Its been really sad reading some of the experiences many of you have had, so for my first post I thought I would tell a more positive story.  I was diagnosed with Micosis Fungoides MF earlier this year and it's now apparent that I have had it for 4 or 5 years.  I'm at 1B though not totally sure hat that means.  4 years ago I went to my GP with red itchy patches on my back and front.  She immediately referred me to a dermatologist at the local town hospital.  I have been attending that hospital ever since and they have throughout been very frank with me that they were unable to make a diagnosis because nothing was showing up in blood tests or biopsies. They ruled out allergies and drug reactions and kept trying with repeat tests and biopsies, meanwhile trialing UVB therapy and various steroid creams as well as moisturisers.  I've had three series of UVB treatments each of about 20 sessions all with good effect and never any problems.  These series start with short exposure times of just 4 or 5 seconds and gradually build up to around a minute or just over.  Generally I have gone twice a week for these.  Whilst on them the redness and itchiness subside and so give me a few months respite.  I've been told that a lifetime total of around 250 is all the sessions I can have so am currently about one-quarter of the way through towards the total.  I moisturise daily - sometimes twice daily and use the steroid cream when the itching becomes intolerable.  Earlier this year a repeat biopsy showed raised levels of lymphocytes for the first time.  The Dermatologist explained her suspicions of MF told me all about it and then recommended to me that she would refer me to a specialist in MF in London.  Since March I have been under the joint care of the hospital in London and my local hospital.  They communicate well with each other, I alternate appointments between them and they keep me excellently well informed.  This has all been on the NHS and for me is an example of the NHS at its best.  

So what lies in the future?  Who knows?  The doctors cannot say with any certainty because not enough is know about this rare cancer. So far I seem to be in the 80% or so who progress very slowly with MF and so apart from this dreadful itchness, which does seem to be getting worse slowly, at the ripe old age of 68 now, I shall probably be shuffling off with something else at some stage in the future.  My younger brother is battling with prostate cancer at the moment and I know which cancer I would rather have; MF no doubt!  I've still got the option of more sessions of UVB therapy, which the hospital is allowing me to decide how and when I use them and there is also chemo at some stage in the future.

If anybody reading this has any tips for dealing with the itchiness please let me know. 

So I'm not pretending MF is a walk in the park, but it does seem to take different paths and forms in different people.  So, if like me you are new to this forum I hope I have been able to give you some reassurance that some cancers are not a disaster and can be lived with.  I'm really sorry for those who  have suffered much more than I have.