Just gathering other people’s views - has anyone refused zoledronic acid if so why?
I am being offered it for the treatment of brittle bones/osteoporosis as I am 64 and my bone scan showed some deterioration but at 64 that is no surprise.
I know I will run the risk of broken bones - but at this moment in time, I feel overloaded with drugs. I’ve had chemo, surgery, 15 sessions of radiotherapy, as well as letrozole my body, although coping at the moment ( somedays are better than others) cannot take any more drugs my system is on overload.
I am just not sure which way to go.
i guess it depends on the reason for taking it…I’m being offered it to reduce the risk of secondary breast cancer in my bones…so it was a no brainier to me to take it ( it will also protect my bones but that is not my primary reason for taking it).
I’ve been on weekly Alendronic Acid for two years now plus Adcal (calcium/vit D supplement). Discovered I had low bone density in hip and osteoporosis in spine after I was put on letrozole. I wasn’t very keen but I didn’t want broken hip in later on as that would be life changing. My latest bone density scan showed an improvement and I don’t have the osteoporosis now, just low bone density in spine and improvements in hip as well so am very pleased. Letrozole side effect is bone thinning. For the first two doses felt headachy and fluey, less so after the second one - after that, no problems or side effects - it’s a bit of a pain as you have to take it first thing in the morning on an empty stomach, then nothing to eat or drink for half hour and stay upright to avoid reflux. I take mine on a Sunday morning when it’s quieter and the half hour goes by quickly.
I know it’s one more thing after everything you’ve been through but you could just try it for a month or so and see how you feel.
My oncologist told me it reduces secndaries in the bone, cancer survivors have a higher rate of falls ( not sure why maybe nerve damage) so you will be at a higher risk of a fractured neck of femur. Generally I think it is a good idea.
That’s a lot to recover from, so no wonder you’re feeling overloaded. I did not love the thought of another IV drug, but I don’t want my future activities to be restricted by fear of osteoporosis, so I just sucked it up. It’s super-quick compared to chemo, and I took the day off work in case I needed to recover but don’t recall any other issues.
You wouldn’t need to decide straight away - I delayed mine by a few months while I had some dental treatment, which also gave me a bit more time between chemo and zometa.
I’ve just been recommended for Zolendronic acid IV after being cut chemo’Ed and radiated in 2019!
I, too , had Letrozole for a while … couldn’t bear the joint pain so gave it up for Tamoxifen …now this … do I take it ? Did you and what helped you with your decision ? I’m torn between benefits of bone protection but don’t think I can face anymore horrible side effects!
Zolendronic Acid was seen to be inferior to xgeva when it first came out.
I was not consulted about a switch from xgeva (which I was sailing along on nicely) and when switching doctors he switched me to Zometa. Oh, and a switch back is supposed to double my chances of thinning jaw… My Doc really screwed the pooch on this one.
Wandering jaw pains stopped it the first time. Now two months of excruciating pain in my hips and thighs and my Cancer doctor trying to claim bursitis, push me off on an ortho (who also doesn’t want me) and leave me high and dry with the pain (I started end stage bone, I know pain, but this is like untreated cancer mets).
I’m about to go in for a perjeta/herceptin treatment and it’s gonna be a fight.
Hello,
What did you decide in the end?
I’m hesitating myself. I have had chemo, surgery, radio, now on goserelin& letrozole since October. I’m of course up for taking treatments which will reduce the breast cancer coming back, but worried about osteonecrosis of the jaw. It is a rare side effect of zoledronic, and my teeth are all fine.
The predict tool increases the survival rate by a small amount compared to other treatments.
Hello, what did you decide to do? I should be having it too but my teeth are weak and terrible and the fear of osteonecrosis is keeping me up all night…haven’t had the discussion yet with my oncologist but that’s coming up soon.
Glad you brought this topic to light. I’m due Zoledronic Acid and still trying to balance pros and cons. My teeth are not great either. I have a loose tooth which was caused by an extraction next to it, several years ago. It’s never caused problems or pain, and X-ray shows it’s still well rooted. Oncologist asked me to get OK from dentist, which I have done and now waiting to go back to oncologist for the “plan”.
Im really unsure. The dentist was young (and sorry to say, probably not a great deal of experience). She did acknowledge what ZA was and that it was very unlikely to cause any issues, and that if the tooth has been loose for years it should be fine.
I have a niggling doubt about the tooth, but I also want the benefit of the treatment.
Would be interested to hear from anyone in a similar position please.
I totally understand your doubts, I feel the same way. Everything I read seems fairly mixed but the thought that the risk of osteonecrosis is much longer (10 years?) makes me so hesitant. One study I read didn’t seem especially convincing that the benefit was worth it. But at the same time I feel I should take whatever I am offered…so conflicted and scared! X
I’m in the same boat re dental worries. Oncologist says I need to start biophosphonates but I need teeth sorting first. I have issues with my teeth and a very healthy fear of dentists (I have a condition that makes me resistant to local anaesthetic so for years I told dentists I could feel everything they were doing but they never believed me and just carried on…I stopped going).
Anyway I have an appointment with the dentist on Wednesday, I will definitely need two extractions I think. I’m hoping he knows about biophosphonate risks etc! Will report back if I get any useful information.
Never would have thought breast cancer and teeth would be in the same conversation. Just when you think you have got past all the hurdles another pops up.