Anyone have rare cancer, mycosis fungoides sezary syndrome?

Is there anyone on this forum who knows someone or has a cancer called mycosis fungoides sezary syndrome because this is what my 31 year old daughter has , we.ve been told it’s very rare and is incurable her only hope to maybe extend her life is a stem cell donor which I am going to be for her . When she is strong enough to have it, even her consultants are baffled by this cancer, until my daughter was diagnosed with it I had never heard of this cancer right now my daughter is having Pallative chemotherapy but is very weak and in a lot of pain  ,she keeps telling me she just wants to go to sleep and see heaven I think she has just had enough but I tell her keep fighting especially for her 4 year old daughter 

Parents
  • Hi Christine...

    I've been looking up that cancer .. it says they get a really itchy rash ...  Bless her .. because it's so rare you may not get anyone with it .. though fingers crossed someone knows ..

    I can well imagine your daughters had enough and just wants it to stop ... I'm sure she's held on with everything she's got ...for her little one .... who is caring for her now ... she is going to need her nanny .. I hope she's getting loads of cuddles ... what a heartbraking time for you all ...

    But that's a mum, giving her your cells ... think we'd do anything for them ... 

    Sending you a vertual hug.... hope you get some answers ... Chrissie xx

Reply
  • Hi Christine...

    I've been looking up that cancer .. it says they get a really itchy rash ...  Bless her .. because it's so rare you may not get anyone with it .. though fingers crossed someone knows ..

    I can well imagine your daughters had enough and just wants it to stop ... I'm sure she's held on with everything she's got ...for her little one .... who is caring for her now ... she is going to need her nanny .. I hope she's getting loads of cuddles ... what a heartbraking time for you all ...

    But that's a mum, giving her your cells ... think we'd do anything for them ... 

    Sending you a vertual hug.... hope you get some answers ... Chrissie xx

Children