worried

FormerMember
FormerMember
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Hello. My Consultant has said my tumour markers have risen and she wants to put me on Tamoxifen to see how I respond to that. She has asked for another blood test in six weeks with another scan in early November.  She said there is a slight spot on my liver.  I feel a bit numb because I have been stable for over a year and since the Palbociclib has been stopped is when my problems started.  I need to know if she thinks the NHS will allow this med after having a previous funding request rejected. I need to know what other meds are out there and possible trials. I feel so stressed at the moment.  Hope you are all as well as can be xx

  • FormerMember
    FormerMember

    I don't know anything about funding from the NHS Ellie as I live in New Zealand, but I just wanted to say that after a year of cancer in my breast and bones, a couple of wee spots showed up in my liver too.  I'd been on Palbociclib up until then too. 

    Just wanted to say that that was a year ago and the spots on my liver have so far (perhaps we'll hear differently today), but up until now have been held by Capecitabine.  I don't know if that's funded in the UK or not.  I'm hopeful for you that they'll find a drug to hold the spots where they are.  

    Kindness.

    Robyn

  • Hi EllieEllie, I'm not sure how the funding works. My oncologist got one of the labs to fund the drug I needed under "special circumstances" and I know without that, I definitely would not still be here! I wonder if you have phoned the McMillan Helpline that's on the site? I'm sure they will be able to advise or at least point you on the right direction! Good luck!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • FormerMember
    FormerMember in reply to FormerMember

    Hello Robyn

    Thanks for your reply. I shall make a note of that drug and discuss it with my Consultant next week. Happy to hear you are doing well x

    Love

    Ellie

  • FormerMember
    FormerMember in reply to anndanv

    Hello

    No I haven't rung them but I will.  Thanks x

    Love

    Ellie

  • FormerMember
    FormerMember in reply to anndanv

    Hello

    Which drug is that ? I wanted to go armed with as much info as possible. Thanks Ellie x

  • FormerMember
    FormerMember

    Hi 

    Sorry which drug is it that you hope will be funded?

  • FormerMember
    FormerMember in reply to FormerMember

    Hello

    i tried to get Palbociclib on the NHS but the funding request was refused.  This was after my insurance company refused to pay for it anymore.

    Ellie