Large Granular Lymphocytic Leukemia

feistygal

Blood tests from my 8 year breast cancer check-up last year revealed an oddity. After a bone marrow biopsy, I was diagnosed with Chronic Large Granular Lymphocytic Leukemia (LGL, a disease of the T-cells. I have only found limited information on this illness on the Internet. To date, I do not have any symptoms and therefore am not receiving any treatment. I think this is a good thing because it buys science more time to learn more about the illness and to discover effective treatments. Of course, so far, there is not cure. I'd like to hear from anyone who has this rare disease or who knows more about it. Thanks.

Feisty Gal
smassman@pdq.net

Unknown

This comment has been removed by the Moderator

saltwater

Hi,I was dx'd with LGL in 93-thru blood and bone marrow.Had/have many sx.Treated with clinical trial(at the time)Chemo plus a couple of old standbys since they did not know how to treat it.Actually I found out about the clinical trial being done by an MD Anderson doctor and my doctor spoke with her.Also developed Rheumatoid Arthritis as a result of the LGL whic does not happen to everyone.Currently LGL is under control-on Methotrexate for RA and seems to help the LGL.Would like to hear from you since we are a rare and few and far between.I was dx'd at age 45.

feistygal

saltwater said:

Hi,I was dx'd with LGL in 93-thru blood and bone marrow.Had/have many sx.Treated with clinical trial(at the time)Chemo plus a couple of old standbys since they did not know how to treat it.Actually I found out about the clinical trial being done by an MD Anderson doctor and my doctor spoke with her.Also developed Rheumatoid Arthritis as a result of the LGL whic does not happen to everyone.Currently LGL is under control-on Methotrexate for RA and seems to help the LGL.Would like to hear from you since we are a rare and few and far between.I was dx'd at age 45.

Hi Saltwater, I sent you a rather lenghty message to the email address you provided. Please look for it. In the meantime, what were your symptoms back in 1993...What are they now? How are you doing now? Please reply. Feisty Gal

corry

feistygal said:

Hi Saltwater, I sent you a rather lenghty message to the email address you provided. Please look for it. In the meantime, what were your symptoms back in 1993...What are they now? How are you doing now? Please reply. Feisty Gal

Hi FeistyGal: I sent you an email thru your ACS address (via your ACS Personal webpage), but didn't hear back, so before giving up, thought I'd try it this way (I'm new at this. I was diagnosed with T-cell LGL in Oct., 03. I also have no symptoms even though my hem/onc. thinks I have had this for 5 yrs based on previous CBCs. I probably wouldn't know now if I hadn't pushed my primary doctor. He kept saying I was just a very little bit low on neutraphils, but everything "looks good". I called my sister who is a med. technologist, and she asked me the percentages. That is when I realized it -- my neuts and lymphs percntage-wise were the reverse of what they should be--and have been for several yrs. These percents are not flagged on blood tests, only absolute counts, so primary physicians think everything looks "fine". Well, a hem/onc ordered flow cym. and confirmed it. Oh how great it was when I didn't know! Ignorance can truly be blissful! Now, I find myself searching constantly for info , and there is so very little. My hem. said there is a good possiblity that I could live a long time and die of old age! I hope he is right! Perhaps we can share the little info out there on lgl. Good luck to you. Corry

codyhaak

corry said:

Hi FeistyGal: I sent you an email thru your ACS address (via your ACS Personal webpage), but didn't hear back, so before giving up, thought I'd try it this way (I'm new at this. I was diagnosed with T-cell LGL in Oct., 03. I also have no symptoms even though my hem/onc. thinks I have had this for 5 yrs based on previous CBCs. I probably wouldn't know now if I hadn't pushed my primary doctor. He kept saying I was just a very little bit low on neutraphils, but everything "looks good". I called my sister who is a med. technologist, and she asked me the percentages. That is when I realized it -- my neuts and lymphs percntage-wise were the reverse of what they should be--and have been for several yrs. These percents are not flagged on blood tests, only absolute counts, so primary physicians think everything looks "fine". Well, a hem/onc ordered flow cym. and confirmed it. Oh how great it was when I didn't know! Ignorance can truly be blissful! Now, I find myself searching constantly for info , and there is so very little. My hem. said there is a good possiblity that I could live a long time and die of old age! I hope he is right! Perhaps we can share the little info out there on lgl. Good luck to you. Corry

