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

Thank you , my granddaughter lives partime with me and I give her loads and loads of cuddles she keeps me going

Hi ...

So glad your so close with your granddaughter.... I know my granddaughter is my world too .. think they keep us going ... sorry you've not got an answer yet ... if you put it in your search engine you get some info there ...  xx

Thanks as always 

Hi there just read your post, i was diagnosed with Mycosis Fungoides 2 years ago at stage 3a. I was told the same thing its rare and not curable. I have tried different treatments but i had bad reactions to them, took off my latest treatment 2 days ago because it wasn't helping and now docter's are offering me a trial which i'm not sure i want. When i first had chemo it made me very ill, my hair fell out and i ended up with cellulities and sepsis and ended up in hospital because i was really ill. As i have tried so many treatments the docters are saying they are running out of options because nothing is helping so don't know how its all going to end, i'm getting really fed up now. So your daughter isn't alone there is a few cases of this cancer. Good luck anyway. 

Hiya it’s bittersweet that uve told me you also have mycosis fungoides as I no what a horrible cancer it is to have Being witness to seeing how much my daughter suffers each day coz of it , but then on the other hand it’s good to be able to speak to someone that no,s where I’m coming fm , my daughter was going to be offered a trial but then they found sezary cells in her blood so she’s having chemo at the moment which seems to have made the sezary cells die out of her blood ,but they have offered my daughter to have a stem cell transplant where I am going to be her half match once she’s feeling strong enough to have it done ,my daughter consultant says if it works it could put my daughters cancer in remission have they offered that to you? , feel free to talk to me on this forum when ever u can hopefully we can find support in each other 

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.