Thanks, Betsy! I wish him all the luck as well. If you're interested, I found another, more active message more for LGL. Many of the individuals in that group are also patients of Dr. L (at one time or another). Here's the link:
http://health.groups.yahoo.com/group/Large_Granular_Lymphocyte_Leukemia/
Again - I hope this Zarnestra is the one that finally works for your son.
Jim,
Thanks again! I appreciate all the info. you have provided about the transfusions. Good luck to you tomorrow!
It looks like I have a blood draw on Wednesday and a transfusion on Friday. We'll see. You have definitely given me some things to consider. No one else had mentioned the Benadryl/Tylenol. I will definitely ask the doctor about that.
By the way, I found another message group in Yahoo Groups on this topic that is pretty active with postings almost daily. Not sure if you have already seen it or not:
http://health.groups.yahoo.com/group/Large_Granular_Lymphocyte_Leukemia/
Thanks again,
Ed
Jim,
Thanks for your response. I will likely be receiving my first transfusion this week. Any tips on what to expect?
thanks,
Ed
Dear Mom of Teen,
I read your postings and wondered what treatment your son is pursuing through Dr. L? Is is Zarnestra? If so, how is he doing?
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
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
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
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
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