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