Is there anyone who has had or is due to have zoledronic acid infusions to strengthen their bones?
My cancer is ER+. I’ve had single mastectomy and ly.ph node clearance. Halfway through chemo then 5 days of radiothetapy to follow. But before then I am to start these infusions as I’ve been put into menopause and need to preserve my bone density.
Looking for people’s experiences and if you’re able to share your age roughly too.
There’s a support group on facebook but the demographic is huge. Anyone who has any bone issues regardless of gender, age, cancer or not and a lot already seem to have a diagnosis of osteoporosis or similar so whilst I know everyone is different, it would be more useful /less scary perhaps to hear from breast cancer experiences.
Had my first infusion in December 2023. It was an easy infusion with few side effects. No idea if it has worked but considering I feel fine I’ll continue on with the other three I’m scheduled for.
Hi,
I had my first infusion 6 months ago & wasnt very well after it; vomiting & i fainted. I had my second infusion this week and was absolutely fine, no side affects.
I was worried about damage to teeth/jaw but my dentist explained that the infusion would only affect oral health if i had to get dental treatment.
You can get zolatronic acid in tablet form but my oncologist has said that there isnt enough evidence to show it works; IV is best.
Good luck
I’m 61, no bone issues up to now. I’ve had 2 infusions alongside chemo. First one I had mild flu symptoms, aching legs, for a couple of days, very doable. Second one, no side effects, so I’m going to carry on with them
I was on ibandronic acid tablets a biphosphonate. From Feb 21 to feb.23.
On a dental appointment my dentist didnt like a bit of my jaw that wasnt healing and i was referred to maxo facial. So apart from the terrible aching joints i now was worried about necrosis of the jaw. Which i turned put to be. Maxofacial told me to stop the ibandronic acid wvich i did.
The pain in my left leg from toe to hip was excruciating. I had mri xrays. I had a dexa scan. No sign of osteoporosis or ostepena.
Just no one would listen regarding the pain. I was told i had lumber arthritis.
So on the 28th April 23 while just standing i moved to put something in wastebin and there was the most awful noise like velcro ripping and a crack. My leg went backwards i managed to ease myself to the floor. Unitl someone came and got an ambulance. The bottom line was that my femur had snapped in two, straight across. I had to go for surgery to have rods and screws put it. The following morning the consultant came to tell me this was caused totally by biphosphonates. And that my xrays showed my right leg was going to snap u had sugery on that the next day to have rods/nails in it.
All of this was really unexpected. But the consultant said you must have been in utter agony. I said yes for over 6months and was just told its the joint pain from biphosphonates and letrozole. !!.
Seemingly it does occur and it affects the largest bones. Femur. The pelvic region and the jaw. They dont know why but it does.
Now i know all the signs ive investigated and apparently if you have pain in your leg thigh groin. The medical people should have been checking it out.
I pray this doesnt happen to anyone else, but i feel we are not given all the details. Just that you need it because letrozole can cause osteoporosis. ! My bone density was very good.
I hope all goes well for you. This isnt intended to scare you off. But forearmed is forewarned. So ask questions.
Im 68 had a lumpectomy twice in jul and aug 2020. Chemo from oct to dec. And radiotherapy jan and feb 21.
Best regards
Granc, how awful! What a horrible time you’ve had - so sorry. Apart from sympathising, I was interested to read about your bone problems. Following a double mastectomy, chemo and radiotherapy, I had the first of planned 6-monthly Zoledronic acid infusions 6 weeks ago. Infusion itself was fine, then experienced the almost-expected effects over first week: severe chill, flu symptoms, joi t pain.
(…sorry, wrong key pressed, post incomplete!)
…joint pain. Chill/fever quickly passed as well as most acute pains. But then suffered bad lower back pain and could hardly walk for several days. This has gradually faded but I have sore hips and one knee, and am almost permanently stiff - stagger about like a REALLY old lady (I’m 69!) first thing each morning. I wasn’t like this before the Z acid. Having read your post and about similar experiences elsewhere, I’m now quite dubious about Z acid and very unsure about having any more. I’d never had any suggestion of osteoporosis/similar, and was just put on Z acid as am on long-term Abemaciclib and Letrozole. Saw my oncogist couple of weeks after the infusion and he suggested we discuss it again just before I’m due the 2nd one; he commented that I do seem to react badly to everything they give me! (Had all sorts of problems/hospital admissions with chemo.)
Seeing grannyc’s dreadful experience is quite sobering - so much can be unpredictable and some effects really scary. Do we need to ask more questions/find out much more about these seemingly routinely-prescribed medications? I really hope things go better for you, grannyc, after all you’ve gone through. Thanks for sharing and good luck.
Just a quick note to say thank you all so far for sharing. It’s interesting that I couldn’t find another post about zoledronic acid considering how awful the side-effects seem to be for those who suffer.
I’m 39 and a solo mum to twin boys who are just about to do their GCSEs and my first infusion would be in the middle of all that so I’m definitely going to delay that first infusion. It was only brought forward after I asked if I was going to have a bone density scan. Quality of life is definitely very important to me not just survival as I certainly can’t be a burden to 2 16 year old boys.
I’ve responded so well to 4 rounds of EC and start Paclitaxel on Thursday so the hope is that I’d tolerate that and zoledronic acid well but its definitely too high risk to have it with my 2nd/4 paclitaxel as my onco suggested.
Please keep sharing other experiences /studies as this definitely feels a lot more experiemental with little info out there esp for bc.
