I was diagnosed with CTCL last month and have started chemotherapy. A lot of the online research shows most people with this cancer are 50+. I am a healthy and active female in my 30s and wondering if there is anyone else like me dealing with T-cell lymphoma? I’m trying to find a support system as I’m feeling overwhelmed and under informed.
My symptoms started around age 26 with moderate eczema. For the past two years I’ve worked with a dermatologist to try to get my skin issues under control. Nothing worked. Had multiple skin biopsies and came back as CTCL.
Please reach out if you are in a similar situation or have gone through this. Thanks!!
Hi @Smroczynsk001 and a great big welcome to our forum.
Personally, and I am not a medical person, there might be guidelines for averages but nobody tells medical conditions that.
When I was diagnosed with another blood cancer at 53yrs old and yes, very healthy and fairly fit it was called an old man’s disease and I felt a real outcast.
This has since changed.
I hope others will be able to share their experiences for you.
However what I have noticed is that no matter what the blood cancer is many of us share the same fears, thoughts, feelings, questions and practicalities so please do not worry about being alone or not part of, you are now part of our forum family.
The Blood Cancer Support line is also there for you on 0808 2080 888
Look after yourself and please do keep posting as I look forward to hearing more about you.
Thank you for reaching out and a big welcome to our supportive online community.
I can only imagine what a shock it was to receive your diagnosis, and I’m so sorry to read all you’ve been through. It can be difficult to find others in the same situation as you, but there are people here who care and who can understand that feeling of overwhelm. I hope you find that support and connection.
If you do want to talk things through or get more information, please know that our Support Service is also there for you. You can speak in confidence to one of our Support Services Nurses by calling our free Support Line on 0808 2080 888 .
I have this disorder and I have just had a Stem Cell Transplant because of it.CTCL is actually a group of closely related cancers;Mycosis Fungoides ,PCTL NOS Cutaneous ,Large Cell Anaplastic Cutaneous ,Sezary Syndrome,NK Nasal Type and a host of others.MF is the most common followed Large Cell Anaplastic and I have MF .You are correct that it begins like Eczema or Psoriasis .As it is very uncommon I only know what happened with me…it began when I was about 40 resembling Eczema and just got worse and worse and the diagnosis was changed to Psoriasis.After about 6 years strange bruises appeared with no obvious cause and about a month after that tumours came on my hand causing the amputation of a finger.The plaques and tumours always become infected so you have to be very careful and use antiseptic creams on them .I am at Stage 2B the begining of the aggressive disorder .They say but I don’t know how true it is only 10 percent of people who have Stage 1A progress but the figures are much higher for 1B/2A.As I understand it Large Cell Anaplastic Cutaneous is generally a little less aggressive than MF but from photos it looks pretty similar to MF to me!
Thank you all for your kind words and understanding! It’s difficult to share my condition with my friends. They either shy away completely or do not know what to say. When I say I feel bad from chemo - I’m nauseous and so tired, they don’t understand. I was very healthy before this. It’s been a daily challenge.
Hi @Smroczynsk001 I have realised that nobody has a manual of how to respond or be with us in such situations.
Perhaps that is one of the ways that our forum is so useful, I have had the same responses as you, you are not the only one.
Unless you have experienced something you cannot understand what it is like and it is not the same for any two people.
I was also so healthy for my first 1/2 century and I had never had a day off in the 15 yrs I worked for my employer.
It really hurt when they wanted written proof of my diagnosis, blood tests, appointments etc. Others in my department were regularly taking days off sick for colds etc. and nobody questioned it.
Yes, it is a challenge when we least need it, please do keep posting, we are here for you as is the Blood Cancer UK support line on 0808 2080 888.
Be very kind to yourself.
As you are having chemotherapy i’m guessing that you might have Mycosis Fungoides or Large Cell Anaplastic Cutaneous as those two are by far the most common kinds although still pretty rare? To be honest I’d never heard of these T Cell Lymphomas before until I was diagnosed with MF. I’d heard of Lymphoma and Leukaemia and I knew that they weren’t very desirable things to have(!)but I didn’t know about all of the subtypes .
Thank you for your posts @Erica and @Kevan7. Your responses are helpful as I feel lacking of information and a support system. Yes, mine is MF. I saw a specialist this week who is changing up my treatment plan (for the better, I am hopeful).
What was scaring me was that my last doctor thought my CTCL was from taking a year of Dupixent shots to ease my Eczema symptoms. It did not work and in fact turned my Eczema into Psoriasis. During the time I was on Dupixent, I did multiple rounds of egg freezing over a 6-month period. Was terrified I spent all the time/agony/money on non-viable eggs. The specialist said not to worry, regardless, but that I’ve likely had this for years (prior to Dupixent).
Really been a roller coaster of changes, thoughts, and emotions. Greatly appreciative of the comments, insight and support! heart
Oh, @Smroczynsk001 no wonder you were so scared, thanks for your really honest post.
Oh, and when I read that you were terrified and did multiple rounds of egg freezing and spent all your time, agony and money on non viable eggs my heart went out to you, what a rollercoaster as you say.
Personally, not a medical opinion, I reckon my thoughts and emotions have stayed on high alert since my diagnosis 20 yrs ago.
I have found that no matter what our diagnosis is many of us share similar fears, thoughts, emotions and practicalities.
I am glad that the haematologist you saw this week is changing your treatment plan, please do let us know how it goes. I do like to have a plan.
Be ever so kind to yourself, thanks again for your honest post and please do keep posting.
And it was probably never Eczema or Psoriasis to begin with but Mycosis Fungoides! Apparently very hard to tell the difference at the earliest stages of MF.Even harder to tell the various T Cell Lymphomas apart and at one point they didn’t know if mine was MF or PCTL NOS(Cutaneous)which I think was due to the aggressive course it took.