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
  • I have only join this site. So I do hope your daughter is doing well. My husband who passed away 01/2021 from Sezary Syndrome. My husband had it for six years before they new what he had but he was lucky to be seen by the top people in London16 months before he passed away. The GP and the local Cancer doctors did not know what type of Cancer it was, he was very nearly given the wrong Chemo, treatment but they decided to talk to Guys of London before and they took over his treatment.

    They are the best.

    I do hope again that your daughter is well and that her stem cell transplant went well.

Reply
  • I have only join this site. So I do hope your daughter is doing well. My husband who passed away 01/2021 from Sezary Syndrome. My husband had it for six years before they new what he had but he was lucky to be seen by the top people in London16 months before he passed away. The GP and the local Cancer doctors did not know what type of Cancer it was, he was very nearly given the wrong Chemo, treatment but they decided to talk to Guys of London before and they took over his treatment.

    They are the best.

    I do hope again that your daughter is well and that her stem cell transplant went well.

Children
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