Large Granular Lymphocyte Leukemia Member Introductions

Please take a moment to introduce yourself to the community. Everyone here has something to share about Large Granular Lymphocyte Leukemia. For the discussion boards, we ask that you keep your full name and location private.

I just got diagnosed yesterday at Dana-Farber and am interested in natural/Chinese herbs to get my blood counts back to normal.

My husband was diagnosed in February 07 with T-Cell LGL. Currently, trying to keep the platlets up with different treatments; such as ivig, predisone and now winrhoe.

Hi, I’m Jim, live in Florida, am 64, and have LGL and PRCA. My illness seems to be in remission and my wife and I are vert thankful.

I am a 38 year old mother of 4. i was diagnosed with LGLL in January 2007. I am on the “watch and wait” at this time. I also see Dr. Loughran in PA and Dr. Janik at the NIH NCI in Bethesda, MD on a semi-annual basis.

I was diagonosed with LGL Leukemia in Feb of 2006. I suffer from Neutropenia, anemia, and low plaelets.

I’m 77 years old and my main sympton is low white cells and therefore a low immune system. I’ve tried all the protocols for over 6 years, been hospitalized 3 times with neutrophils in only double digits. I have excellent Dr (MD/PHD), and he keeps changing dosages and mixtures and for the past three months, my numbers are almost normal and only take 5mg prednisone plus some Indian Herbs I’ve discovered myself. Who knows.

I was diagnosed with LGLL in Jan 2007. Would like to learn more about this leukemia and share knowledge and experiences with others.

I was diagnosed with LGLL in March 2005. Since then, I’ve been in a state of limbo. I am a combat veteran and receive care at the VA. The VA oncologist (students at UC Davis) don’t have a clue about this disease, and merely do blood tests; I get frustrated because by these simple tests they don’t see anything substantial in my blood. They conclude that I’m fine. I know that they must do a blood smear under a microscope for peripheral clonal rearrangement, but they don’t want to pursue the issue. So, I discontinued the appts., and now I just gave up trying to get a handle on this disease. I don’t know if I have LGLL or not. My simple blood tests show that I have somewhat low white cell counts, and other test results that are similar to the original diagnostic tests in 1995. However, I have quit trying to search for an answer since the VA is my only health care choice, and they are unwilling or not skilled enough to understand this disease. I’m very frustrated.

I’ve been diagnosed for about 2 years and came across this site. I’m feeling good, but since there is so little information available want to see what others have to say.

Family member with the condition

My daughter has this condition. Just trying to find out as much as possible about others that have it to help her.

I have been diagnosed with lgl leukemia and have failed a four month trial on methotrexate. I am beginng treatment with cytoxan (cyclophasphamide) and would appreciate comments on how well this drug is tolerated.

Just wanting to pop in and see what this place is all about…

I’m Dave. I was just diagnosed with LGL Leukemia in March. I want to read about treatments that are working for others with this disease.

I have LGL and it does not effect me in any way besides low blood counts. I am 33 and a school teacher.

Diagnosed with T cell LGL Leukemia on 6/15/07. I’m interested in the experiences (physical problems,treatments,etc.) of others with this condition. I would like to know how having this type of illness affects the lives of those inflicted with it and how they cope. I want to learn from others and hope that I may be able to contribute a little something on occasion to give help to those that need it.

Im 40 years old en Im diagnosed 2 years ago with LGL leukemia. Im interested in new treatments en everything about this disease

Diagnosed with LGL in December 2006. On a w/w protocol. joined Yahoo group, wanted to give this a try.

Hello All,

I wanted to share my story with all of you and ask for your help (and/or advice) if you care to support my charity event.

I am running my first 1/2 Marathon (possibly full, still deciding), with Team in Training, which is the Leukemia and Lymphoma Society’s fund raising organization. I need to raise a minimum of $4100 before October, which will go directly to The Society for research and family support. So far, I’ve raised about $2100, which is great but I still have 1/2 to go. I’d love to go beyond the minimum of course!

I decided to join the Team after going through a very stressful period in my life. (my ex-husband decided after six months married he made a mistake and wanted to be with another person). I had to start over and really needed a focus and something where I felt I could give back somehow. So far it has been an extremely rewarding experience. Of course, it’s been difficult to raise the money, and the running is getting intense (10 miles on the weekends currently), but I have met some really amazing people and feel healthier and happier (mentally and physically) than I was when I initially signed up. However, I also realize that my struggles with training and fund-raising isn’t even close to the struggles that the individuals who are struggling/or have struggled with Leukemia and Lymphoma are experiencing.

If anyone cares to donate or has any good ideas to help me with my fund raising I would love to hear from you. Here is my website for fund raising as well as a link (on that site) to my training journal.

It’s nice to meet you all. :slight_smile: