Home Now what? The highs and lows of survivorship


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.


  • PV123PV123 Member Posts: 202
    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.
  • iserbrowniserbrown Regional VictoriaMember Posts: 5,208
    Tagging @melclarity
  • lrb_03lrb_03 Member Posts: 1,260
    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 
  • AfraserAfraser MelbourneMember Posts: 4,022
    I’m just about to have another bone density test. If I am at the same level, I may continue on Letrozole. I have had some thoughts about Prolia but a) I am osteopoenic in patches (no osteoporosis yet) and b) I understood that going off Prolia after some years of treatment could result in bone density reverting to how it was (or even worse). Be interested in knowing if anyone can shed light on this. 
  • Beryl C.Beryl C. Member Posts: 270
    @Cassie B, diagnosed HER + nine years ago. I've been on Herceptin and last infusion was no.125. Also take exemestane daily. About three years ago bone scans indicated need for treatment and I have a Prolea injection every six months. No side effects. I would prefer to do weight work at the gym but severe rheumatoid arthritis prevents that.
  • CassieBCassieB Member Posts: 71
    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. 
  • AhnnAhnn Member Posts: 42
    @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 
  • JulieVT11JulieVT11 Chermside, BrisbaneMember Posts: 89
    @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.
  • AfraserAfraser MelbourneMember Posts: 4,022
    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. 
  • JanineGJanineG Melbourne (west)Member Posts: 148
    @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 
  • CassieBCassieB Member Posts: 71
    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? 
  • CassieBCassieB Member Posts: 71
    @JanineG see above, forgot to tag you. 
    Thanks again, all the best to you 😊
  • JanineGJanineG Melbourne (west)Member Posts: 148
    @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! 😂
  • CassieBCassieB Member Posts: 71
    @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. 
  • JanineGJanineG Melbourne (west)Member Posts: 148
    @CassieB I’ll let you know when I find out more and look forward to hearing what you decide 😊
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