Hello, I have been diagnosed with T-LGLL. I also have PH+ with a T315I mutation. I was diagnosed with T-LGLL in February. I see my doctor August 13, 2024. He wants to see if the clonality goes down for the CML. So far it has been steady but my WBC keeps going up while my RBS is low. My platelets doubled in February and was 178,

Usually methotrexate is used for T-LGLL. However, many people are on a wait and see. There is a Facebook group for T-LGLL. When reading the more acute T-LGLL please keep in mind that is not the average. Many are on wait and see and others are on low dose methotrexate. Acute T-LGLL is not most peoples experiences. .

Thank you, Stuart. Yes, it's been very difficult finding info or others with this leukemia. Only 1 in one million people a year are diagnosed with it. Why couldn't that have been the lottery! Lol

I was diagnosed with LGL in 2022. I was on “watch and wait” for about 1.5 year. I started taking Methotrexate 4 months ago. So far there has not been improvements.

I'm so glad Beverly that you have got some of the answers to your rare diagnosis., That's the advantage of being a member of this Site

Hi Beverley5, I am really sorry about your recent diagnosis.
Unfortunately, I have never heard of LGLL T cell .
Maybe get more information from the articles posted on this Site, or other members
Take care
Stuart