I’m quite glad I hadn’t read any of the awful stories some people have shared above before my bisphosphonate treatment - I’m so sorry for anyone who had to go through anything so awful!
I completed my 3 years of zoledronic acid - 6 infusions, once every 6 months - between 2020 and 2023. I was 42 at the start, I’d had chemo twice and showed very very early signs of possible osteoporosis in a dexa scan, but no actual issues. It was recommended more as a preventative (for secondary bc rather than osteo), which I was more than happy to do.
Happy to add a positive story: I got on absolutely fine with it. The very first infusion was the worst, giving me flu-like symptoms for the first night. But it didn’t last, and wasn’t awful, and the remaining five sessions were barely noticeable.
I had my first infusion in January 2023, my next in June 2023, then my third in January 2024. I had mouth ulcers after the first, then after the second and third. At first I thought I had an abscess on my tooth but as it’s gone on, I have used bonjela, seen the dentist three times and convinced myself my dental health is good. I use interdental brushes, two electric toothbrushes, a Philips and an Oral-B. I have used the Philips one for years but got the Oral-B in the January sales. It has a round rotating head and the coloured light it shows when you are cleaning your teethn is encouraging. It lasts a long time on one charge and the heads don’t need changing much. I put corsodyl tooth gel on the brush I use between my teeth, but it does tend to stain the teeth. So for that, I use eucryl dental stain powder but only once a week or so. I do have 68 year old gnashers, well some of them arrived only 56 years or so ago. All this was before fluoride so it’s remarkable I haven’t lost many teeth to decay. My wisdom teeth were rotten but I had them out at age 20. The rest which weren’t taken out for braces etc are surviving. I always had very strong bones, maybe due to the huge amount of oestrogen in my body. I went through the menopause at 54. I had breast cancer treatment in 2003/4 but decided against tamoxifen and any other further drug treatment as it was grade 1, no node involvement. This time I had one intramammary node full of metastatic cancer, and a 2.4 mm grade 2 tumour with less than .1mm clearance from my chest wall. That’s the only reason I am having the Zoledronic acid, as I think it will come back in my bones or elsewhere. I’m not the most positive or patient person so if I get fed up I may well give up letrozole as I now have high blood pressure and high cholesterol. Never had these before but they are know side effects of letrozole treatment. My bone density has not been measured. So I don’t know whether it’s bad or not. I do lots of physical exercise including weight bearing kinds (lugging vacuum cleaners, grass mowers, compost and bark bags around the garden. I get no help as my husband thinks he’s got liver cancer and many other conditions so is expecting me to do everything. Actually this is great as I now eat much nicer food. He used to cook really boring stuff such as meat pies (from shops) and I like Italian food with pesto tomatoes olive oil and olives. I have deviated greatly from bone density etc so I had better stop here!
I had 3 infusions of zolendronic acid over 3 years, one per year because I had osteoporosis. I had the last one, aged 82, in 2022 which is the year I had a single mastectomy for TNBC. My osteoporosis reading was improved by 11.9 per cent which meant it had reverted to osteopenia. I had no side effects with it to speak of and the treatments may well have inadvertently helped to prevent my cancer from spreading to my bones. I did not have chemotherapy, only radiotherapy. I wish all of you all the best.
Hi
Adding my penny’s worth.
I was put on Zoledronic acid infusions (6 x 6-monthly) to counteract bone weakening from AI Anastrozole and as resistence to bone metastasis. Seemed like a double win.
First one - flu symptoms for a few days. Second one coincided with a marked ramping up of already-worsening AI side effects, and they didn’t subside again. Joint pain became really debilitating in hands/thumbs and hampered walking. May have been just that, an unrelated coincidence. However, I did then develop the aching thigh, particularly when lying down at night which made getting to sleep even harder. Became convinced I was on the way to broken thighs. Did further reading on all those less common side effects ‘they’ don’t like to mention, of both treatments, and made the (very difficult) decision to give up the infusions and the AI. I felt the drugs were adding new, potentially very serious, risks to my health which outweighed my fear of bc recurrence/mets so I opted to revert to that one risk … with fingers tightly crossed ! I might be lucky. How a person ranks their fears is highly individual and each of us takes in a raft of personal circumstances and experiences.
If ONLY there was an answer book; I’d cheat.
I thought I would add my update now that it’s been a week since my 1st infusion.
I’m getting 3 x 6 weekly then every 6 months for I forget if it’s 3 or 5 years.
I stuck to my guns of waiting until nearly 2 weeks after my last round of chemotherapy as I didn’t want too many things interacting.
I’m glad I did as I had the thigh and leg bone pain the first night which continued the next day. I was also much stiffer when getting back and bent over for the first minute while my muscles and hoints got going.
The pain was bad but I’d had worse from the post chemo injection - oh the things we tolerate.
But really interestingly, if I walked then all pain stopped! But once I was back home sitting or lying down it returned. I declared that I can’t walk ALL day or stay on my feet as I did feel more drained and I wasn’t a nurse working the wards.
Luckily it only lasted 1 day.
I didn’t have flu like symptoms but I was just more tired and like I said stiffer for the next 2 days. I had both yoga and pilates and even my instructor noticed the difference- in my movement.
I’m pleased to report I kept moving, at my own pace, and even played tennis on day 3 and by day 4 I was back to my usual self.
I do wonder how all this will work once I start Abemecilib and letrezole but for now I’m keeping my fingers crossed that subsequent infusions will be “easier” and I still need to get through 5 days of radiotherapy before the hormone therapy.
Thank you for all your contributions and support. It was very helpful to get a cross section of experiences.