Hello - Im 43 with Mycosis Fungoides

I was diagnosed in 2007 with Grade 1A Mycosis Fungoides - CTCL.  Still 1A 12 years on luckily.  Still itched like heck though.

Im 43 and from Edinburgh.  Had 2 boys since my diagnosis.  

Currently using sterioid ointment at night (coveredin a tubigrip so reduce stained sheets) and 5050 and sudocreme if needed in daytime.  I am a scratcher though and findign that habit hard to break.

No idea why I didtn think of joining this forum earlier for support.

Sarah.

  • Hello Sarah, 

    And a warm welcome to our forum. Poor you it does sound particulary itchy and I hope you manage to get some relief through the ointments and creams you are using. I can imagine it must be really hard to resist the urge to scratch! 

    I noticed you have already been in touch with [@Mori]‍  on that thread who will be a great person for you to chat to as well as many others on our forum who have mycosis fungoides. I am pleased you have joined our forum for support and I hope that you will hear from many of our members who have been affected by mycosis fungoides. 

    I will now let others come and say hello and share their story with you! It does help to talk to someone else who is in a similar position experiencing similar symptoms such as the intense itchiness you describe. 

    If you ever wanted to have a chat with our nurses, you can get in touch with them on this free number 0808 800 4040 - their line is open Monday to Friday from 9am to 5pm. 

    Best wishes, 

    Lucie, Cancer Chat Moderator