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
  • Yes I know someone with mycosis fungoides....me! running at stage 2b and the usual history of misdiagnosis until the tumours came.its seriously bad news I can tell you and most information is about the 1a/b stages as most people don't seem to progress beyond them and they are similar to having ezecma or psoriasis except I suppose unlike ezecma or psoriasis they carry the potential threat of progressing to worst stages.also in the lower stages it doesn't seem to respond to treatments for ezecma or psoriasis at least I never did and baffled the doctors as to why it didn't respond obviously because it was something completely different!I wouldn't underestimate mycosis fungoides I lost a finger and thumb to it .

Reply
  • Yes I know someone with mycosis fungoides....me! running at stage 2b and the usual history of misdiagnosis until the tumours came.its seriously bad news I can tell you and most information is about the 1a/b stages as most people don't seem to progress beyond them and they are similar to having ezecma or psoriasis except I suppose unlike ezecma or psoriasis they carry the potential threat of progressing to worst stages.also in the lower stages it doesn't seem to respond to treatments for ezecma or psoriasis at least I never did and baffled the doctors as to why it didn't respond obviously because it was something completely different!I wouldn't underestimate mycosis fungoides I lost a finger and thumb to it .

Children
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