LGL Leukemia

Thank-you for your reply.

I contacted the doctor is Texas -- the one referred on this site.  He suggested a second opinion.  SO... while I was in the sauna, a child survivor of Luekemia suggested Seattle Cancer Care Allience.  I went to the find the doctor site, and found a doctor who emailed me right away and wants to set up an appointment. 

 So... I wrote everything down and sent it to my PCP to contact specialitst here to compile "all the records" requested from Seattle.

 Question:

You say you have no immune system.  Does that mean no numbers at all on IgG, IgM, IgA...???  Are you getting immunoglobulin therapy too?

For me, "autoimmune" symtoms have been a major problem.  And T cells keep rising -- slow but sure in a wave-like pattern.  I understand that docs look for clonality.  Last study showed "Small T cell clones against a polyclonal background"  My question is this:  Does this mean there are "clones" and they are too small to tell from what line?  OR does this mean that there is a line (I was not told) and there are "a small number of them"? 

Also, is it possible to have polyclonal T cell LGL?

Do specialitsts visit this site?

Sincerely,

m

On 1/17/2008 PeaceLearning wrote:

Thank-you for your reply.

I contacted the doctor is Texas -- the one referred on this site.  He suggested a second opinion.  SO... while I was in the sauna, a child survivor of Luekemia suggested Seattle Cancer Care Allience.  I went to the find the doctor site, and found a doctor who emailed me right away and wants to set up an appointment. 

 So... I wrote everything down and sent it to my PCP to contact specialitst here to compile "all the records" requested from Seattle.

 Question:

You say you have no immune system.  Does that mean no numbers at all on IgG, IgM, IgA...???  Are you getting immunoglobulin therapy too?

 

For me, "autoimmune" symtoms have been a major problem.  And T cells keep rising -- slow but sure in a wave-like pattern.  I understand that docs look for clonality.  Last study showed "Small T cell clones against a polyclonal background"  My question is this:  Does this mean there are "clones" and they are too small to tell from what line?  OR does this mean that there is a line (I was not told) and there are "a small number of them"? 

Also, is it possible to have polyclonal T cell LGL?

 

Do specialitsts visit this site?

Sincerely,

m

my IgG levels are high and my IgM levels are high. B2 Microglobulin serum level is also high. My working cells indicated in a "absolute neutrophil count or GR#" are 0.09 and 0.2, low, indicating no working immune system. As far as the blood smears, I have some conflicting tests of small Tcells of clonal gamma rearrangement. They look at the affected type of cell, shape, size and how it is developed, and then the counts. Too much for me to understand. These tests can  be different per patient and are not cut and dried per diagnosis. Second opinions are important. Not sure physicians come to this site. Sorry I can not help much with your questions, research is hard to find and understand. LGL is rare and most Doctors are not even familiar with it. I was missed diagnosed at first, some T-Cell Leukemias are very simular. Hope it gets easier for both of us. Thank you, TJ

On 5/26/2007 Rekeysmom1 wrote:

I am a 27 year old who just found out that I have LGL Leukemia.  My doctor has not yet told me what the treatments are for peolple that have this.  What all treatsments are there?  My blood Platelet count has been very low for the last 6 months is this normal for people who have LGL? Also how serious is LGL?

My fiance was diagnosed with LGL about 15 years ago at the age of 21 by Dr. Moldrum who is now in Texas.  She was the guinea pig (and the Star) at NIH for the use of cyclosporine and ATG.  Both were approved by the FDA for use based on her participation.  Besides NIH, the best places for LGL diagnosis and treatment are MD Anderson in Texas and the Moffit Center in Tampa, FL. For the platelets, transfusions.  Little was known about LGL leukemia prior to her participation in the studies. She refused methatrexate and there are still no bone marrow matches.  She has been in complete remission for about 4 years now...