Until you can see a doctor keep the cysts sterile and use antiseptic cream don't use stuff like detol or TCP as they dry out the skin.the tumour on my finger was huge and very painful and almost got me thinking about cutting my own finger off or blasting it off with a shotgun!! luckily it didn't come to that but it illistrates the thin line between physical and mental illness.even little things that you take for granted caused me to have such pain like the wind blowing my coat zip and guess what of all the parts of the hand it could hit....it hit the finger!as Mori says with mycosis fungoidis it very much depends on what genes it actives or shuts off.but ultimately it all boils down to Newton's second law of thermodynamics, the fact that things move from order to disorder.our bodies are doing this along with the universe itself.

Another problem that I developed at the same time as the mycosis fungoidis flared up into tumours is a persistent cough which has been with me for about a year and a half.its hard to believe that the two aren't related in some way and although I have told various doctors they have never done a chest x-ray or the like.all the doctors have said it might be due to the mycosis fungoidis weakening my immune system .I think that I will have to press them on this after reading that a lot of lung cancer goes undiagnosed plus lung cancer was a secondary cause of death in people weakened by mycosis fungoidis I have read.

That's also another thing, I frequently fall ill and when I do, It will be from 1-2 weeks, I always get a sore throat and cough which stays for an extra week or so, sometimes resulting in me losing my voice.. that's one thing I am going to mention on tuesday, I feel sick a lot of the time, which gives me a fever at times too! I really hope your MF doesn't bother you as much anymore! It's honestly so sad to hear :(

Hi Maureen

I glad your husband is doing well now.

4B is the maximum stage I think.  And it's amazing to hear of all the treatments he has been through, and is OK.

Regards and say hello to your amazing man!

Mori 

HI Mori/Andy

my Narrow band UVB starts tomorrow. Have you guys got any advice for me on do's and don'ts during the treatment?

jay

Hi Jay,

There's not a lot to it really.  A bit like going to a tanning booth.  The operator - probably a nurse - will explain what to do and what not to do.  They will start at low levels and build up over time.  Before you go it's probably best not to use any moisturisers or other make up and certainly no steroid creams.  Also during one series I had, I got told off for having quite a severe haircut half way through because it exposed some very white skin which they were afraid would be damaged.  They made me rub suntan lotion round the white bits.  For males they make you wear a sock over your "bits" for some reason. That may be too much information!  Good luck, It will take a few sessions before you feel any benefits.

Andy

Thanks Andy I appreciate it, hopefully it goes well. Another question Andy, I was again told by the nurse today when I signing my consent form regarding the UVB treatment, she said that UVB treatment isn't a cure (which I knew) but what does the UVB do to the cancer on the skin?

jay

Hi! I had my mtd meeting today, it was quite overwhelming and made me nervous so I didnt ask about MF.. there were about 10 doctors in the room and they still had no diagnosis about what they think it is, so they decided that I should have another biopsy either from my arm or scalp.. however they said that they do not believe I have alopecia on my head, and that it may be lichen planopilaris but are not sure, I wish I wasn't so nervous to tell them about MF :(

A missed opportunity!they won't assume mycosis fungoidis unless they get the idea about it in their heads.if it is the sooner it's identified the better, could save your life! Say that you knew someone who has/had mycosis fungoidis and what you have looks similar.theyll probably go along the ezecma/psoriasis line until something crops up which doesn't fit.