Good morning @dburkert, my suggestion would be to find a large teaching hospital or better yet, make an appointment with Mayo Clinic. Here’s the link to get your appointment request started. http://mayocl.in/1mtmR63
Dr. Grzegorz Nowakowski, a hematologist at Mayo Clinic has a video on T-Cell Granulocytic Leukemia you might find helpful.
Mayo Clinic doctor
Have you been recently been diagnosed with this form of leukemia?
hello Collen and thank you for asking. I think you would call it the stage of checking and waiting but mentioned as an option if that describes it well enough. the term itself threw me for a loop and in my confusion I came here. Referred to hematology for multiple years of high white counts.
I was diagnosed with T Cell LGL one year ago. My neutrophils were down to .5 and never got over 500. For ten months they had me on metrotrexate with no improvement. At the same time, I had a cancerous Lymphoma removed. As soon as I have a basil cell and Mohs surgery and Melanoma surgery on my face, I will begin Cyclosporine treatment.
I was diagnosed in about March, of 2023, and am in the watch and wait status. My blood is checked every three months. On my own I immediately started taking one turmeric and one Omega 3 in the morning and evening and every test so far of my blood has shown to be "normal". Don't know why that is but as long as they work I will keep on taking them. Have another blood draw on January 19, in the morning and will post the results. I asked him if I have inflammation of the thymus gland and he said no. He is not familiar with turmeric or omega 3, and I think they are keeping me alive. I will post the results of my blood draw and let you know.
I am currently on Methotrexate at 20 mg once a week due to my low platelet count and don't see any improvement. My metabolic panel is good and I have no organ damage so hopefully I will get something that works for me next time. I think I know the cause of me getting LGL and am wondering if I see Dr. Grzegorz Nowakowski, if in his best opinion I could be correct?
I am currently on Methotrexate at 20 mg once a week due to my low platelet count and don't see any improvement. My metabolic panel is good and I have no organ damage so hopefully I will get something that works for me next time. I think I know the cause of me getting LGL and am wondering if I see Dr. Grzegorz Nowakowski, if in his best opinion I could be correct?
No, I am in the care of Dr. Shank, in Maplewood MN, and have been for 1.5 years with no improvement. Thinking of changing oncologist because I don't think methotrexate has a good effective rate and there are better first line drugs that I should of been given. Have another appointment for the 15th of July, for consultation.
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Welcome @dburkert, The Leukemia & Lymphoma Society (LLS) has information on the condition that may be helpful - https://www.lls.org/leukemia/large-granular-lymphocytic-leukemia.
Do you mind sharing what answers or type of information you are looking?
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2 ReactionsAre there physicians who specialize in various types as I am told this is somewhat rare.
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1 ReactionGood morning @dburkert, my suggestion would be to find a large teaching hospital or better yet, make an appointment with Mayo Clinic. Here’s the link to get your appointment request started. http://mayocl.in/1mtmR63
Dr. Grzegorz Nowakowski, a hematologist at Mayo Clinic has a video on T-Cell Granulocytic Leukemia you might find helpful.
Mayo Clinic doctor
Have you been recently been diagnosed with this form of leukemia?
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2 ReactionsHi @dburkert, I thought I would check in. Have you been diagnosed with T-cell large granular lymphocyte leukemia? How are you doing?
hello Collen and thank you for asking. I think you would call it the stage of checking and waiting but mentioned as an option if that describes it well enough. the term itself threw me for a loop and in my confusion I came here. Referred to hematology for multiple years of high white counts.
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Like -
Helpful -
Hug
1 ReactionI was diagnosed with T Cell LGL one year ago. My neutrophils were down to .5 and never got over 500. For ten months they had me on metrotrexate with no improvement. At the same time, I had a cancerous Lymphoma removed. As soon as I have a basil cell and Mohs surgery and Melanoma surgery on my face, I will begin Cyclosporine treatment.
I was diagnosed in about March, of 2023, and am in the watch and wait status. My blood is checked every three months. On my own I immediately started taking one turmeric and one Omega 3 in the morning and evening and every test so far of my blood has shown to be "normal". Don't know why that is but as long as they work I will keep on taking them. Have another blood draw on January 19, in the morning and will post the results. I asked him if I have inflammation of the thymus gland and he said no. He is not familiar with turmeric or omega 3, and I think they are keeping me alive. I will post the results of my blood draw and let you know.
I am currently on Methotrexate at 20 mg once a week due to my low platelet count and don't see any improvement. My metabolic panel is good and I have no organ damage so hopefully I will get something that works for me next time. I think I know the cause of me getting LGL and am wondering if I see Dr. Grzegorz Nowakowski, if in his best opinion I could be correct?
Hi @jumper123, are you currently in the care of Dr. Nowakowski at Mayo Clinic in Rochester?
No, I am in the care of Dr. Shank, in Maplewood MN, and have been for 1.5 years with no improvement. Thinking of changing oncologist because I don't think methotrexate has a good effective rate and there are better first line drugs that I should of been given. Have another appointment for the 15th of July, for consultation.
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Like -
Helpful -
Hug
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