Yes it is a very rare Leukemia and a form of Non-Hodgkins Lymphoma. Dr. Thomas Loughran, the Medical Director of the Emily Couric Cancer Center at the University of Virginia defined it as a distinct type of Leukemia in the mid 80’s.
If you notice most all research articles on LGLL are either written or reviewed by him. If you can make the trip to Charlottesville, VA it is worth seeing him. You can get in his research program. Plus once you are his patient he can direct your treatment from anywhere in coordination with any local Oncologist. I did. He gets sent a blood draw every six months or so. I have the comfort of knowing if I ever get in “trouble” he is a phone call away from anywhere in the world. Someone else recommended the same thing for CLL patients recently.

I could not tolerate Methotrexate so I am on Leuflomide. I was just diagnosed in March. I’m still reading much on LGL because my Hem/onc never refers to it as Leukemia only LGL . Every site I read says LGL is leukemia. It is T cell LGL

Yes, I have T-cell LGL. Diagnosed 13 months ago. On methothrexate to elevate white blood cell count.

Yes. I have NK T Cell LGL Leukemia. Extremely rare as you probably know.

Hi. I’m sorry about the diagnosis. The fatigue is the absolute worse part of this in my opinion. If you can do any exercise at all, it does help a bit. I do a ten minute bike work. I understand how difficult that is. Believe me.