Wow well done for getting an appointment sooner! At least you have a diagnosis and now a treatment date with PUVA, that's good progress. I had no idea about the 62 days rule, thanks for sharing! My appointment is now a few days away so I'll wait.

Try not to worry if your rash has become extensive in a short time compared with mine (or anyone elses), don't forget that our personal situations, environments and bodies may be different. I'll give further info below about the misdiagnosis in my case and about CTCL rash progression. I've read about PUVA and NB UVB as I'm researching every bit of info about ALL treatments, but I don't have any experience of it so cannot comment personnally... It sounds like you are still in an early stage, just make sure they do further test to ensure none of your nodes or visceral organs are affected, this will put your mind at ease! I am hoping to get NB UVB but I'll need to know how advanced things are in my case...

Please report back after your treatment! I'd love to know how things are going and the advice you've been given, etc. How did they decide on the PUVA treatment? Have you been given a stage yet? 
I'd like to know about anyone's experience with PUVA and Narrow Band UVB too and their stages. I know they 'reserve' radiations and chemo for stage 2. I've also read that they now favour more targeted treaments and combinations of treatments for CTCL FM... It would be good to hear from anyone going through combinations of treatments too for stages over 1A/1B.

I hope you can manage your stress levels since you got your diagnosis and while you wait. I've felt a lot worst since my diagnosis in early december; I'm sure this is due to it playing on my mind constantly so trying to stay calm and simplify my life and remove stressors...if it's not fight or flight (ie if I'm not faced with a bear chasing me, or other real danger) I should not let it affect my peace. Easy to say, harder to put in practice but we CAN do it! :-)

Yes, my rash was very limited at first: quite faint and small for the first 10-13 years, but in my case it was misdiagnosed as being a rare but benign skin condition (I was @21). Dermatologists said this was totally benign but that it would never go away and since there was no pain (no noticeable itch for a few years) then it was best to DO NOTHING. Creams had not worked, the only other treament was UV treatments but they underlined I'd have it my whole life because even with UV it always came back after a few weeks; they basically had no known cure for it. I'd heard of other sufferers who, after UV treament, developed skin cancer so I decided to leave it alone since it didn't hurt and wasn't in a visible area. The initial misdiagnosis came after skin biopsies but they never had the sense to biopsy the actual rash(!) Ijust tried to live with it as best I could... went back to the dermatologist @10 years after misdiagnosis and was prescribed canisten cream...!

I was very lucky to have a mild case of CTCL for many years which made it possible for me to carry on living a good life, despite being completely unaware for years that this was in fact a blood 'skin' cancer; hopefully anyone reading this with a mild case of CTCL FM will gain hope knowing that they can totally live well for decades even untreated... BUT that they should make every effort to follow their gut and actively seek alternative help without losing hope, and never take 'no' for an answer! ;-)

Hi Marguerite

I hope you have now had your appointment and have started treatment.  I had a letter today saying the consultant wants to see me to discuss my results so I am only guessing the news is not good as orginally she said she would phone me with my results as soon as they came through.  The more I read I believe my type is advanced and aggressive which does not bode well.  I find it difficult to cope with the constant waiting and no offer of any support.  I live on my own and so I now wonder how I am going to cope as the cancer gets worse.  I certainly don't want to die in a long drawn out way if I am told its in an advanced stage and aggressive.  I am not sure where to start looking to find out more.  The wait has been torture but I guess the news will be even more of a nightmare.

I feel alone and in total panic.

I hope you have better news.

As Mori says the CL Foundation has some info and there are a couple of CTCL groups on Facebook I've found, people share info and it can help a lot. You need to find all possible ways to manage your stress as I'm sure this only makes the condition worst. Do you think it's a Sezary subtype?
If you feel isolated and live alone, try to join in community support groups. I've found a website for a charity called Yes To Life which lists complementary therapies in the UK, it can help you to relief symptoms a lot, check them out. There isn't a lot of support in the traditional medical system, it's often doom and gloom I've found... we need to learn to cheer ourselves on and be our own biggest supporters, we need a fighting spirit! Do not give into your fears, you can beat this, many have. Have another look at the patients testimonials on CL Foundation, it can give you the hope you need to start to calm your nerves down. Keep us posted and keep the faith! x