I HAVE BEEN TOLD MY BODY IS MAKING ANTIBODIES AGAINST ADULT T-CELL LEUKEMIA. IS THIS ANYTHING LIKE WHAT YOU HAVE? DEBORAH

roxbohn

corry said:

Hi FeistyGal: I sent you an email thru your ACS address (via your ACS Personal webpage), but didn't hear back, so before giving up, thought I'd try it this way (I'm new at this. I was diagnosed with T-cell LGL in Oct., 03. I also have no symptoms even though my hem/onc. thinks I have had this for 5 yrs based on previous CBCs. I probably wouldn't know now if I hadn't pushed my primary doctor. He kept saying I was just a very little bit low on neutraphils, but everything "looks good". I called my sister who is a med. technologist, and she asked me the percentages. That is when I realized it -- my neuts and lymphs percntage-wise were the reverse of what they should be--and have been for several yrs. These percents are not flagged on blood tests, only absolute counts, so primary physicians think everything looks "fine". Well, a hem/onc ordered flow cym. and confirmed it. Oh how great it was when I didn't know! Ignorance can truly be blissful! Now, I find myself searching constantly for info , and there is so very little. My hem. said there is a good possiblity that I could live a long time and die of old age! I hope he is right! Perhaps we can share the little info out there on lgl. Good luck to you. Corry

Corry, my mom was just dxd with LGL; She has just started Cyclosporin and Iron....which is making her feel even sicker;
How are you doing and any web sites or help we should know of? The meds are very costly.
roxanne in calif.

guyute

Hey, I was diagnosed with large granular lymphocytic leukemia about a month ago. I think i have had it for at least 5 yrs. i'm 26 now. I was first diagnosed neutropenic, but after the bone marrow, they figured it out. I am very symptomatic right now, aches all over my body, especially the long bones,(my arms and legs) I feel like I can't stretch enough. Also, extreme fatigue and lethargy. I have no energy. I get skin problems, eczema, psoriasis, dermatitis, and that's when i can usually tell that my neutrophils have dipped even lower. Weakness and dizziness are other symptoms. I have chosen not to take the medications offered by my hemotologist at this time, methotrexate, prednisone, or cyclosporine. they are just very toxic. my little sister has morphea, a form of sclederma and is on methotrexate. it makes her very tired. so being as tired as i am, i don't see how that would help much. It is frustrating, there's not much info out there on it, and i hear, "you don't look like someone with leukemia" from many people. i'm looking into holistic healing with hopes that it may help me. feel free to write with any other questions, but my knowledge is limited too, except for the fact that i just never feel good. i always feel sick, but my blood count is so low, that they don't want to over use the antibiotics. so i go on bedrest for about a week when i am in a bad period. its not too fun, but i guess it could be worse.

corry

roxbohn said:

Corry, my mom was just dxd with LGL; She has just started Cyclosporin and Iron....which is making her feel even sicker;
How are you doing and any web sites or help we should know of? The meds are very costly.
roxanne in calif.

Roxanne, Sorry it took so long to reply, but I had stopped checking on this site because I never received reponses from anyone with this disease--until you! It is so very rare, so few people have it, that is why it is difficlt to find anyone eles with it. I hope you haven't become as frustrated as I. I will check back to see if you respond (since it's been a while that you posted). I was dx nearly a yr. ago, and am doing fine (no treatment), but I do have some info for your mother which she may not yet have. Linda

chronart

corry said:

Roxanne, Sorry it took so long to reply, but I had stopped checking on this site because I never received reponses from anyone with this disease--until you! It is so very rare, so few people have it, that is why it is difficlt to find anyone eles with it. I hope you haven't become as frustrated as I. I will check back to see if you respond (since it's been a while that you posted). I was dx nearly a yr. ago, and am doing fine (no treatment), but I do have some info for your mother which she may not yet have. Linda

Just logging on to this site for the first time. I have LGL Leukemia. Just got defined. Probably had it for three years. Still asymptomatic. Will probably just monitor it until I turn 65 in 6 months, since I have no insurance. With a mean time to death of 10 years in some studies, I can't seem to get to excited/fearful. Blood work still to good to even qualify for the studies going on. This article was useful to me.

http://www.moffitt.usf.edu/pubs/ccj/v5n1/article3.html

Happy Holidays, be well to you all.

