Welcome to our forum. You've come to the right place to connect with others affected by Mycosis Fungoides. One name inevitably springs to my mind, one of our members [@Mori] has posted extensively on the forum about this and I am sure would be a great person for you to talk to. We also have some information on mycosis fungoides here.
If you type 'mycosis fungoides' in our forum search (located in the blue banner at the top) you will be able to find past relevant threads on the subject and respond to any that may be of interest to you. I found this thread for example which may be helpful to you. Hopefully others like [@Mori] for example will be along soon to share resources and patient support groups that might be useful to you.
there's only a few folks on Cancerchat who have CTCL MF, because it's such a rare cancer.
The incidence is around 1 person in 150,000 people per annum, but it varies quite a bit by country.
The largest support groups are in the USA, as there's over 300 million Americans. Glad to share the details with you, and offer cautions about the quality of advice.
if you are newly diagnosed, I'll bet you are a little confused about this strangely named lymphoma.
But most importantly, don't panic or make up bucket lists right now.
Of every hundred people diagnosed, about 85 will have what's know as an "indolent course" - the cancer doesn't really progress, and causes periodic red skin patches which can be treated.
About 15 folks out of every hundred will have some form of disease progression, and the red patches can change to plaques (think raised parches a few mm high), or even tumours.
Many of the progressed patients can be treated, and they survive.
The strange disease that is CTCL MF is also "exquisitely radiosensitive", which means that spot radiotherapy really can work wonders.
After I was diagnosed, I had to read articles about CTCL MF in medical journals for two years to "get my head around" the disease. I couldn't find support groups ten years ago.
But I'm more confident about my CTCL MF now, and I try to help whoever I can.
This link is to the search page at the CLF website - I searched for United Kindom and 3 hospitals were listed - I think these might be UK centres of excellence for CTCL MF:
www.clfoundation.org/search
While many large hospitals do treat CTCL MF, what you really need to look for is a centre of excellence that has the specialists that treat all the forms of cutaneous lymphoma. I'm afraid that most standard public hospitals only have limited expertise.
I live in Western Australia, and the closest centre of excellence for me is a specialist cancer hospital in Melbourne, 3,000 km away. They periodically have patient education forums, and I've attended one session, and I found it very helpful.
There are a couple of Facebook closed groups that you could apply to join, but I personally found the groups to be chaotic, and more timeconsuming than actually helpful. But they can assist in putting you in contact with like minded souls. Let me know if you want the names of the groups.
Of course, your local versions of the "Lymphoma Foundation" will have some information, and could be worth contacting.
Lastly, what I have found to be most helpful to me is an US-based list server which is basically a mailing list. Members send questions to the list, and other patients can provide responses.
There is also an archive of emails that can be searched.
Go to listserv.acor.org/.../wa-acor.exe, and select CTCL-MF. The full name of the list is CTCL/Mycosis Fungoides information and support, and it has 1263 Subscribers.
