LGL T-Cell Leukemia

sunnyd1975 said:

LGL Leukemia
hi, I can unfortunately relate! My husband and I are 35 and he just got diagnosed in February. We have 3 young children, and it's definitely scary to hear the word leukemia!
I hope that 3 yrs later you have gotten some peace with the diagnosis

the 10+ year life span statistic is annoying and vague. I think it's in the context that this disease is "normally" diagnosed at age 60, so people diagnosed at that age live at least another 10 yrs. Although it isn't "curable" it isn't an aggressive form and doesn't generally require aggressive treatment like other forms of leukemia.

Since being diagnosed we've also been frustrated at the rarity of the disease and how it means there's very little useful info available on the internet (that non-doctors can understand) We also haven't found too many people who have it, but I created a group on rareshare.org and have heard from one person so far: http://www.rareshare.org/communities/large-granular-lymphocytic-leukemia/topics. I know it's a nuisance to sign up for lots of websites, but it would be great to form a little community.

-Deirdre

LGL NO MORE
Hi, I had that stuff for sixteen years and was sick all the time, up and down, in and out of hospitals. The doctors and insurance company did nothing for me. I have posted my story before. I used and tried many different herbs and vitamins. Researched alot of information and found what gets rid of this junk. It worked for me and I would like to help others. I take this every day. 3000 mg vitamin c , 200 mg CoQ10, 1500-3000 mg of Olive Leaf Extract. Olive leaf extract is an anti fugal. read about it! I get all this at Swanson Health Products, the product numbers are as listed; sw106, swu561, swh158, Please give it some time. God Bless, Longbow

Superstar said:

Your post struck me, assumably because I'm a mom as well (29 yr. old) of a 2 1/2 yr old with another due in Sept. I feel like there are no great words of wisdom for me to give other than this....please don't ever give up hope! They are coming up with new treatments/options every day it seems. Don't let the statistics be your driving force...keep the flame of hope alive. I don't know what your religious background is but there was a bible verse that I clung to as I was going through my treatments, it's Psalm 91:14-16. If you have time, look it up - it may bring you some comfort. Your in my thoughts...may God bless you and your family.
Kim

I am a 54 yr old mother and grandmother diagnosed this month (May of 2010) with TCell LGL. I learned of this diagnosis after my GP sent me to the hematologist for anemia that could not accounted for. My hematologist did a bone marrow biopsy to confirm. He also took me off of several prescription meds I was on that lower blood cell count. That alone has helped tremendously. I have also gotten very serious about a healthy diet and exercise which is also helping so far. I have a low grade form of this disease/disorder so far. I do not have the lymphoma that so many sites direct me to, and am exceedingly grateful for that. Nor any of the other accompanying autoimmune disorders, such as lupus or rheumatoid arthritis, that can be present with this form of leukemia. I do not require treatment unless or until my condition worsens. My doctor cannot say when that might be but feels I have already had this for at least two years and didn't realize. I'm feeling fortunate to have a lesser evil when it comes to leukemia but am wondering what to expect. Are any of you remaining at this low level form or is treatment inevitable eventually? He said he has treatment options but doesn't want to use them until really necessary because of the potential side effects. He also said there are several new promising treatments, including a possible vaccine in clinical trails. Are you aware of these and how long does it take before they become available? My goal is to be as healthy as possible and hang in there for the vaccine. I'd much appreciate hearing from any of you. This is a puzzling and disturbing diagnosis, especially when I am also in treatment for anxiety disorder and it was the brain chemistry meds he had to change, so much adjustment all around.
Thanks in advance.

bctrissel said:

I am a 54 yr old mother and grandmother diagnosed this month (May of 2010) with TCell LGL. I learned of this diagnosis after my GP sent me to the hematologist for anemia that could not accounted for. My hematologist did a bone marrow biopsy to confirm. He also took me off of several prescription meds I was on that lower blood cell count. That alone has helped tremendously. I have also gotten very serious about a healthy diet and exercise which is also helping so far. I have a low grade form of this disease/disorder so far. I do not have the lymphoma that so many sites direct me to, and am exceedingly grateful for that. Nor any of the other accompanying autoimmune disorders, such as lupus or rheumatoid arthritis, that can be present with this form of leukemia. I do not require treatment unless or until my condition worsens. My doctor cannot say when that might be but feels I have already had this for at least two years and didn't realize. I'm feeling fortunate to have a lesser evil when it comes to leukemia but am wondering what to expect. Are any of you remaining at this low level form or is treatment inevitable eventually? He said he has treatment options but doesn't want to use them until really necessary because of the potential side effects. He also said there are several new promising treatments, including a possible vaccine in clinical trails. Are you aware of these and how long does it take before they become available? My goal is to be as healthy as possible and hang in there for the vaccine. I'd much appreciate hearing from any of you. This is a puzzling and disturbing diagnosis, especially when I am also in treatment for anxiety disorder and it was the brain chemistry meds he had to change, so much adjustment all around.
Thanks in advance.

