Hi all,
The above drug has been recommended for me. Anyone on this? Just curious about the side effects people may be experiencing, I am aware that there is a risk for jaw problems…(:
I have iv once every 6months my jaw feels a bit tight but I’ve got changed sensation on right side. It may be me looking for it been very tired which isn’t unusual. I have bad wind and very loose no2s this time not sure if it’s a coincidence. Hope this helps ?
Hello Anxious Soul,
I am currently receiving this bishphosphonate as infusion every 6 months for 3 years. So far, so good and infusion no. 5 due in August.
I have not noticed any specific side effects from this. Mind you, if I get any side effects these days, I tend to blame everything on the Anastrazole ?.
Seriously though, when I weighed up the pros and cons for myself, accepting Zometa/Zoledronic acid infusions over 3 years was a bit of a no brainer. I had a DEXA scan and was judged oesteopenic. Hence, Zometa made me feel more relaxed about taking the Anasty. I saw it as dealing with 2 birds with one stone. I. E. Helping protect bone density as well as helping to reduce recurrence in the bones and adding 1-4 percentage points to the NHS predict score.
I also prefer bishphosphonate infusions rather than taking a tablet, as the latter can have increased side effects for the oesophagus, especially if they are not taken correctly. However, infusions are more invasive and require administraton in the chemo dept. for me. I don’t mind this but for others it may have negative connotations. I quite like it as always get bloods checked etc and see it as a bit of an informal follow up!
The side effect you are concerned about, I. E. Oestonecrosis of the jaw is a worry as there seems to be a higher incidence with bishphosphonate infusion. However, the incidence seems relatively low and is more likely to occur after a dental procedure such as an extraction and where Bishphosphonate treatment has been for 5 years or more. A thorough dental check up is usually recommended before starting Zoledronic Acid treatment and ensure good oral hygiene during treatment. On saying that, I did all the right stuff and ended up with a mega abcess! No problem though apart from having root treatment which went fine. Typical of my bleeding luck though!!
There are also other rare serious side effects such as spontaneous fracture of the femur etc but I have decided to take my chances. As far as I am concerned, healthy diet, exercise and maintaining a healthy weight is also part of the picture of trying to ensure the best results.
Take care and hope you make a decision you are comfortable with,
Chick ? x
Delighted to see this question raised - and read the responses. Thank you. Zolendrate was given to me with my second EC therapy so I think much of its effect was disguised. Unlike with all the other ‘poisons’ put through my system, I recall having a definite reaction within a minute or so, which lasted for the 15 minute duration till I was flushed through. Then I was fine. The reaction was in my head, a band of ‘burning’ discomfort from my upper jaw to mid forehead that would have sent me running had I not already been given lorazepam for other reasons. I’m scheduled for my second treatment in July and plan to consult with a dentist who has specialist knowledge as I’ve had a dicey jaw since childhood and am afraid this might make me more vulnerable to the permanent jaw damage (which has very low occurrence, btw). I was diagnosed with osteopoenia 5 years ago, so I know this treatment would be of huge benefit to me long term and it’s also an extra in that bone marrow is apparently the first choice for any rogue cancer cell missed by everything else so strengthening the bone marrow makes complete sense - but… I can get a side effect walking into a pharmacy and I have been “one of the unfortunate few who do not respond well to chemotherapy drugs.’ Understatement - so I understand my reluctance. Having opted to know as little as possible from diagnosis, through chemo to radiology this is one area I just have to research as the risk of jaw damage doesn’t bear thinking about for me.
Good luck if you decide to go ahead. Not everyone experiences the same side effects so you just have to wait and see if you are one of the fortunate ones who just feels flu-y for a few days.
I am about to have an infusion of this. On 30 October. Have read side effects and mildly terrified. Can anyone who has been through it reassure me that my jaws won’t disintegrate or my thighs fracture.
I am due this (first infusion) tomorrow after radiotherapy. I will be honest I did refuse chemo due to the hospital **bleep** ups from delays in diagnosis to lying surgeons.I also was of the mind to refuse Zoledronic acid as it is completely off-license for breast cancer adjuvant treatment. I do not like the thought of the side effects which makes it scary reading. I am also on letrozole daily and have been for 7 months which In itself is causing me to itch and get bone pain but will tolerate it for the first year. It is affecting my QoL but as I say I am still alive against all odds due to a crap breast clinic. I am dreading this and in the main as I am caring for a friend with extensive-stage lung cancer who demands a lot of my time. I worry that my own care will be affected, but she does not deserve any less care than she expected. Tomorrow is a day I am dreading but know it is s possibility it could improve my OS by 4% not much but still significant.
Hi teddy271,
My mum was given zoledronic acid a month ago and is having horrible reactions. She can hardly get out of bed in the morning from the bone and muscle pain, and is never comfortable no matter what she does.
I’m so sorry to hear you went through similar, it’s really tough. I was wondering how you’re doing now, and if the symptoms have gone away? There doesn’t seem to be a whole lot of information out there about how to handle side effects like this.
Sending you my best,
Violet
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Sending your mum and you a BIG HUG Violet xxx very distressing for you both, hopefully these awful side effects will start to abate soon. I am sure teddy and seagulls will be along soon with useful input. No one has actually contacted/chased me re this treatment since I said no to the oncologist, although I think they expected my GP to call me in for a discussion and he hasn’t. I am sure my surgeon will bring it up when I see him in September though but given that my DEXA scan was okay, I am sticking to my guns at present.
Dear VioletDaze
Sorry to hear of the bad side effects your mum has been through after one zoledronic acid infusion. I have to say that the second one I had recently on 4 July 2023 wasn’t too bad although I am getting the odd tooth twinge again. I have been to the dentist a week or two before each infusion and both times I had a clean bill of health. I even had a dental x ray of the bit where I had twinges and it showed nothing. This time I would say the after effects were negligible, so it looks like for me it’s not going to be too bad. As I only have to have six of these over three years I am already one third through, with four more to go. I do hope your mother feels better soon. I drank a lot of water 2 glasses an hour before, and 2 glasses an hour after which I read helps flush it out and protects your kidneys so I would recommend your mum does this. Also she needs to take AdCal3 twice a day so the zoledronic acid can move this to her bones to strengthen them. At least that’s my understanding of it. AdCal3 tablets need to be taken on as empty a stomach as possible. And 2 hours away from meals with a lot of fibre e.g. muesli, porridge, cornflakes etc