Lgl

I am 41, male DX w/LGL 2 yrs ago after 5 yrs searching. Have 5 atypical symptoms & cells don't match any others after pathologist nation wide have studied. Been to Nat'l Cancer Inst. and Penn State Med. Center, Hershey PN seeking + DX. Currently in a study prog. w/Dr. Laughren there. He descovered this 20some yrs. ago.
2 failed treatments,Cyclosporin& Methotrexate holding off on others until absolutely necessary. hi fevers but no sweats right now & 6+ nose bleeds daily. No energy and feel crummy at all times. My spleen was removed 01-05 weighing 5+lbs.!!! improved blood but not health. Liver is now 3X normal sz. & growing.
Dr.L is great and after 1st visit all ck's and trtmnts can be done at your local Oncolgist. He has 3 studies, 1 to gather info & create a data base of patients, 1 for disease research, 1 for treatmnts. I like him much, replies to e-mail personally and answers all ???'s. Any one not involved, PLEASE ask you oncologist for a referal to him. Research is the key to cure and patients required for research. Curious of others with simular symptoms, treatment successes etc. Thanks, Amos Moses

Hello,

I am a 74 year old white male who was recently diagnosed with T-cell Large Granular Lymphocyte disorder. About 10 years ago in a routine blood workup, the doctor told me I had abnormal red blood cells and to keep watch over them. Doctors have mentioned these abnormal shaped cells for years and no one has put a name to them. This past year I have been fatigued and have a just run down feeling that I attributed to old age, even tho I am active, not overweight, and walk each day. In a routine blood test a month ago, my HGB was 8 where last year same time it was 12.8. A bone marrow biopsy confirmed T-cell LGL. Weekly blood tests confirm that HGB is rapidly decreasing, down to 7 currently. My ANC is just over 1000. Dr. Loughran has a study using Zarnestra, an experimental drug. Has anyone heard of this drug? Anyone using it? Currently I am in week two of Methotrexate with no side effects so far. If blood levels fall lower, hematologist strongly recommends blood transfusions. Is there anyone out there who can advise me about the treatments they are currently using? Thank you for any information you can give me.
Edward