LGL
just wanted to let you know that i have been dealing with LGL for about 16 years. there are plenty of treatment options, and low-dose treatment is the norm now. i currently take low-dose cyclosporine. i have lived well with this for many years. once you deal with the shock of the diagnosis, you find your way in dealing living with it. some people never have to be treated, or are maintained on a low dose of medication. i have gotten to the point of being grateful that i have this form of leukemia in comparison to much worse diseases.
good luck

doaneman said:

LGL
just wanted to let you know that i have been dealing with LGL for about 16 years. there are plenty of treatment options, and low-dose treatment is the norm now. i currently take low-dose cyclosporine. i have lived well with this for many years. once you deal with the shock of the diagnosis, you find your way in dealing living with it. some people never have to be treated, or are maintained on a low dose of medication. i have gotten to the point of being grateful that i have this form of leukemia in comparison to much worse diseases.
good luck

LGL and CLL together
Hi,

I am replying to your posting since it is the most recent. My Aunt has had
Chronic Lymphocytic Leukemia (CLL) for many years, and lately has been treated for it with chemo, transfustion, etc. Now she has been found to also have large granular lymphocyte (LGL). We are looking for doctors who have treated patients with both diseases, as it is apparently very rare to have both, and her doctor has not seen this before. Her white blood cell count is extremely low at this point, so we need to move fast!

Thanks for any help!

mama c said:

LGL LEUKEMIA
My daughter who is 19 was just diagnosed with t cell lgl leukemia and we have been to see Dr Loughran at the hershey cancer reseacher center. It is very very rare that someone so young could have this disease but she has it. She is not on any medication yet but her neutrophil levels are running borderline low, and her hgb and hct are also low but steady. She attends college and is very determined to keep attending and get her degree, although I dont know how she manages to go to all her classes and study. She eats very health foods whole grain, fruits and veggies not too much meat maybe chicken or turkey occassionally. We are very optomistic about her living a "normal" long full life. She exercises daily and says this really helps her energy level for the day. Does anyone know of any other teenagers with this type of leukemia. I would love to chat with parents of any young adult who has this disease. Also if you havent read the book "The Secret," not sure who the author is, please read it. My daughter and I have both read it and we have a different outlook about the disease and life in general, it is a great great book. Hope to hear from anyone.
MaMa C

Hello mama c. I am 25 and i
Hello mama c. I am 25 and i probably have T-lgl for more than 6 years. I confirmed as an lgl patient this year. I am monitored for about 5 years without a diagnose because that t-cell population would not appear and that situation confused the docs. But i have symptoms: neutropenic less than 500 neutrophils, anemia beetween 27-30 and my lymphocytes are somewhere at 70-78. The symptoms accidently found when in 2006 i went to the hospital with mono(EBV) and i was in very difficult situation. But with 2 blood transfusions and filicine i was just fine. Althought i recovered in 10 days! All the years between 2006-2011(present day) i am living a normal life and sometimes to the edge i could say, as a young man. I finished my studies, i got a job, i went to the army (non optional in my country), i go to the gym almost everyday and i quit smoking this year!!! I have never felt fatigue or exhausted or anything like that. This year i sickenned from H1N1. That was a tought one but with antibiotics and three transfusion i beat it in 6 days. It took me 3 bone marrow exams to find the lgll. First it misdiagnosed as aplastic anemia but really quick docs correct it announced me my lgl leukemia. It didn't shocked me. The case of aplastic anemia shocked me more. I'm gonna live my life as i want till the end of my days. Now i am in treatment with MTX, prednisone and folic acid and i could say except the two days of MTX tha i feel a little nausea the other days i am strong as a horse maybe better than before the treatment. So i say your daughter not to live as a patient of something. She has to live her life normally like nothing happens. If your mind believes that you are sick then... you get sick. Just get monitored 3 or 4 times a year and everything is Ok. Needless to say that i caught the flu all this years more than 10 times and i was recovered in 2 days sometimes less. It's not a bad idea to take a low oral treatment maybe she can put it in remission. I take 20mg/week MTX and 5mg/day presolone with filicine and i feel great. I will see possible results in 3 months from now. So mama c don't worry everything is OK your daughter in 20 years may be healthier than other healthy people. As my forefathrs said a healthy mind in a healthy body (νους υγιής εν σώματι). Keep our lifes in these tracks we will die 100years old. (The only thing that scares me a little is RA that i haven't at least yet. But my mother, my aunt and grandmother have it).

mama c said:

