Hi,I was diagnosed with cutaneous Non-Hodgkin lymphoma ('NHL') in 2024 and am wondering if there is anyone else with the same ,as I’m struggling to find any information about this ?
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Hi @Traceysnake and welcome to the forum.
My diagnosis is a different blood cancer called Myelofibrosis.
It’s usual to be provided with information at time of diagnosis but it sounds like it hasn’t been the case for you.
If looking for information use trusted sites like Macmillan Cancer Support and Cancer Research.
The @BloodCancerUK-SupportTeam should be able to offer advice after the Bank Holiday so may be worthwhile reaching out to them.
Hope that helps
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Hello there @Traceysnake, welcome to the forum. I’m glad you found us and I’m sure you’ll find others with similar diagnoses and experiences.
Living with a rare blood disorder really does make it hard to find others who know how it can be, so I’m glad you’re here to find out more. I never thought I’d find others living with Polycythaemia vera ('PV') like me but there’s a lovely bunch here, and perhaps the same will be the case for you. I’ll share here the Blood Cancer UK information about Non-Hodgkin lymphoma ('NHL') for general information: Non-Hodgkin lymphoma - what is it, symptoms and treatment | Blood Cancer UK
Hope you don’t mind but I’ll share some links below to other cancer organisations with direct information about cutaneous non-Hodgkin lymphoma.
Lymphoma Action: Skin (cutaneous) T-cell lymphoma | Lymphoma Action
Cancer Research UK: Skin lymphoma - Cutaneous T cell lymphoma (CTCL) | Cancer Research UK
Macmillan Cancer Support: Cutaneous T-cell lymphoma (CTCL) - a type of skin lymphoma | Macmillan Cancer Support
To find others around the forum who have shared their experiences of Non-Hodgkin lymphoma ('NHL') use the search box at the top or Related Topics below and you’ll see you are not alone in living with lymphoma.
Do consider giving the Blood Cancer UK specialist nurses a call on the number @DuncanB shared above, they really know their stuff and are lovely too. They’ll be back tomorrow (Monday).
Hope that helps a little @Traceysnake, do have a look around the forum and keep us posted about how you get on.
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Thankyou so much for the information you have given me ,I really appreciate it .I must admit even going into year 2 post diagnosis and 3 rounds of radiotherapy ,I still find it all a little bewildering and at times lonely .I will certainly search the sites you have recommended and give the nurses a call 
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You’re most welcome @Traceysnake, and I totally empathise with you about being beyond diagnosis and yet still wondering about it all.
Another tip about tolerating this is to try never taking for granted the questions and worries that can come up—often for me at inopportune moments, like when I’m trying to sleep or concentrate on other stuff. Keep note of those questions to ask your specialists and around the forum and I bet they’ll be answered or advice offered.
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Hi @Traceysnake
Just following on from excellent post from @Duncan to let you know that the Blood Cancer Support line just being open from 10am until 1pm tomorrow with it being the May Bank Holiday
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Ah yes very good point @DuncanB, I actually forget how many bank holidays there are in the UK! Hope you’re having a great long weekend 
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Hi @Traceysnake, and welcome to the Forum from me too. I’m Ceri from Blood Cancer UK Support Services. I’m glad the community has been so quick to respond - you’ve come to the right place.
One thing that might help with that sense of connection is that our colleagues at Lymphoma Action run monthly support meetings for people affected by lymphoma, which may be worth exploring. They did have a specific one for cutaneous lymphoma, but I can’t currently find any details on their website about it.
I’m also going to tag a few community members who may have relevant experience of their own to share. Those who I’ve tagged, please don’t feel any pressure to respond - only if you’re able. @Smroczynsk001, @Kevan7, @Kay2 and @MarieCL, we’d be grateful.
Our Support Services team is also here if you’d like to talk things through - 0808 2080 888 (option 1) or support@bloodcancer.org.uk.
Take care,
Ceri - Blood Cancer UK Support Services
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I assume that yours is a T Cell Lymphoma as B Cell Cutaneous Lymphoma is much rarer in fact I’ve never heard of anyone having that(CBCL).I’m further guessing that it is probably Mycosis Fungoides which is by far the most common of the CTCL’s and the one that I have.I have Stage 2b of Mycosis Fungoides, the start of the aggressive disorder,and have undergone loads of treatments; Topical Steroids, PUVA, Methotrexate, Interferon Alpha,Bextarotene, Radiation,Brentuximab,Total Electron Beam and Stem Cell Transplant and they are just the ones that I can remember!They either didn’t work or worked short term and the Mycosis Fungoides relapsed within about 8 months.They are trying Acetretin in combination with oral PUVA now.
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It is indeed B cell lymphoma ,which my haematologist says is rare .I have had 2 lots of radiotherapy on cutaneous lesions, and 1 lot on the inguinal lymph node .Now 2 more lesions have appeared and they are considering chemotherapy.
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They are all rare but strangely with the skin Lymphoma most is T Cell.I say strange as most Lymphoma and Leukemia in general is B Cell and only 9 percent T Cell with a very tiny amount NK Cell too.Mine started as an Eczema like disease which was what it was misdiagnosed as and after a number of years of not responding to treatment a re diagnosis of Psoriasis occurred.Then about 6 years ago various big tumours came including one which caused the amputation of my finger and this lead to the discovery that it was actually Mycosis Fungoides at work.
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