Forum Discussion

Summer_Prevails's avatar
7 years ago

My bones, osteopenia, and zoledronic acid.

Hello beautiful women,

i had had a fun appointment with the oncologists yesterday and they reckon my T scores are crappy enough to suggest needing intervention with osteoporosis meds. I ‘only’ have osteopenia at present...but they are keen for me to get treatment NOW and avoid progressing to Porosis Land (hopefully). 

Onco told me she wants to use zoledronic acid, which is given IV at the cancer centre I believe twice a year(?). Oh yay can’t wait for the chemo PTSD when I get that first cannula again! 

Has anyone gone through this? Be honest, how bad are the side effects? I’ve been told: like a mild flu, might want to take a couple days off work. (Not a problem since my work just ended my employment and I’ll go back on sickness allowance to keep a roof over head until I can find another part time gig). 

So im scared! I don’t wanna! But it sounds like I have to do this new drug if I want to keep my bones in one piece. 

20 Replies

  • @SummerPrevails I’m so sorry you are struggling with this. I’ll answer each question in order..because it was now 9 months ago I can’t quite remember the time but no longer than 30 mins, I went out for lunch with my daughter afterwards. Didn’t feel any effects that day. I had mine done by a nurse who used rooms at a local dorevitch for convenience. Definitely only once a year I’m due again in June and I was told most patients usually only need it a maximum of 5 years but often less. ,we will see! Last year I paid approximately $275. But don’t quote me on that. I’m at work again in the morning so I’ll check it out. It’s dispenced as ‘Aclasta’. My gp wrote the script I had to get it and take it to the appointment. I haven’t had Neulasta so cant compare. It was really rotten for just one day and then achy uncomfortable tired for about 3/4 more. But maybe if I had rested and not worked through it would have been better. The nurse said it’s always worse the first year. Absolutely no side effects since. Yes I was worried about my teeth , I’ve spent a lot of money on them and would be devistated if something happened. But the important thing is to have a good check up and any work done prior to the infusion. The dentist told me he would be worried if I needed an extraction and had just had an infusion. I hadn’t been for 5 years! Lol lucky for me I was fine but important to go each year prior to infusion. 
    As for your broken wrist.. hopefully. My gp  just said.. please tell me you have had broken bone.. no🙄 so do chase that one up. I know it’s so exhausting all of these rotten unexpected side effects but try and deal with one at a time. I found my decision to have the infusion was easy for me. I was more scared of the osteoporosis getting worse and me having a fall and breaking my hip or back so Im of the yes please let’s do and take everything we can variety. I will look into it tomorrow price wise for you and let you know but I do hope you qualify for subsidy due to the wrist. Anyhow I’d better try and get some sleep and hope you can too. I promise the infusion didn’t hurt xo JanineG 
  • @JanineG thanks so much for this. Answered my questions very well - and now I’m gonna throw more at you :) I will be calling and talking to my onco more about all of this, but I want to know about it from a patient’s point of view too even though mileage varies. 

    So does the infusion really only take 15 minutes? Is it really only given once a year? How much does it cost? Were you/are you terrified of the osteonecrosis thing happening? Was the flu-like feeling comparable to Neulasta side effects (if you had to have that)? If I broke my wrist when I was 4 years old does that count for the subsidy? 

    I have a health care card and I know the onco docs were saying they’d try to see what they could do in terms of the cost of the meds. I’m not sure if they were going to dispense it from the hospital pharmacy or what? I’m confused on who actually gets the script filled. I worked at a pharmacy once too so I have a pretty good idea of what Prolia costs at any rate. 

