My partner has recently been diagnosed with this rare cancer, looking for others who have had the same diagnosis to discuss treatment plans etc with
Hi again K8Ann and welcome to this corner of the community.
I am Mike and I help out around our various Lymphoma groups.
I was diagnosed way back in 1999 at 43 with my rare rare, incurable type of Cutaneous T-Cell Lymohoma (Mycosis Fungoides) eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.
T-Cell Lymphomas are rare and even then, there are a number of very rare types……. I had a look on the Lymphoma Action website…… and the closest info I can find is primary cutaneous gamma/delta T-cell lymphoma……
My type is 8 in a million and it took me years to actually connect with anyone with the same type…… but let’s see if anyone is lurking in the background with experience.
In your other post in the New to Community you say that your partner has had some treatment - what exact treatment has he had?……. Treatment is often known as a set of letters….. I had 6 cycles of R-EPOCH.
Always around to chat and answer questions as best as I can.
T-Cell Lymphomas can often be challenging to clearly diagnose…… 24 years ago it took over a year and 6 biopsies to eventually pinpoint my type…… you can see my story using this (LINK)…….. various Lymphomas are often driven by the EBV.
Even although I lived with and was treated for my MF for 24 years it transformed in late 2013 into a more aggressive Peripheral T-Cell Lymohoma so we had to hit it hard.
ICE is often used to get things under control and to open the door for going into Stem Cell Transplant (SCT)….. has this been mentioned?…… you will see that so have had 2 Allo (donor) SCTs.
