I have been doing some research on mycosis fungoidis and I'm afraid it is deadly in it's own right without the need of secondary infections to help it.a report from Helsinki university shows 8 people died of it and 1 from szezary syndrome which may or may not be the same cancer.the report excluded secondary illnesses.plus an elderly lady in Japan is reported to have died from MF directly.im guessing that the victims where stage 2 and above?the fast ctcl's which are much rarer than MF and very deadly.

Yes - Mycosis Fungoides (Cutaneous T-Cell Lymphoma) can kill, and it can be very cruel indeed.

But the important thing to focus on is that only 1 person in every 5 or 6 patients will progress to higher stages.

in other words, 85% to perhaps 88% of patients will not have disease progression.  They will die with the disease, but not because of it. 

You are generally correct about stage 2 being the threshhold .  In Stages 1A and 1B , red and multicoloured patches, sometimes about 1mm high, can cause terrible itching.  

At Stage 2A , the patches become elevated to plaques - which I think can be about 5mm high or more.  The increased thickness is due to mutated T-Cells multiplying out of control.

At Stage 2B, tumours appear, and the skin barrier can be destroyed at the open tumour site.  Please note that higher stages can be treated, and they are not "automatic death sentences".

After years of reading medical literature, I realised that at stage 1 you can keep working, but that if you are diagnosed at stage 2, you need to consider that you have a very serious illness.  

It is called a cancer, but it doesn't always act like a wildfire.  I often say to relatives that I have a "smouldering Lymphoma".

Sezary is treated seriously by doctors.  I gather that it's a Leukaemic form of CTCL that's  "similar but different" in that there's  lots of blood involvement (instead of the CTCL being in the skin).

Mori

I have had 4 tumours all on my left hand;one one my finger causing the removal of the finger ,1 went by itself, another formed on my palm and was removed and it was the biopsy of this one that lead to the diagnosis of mycosis fungoidis,the 4th is on my thumb and has destroyed the joint and will be treated at the hospital next week(every NHS hospital in Oxford under the belt with the exception of the mental health hospitals!)with radiotherapy.they say I'm probably stage 2a which rather bemused me as the tumours should make me 2b?I went through 1a/b thinking that I had ezecma and psoriasis obviously too late now but if it had been intercepted early it would have spared me a fair bit of pain.

Those tumours sound bloody awful Canopus7.

Tumours can be quickly removed with spot radiotherapy, providing that you are at a hospital that has expertise with this weird and rare rare rare lymphoma.

I've also talked to a patient who has Interluken injections, which removed his facial tumours.

If I were in you, I would find a centre of excellence.  I know there is one in London.  Do you need details of the hospital that you need to go to?

Paul can I ask how it started for you? I've had reactions to corn causing splits and dry skin on my hands then I had some soap cause redness and really dry arms. I had what seemed like contact dermatitis but it spread in a few weeks all over. Does that sound like this or just dermatitis and or hives from allergies?

Hello Canopus

I don't know how rhe UK's referral system works, because I live on the West coast of Australia.

I would phone the centre of excellence for advice.  They will know what your GP needs to do.

I don't know about psoriasis, other than I dislike using a light chamber after psoriasis patients  -  they can leave crunchy bits in the chamber.

thiazide blood pressure medications MUST be avoided, as they can act as an antigen to MF, making the MF worse.  My GP was mortified when I gave him a scholarly article on this topic.  

When in any doubt about CTCL MF, or any other cutaneous lymphoma, go to the Cutaneous Lymphoma Foundation's website:

https://www.clfoundation.org/

Mori

Do you have a centre of excellence in Perth? it's a long way to Adelaide, Melbourne or Sydney if you don't! effectively mycosis fungoidis resembles psoriasis and ezecma but the cause is quite different; psoriasis is the immune system in overdrive, ezecma is generally caused by moisture not getting to the skin top but also reactions to irritating things, dermatitis is a reaction to say a metal like chrome and is fairly easy to control by removing the irritating substance,ctcl is cancer cells rising to the skins top and what you see is a combination of the cancer cells and the skin fighting them.obviously there are plenty of other skin ailments as well like ring worm (a fungal infection).you don't read much information on stage 1b and 2a MF, there's a lot more on 1a/2b and the 3a/b,4a/b.from my reading there's a very significant drop in life expectancy between 1a and 2a,32 years to 12(I don't know if there's a drop between 1a and 1b?) and a big drop between 2a to 2b, 3.7 years.

Really! There's a very significant drop in life expectancy between 1a and 2a from 32 years to 12 years?!!! I thought if you have stage 1a to 2a your life goes on as normal and you have a normal life expectancy!! Of course with treatment. I'm at stage 1B and what I've been told by Mori and Andy on here is pretty much what I've read on sites like CTCL FOUNDATIONS and other sites. I'm a bit confused now

Yes I read that there's a drop off between 1a and 2a, didn't mention 1b,but I can't remember where I read it.its all very confusing as for example 2b has a lower life expectancy than 3b,yet 3b is a more serious progression.i don't put a great deal of store by these figures as no single source agrees.