T Cell LGL

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I am a 36 year old woman with T Cell LGL. I found out about 3 months ago for sure, but 3 years ago had my spleen removed for what the doctors said was a very bad case of epstine barr virus. Now knowing the T Cell LGL that was the real case of the enlarged spleen that had to come out. I have been started on Methotrexate ( Cemo. in a pill ) and Prednisone. I have bad bone and joint pain and tired all the time. All the info I have found on the internet on T Cell LGL states the age o onset in the late 50's well I guess that would be wrong. I would love to hear from other people with this leukemia and see how their treatment is going.

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marylou4032

mechelle
I am 56 and was diagnosed 2 months ago. I am a nurse and did some investigating and looking at previous lab studies and think I have had it for 10 years already. Clinically other than infections I have no anemia, or platelet problems yet. My Onc says he has 6 people in his practice and has not had to treat any of them for over 10 years. I am just a w&w with blood draw scheduled every 3 months for now. I am hopeful I stay this way for a long time, I have too much planned to deal with illness and disability. I pray that ll goes well for you. I guess we are the more rare CLL's
Maryam

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Annette_H_3

I am a 47 year old female that has been diagnosed with T-cell LGL Leukemia as of October, 2007. My infection fighting factor is still under 500. My last blood draw showed that my lymphocytes is at 67% which is very high, but it is coming down a little at a time. I am taking Cyclophosphamide instead of Methotrexate because I am allergic to the Methotrexate. I am also fighting the Rheumatoid Arthritis along with the leukemia. Not much fun!! I have been hospitalized with an infection last month, but was just put on antibiotics at the hospital and kept there until the fever came down (3 days). How are we supposed to stay away from people that are sick when they are everywhere this time of year? Got any suggestions!

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longbow

I posted a message on hear under the other LGL message boards, please look it up . longbow

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tjteresa

I am 49, diagnosed, T-LGL oct,07 also. 8 days in the hospital. I have been given a mantainence antibotic, Cyclosporine, and monthly nulasta shots. My weakness, bone, joint, and muscle pain has put me on disability from work. I rarely leave the house now. Have not had any infections since hospital and my bloodwork has not changed much. Not sure what I should see from the Cyclorsporine yet, but the nulasta shots, painful as they are, seem to help fight infections for short periods.

Well Wishes, TJ

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5 Posts | Page(s): 1