Hello I was diagnosed with CTCL last week and I am waiting for my ct scan and a visit to the haematology team. I am feeling shocked and hoping that I can link in with others who have this also. My basic understanding is that each experience is different. I had a fast growing lesion on my forehead, initially they thought it may be skin cancer, but it’s not. I’ve had surgery and 8 weeks later my diagnosis. I’m female, 55 and otherwise very fit. I was diagnosed with rosacea 10 years ago. Which clearly was not!
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Hello @MarieCL
Welcome to the forum and thank you for taking time to send in your post
I’m sorry to learn about tour diagnosis, it must be a very difficult time for you and your family.
I afraid I cannot relate directly to your circumstance as I do not have CTCL (I have Chronic lymphocytic leukaemia ('CLL')) but I feel I can relate to the shock of receiving the diagnosis as I received mine less than a year ago so it is still some what raw.
There are many who will have not dissimilar situations like yours so do feel free to reach out to others in the forum, if it helps the link Cutaneous T-Cell Lymphoma may be a good place to start.
If you prefer don’t forget, you can always speak confidentially with our support services team for information and support 0808 2080 888
Please do feel free to let us know how you get on
Take good care of yourself
Kind regards
Mike
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hello @GenesisDevice thank you so much for your reply. It’s roller coaster I feel hasn’t really started yet. I will check out the place you’ve suggested. Wishing you all the best.
Thanks
MC
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Sounds like with me I was misdiagnosed as having Eczema and later amended to Psoriasis but it was neither and only when it became the more aggressive tumour stage did the truth come out ….Mycosis Fungoides one of the more common of the T Cell Lymphomas although still rare.With me everything they have tried as failed to stop it but have slowed it down until it finds a way around it.Even a Stem Cell Transplant has failed and it’s on the move again!
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Hi my wife has mycosis Fungoides; been 3 years since she was told. She is on MXT and still alive, but gets weak and her skin is thin now. She has UV light treatments 2 times a week. She wears gloves to wash dishes and long sleeve shirts each day. Stage IVA. Just red spots on the skin, the UV light treatment keeps them away.
Sorry to hear that.You get 3 kinds of UV light there’s UVC but they don’t use that as it can cause severe burns,UVB and UVA. UVA is the one generally used for MF as it penetrates the skin deeper.UVB is mainly used for Eczema, Psoriasis and early stage 1A/B MF.They tried UVA with me and it didn’t work.You have Total Electron Beam too which is more complicated to administer and is ionizing radiation.Total Electron worked with me but not 100 percent cleaning up about 90 percent of the lesions however it wasn’t durable as the lesions came back after about 6 months.I am Stage 2B which is the beginning of the high grade Lymphoma which means it is tumour stage but hasn’t comprised the internal organs.