    I dunno. It’s really weighing on me all of this. Sick of bloody treating the side effects of treatment! 
  • Hi @Summer Prevails yes I've had 1 Zoledronic acid infusion and due to receive my second in June. I had rapidly deteriorated from osteopenia to osteoporosis on arimidex within 8 months. My GP suggested the infusion rather than prolia as its once a year not every 6 months. And recent studies have found prolia needs to be given as close to the 6 month date as possible as reversal occurs. . So her theory was easier more convenient once a year. She only recommend prolia to older women & men now, I'm 53. My latest bone scans said I had improved a 'tiny' bit! At least I hadn't deteriorated lol. Yes as @Irb_03 said dental clearance is important. The infusion is non pbs but if you have had a broken bone ever you are entitled to subsidy. First time I've ever been disappointed not to have had one! 
    As for your question regards honest feedback ..
    I had mine on a Friday. It didn't hurt at all just like a saline drip.  Saturday I felt terrible, chills body ache bone pain. Panadol and ibuprofen helped. Definitely a day at home though. I was back at work running around 8 hours on concrete on the Sunday. I coped but felt quite miserable. Definitely felt like I was recovering from flu for about 4 days. This time I will take a day off work just in case. My advise would be definitely phone around for the best price, smaller pharmacies cannot compete with the bigger ones. I work at a large major chain one. Don't be afraid to speak privately to the pharmacist about best price, we often bring our prices down whenever possible to help. Hope my long winded reply helps xx
  • Sorry @kmakm, that's one of many questions I didn't ask at the time.
    I'd been a bit frazzled, as it took 15 minutes to even get in to the car park, so was a bit late. Then, I was absolutely floored by the osteopaenia, and didn't think of all the questions I should have asked. Some my GP may be able to help with, and I'm seeing her this week. Some may have to wait for my next appointment with my onc in September or my BS in June.

    One curious part of it all was that the large drop in density was only in my lumbar spine. The drop in my hip was around what would be expected on AI's

    Go figure?????

    @"Summer Prevails", yeah, timing often sucks, doesn't it. 

    I've got copies of all my results, since diagnosis, on the advice here of those who'd gone before me.  I've found it very helpful at times, even picking up an error by the radiologist once, when he wrote "renal" cyst instead of "breast"

    It's worth asking your GP for those copies, even now.

    My onc drew a pretty line graph  :p tipe thing to demonstrate the decrease.

    Hopefully you can time the appointment for the infusion for the same time as your zolodex so that it's not an extra visit, at least
  • @lrb_03 it was a repeat dexa scan, so I had my first one in 2018 sometime and the follow up scan in January this year. I can’t remember my T score! You’d think I’d wrote that down but oh well. I’m getting pathology to send me report copies so I can read it later. They know I’m jobless and poor so they’re gonna see if they can get me on some kind of cheap option for the Z acid and dentist through govvie system..I am SO UNSTOKED about seeing a dentist but I know I have to. 

    I meant ant to ask them why am I not having Prolia instead? Why am I having to go have an infusion which will def cause me a mild panic attack ?? Whyyyyyy. I would rather have a subcut any day. Even when I go to the chemo ward for my Zoladex shot, I get internally panicky just being back in there. 

    Yeh the jobless thing is v bad timing!! If I had known I’d be let go, I would’ve made sure my bones didn’t need expensive treatment! Lol 
  • @kmakm, I started AI's in February 2016, & didn't have much more than average changes between 1st & 2nd tests

    The only thing that's changed since my 2nd bone density scan and the 3rd was that I had my tubes and ovaries removed,  last February. I was already menopausal (chemo induced), which had been confirmed by hormone levels 
  • Me too. I'm about to start Prolia (Denosumab) for the same reason. It's more expensive, but I can have it as a subcutaneous injection at my GP's. Hope your onc warned about the cost unless you have a health care card.

    You should have a complete dental check before you start,  too. Another expense

    Sorry to hear about your job situaton. I hope you find something that suits you.

    Was this your first bone density test, or a repeat? Do you know what your T score is?

    It was my 3rd, the first being just before starting AI's, the 2nd was 
    October 2017, then in February.  In the time between the 2nd & 3rd my lumbar spine dropped from just below 0 to -1.7. 

    Not happy. Cancer...... the gift that keeps on giving