Hi just looking for anyone who’s had experience with cutaneous lymphoma. Everything is pointing towards it as I don’t have any other symptoms apart from skin apart from tiredness and hot extremely itchy skin with lesions on my forehead scalp back and arms . I had my biopsy in December results in January positive for lymphoma testing further on the biopsy which I haven’t had results for yet .
Had my CT scan in January which luckily has not detected anything . I don’t see my Dermatologist again til mid March but I still feel stressed .
I’ve been reading up on cutaneous lymphoma seems it’s broken down into 2 main types and seems to be fairly rare . I’m just wondering if anyone has this type of skin lymphoma and what did treatment entail .
Thankyou A very red itchy and anxious women here looking for reassurance
Hi again Pjpumpkin …… if you remember back to your last posts I confirmed to you that I was diagnosed with my type of Cutaneous T-Cell Lymphoma (CTCL) a rare type of Low-grade non-Hodgkin lymphoma way back in 1999 when I was 44.
There are a few different types of CTCL and the one I have is the 8 in a million Mycosis Fungodes.
For the first 14 years of my diagnosis I had various skin treatments, a yearly CT that never showed anything and an appointment with my Dermatologist every 6 months…. You can see my story in this (LINK)
The main issue with me was in 1999 I developed a second type of high-grade T-Cell Lymphoma but this one was a type of Peripheral T-Cell NHL that had to be treated aggressively…….
But 25+ years on from my initial CTCL diagnosis I am now 9+ years out from my last treatment and living a great life.
Are you in the UK?
What hospital are you being seen at?
Any specific questions just ask.
Hi Pam Pjpumpkin ….. it took a long time for me to get diagnosed as CTCL is often mistaken for Psoriasis……. this time frame is rather normal unfortunately.
I am up in Inverness but as you will see in my story I had some of my treatment at The Beatson in Glasgow but once the Stem Cell Transplant Unit was transferred to the QE I had my final check up appointments at the QE…
It’s a few years since I was discharged from seeing my consultant but there was one Heamatology consultant who specialised in CTCL.
I was seen by my Dermatologist for the first 14 years and Steroid Creams were the very first line of treatment, use it exactly as advised and it should help calm things down you also need to be using good quality moisturiser, no scented products and using something like Dermol 200 Shower Emollient.…… You can get all these things free through your GP.
You must drink lots of water…… good hydration helps you skin and you can’t ware any denim as it’s like wearing cloths that are made from sandpaper.
Yes my skin initially was very itchy and hot but doing all the things I have highlighted makes a big difference.
