Hello. I can't seem to find any posts on my recent diagnosis and am trying to get my head around it. I have just been diagnosed with Large granular lymphocytic leukaemia (LGLL)
. Is there anyone else out there who has the same condition as it seems that it's quite rare.
Interesting stuff, my guy didn’t say about this being the leukaemia to have is you have to have one but he suggested something like that. At the time I was diagnosed a friend was diagnosed with acute myeloid leukaemia and is having a hell of a time, his problems make me feel guilty even thinking I might feel a bit sorry for myself 
. I recently had a weird experience, I have started taking vitamin D and when my GP gave me a blood test last week my neutrophil count has doubled ! Oddly my lymphocyte count has gone to 13.5 which seems higher, no idea what this means but we do become much more aware of these numbers 
Another question my my consultant is suppose.
update: Asked consultant about Vitamin D but he was very dismissive
My journey was rather different but I was told in 1999 that my rare CTCL was going to be like living with a life long chronic illness that had no cure but was treatable but I would not have times of remission....... fast forward 16 years I was told remission - you just never know.
Hi Sprowston and welcome to this corner of the community. Having one of these rare types of blood cancer can be challenging in many ways and one being able to talk with others with the same condition. My T-Cell is a rare Lymphoma but let’s see if any of the folks with LGLL are still looking in.
Hi Sprowston. I was diagnosed with the same thing three years ago. I remember the first few months being particularly stressful, information is hard to find and when you do find any it’s confusing as it covers every eventuality good or bad equally so you don’t know which bit relates to you or not. Things like average life expectancy is meaningless as you don’t know where you fit in the average agrange or how long you have had the disorder. Just the word Leukaemia is stressful and the lack of specific information about you adds to the fear of the unknown. So a worrying time mostly because of the unknowns. To give some balance to the medical data and reports I can only offer you my story. I went on six monthly bloods for two years and am now on yearly visits. I haven’t been unwell and if I hadn’t received the diagnosis I would still have no idea I wasn’t perfectly fine. The repeated chest infections that caused me to be tested have disappeared, probably due to covid shielding. So all in all my experience is I worried a lot to start with and every year that passes I worry less and just get in with life. Good luck. 
