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Mycosis fungodies

Bubbyx
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Hi everyone I'm Bubby, just joined the group. I was diagnosed with cuntanious T cell lymphoma rare form mycosis fungodies 2 years ago. The treatment I have been receiving is topical treatment , it seems to improve the conditions for a little while but the patches return, also noticed that other parts of the body that where not affected seem to of started to get patches, that are itchy at times . I try to moisturise the skin with cetraben cream that I have been prescribed. I was just wondering if someone's knows if the conditions will improve or does it progress over time.

Bubbyx

 

  • Hello Bubbyx

    I'm sorry to hear about your diagnosis. I'm sure that it's been challenging at times living with this condition. 

    We do have some information on our website here about mycosis fungoides but as skin lymphoma is quite a rare form of NHL you might find it helpful to have a look at the Lymphoma Action UK website as they have much more information available. I've linked the site for you here. 

    I don't think we have any members currently active on the forum living with MF however you're most welcome to give our team of nurses a call for some advice, information, and support. I'm sure they'll be more than happy to chat things through with you. If you'd like to chat with them they're available Monday to Friday 9 am to 5 pm on 0808 800 4040. Alternatively, Lymphoma Action UK has lots of different support options available and it may be that you're able to chat with others who have this diagnosis on their forum. 

    I do hope that things settle and improve for you. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

  • Offline in reply to Moderator Jenn

    Hello Jenn, 

    thank you very much for all the useful information you have sent me much appreciated, 

    Best wishes 

    Bubbyx

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