Barry Gamble

karen321

HI FEISTY, I WAS ALSO DIAGNOSED WITH LGL T-CELL LEUKEMIA. I AM REALLY GLAD TO FIND OTHER PEOPLE WHO HAVE THIS. I ALSO THINK IVE HAD THIS FOR YEARS. I AM 61 HAVE HAD RA AND LUPAS FOR AT LEAST 15YRS. WHICH MAKES LGL QUITE COMMON. I AM TAKING NEUTOGEN SHOTS ONCE A WEEK AND THIS WEEK I AM START 2SHOTS A WEEK. MY WBC IS 2.2 AND MY PLATLETES ARE .83 WHICH IS QUITE LOW. I HAVE TO BREAK NOW BUT WANTED TO START THIS TO TALK WITH ANYONE WHO CAN SHED SOME LIGHT ON THIS.

mcubedma

karen321 said:

HI FEISTY, I WAS ALSO DIAGNOSED WITH LGL T-CELL LEUKEMIA. I AM REALLY GLAD TO FIND OTHER PEOPLE WHO HAVE THIS. I ALSO THINK IVE HAD THIS FOR YEARS. I AM 61 HAVE HAD RA AND LUPAS FOR AT LEAST 15YRS. WHICH MAKES LGL QUITE COMMON. I AM TAKING NEUTOGEN SHOTS ONCE A WEEK AND THIS WEEK I AM START 2SHOTS A WEEK. MY WBC IS 2.2 AND MY PLATLETES ARE .83 WHICH IS QUITE LOW. I HAVE TO BREAK NOW BUT WANTED TO START THIS TO TALK WITH ANYONE WHO CAN SHED SOME LIGHT ON THIS.

Hi Karen. I was diagnosed last week with LGL. I don't have lupas or RA, but was treated multiple times for Hodgkin's Disease. My RBCs and neutrophils are very low, but they are not treating the LGL yet. I had a shot of araesp for the RBCs, but we're just watching the WBC counts. Is your LGL being treated?

karen321

corry said:

Hi FeistyGal: I sent you an email thru your ACS address (via your ACS Personal webpage), but didn't hear back, so before giving up, thought I'd try it this way (I'm new at this. I was diagnosed with T-cell LGL in Oct., 03. I also have no symptoms even though my hem/onc. thinks I have had this for 5 yrs based on previous CBCs. I probably wouldn't know now if I hadn't pushed my primary doctor. He kept saying I was just a very little bit low on neutraphils, but everything "looks good". I called my sister who is a med. technologist, and she asked me the percentages. That is when I realized it -- my neuts and lymphs percntage-wise were the reverse of what they should be--and have been for several yrs. These percents are not flagged on blood tests, only absolute counts, so primary physicians think everything looks "fine". Well, a hem/onc ordered flow cym. and confirmed it. Oh how great it was when I didn't know! Ignorance can truly be blissful! Now, I find myself searching constantly for info , and there is so very little. My hem. said there is a good possiblity that I could live a long time and die of old age! I hope he is right! Perhaps we can share the little info out there on lgl. Good luck to you. Corry

DEAR CORRY, I WAS DIAGNOSED 3 MONTHS AGO WITH T-CELL LGL. SINCE THEN I HAVE GONE TO TWO SPECIALIST WHO BOTH AGREED WITH FINDINGS AND TREATMENT. I THEN WENT TO HERSHEY PA TO VISIT WITH DR LAUGHRAN WHO IS SUPPOSE TO BE NO 1 IN THE FIELD OF LGL.( IN THE UNITED STATES ) I AM NOW ON HIS LIST FOR CLINICAL TRIALS AND HE ALSO HAS ALL MY RECORDS. I DO NOT BELIEVE IN SITTING BACK AND TAKING THE WORD OF ONE DOCTOR. I DID GET A SECOND AND THIRD OPINION. I AM LUCKY TO HAVE A GOOD INSURANCE. I AM GETTING NOW 2 SHOTS A WEEK OF NEUTROGEN, HOPING TO INCREASE MY WBC AND PLATLETES. SO FAR NO INCREASE. HOPEFULLY TOMORROW WILL BE ANOTHER STORY. WITH EVERY TEST I TAKE AND BLOOD COUNT I GET A COPY TO COMPARE. ANOTHER PATIENT I TALKED TO TOLD ME TO DO THIS AND KEEP A RECORD FOR FUTURE REFERENCE. GOOD LUCK KAREN

Meadow

I was diagnosed with T-cell LGL in 2001 at age 31. I went to a doctor one day because I had a fever and a sore throat that lasted over a week. I thought I would pick up some antibiotics and be on my way. The doctor came back with the results of a quick blood test he performed. His expression was grim. He said that my white blood cell count was over 50,000. Not understanding what he meant, I said, "Yeah...and?" Later, he insisted that I go to the hospital for more tests. My attitude was that I was being inconvenienced ny an overreactive doctor, and I wondered when I would go back to work.

