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CassieB's avatar
CassieB
Member
5 years ago

Osteoporosis

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
osteoporosis

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  • CassieB's avatar
    CassieB
    Member
    5 years ago
    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. 
  • Beryl_C_'s avatar
    Beryl_C_
    Member
    5 years ago
    @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.
  • Afraser's avatar
    Afraser
    Member
    5 years ago
    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. 
  • lrb_03's avatar
    lrb_03
    Member
    5 years ago
    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 
  • PV123's avatar
    PV123
    Member
    5 years ago
    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.