Hello everyone,
I'm wondering why there aren't any treatment medications for CTCL that include ones for the HTLV virus. After all, it is, from everything I have read, responsible for this cancer.
Has anyone done much research on HTLV? As it is sexually transmitted, should we have a test for HTLV and talk to our partners? I'm struggling with this issue and the fact that it isn't really discussed. As a primary cause of CTCL. It seems to be very important in my mind and is bothering me why we don't have any medications to control the virus that is damaging our T cell DNA. I would really appreciate any discussion about it.
Thank you.
Hi and welcome to this corner of the community.
I was diagnosed with CTCL way back in 1999 and although I have heard of HTLV it never has been talked about by my various clinical teams.
HTLV or as human T-cell leukaemia virus type. The virus can cause a type of cancer called adult T-cell leukaemia/lymphoma (ATL)…… this is rather different from CTCL…. I am no expert but from what I have seen I don’t see HTLV being the primary cause for CTCL.
You could post your question to our Cancer Nurse Team in our Ask an Expert section, but do allow two working days for replies from our expert team.
Hi again, as I say I am in no way an expert although my GP used to say that I know far more than him about CTCL. I personally don’t put any time into research, I trust my various clinical teams to do that work for me.
I have been tested for every transmittable disease under the sun over the years especially when going into and through Stem Cell Transplant and I am sure if HIV was in the mix we would have had different discussions.
There is a lot more research being done around CTCL now, and compared to the treatments available back in my first 10 years, great strides have been made.
From everything I've read, HTLV is implicated in Cutaneous T Cell Lymphoma.
If you have read this then I am sure it’s true but it’s not the primary cause for CTCL and there is the problem…. there is no real trigger for CTCL. One of the UKs top CTCL consultant puts getting CTCL down to a collection of unfortunate circumstances that end up developing CTCL and these circumstances can be many things in our control and out with.
I can understand your passion but I am lots as to how you could take this forward, send your findings to Professor Sean Whittaker. Professor of Cutaneous Oncology at Guy’s and St Thomas’ London as he is the UKs top man in the subject.
Have you been diagnosed with CTCL?
