LGL Leukemia

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?

 

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 Mum is 71 and has just been diognosed with T Cell LGL Leukemia with severe Neutropenia. She is on a daily course of Cyclosporin and injections of Neupogen 3 times a week. Her Neutropil count is 0.6 at the moment. We are hoping this will go up over the nest few weeks. Apparently this condition can go un-diagnosed for years, and only detected by accident with a routine blood test or if your found to be suffering from servere neutropenia. How are you coping and have you found much information out?

You sound as puzzled as I am. I am 36 years old and have T Cell LGL. I found out for sure that I have it 3 months ago. I was feeling very tired and just not right when my blood counts came back my white blood cell counts were twice the normal. That's when all the other test started. I have have this for over 3 years now but did not know untill now.3 years ago i had my spleen removed due to my spleen being 3 times its normal size and it was dead. Then they told me that it was Epstine Barr Virus. But it was the the T Cell LGL. My doctor has put me on Methotrexate ( cemo. in a pill) and Prednisone. The meds. haven't made me feel better as of yet but i still wishing. I would like to hear how your treatment is going.

I am a 49 year old female diagnosed with T-LGL last week, They thought it was PLL and now I am having to research LGL instead. Have'nt found much yet on the subject and I have a lot of questions. I am supposed to start Cyclosporine tomorrow, but would like more information first. I have had this for at least one year and possibly four. I am having increasing joint pain, Hep C, recurrent infections, fever, fatigue with high lymphocyte and neutropenia. Please let me know if you have any info and I will do the same.

Hi, I have had lgl  for 16 years or more and suffered much until I learned much on this disorder. I can't speak for anyone else and I'm not a doctor but this is what I am doing. I believe it is a fungis issue. I have been feeling great the last two years. In the Bible there is a passage that says "the fruit of the tree is for food and the leaves are for healing." I used a fantastic herb called Olive Leaf Extract. It's an anti fungal. look this herb up on the internet. it has done two different things for me. First it fights viruis which helped me to grow stronger. Second it has taken away my weakness, nausea, and fatigue. I have never had any treatment by a doctor. This is what has helped me. Some mult. vitamins i have takin' are Super-vite, Super Bio C Buffered two to three thousand mg, CoQ10 200mg, Olive Leaf Extreact fifteen hundred mg. All this each day. I hope this imformation is helpful for you. may the good Lord bless you. Longbow  

Dear Longbow,

Thank you for your reply. I would like to learn more about LGL and have'nt found much. Can you point me in a good direction, I am very interested in your current therapy and am open to find the best way. Thanks for your kindness. God Bless You

I sent you my phone number, but maybe it was wrong? some of the imformation came from curezone .com, I had been sick a long time so I had searched and tried so many things before I found olive leaf extract. I started feel better in just a few weeks. the first thing it did is gave back my energy. to this day I seem to just get better with time. I also eat lots of greens, vegetables, and fruit. I try not to eat out to much and stay away from processed foods,sugar,MSG,and diet stuff. I found that sunshine and exercise helped make me feel better.  Hope this was helpful and let me know how your doing. Lord be with you. Longbow

hi...

seems i do not fit the T Cell LGL picture to perfection.  Though it is thought this is a probable dx... please help me if this sounds familiar.

I have "small T cell clones against a polyclonal background".  My T cells have continued to rise for over a year and my immune system is decreasing over time.  HOWEVER, it is wave-like.  Sometimes my WBC is 14 with 89% T cell lymphocytes.  Other times 10.4 with 96% T cell lymphocytes.  Last labs showed a decrease in percentage of NK cells for the first time... Prior to this lab, the NK cells absolute and percentage have been WNL for over a year.  The onc/hem told me that this would be expected because the T cells are "taking up the room."  (?) 

Also... I am symptomatic (vague symptoms) and have been tested for everything.  "autoimmune markers are normal" but I have tested  false positive with high titers in IgM for CMV and EBV (but not in DNA)  My immune system does not react to pneumovax test -- IgG subtypes are like ...0.03... I think only one of (12?) tested was close to 1 post injection.  I have chronic low grade fever and great fatigue.  I think I did get some wierd viruses a few years ago, plus the second bout of pneumonia about 6 months ago -- BUT neutophils are fine... and WBC are not wild high or wild low (Between 6 and 14) and RBC has been within lower end of normal limits.

 Because you say you have had this for 16 years?  Did I read you right? I am curious.  You must have been one of the first people with the dx as research tells me it was realized in 1993?  (Is that right?)  And T cell rearragment studies are new -- providing difinative dx for patients.  What are your T cell counts?  Have you had any illnesses?  Virus or bacteria infections?  What has been your experience over time?  I see that the expect. rate is >10 and dealth is usually about lack of immune system over time...  

Thank-you ahead, for your time, or any professional as well, in case I have my information wrong...

Yes, sixteen years or more. I was in the Mayo Clinic in 1995 and the doctors there said they had seen the first lgl patient fifteen years before me. At that time my lymphocytes were at 47% neutrophil count at 18, later my lymphocytes went to 72%, three years ago it was at 61%,  I feel that I am getting better with each passing year, using olive leaf extract, c and CoQ10. you have to learn all you can about living healthy and work at it. I have more imformation on lgl at Careplace.read about olive leaf extract on the web. God Bless, Longbow  

still curious.  Did you have T cell rearrangment study -- T and B cell enumeration?  T lymphocyte numbers and percentages are different than lymphocyte percentages.

Are you followed regularly with T and B cell enumeration study and T cell rearrangement study?  How about IgG's?

 For example, my T cell percentages are over 90 % and continue to climb over time -- and last enumeration, the NK B percentage has been affected.  Immunocompromised but have not been in hospital due to bacteria infection or pneumonia though have had staff and pneumonia that was brought under control with 2 - 3 rounds of antibiotics.

 This message is for anyone with dx of T cell LGL.  I have yet to read about this very new studies that confirm the diagnosis. 

 

Additionally, I understand that LGL may or may not run a prdictable course depending on the DNA T cell markers identified in the rearrangement studies... does anyone know or understand this?

 

 Thanks

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