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What is the life expectancy when diagnosed at age 39 with Chronic T-cell LGL leukemia. I am on prednisone but have severe fatigue, headaches, ongoing infections, and have sizures as well. Also is there any research programs for this type of lukemia? thanks Rob D

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Rob - My husband was diagnosed with this disease in January of 2004. He was told then that the average life expectancy is around 12 years, longer if you are younger at the onset of the disease. He was 54 at the time and conisdered to be on the young side.

The foremost expert in the world on this disease is the director of cancer at the Milton Hershey Cancer Center in Hershey, PA. His name is Dr. Thomas Loughren, and even though our oncologist is with Jefferson University Hospital in Philadelphia, my husband's treatment is guided by Dr. Loughren.

My husband also experiences extreme fatigue and joint and muscle aches. He has been on and off prednisone and is not a big fan of it. He is on medication now to supress the disease which in turn supresses his immune system. So a small cold that I can fight in 2-3 days can land hin in the hospital.

If you can find a way to get to Dr. Loughren, you will be in good hands. God Bless
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Rob - My husband was diagnosed with this disease in January of 2004. He was told then that the average life expectancy is around 12 years, longer if you are younger at the onset of the disease. He was 54 at the time and conisdered to be on the young side.

The foremost expert in the world on this disease is the director of cancer at the Milton Hershey Cancer Center in Hershey, PA. His name is Dr. Thomas Loughren, and even though our oncologist is with Jefferson University Hospital in Philadelphia, my husband's treatment is guided by Dr. Loughren.

My husband also experiences extreme fatigue and joint and muscle aches. He has been on and off prednisone and is not a big fan of it. He is on medication now to supress the disease which in turn supresses his immune system. So a small cold that I can fight in 2-3 days can land hin in the hospital.

If you can find a way to get to Dr. Loughren, you will be in good hands. God Blessc
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My husband and I just found this thread today. My husband was diagnosed with LGL leukemia (at age 34) in the fall and we've been able to find very little information about it. We also haven't found too many people who have it, but I created a group on and have heard from one person so far I know it's a nuisance to sign up for lots of websites, but it would be great to form a little community. I'm trying to e-mail anyone I come across with LGL leukemia whose address is listed.

Deirdre
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I was diagnosed with Aplastic Anemia in 2004, the Large Granular Lymphocytic Leukamemia in 2007.  I have had ATG, and Cyclosporine.  I was in remission for about three years, and now am both red cell and platelet transfusion dependent.  My doctor tells me he has nothing left to try, except Purine analogs.  I would like to hear from those who have been treated for LGL.
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did you ever form the little community? I was diagnosed with LGL at the age of 28. I ve been told I have one of the most aggresive cases ever seen of LGL. However I am in perfectly good shape. Just recenlty competed in an ironman triathlon. The tricky thing for my case is whats goin got happen down the road. I have been on immuran, cyclosporin, IVIG, rutxin, methotrex... u name it. Right now I get shots of Nplate and transfusions. I have recenlty been to my third doctor and he is looking at a different approach. He has told me we need to attck the LGL or we are going to have serious issues in the future.
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I have always read the discusions but never actually replied. I finally joined and am telling my story. I was 27 and in the best shape of my life. I was getting super tired all of the time and then started getting bruises all over my body. I suffered what I later found out was a hematoma. They took a bllodtest and sent me right to the ER. My platlet count was 5K. They gave me a bunch of prednisone, IVIG and then Ratuxin. Nothing worked. So we continued on the prednisone. After about a month my doctor advised I see someone else. I then went to U of C. For about a year my doctor called my illness an autoimmune dasiese. Over that year they tried Whinro, and every autoimmune suppresant in the book. I got caterax from the 120 mg of prednisone I was on for over a year. (That pissed me off) One day during a transfusion my wife was grilling the doctor and in conversation he says, Doug (thats me) has LGL Leukemia. My wife almost beat the sh*t out of the doctor. Since then I have been told by my current doctor that this is something I will have to deal with for the rest of my life. I get nplate shots and transfusions frequently. I recenly decided to make another move and see another doctor. this doctor was shocked at how many transfusions I have had and how much nplate I get. I now am working on a plan with this doctor to come up a different approach. My new doctor has told me my bodu will never hold up if we continue to try and stop the bleeding of a severed artery with a bandaid. So that is where I am today. September 14th was 4 year anniversary of all this. Let me know if I can provide anyone with any info and please help me with any insight as well. 
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My mother was diagnosed with Large Grandular Lymphocyte Leukemia about 9 years ago. She is now 75 years old. She said her doctor told her that there were only 3 people in the world with this rare leukemia. Since this is such a rare form of cancer, there have not been many studies done.
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I have a 5 year degree in LGL. I recently had my spleen removed to slow down the destruction of my platlets. Let me know if I can answer any questions.  ***this post is edited by moderator *** *** private e-mails not allowed*** Please read our Terms of Use

