Hi, I was diagnosed via an immunopheno spin down in 2004. Oncologist thinks it started about 2000.
I haven't had any noticeable symptoms other than I had a significant drop in aerobic performance about the time the doctor thinks it occurred. My running endurance dropped off considerably. Strength has not been affected, I lift a lot of weight in the gym w/o issues.
My blood values had been pretty stable for the past nearly 5 yrs. They did another spin down this summer and the test results are noticeably better but not enough that the diagnosis has changed.
I haven't been given any medication and the oncologist said I won't unless things worse dramatically. Methotrexate is one of the main meds. Doctor thinks I will motor along as I am and doesn't expect it to worsen.
One of the problems if you call it that is that this disease is a rare form of leukemia and they don't have enough patients in a single area to do much of a valid study.
My impression and it is just that, an impression, from what I have read is that this T-cell LGL is pretty rough on young kids and perhaps teenagers but far less so on older folks and the older perhaps better. I'm 62, maybe something good about getting older? As the other poster said, feel free to email me at DONALDM86@msn.com if you desire more commentary from me.
Best wishes to you. Don