LGLL

HI Mummu and welcome to this corner of the Community although I am always sorry to hear about……….. diagnosis. I am Mike and I help out around our various Blood Cancer groups.

I don’t have Large Granular Lymphocytic Leukaemia (LGLL) but I have been on my journey since 1999 when at 43 I was diagnosed with my first rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL was then presenting so although my Blood Cancer ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

Like my first type of Lymphoma LGLL is a slow growing blood cancer........ also on the rare side but let's look for any group members with LGLL to pick up on your post and get back to you.

You may want to check out Leukaemia Care UK who the main UK Leukaemia charity, they produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444

You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing.
Always around to help more or just to chat

Hi. Welcome to the forum. I was dagnosed with LGLL - one of the rarest leukaemias in 2021. Do you know what type of LGLL you have? I have T cell LGLL and it is extremely slow developing but you can get NK cell LGLL which will progress more quickly.  

Hi Mummu, I can appreciate how you feel, I was diagnosed with T-Cell LGLL IN 2018 and handed a one page photocopy description of the condition and told not to worry. Since then there is a lot more information available particularly at https://media.leukaemiacare.org.uk/wp-content/uploads/20250704150609/Newly-Diagnosed-in-LGLL-Booklet-Web-Version.pdf. As for don’t worry I didn’t find that easy but so far I haven’t needed any treatment and just have a blood test each year and a quick chat with a consultant. From being at the front of my mind all the time it now has slipped to the back to the extent when recently applying for travel insurance I nearly forgot I had it! I can only tell you my experience and that is after you get over the initial concern at hearing the word cancer you begin to learn that all cancers aren’t the same, and as I’ve been told several times, if you going to get a cancer this is the one to get as it’s usually slow developing if it develops at all and most people live a long and full life with it. I wish you well at this first stressful stage and hope that you can follow my path and soon learn to just be aware but not let it seem more important than it is.