While in the emergency room, I saw a few interns who had the same grim faces when they came with my blood counts. I could not understand what the fuss was about. It wasn't until they decided to admit me into the hospital and they wheeled me passed a sign that said "lukemia Unit" that I realized that I had slipped into a nightmare. After a week of testing, including a bone marrow biopsy, I was diagnosed and sent home.

First I was on Methotrexate, which did nothing. My spleen became larger and larger. My doctor contacted Dr. Loughran, the US expert on the disease. I was going to go see him, but then my doctor contacted Dr. Janik at the National Institutes of Health National Cancer Institute. He is currently conducting a clinical trial for a treatment. At the time I met him, my neutrophil, platelet, and hemoglobin counts were very low. At one time, I was injecting Neupogen every day. My spleen became very large.

Dr. Janik felt that my spleen was perpetuating the disease. I had a splenectomy in 2002. My spleen weighed 5 pounds, when a normal one weighs 10 ounces. Several months after the surgery, my blood counts started to improve. Now my counts are almost normal, and I take no medication. God willing, it will improve some more and stay like that. If anyone has low blood counts because of T-cell LGL, I recommend that you contact Dr. Janik at NIH. I understand he is making very good progress with a new treatment and possible cure.

I learned some interesting facts from Dr. Janik. He told me that T-cell LGL is very rare, and that only about 300 confirmed cased are in the US. Many more people could have T-cell LGL and not know it. There are more cases in parts of Japan and around Chernobyl, Russia than anywhere else in the world. Lastly, when rats become very old, they often develop T-cell LGL. I said to Dr. Janik, "Terrific, I have a very rare old rat disease!"

Fregara

Meadow said:

I was diagnosed with T-cell LGL in 2001 at age 31. I went to a doctor one day because I had a fever and a sore throat that lasted over a week. I thought I would pick up some antibiotics and be on my way. The doctor came back with the results of a quick blood test he performed. His expression was grim. He said that my white blood cell count was over 50,000. Not understanding what he meant, I said, "Yeah...and?" Later, he insisted that I go to the hospital for more tests. My attitude was that I was being inconvenienced ny an overreactive doctor, and I wondered when I would go back to work.

While in the emergency room, I saw a few interns who had the same grim faces when they came with my blood counts. I could not understand what the fuss was about. It wasn't until they decided to admit me into the hospital and they wheeled me passed a sign that said "lukemia Unit" that I realized that I had slipped into a nightmare. After a week of testing, including a bone marrow biopsy, I was diagnosed and sent home.

First I was on Methotrexate, which did nothing. My spleen became larger and larger. My doctor contacted Dr. Loughran, the US expert on the disease. I was going to go see him, but then my doctor contacted Dr. Janik at the National Institutes of Health National Cancer Institute. He is currently conducting a clinical trial for a treatment. At the time I met him, my neutrophil, platelet, and hemoglobin counts were very low. At one time, I was injecting Neupogen every day. My spleen became very large.

Dr. Janik felt that my spleen was perpetuating the disease. I had a splenectomy in 2002. My spleen weighed 5 pounds, when a normal one weighs 10 ounces. Several months after the surgery, my blood counts started to improve. Now my counts are almost normal, and I take no medication. God willing, it will improve some more and stay like that. If anyone has low blood counts because of T-cell LGL, I recommend that you contact Dr. Janik at NIH. I understand he is making very good progress with a new treatment and possible cure.

I learned some interesting facts from Dr. Janik. He told me that T-cell LGL is very rare, and that only about 300 confirmed cased are in the US. Many more people could have T-cell LGL and not know it. There are more cases in parts of Japan and around Chernobyl, Russia than anywhere else in the world. Lastly, when rats become very old, they often develop T-cell LGL. I said to Dr. Janik, "Terrific, I have a very rare old rat disease!"

