My husband (aged 61) was diagnosed with Sezary syndrome on Friday. To say it was a shock is something of an understatement. He went to see a dermatologist privately, who was provided by his company’s insurance. He went with an itchy skin and was bluntly told he had aggressive sezary, that it isn’t curable and there was no treatment available.
Looking online at the nhs site, it would seem there are several treatments available. My husband has an appointment with an nhs dermatologist consultant next Saturday.
We are still reeling from this and would appreciate any advice about anything really.
Hi Christalp and welcome to the Community. I am Mike Thehighlander and I help out around our blood cancer groups.
I was diagnosed way back in 1999 with Mycosis Fungodes, MF is one of a few types of Cutaneous T-Cell Non Hodgkin’s Lymphoma (CTCL). These types of Lymphoma is a rare, incurable but treatable and at one point I was Stage 4a.
Sezary syndrome is actually another type of CTCL. So the AML group you have posted in is a completely different type of blood cancer.
Could I recommend you join our dedicated T-cell lymphomas group and set up a post and we can talk more with you in that group.
