Anti-werewolf pep talk?

13

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  • primek
    primek Member Posts: 5,392 ✭
    @melclarity

    From the actual pbs site

    Quote
    " A vertebral fracture is defined as a 20% or greater reduction in height of the anterior or mid portion of a vertebral body relative to the posterior height of that body, or, a 20% or greater reduction in any of these heights compared to the vertebral body above or below the affected vertebral body."

    https://m.pbs.gov.au/medicine/item/5457F.html

    I guess you need someone to analyse that spinal stenosis to see if it fits. I wonder if a radiographer can review. 
  • melclarity
    melclarity Member Posts: 3,531 ✭
    @Primek I actually found a copy of the report stating of a severe reduction in height...I've forwarded that onto my Oncologist..this is the report that rendered my Bone Density free of charge...so why on earth wouldnt it also correlate to the concession for Prolia on the grounds of Osteoporosis in my lumbar and neck. grrrr

    x
  • primek
    primek Member Posts: 5,392 ✭
    @melclarity ...you think it would. So friggin annoying.
  • Romla
    Romla Member Posts: 2,092 ✭
    I agree with Kath @melclarity about checking re fractures - mine I barely noticed in daily life but showed up on scan - happened getting out of a leaky air mattress 
  • melclarity
    melclarity Member Posts: 3,531 ✭
    @primek and @Romla so after 2 weeks of communicating with my Oncologists Secretaries and calls and e-mails OMG! He rings me finally today, I sent through a copy of my Bone Density and a previous CT Scan that shows a drastic reduction in height of a vertebrae in my Lumbar. My T Score is below and fits the criteria BUT I am not over 70! even though it indicates Osteoporosis and I definitely have no fractures, which I knew. So he said based on all my information I do not qualify for the Prolia on the PBS. So now Im booked in for next week to get it done uuugh. At least I exhausted it and put it to rest. 

    Hugs Melinda xo
  • Romla
    Romla Member Posts: 2,092 ✭
    Thanks for the update @melclarity but sorry to hear the outcome financially - it's ludicrous and unfair - it's only recently the fracture element for under 70s was added so here's hoping a more common sense approach will bring further changes for all bc ladies on AIs xo
  • Romla
    Romla Member Posts: 2,092 ✭
    There should be a T score cut off for bc ladies on AIs rather than have to wait for the pain of a fracture 
  • melclarity
    melclarity Member Posts: 3,531 ✭
    @Romla you are so RIGHT!!! and my Oncologist basically said the same thing today. Hmmm I wonder how we could go about lobbying for the changes, I know nothing about it. x
  • Romla
    Romla Member Posts: 2,092 ✭
    Advocacy by the BCNA as a key lobby group would be a starter will see what's i can do 
  • melclarity
    melclarity Member Posts: 3,531 ✭
    Sounds like a great start!! am happy to help too! let me know anything I can do. x
  • Romla
    Romla Member Posts: 2,092 ✭
    Fired one off to Anne- Marie. Might help if I find a federal mp either with bc or family member with it plus the advocacy of the AMA - any other ideas gratefully received
  • melclarity
    melclarity Member Posts: 3,531 ✭
    edited September 2017
    Hmmm Jane Garrett has had BC and so has Fiona Richardson but they are State MPs? Aha!! Jane Prentice is a Federal MP who has had BC..
  • Romla
    Romla Member Posts: 2,092 ✭
    @melclarity Have sent an email to Christian Porter federal mp who has been active in the bc area recently and also a message to Anne- Marie at bcna . Fiona Richardson sadly passed away recently - there appears to have been a cluster of victorian state female MPs recently with bc. Will check out Jane Prentice . Also if can figure out how to copy my email will send you a copy of what I sent to Christian Porter on your personal mail. No time like the present especially as Connie sadly passed away today - don't want to be too cynical as she was a beautiful lady but maybe some media coverage the pollies might like to join with.
  • melclarity
    melclarity Member Posts: 3,531 ✭
    @Romla thanks, yes the email was brilliant, very concise and summed up the problem beautifully. I agree, would love to see this issue addressed as Its a problem.
  • Romla
    Romla Member Posts: 2,092 ✭
    @CellyK just a follow up - 5 weeks on hormone therapy - Femara in my case- had a few hot flushes which are bearable in this cold weather , am post menopausal and think have less facial hair than before tablets , possibly memory not quite as sharp and think I need to take things a little slower rather than my usual manic pace but otherwise ok I think. Taking Caltrate Bone health tablets and had my first Prolia injection to build bones thinned by tablets ( not an issue with tamoxifen though as it strengthens bones)- walk for an hour 5 days and stretch&balance class on the other days so joints seem ok atm. As a late parent to twin teenage boys finding things bit hard but think that's not related to the tablets. Hope things are going well for you.PS Armed with every tablet suggested by the ladies on the site from fish oil, curcumin,panadol osteo etc and yet to use them as feel ok. Am not baying at the moon yet but do get tired but been a busy year 3 major ops , radiotherapy and twin teenage boys driving me crazy at times

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