Hello Meadow. I stumbled upon this website and am not sure how to use it, but will give it a try. My husband was diagnosed with LGL 2 years ago. He is now 32 years old. He was just not feeling well. Had a cold and was not feeling himself so we went to the doctor. They did blood tests and his WBC's and Lymphocytes were elevated. The doctor didnt think anything of it at the time since the elevation could have been since my husband was sick. Anyway, the blood tests were repeated and the levels were still the same. Then I pulled out blood work from previous years and noticed the pattern of elevated WBC's and Lymphocytes. Now my doctor was starting to get concerned. We went to a Hematologist who did Flow Cytometry and took Bone Marrow. He then sent us to NYC to NYU to a Hema. Oncologist. He reviewed my Husbands tests and did some of his own, to find LGL. One unique aspect of my husbands case is that his Natural Killer Cells are affected, not his T-Cells. Through research, (which there is such limited info on the internet) I have learned that LGL involving the NKC's is far more serious then that of T Cells. My doctor told us that my husbands case is not typical since his is doing so great although his NKC'S are involved. Other than these elevations my husbands blood tests are all normal. He does get mouth sores, night sweats, occ. dizzy spells, but other than that he feels great. It is such a horrible feeling knowing he has this, and not knowing when it will become a problem. Currently, since his levels are staying at a constant, and other levels like platelets are not going down, his doctor is not treating him. Basically, we try to forget he even has a problem since dwelling on it can really be upsetting. We now go to SLoan Kettering in NYC. He was going once very 3 months, then once every 6. Now he is up to once a year. Take care of yourself and thank you for sharing your story.

Candycae

Fregara said:

Hello Meadow. I stumbled upon this website and am not sure how to use it, but will give it a try. My husband was diagnosed with LGL 2 years ago. He is now 32 years old. He was just not feeling well. Had a cold and was not feeling himself so we went to the doctor. They did blood tests and his WBC's and Lymphocytes were elevated. The doctor didnt think anything of it at the time since the elevation could have been since my husband was sick. Anyway, the blood tests were repeated and the levels were still the same. Then I pulled out blood work from previous years and noticed the pattern of elevated WBC's and Lymphocytes. Now my doctor was starting to get concerned. We went to a Hematologist who did Flow Cytometry and took Bone Marrow. He then sent us to NYC to NYU to a Hema. Oncologist. He reviewed my Husbands tests and did some of his own, to find LGL. One unique aspect of my husbands case is that his Natural Killer Cells are affected, not his T-Cells. Through research, (which there is such limited info on the internet) I have learned that LGL involving the NKC's is far more serious then that of T Cells. My doctor told us that my husbands case is not typical since his is doing so great although his NKC'S are involved. Other than these elevations my husbands blood tests are all normal. He does get mouth sores, night sweats, occ. dizzy spells, but other than that he feels great. It is such a horrible feeling knowing he has this, and not knowing when it will become a problem. Currently, since his levels are staying at a constant, and other levels like platelets are not going down, his doctor is not treating him. Basically, we try to forget he even has a problem since dwelling on it can really be upsetting. We now go to SLoan Kettering in NYC. He was going once very 3 months, then once every 6. Now he is up to once a year. Take care of yourself and thank you for sharing your story.

I just stumbled on this website by accident just Googling t-cell and LGL. My late husband passed away because of this rare leukemia. In 1993, he kept getting flu like symptoms on and off over a month or so. I finally got him to go to a doctor and when they did his CBC they had him go for a bone marrow biopsy. Before we even got the results back his spleen enlarged to the size of a football and he had an emergency spleenectomy. Parts of his spleen were sent all over the United States to cancer places trying to diagnose what was going on. At first they thought it was something like hairy cell leukemia. After six months it was finally the Mayo Clinic in Rochester, MN, that diagosed it as t-cell lymphroproliferative disorder. The 12th case that was ever diagnosed. At the time, we went through many different chemo treatments and steriod treatments to try to battle the leukemia. We did this for 2-1/2 years before he passed away in 1996 of an ulcer in his deodenum from the heavy steriods he took as a trial treatment. At that time there was no information on this leukemia it was so rare. It's nice to see that others have been able to deal with it and still go on with their lives. To my husband and our two children (7 & 10) at the time it was very devistating.

Unknown

This comment has been removed by the Moderator