Hi Annemac,

Just thought I'd come and say Hi to you and welcome to cancerchat. I have to be honest and say I havent heard of your mouthful of a diagnosis before but with the words mycosis and fungoides it sounds as if it is of a fungul origin. 

It must be a bit disconcerting not having much information out there in the ether to devour, and having the doctors in a similar situation. Even though not many people are going to have heard / know much about it one would expect someone with a little experience of it to be able to give info. Good luck with the biopsies and let us know how you get on. All the best Annabel.

Hi Annabel and thank you for taking the time to reply. It is a bit.of a mouthful eh!?!! Took me a while to learn it!! The fungoides bit came about 200yrs ago when it was first dagnosed....as it starts with lesions on the skin they thought it was some sort of fungal disease. However..it's  actually  type of blood cancer that attacks the hair follicles to begin with....then the lymphatic system ......and that's about all I know! Hope you are keeping well. Love and light....Anne