LGL leukemia
Hi MKlein,

MY daughter just had her latest blood work done HGB up to 10now HCT 30 her neutraphils have been 400 for the past 3 months but no infections. Lymphocytes are 85. The H1N1 vacine she got was the shot and its not live, if you want to look into it. I was wondering about the neulasta shots, how much did they increase his ANC? Do his Lymphocyte levels fluctuate al all, my daughters are anywhere between 70 and 95. When I talked to the specialist last year and he had mentioned methotrexate he talked about the oral tabs taking so many once a week, is the shot a better deal? Im thinking of taking her to your sons MD this summer for a second opinion, it seems our MD doesnt want to see her unless things get bad. she just turned 20 in Dec and even though she was diagnosed with this in dec of 2008 she actually has had it since 2004 after looking at some bloodwork from that summer, of course no one picked up on it, pediatrician didnt even know about the high (89) lymphocytes until I showed him the blood work back in jan 09. What do they look at???????? Thank godness for the internet and parents like us who question doctors diagnosis,when things dont seem right. Take care-- Its cold here in upstate NY!!

Mama C

LGL Doctor
Hi Mama C. I noticed you live in upstate NY and this is an old post but I wanted to touch base with you to see if you have gotten any good medical care for your daughter. My husband was just diagnosed with LGL. We wanted more answers then his Hematologist could answer. I called the leukemia society and asked if there is any experts in this disease. There is one in the country....in hershey penn. His name is Dr. Thomas Loughran. His # is 717-531-4034. He practices at the Penn State Hershey Cancer Institute. Probably every medical based article you have read he has written. He is a great guy to talk to and was the Dr. who discovered LGL. He is doing lots of research and also has a national registry for LGL. I'm not sure where in upstate NY you are but we are in Ithaca. It was 3.5 hrs. and was worth the trip! Good luck, Robin

Trying to reach out to others with T-Cell LGL

Hello,

I have recently been diagnosed with T-Cell LGL Leukemia, a very rare type of blood cancer.  LGL - Large Granular Lymphocytic.  Resources are limited still but have been able to consult with Dr. Thomas Loughran. It's the patient support network on this condition that I'm trying to reach out to so that I can talk to others who are in the same boat. 

Regards.

TrueTiger said:

Trying to reach out to others with T-Cell LGL

Hello,

I have recently been diagnosed with T-Cell LGL Leukemia, a very rare type of blood cancer.  LGL - Large Granular Lymphocytic.  Resources are limited still but have been able to consult with Dr. Thomas Loughran. It's the patient support network on this condition that I'm trying to reach out to so that I can talk to others who are in the same boat. 

Regards.

T-cell LGL Leukemia

True Tiger, you were diagnosed a few months before I was - even though I had gone through test after test with another doctor and hospital.  I had been given an ultrasound, bone marrow biopsy and dozens of other tests.  No one could figure out what actually was wrong until I went to WVU Cancer Center.  I have a wonderful doctor that is working with Dr. Loughran.  My doctor was really enthused about the dianosis, as it is so rare.  I want to say I feel privileged to be among the few but it scares the hell out of me even though the life expectancy is 10 years.  I was diagnosed in late February.  I don't know where you are located but stay with Dr. Loughran.  I have been on an antiviral, antibiotic, steroid and Methotrexate since March.  My dr. finally took me off the antibiotic and steroid.  I had lost quite a bit of weight before but after starting the steroid, gained like crazy.  Hang in there.  There are a few of us in the same boat.  Sorry I just saw your post today. 

Regards.

 

 

jbacchi said:

I have had T- Cell LGL since 1994

I heard about Dr. Loughran way back in the 1990's my doctor at the time read his article on the disorder and put me on low dose methotrexate.  I never went to see Dr. Loughran but, I am now considering it.  It seems that after 16 years of being heathly.  My hemoglobin is dropping (currently 8.6 - it was 12 for years and years!)  My concern is what insurance does Dr. Loughran take.  I have United HealthCare.  Does anyone know if he takes this and how long does it take to get a consultation with him.  

 

I would appreciate all the advice I can get. 

Thanks so much,

Josie

Hi Everyone!

Actually I noticed that most posts on here are old!  Is anyone really out there?  I just had my bone marrow and going in for results on 9/5.  Would like to hear from you.  Terry

Terrymcharg said:

Hi Everyone!

Actually I noticed that most posts on here are old!  Is anyone really out there?  I just had my bone marrow and going in for results on 9/5.  Would like to hear from you.  Terry

in treatment, LGL

Terry - how did it go? 

My husband has had LGL Leukemia diagnosed since Dec 2011.  He just started Campath - as other treatments had only minimal results.  We are in Columbus OH at The James at OSU.  The best. 

I'd love to communicate with you.  Here if you need to chat. 

Amy