. like you I loath going to the dentist, but I make myself. I had my dental check up before the Zoledronic Acid and discussed it with the dentist. Whilst I can't really remember what he said about it (effect of my dread of going) I do remember listening and understanding and thinking... Oh that's not so bad then, sounds worth doing. Suggest you discuss with both oncologist and dentist before making any final decisions. Good luck

Thankyou, I really hope I’m brave enough to go ahead with this treatment if it is offered as like you say , we want to try everything to prevent reoccurrence. Thankyou for taking the time to reply I really appreciate everyone’s input . Everyone on here is so helpful.

Hi Missi K. I don't know about the 10 years but have you been able to sit down with your oncologist and talk this though?  That might help you reach a decision.  Good luck 

Thankyou Irishgirl, I haven’t seen an oncologist yet , I’m assuming I will see one after my auxiliary clearance so they have all the relative information regarding node involvement.

Hopefully when I do get to speak to my oncologist he/she will be able to help with my concerns.