Introducing myself

Hello all,
Last august I was diagnosed with mycosis fungoides/ t cell lymphoma. I’ve had it for about 15 years but it was misdiagnosed as eczema. I’ve had a second consultation and both agree on the diagnosis.
I’m doing well, life is good and my health is good despite the diagnosis. Despite having it for 15 plus years it’s still classed as early(1a) or perhaps even a stage before that as was explained to me by the most recent consultant. If anyone has experience or advice I’d happily take it as I will be actively trying to keep this in check and not allow it to progress if It can done.
Advice on creams/ointments and things to avoid.
Presently I’m on a wait and see approach, skin is patchy on my arms and legs mainly. Which is unusual for mf, but there you go.
Hope you all are keeping well and thank you for your time


Hi @Aaronb and a great big welcome to our forum.
Well that’s a long diagnosis period and really shows how, with generic test results, that it is easy to misdiagnose.
In a funny way I suppose I was diagnosed with Chronic lymphocytic leukaemia (CLL) 20 yrs ago. I was diagnosed by a gynaecologist when treating me for a gynae problem
I have been on watch and see, watch and wait, active monitoring, whatever you want to call it ever since. Other people are started on treatment straight away. I count myself a very lucky girl.
I am not a medical person but I do not believe there is that much you can do to stop any of our conditions progressing, if that is what they decide to do.
My very personal thoughts are:-
Be wary about skin cancers, wear high factor sun screens, hats and cover up.
Do not use extra lotions and potions or take any supplements etc without checking it out with a medical person who knows about your conditions.
I personally believe in a normal balanced diet, with the odd treat.
I also believe in fresh air and reasonable exercise, I am a walker and Pilates girl.
My best tip is if you have been living with your diagnosis for 15 yrs without realising it then go out and continue living your life as you were.
However my diagnosis did give me the opportunity to reassess my life and what I wanted to do and with whom.
Please do keep posting as I look forward to hearing more about you.
Live the life you love and love the life you live.

Thank you for sharing.
It’s a strange one as sun is good, especially uvb . My wife is a food scientist so thankfully she can help me with any technical diet queries. Problem is that it’s 3-5 people per million frequency, so it’s not very well understood( at least that’s why I understand).
Thankfully it’s mild and I do hope it stays that way as it might. However mild it is I’m going to do what I can.


A small world!I too have Mycosis Fungoides but at a far more serious stage than 1a as mine in 2b .Stage 2 is strangely split between the indolent disease and the aggressive disorder,with 2a being indolent and 2b being aggressive.Mine started as a misdiagnosis of Eczema and got progressively worse so they did the 30 substance patch test and decided it was actually Psoriasis .Then some tumours came leading to an amputation and finally the true cause came out.Mycosis Fungoides is very tough ,or has been in my case,and resists every thing except radiation.I have had topical steroids,PUVA,Total Electron Beam,Immunotherapy and Chemotherapy and nothing works.To that end I now will have to have a Stem Cell Transplant as most likely it’ll end up amputating my life!I agree it’s very rare but my sister knew a man in the USA who had stage 4a Mycosis Fungoides but he sadly died of it about a year ago.My mother likewise had a friend who had PCTL NOS a related disease so they might be more common than you think.I would imagine at the early stages a lot of people who have it think that they have Eczema or Psoriasis ?There’s a whole bunch of these T Cell Lymphomas and the actor Sam Neil of Jurassic Park fame was recently diagnosed with one called AITL.