Forum Discussion

6 Replies

  • MandaMoo's avatar
    MandaMoo
    Member
    14 years ago
    The drug isn't FDA approved yet - it is still in trial phase and as she was so advanced she didn't qualify for trial. It is up for FDA approval based on initial very positive trial results and she was requesting compassionate use at the drug company's discretion. I understand her desire oh so much but I also understand the drug company. If they approve for her then how many others? All before FDA approval - the sadder thing is here in Australia it would be unlikely that she could get it at all without being on a trial. We can't even have various combinations without self funding or compassionate programs at the discretion of the drug companies. Our oncologists loose the right to treat us individually as the government relies on evidence based medicine (for a reason) which is population based not individualized. That said - if/when I am ever in her position I would do the same. I hear that she has responded very well to the drug already! Yeah!
  • MandaMoo's avatar
    MandaMoo
    Member
    14 years ago
    The drug isn't FDA approved yet - it is still in trial phase and as she was so advanced she didn't qualify for trial. It is up for FDA approval based on initial very positive trial results and she was requesting compassionate use at the drug company's discretion. I understand her desire oh so much but I also understand the drug company. If they approve for her then how many others? All before FDA approval - the sadder thing is here in Australia it would be unlikely that she could get it at all without being on a trial. We can't even have various combinations without self funding or compassionate programs at the discretion of the drug companies. Our oncologists loose the right to treat us individually as the government relies on evidence based medicine (for a reason) which is population based not individualized. That said - if/when I am ever in her position I would do the same. I hear that she has responded very well to the drug already! Yeah!
  • Cheryl_D's avatar
    Cheryl_D
    Member
    14 years ago

    Saw this video and it broke my heart, to think she has had to beg publicly for this treatment is a disgrace as this drug has been around for a few years now,

    Cheryl

  • Tania67's avatar
    Tania67
    Member
    14 years ago

    Leonie,

    I am so sorry to hear that you lost your friend to this awefull disease. You do make sense. People who give up on life choose to do it in a  momentarily laps of reason. It is an illness in itself. There are so many people out there who have thought about the option of suicide and gone to sleep and woken the next day wondering what they were thinking...then there are people who are consumed with depression and think about it every day to the point where they acheive it.

    With us pink ladies...we dont have a choice....all we can do is fight. And fight we will. I have a 4 yo daughter who needs me...so I fight. I look at all I can do to fight this. Opinions, second opinions (my daughter's uncle is a professor in onc so I am lucky to ask him) anything we can do to fight this. Clinical Depression and other mental illnesses are a complete other matter. Very hard to help and guide.

    We pink ladies suffer our depression but it is not a clinical thing. It is more of a sadness of what are enduring and the drugs we are on also encourages depression. And it may last a day or two but we move on from it with the help of our friends and family and the beautiful ladies on this site.

    We here are all the epitomy of "NEVER GIVE UP"

    XXXX

  • Leonie_Moore's avatar
    Leonie_Moore
    Member
    14 years ago

    The power to live is very strong.  I have never been able to "fathom" why people commit suicide until -  My daughter is a Clinical Psychologist and has "filled" me in as to why - so now it makes sense - nothing to do with the will to live.  Gosh I am not making sense!!!!  I saw the power to live in my dear friend.  She fought BC for 5 years through a very tough battle. She would never give up until she was in hospital and her doctor said that she would never be able to go home.    She was the epitomy of "Never Give up".  It is now just 4 years since we lost her and I think of her every day. XLeonie