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I also have t- LGL. I was diagnosed about 8 months ago during a pre-op-64 years old. I experience fatigue, headaches and years of weird aches and pains. I am not on treatment yet. Do all of you know about the Penn State registry for LGL?
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i have had lgl for over 20 years and still plodding on im now 48 years old from uk..

 ***Post is edited by moderator *** Private e-mails not allowed***Please read our Terms of Use

my name is antony

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Hi Antony,

I'm newly diagnosed with LGL leukemia. Going through the initial phases of treatment here in the US. Due to limited information available on LGL topics, I have just formed a "closed" facebook support group on LGL and actively recruiting relevant patients, caregivers and family members. The whole idea is to help us all out here in anyway possible. Please consider joining about the only group of its kind on FB. Looks like I can't post anything specific here but a search on FB for LGL will lead anyone right to the group. Thank you so much for your consideration and input!
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Hello dloizzo,

I have been looking for such message board on LGL for weeks now since having been diagnosed with it recently and finding very little information out there. I have observed other leukemia facebook groups, i.e. CLL, CML, ALL, etc...but nothing on LGL and that's a very sad situation for us patients who suffer from this rare disease. Information is power and that's why I have created a "closed" group on facebook to help patients come together and share their experiences, feelings or learn about the disease and treatment options. Would you please please consider joining the friendly and helpful group on facebook that is aimed to help out each of us in various capacity? My understanding is that I can't put anything specific on the group or my email address here...I just joined this site - but a search on facebook for LGL will lead right to the new group. We could really use such patients whether experienced or otherwise on LGL topics like yourself. Please understand that this is a genuine attempt and I have nothing in it more than the desire to learn more about LGL for myself and help others do the same in similar situation. I have also just consulted with Dr. Loughran myself. Such a humble human being...Thank you so much in advance!
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Hi sschwartz,

First of all, I apologize that I'm repeating the same message that I wrote to a couple of folks here already. The goal and the message is one and the same.

I have been looking for such message board on LGL for weeks now since having been diagnosed with it recently and finding very little information out there. I have observed other leukemia facebook groups, i.e. CLL, CML, ALL, etc...but nothing on LGL and that's a very sad situation for us patients who suffer from this rare disease. Information is power and that's why I have created a "closed" group on facebook to help patients come together and share their experiences, feelings or learn about the disease and treatment options. Would you please please consider joining the friendly and helpful group on facebook that is aimed to help out each of us in various capacity? My understanding is that I can't put anything specific on the group or my email address here...I just joined this site - but a search on facebook for LGL will lead right to the new group. We could really use such patients whether experienced or otherwise on LGL topics like yourself. Please understand that this is a genuine attempt and I have nothing in it more than the desire to learn more about LGL for myself and help others do the same in similar situation. I have also just consulted with Dr. Loughran myself. Such a humble human being...Thank you so much in advance!
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First of all, I apologize that I'm repeating the same message that I wrote to a couple of folks here already. The goal and the message is one and the same.

I have been looking for such message board on LGL for weeks now since having been diagnosed with it recently and finding very little information out there. I have observed other leukemia facebook groups, i.e. CLL, CML, ALL, etc...but nothing on LGL and that's a very sad situation for us patients who suffer from this rare disease. Information is power and that's why I have created a "closed" group on facebook to help patients come together and share their experiences, feelings or learn about the disease and treatment options. Would you please please consider joining the friendly and helpful group on facebook that is aimed to help out each of us in various capacity? My understanding is that I can't put anything specific on the group or my email address here...I just joined this site - but a search on facebook for LGL will lead right to the new group. We could really use such patients whether experienced or otherwise on LGL topics like yourself. Please understand that this is a genuine attempt and I have nothing in it more than the desire to learn more about LGL for myself and help others do the same in similar situation. I have also just consulted with Dr. Loughran myself. Such a humble human being...Thank you so much in advance!
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