Hello LLad79

Thanks for the compliment.

My patches were not painful.

The bright red patches on my lower legs literally "came up overnight".  UVB resolved it.

A couple of years later, duller and browner patches slowly evolved on one buttock.  The skin texture was roughened.  Again resolved by UVB light.

When you see the GP, they may not have heard of Mycosis Fungoides

Many CTCL MF patients experience years of delay in diagnosis, as sometimes it's not entirely "clear cut".  DNA sequencing got me firmly staged - my DNA had been changed.

There are a range of lymphoproliferative disorders of the skin, and some are more problematic than others.  I hope you have a quick diagnosis.

Regards - Mori

The patches look red and if you look with a magnifying glass you'll see that they are made up of tiny blisters.on the body they are not painful but if you get them on your hands and feet they are very painful and can restrict your movements.at the higher stages of mycosis fungoides tumours form which are hard and don't seem to contain pus.i don't know how far down the tumours go but I think that they may be attached to the bone?the tumours are very painful and dangerous.melenomas and mycosis fungoides are different types of cancer although both attack the skin mycosis fungoides is actually a blood cancer and as best I can figure out is originating in the bones and something has gone wrong with their t cell making????I suppose it may be possible for a melenoma to transform into mycosis fungoides and vice versa but I don't know enough about it....I suppose that you could do without either happening!

As an aside to what I wrote above the tumour aren't always painful and I have had one form on my right heal about 3cm long,2cm wide and 1cm high and I can't feel it hurting.i haven't told the hospital about it yet, infact I have only just put 2 and 2 together and realized what it is.

Hello, 

I was diagnosed with MF about 6 weeks ago, while still awaiting some results they are confident it's 1A. I'm 30, and just interested to hear how life's been for you Mori? I am assuming that i will continue life as normal now, with sporadic treatment for the patches. They seem to be saying that from 1A the disease isn't progressive, though I'm struggling to understand that. 

Any info on your case would be hugely valuable, as I believe we may have received similar diagnoses. 

Hello Hibba

Stage IA is fairly indolent, and usually easily controlled with UVB light.

Generally only 12 to 15% of cases progress to the higher stages.

Higher stages are more difficult to manage, but treatments do exist.  For example, skin tumours associated with Stage IIB can be very effectively treated with spot radiation.

If your disease does progress, find one of the centres of excellence in the UK - these are hospitals with specialist, multi-disciplinary staff, who are familiar with the disease.

Stay calm, and perhaps visit https://www.clfoundation.org/ - this is a trusted and reliable US website, dedicated to the rare disease you've been diagnosed with.

Regards - Mori

They can use two types of radiation.the traditional localised one on the tumours themselves or a kind of whole body radiation.i think that the whole body radiation is fairly new  so presumably not available in many places and you can only have it I think once,by which I mean one series of treatment rather than one session,as your exposure to radiation will be over the lifetime limit.i think that the whole body radiation is used for plaques and patches too?UVB is the least penetrating radiation,well if you don't count UVC which isn't used on human skin, then UVA and after that you get to the more fierce stuff.

Hi everyone 

Hope you all are keeping safe and well in these unprecedented times. 
 

There has been news on the development of a vaccine for coronavirus which is a good news for everyone. What I want to know is will the vaccine work on us? What I know or I could be wrong is that mycosis fungoides effects/compromises the immune system. Will the vaccine help us or not? 
 

kind Regards 

jay

It'll help anyone providing they are not allergic to the vaccine but obviously for those with damaged immune systems the effect will be less strong.well that's my guess and what I've been told about flu vaccine and anti virals like Tamiflu.

Hello Folks

There's been quite a bit of discussion on this topic on the US-based cutaneous lymphoma list server.

Yes - the vaccine will work on people who have Mycosis Fungoides or any other form of cutaneous lymphoma.

The most elegant list server message was from an retired professor of biology, who explained that while our skin-resident CD 4 (or CD 8) T-helper lymphocytes are damaged, the balance of our immune sytems are still working, i.e. in the lungs, intestines, blood etc. 

So sufferers should get a good immune response.  I suppose there's no harm asking your GP to run a test for the presence of anti-bodies, just out of an abundance of caution.

Mori