Hi I'm 58 and 6 years post diagnosis and 4 yeas post treatment for HER2+ BC. Had chemo and radio plus Herceptin. Had two bone density tests during treatment half way and at end. There were some signs of bone loss but at no point was I told to keep having these tests. Fast forward to a fall and fractured wrist and a bone density test. I've been diagnosed with osteoporosis of my hips and lower back. Probably caused by steroids during treatment and menopause. Has anybody had experience taking Aclasta or Prolia? Any side effects or pain? I want the truth. Thanks for reading.CassieB

Hi @CassieB, I'm in a slightly different category to you. I had a Er/Pr +ve Her2 -ve BC. I had chemo, surgery, radiotherapy. I then started on the AI path 4&1/2 years ago. Baseline and 2nd bone density scans excellent, 18 months apart. The 3rd one, another 18 months later showed substantial loss of bone density in my lumbar spine, into the osteopaenic range, so my oncologist started me on Prolia every 6 months. There is the suggestion that prolia may also play a role in preventing bone metastases, which was in part why he strongly recommended it over Aclasta.I've had 3 doses now. After the first one, I had dreaadful bone pain a few days later, for a week to 10 days, to the point of taking endone a couple of times. If it had been the same or worse 2nd time around, I don't think I would have been keen to keep going. However, I had no reaction all to the 2nd and 3rd doses. I'm due for anotherbone scan soon, so will be interesting to see the results. I'm really hoping not to need to keep going with it, as I don't fill the requirements for PBS subsidy, so it costs quite a bit. However, if I have to, I'll keep going

Thanks for all the feed back. I emailed my Oncologist who i haven't seen for two years and no surprise she came back with "take the medication, I have loads of patients on it with no side effects whatsoever" . My GP basically said the same thing.

@CassieB I have been having prolia injections for osteopenia for the past 2 years and have had no issues or side effects at all. Just recently had my bone density scan and my results had improved so it must be working ok. @Afraser my GP has said I will be on it long term as when you stop it your bone density can get a lot worse and quickly.

@Jwrenn Yes, that’s what I was finally told too, you need to answer yes to just one and you can get it. I have a health care card too as single parents apparently get same benefits as seniors 🤷🏼♀️. It’s been very helpful though. I’m also getting free treatment at a private clinic, and medication is thankfully very cheap. I still paid for scan but only about $15 so I’m ok with that 👌🏻

Hi @CassieB I also have her2 positive BC, I am on herceptin till September this year. Because I am ER+, I also take Letrozole. I have osteopenia diagnosed when I had a fall and had a cracked rib a few years back.Letrozole will lead to further bone loss and I expect when I have it tested again, I will also have osteoporosis and will need to take one of the medications. I have asked my Onco about these medications, however she has indicated that she will refer me to the bone specialist. A friend of mine is taking prolia and she has had no side effects.

Osteoporosis | BCNA Online Network

36 Replies

CassieB
Member
6 years ago
@JanineG thanks. My appointment with the specialist is next Tuesday so I'll let you know.
JanineG
Member
6 years ago
@CassieB I’ll let you know when I find out more and look forward to hearing what you decide 😊
CassieB
Member
6 years ago
@JanineG they told me five infusions, once a year. Not sure what happens after that. I have a lot of questions for the next appointment.
JanineG
Member
6 years ago
@CassieB I am no longer showing Osteoporosis, it’s reversed back to Osteopina but better than I started with. As for how many... I’ve never thought to ask lol! 😂
CassieB
Member
6 years ago
@JanineG see above, forgot to tag you.
Thanks again, all the best to you 😊
CassieB
Member
6 years ago
Thank you so much for the feedback Janine. That sounds amazing no osteoporosis at all!? So you're onto your third and you have five all together is that correct?
JanineG
Member
6 years ago
@CassieB, I am about to have my 3rd Aclasta infusion.
I had Osteopenia before starting Arimidex and declined into Osteoporosis within 6 months once I began. After the first Aclasta my bone density improved almost immediately. After the second I no longer have Osteoporosis.
As for side effects .. the first infusion did cause terrible bone pain for about 24 hours so 12 months later armed with paracetamol and ibuprofen I was a little nervous... I didn’t need to be though because I had absolutely no pain/ nothing at all!
So personally I think Aclasta has been great for me.
Oh and you may get it almost fully subsidised because you have had a broken bone(a strange bonus!).
All the best with your decision xJanineG
Afraser
Member
6 years ago
Many thanks @JulieVT11, that’s what I thought, so I think I’ll leave Prolia in the ‘only if necessary’ basket! My oncologist is definitely not suggesting it so far.
JulieVT11
Member
6 years ago
@CassieB I have been having prolia injections for osteopenia for the past 2 years and have had no issues or side effects at all. Just recently had my bone density scan and my results had improved so it must be working ok. @Afraser my GP has said I will be on it long term as when you stop it your bone density can get a lot worse and quickly.
Ahnn
Member
6 years ago
@CassieB I was post menopausal when diagnosed with BC in july 2019. Double mastectomy, no chemo or rads. Currently on letrozole, prolia injection every 6 months as I have osteopenia noted in bone scans over last 5 years. No issues with the injections at all. My next bone scan will be in October 2020. I also take vitamin d and calcium on a daily basis so hopefully bone density won't be reduced

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Osteoporosis

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