Yes I agree Jay.  I guess we have all had that panic reaction when first diagnosed with, "A Cancer!" and read all sorts of things, but it is far better to read from the established and reputable sites.  What they say is up to date and very much in accord with the advice and information being given to me by the experts at the specialist centre in London.  There is no doubt that for some people MF is a very dangerous, terrible and unfortunately terminal disease, but for most people who get it,  it is a nuisance, an iritation and frankly a pain in the XXXX but with luck we will have it for decades, be treated when it gets a bit worse and as the Professor in London said to me, "The odds are that you will die with this disease not because of it."  The reason it is so hard to diagnose is precisely because it develps so slowly in most sufferers and its early symptoms are very similar to a wide range of skin complaints.

Please let's keep a balanced and accurate perspective on this site and not be too alarmist.

Andy

Hmm... never a good idea to put all your focus on statistics, they just give a general idea... Besides if you believe and perceive the glass to be half full, you can defy all odds! If you choose to see it as half empty, you're right too... but living in 'deficit'! Don't give into your fears, trust and stay positive :-) 

I've found these guidelines for the management of patients with CTCL (latest update was 2014): www.uhb.nhs.uk/.../CancerPbCutaneousTcellLymphoma.pdf

Has anyone got a more recent one?
I've been diagnosed recently with CTCL (blood work + biopsies) but had it for over 20 years (misdiagnosed with a rare/benign skin condition). Staged at 1A this week, although to me it looks over 10% coverage, got internal pains, hot flushes etc but been told it's probably unrelated... No scan though, so I realise they cannot be absolutely certain of it; also since this is a rare condition and they aren't CTCL experts I'm staying alert and will follow my instincts if I feel something is wrong internally, and request scans if need be.I haven't had any treatments in 20 years but the rashes are now growing noticeably faster and more numerous in the last 3-5 years, so I asked for NB UVB, which I should start in the next weeks/months. You can live reasonably normally with CTCL for years, I'm proof of it, however things gradually shift as the rashes can start to spread, but the first rash I had grew very slowly over 10-15 years.

Unlike some of you here, I haven't been given a contact number for questions I may have. It looks like they've followed the protocol on the document above but unsurprisingly I have more questions I forgot to ask... There's limited but good info online though. I found this interesting read: 

www.yalecancercenter.org/YCA-Girardi_335147_5_v1.pdf

The CLFoundation's facebook page and their YouTube has very informative videos: 

www.facebook.com/.../ 

www.youtube.com/.../

There's a CTCL world congress going on in spain at the moment, hopefully they'll share a video for latest info too.

All best best everyone :-)

Well hopefully I have been misinterpreting the dire predictions on the sites,it is strange that 2b is more dire than the stage 3's however ask me in about 4 years and I'll let you know if the dire predictions about 2b are correct!as yesterday, Saturday,I received a letter from the hospital saying that they had decided I was 2b, provisionally they'd guessed 2a,but my own homework told me 2a couldn't be right because of the tumours (the doctor didn't know about the tumours they had cut out and I had to show her pictures on my phone!).it wasn't unexpected as I said due to my own research but a shock and the future has become clouded.... very clouded.

Keep the faith Canopus7! I hope I didn't come across as insensitive, sorry to hear your diagnosis is now 2B, I know any cancer diagnosis is always disheartening and a shock to overcome, I hope you are managing to keep your head above the water, you need to grab ahold of a fighting spirit and you absolutely can overcome this illness, don't take no for an answer and don't let anyone lead you to believe otherwise. I've seen a testimonial from a guy in australia who overcame CTCL stage 4 and has been in remission for 13 years... anything is possible! Another asian woman in the US in remission for 8 years back in 2011, she had followed a natural holistic path and also healed fully. That's the sort of stories you need to hear to give you hope and uplift you. Believe in yourself! It may not be easy but you can blow these clouds away x

2b was a bit of a shock to see in writing as they had tentatively put me at 2a but I was half expecting it due to the tumours as my own research told me 2a didn't have tumours but 2b did.yes I've read about people in 4a1,4a2 and 4b surviving but I believe that at those stages the lymphoma is mobile in the blood and it is very serious and life threatening but not untreatable.they say 1a is curable but not the other stages so ideally if it where possible it should be intercepted then but the snag is most people are diagnosed with ezecma and psoriasis and don't find out it's mycosis fungoides or another rarer ctcl until it's beyond 1a.from my reading there doesn't seem to be an easy test for ctcl.

Hi Mori/Andy

how are you both? Hope all is well!!

Just have quick question 

as you guys know I'm having Narrow Band UV treatment. 
what I want to know is after how many weeks of treatment can you see visible improvements on your skin?

Jay

Hello Jay

after 3 weeks of Monday, Wenesday, Friday treatements, I started to notice a difference.

mind you, that was confused by additional patches becoming visible.

regards - Mori 

Hi Mori

thanks for your quick reply. 
 

After 2 weeks of treatment haven't seen major improvement but saying that,  I have noticed patches have reduced in thickness.

will the lesions (patches/plaques) on my body completely disappear?

jay

I'm 8 weeks into p-uva and I haven't noticed any changes in the condition in fact it has gotten worse as 3 new patches have formed on my wrist and thigh. I only have the puva on my hands and feet.most of the patients who come in go in the uvb room and I hardly ever see any having uva.im guessing most of the other patients have ezecma or psoriasis. the hospital tell me that uva is stronger than uvb, there's uvc too but it's not used on skin as we haven't evolved to deal with it as uvc is filtered out by the ozone layer way up in the stratosphere.