Since the "hello" thread contains so many different pieces of info now, I thought I'd separate out the introduction. :) Most useful information would include first name, where you live, and age. You may also want to include how long you've had LGL leukemia, your occupation, and what led you to this website.

and I'll kick it off - my name is Deirdre. I am here because my husband was diagnosed with LGL leukemia in February 2010. We live in Southern California now, but we are "originally" from New England. We're both 35 and have 3 little kids (age 3, 4.5, and 6). I started this community on rareshare because when we first got the diagnosis I was really frustrated with how little information was out there that I could understand. Any message boards I found had posts that were years old, and I was hoping to find some other people to compare notes with. My husband was diagnosed with LGL leukemia when they were looking for an explanation for his very low white blood count they stumbled on when he was diagnosed with Rheumatoid Arthritis and Felty's Syndrome in the Fall of 2009. Although the white blood counts returned to "normal" within a few months, they did a bone marrow biopsy, and that showed a small number of large granular lymphocytes. -Deirdre

My name is Nicole & my husband, age 33, was diagnosed with LGL in March 2010. We are originally from Southern California, but currently reside in Michigan. We have a toddler and another child on the way. I am thankful to Deidre for starting this discussion group because it seems to be the most current online & I am particularly interested in participating since many members are in the same (rare) age group as my husband.

My name is Mary and my daughter was diagnosed dec of 2008 she is 20 yrs old now we live in upstate NY although she goes to college 3 hrs away from home. She was eventually diagnosed by a 2nd hematologist/ oncologist after 2 misdiagnoses.Her original blood work showed low HGB/HCT real low neutriphils and elevated Lynphocytes. Mama C-- Mary

My name is Sharon and I was diagnosed with LGL in Feb 2010. It took 8 weeks to diagnose me. I am in country Victoria, Australia. Three hours north of Melbourne. I have an 11 year old daughter, a husband who is wonderful and supportive. We only married May last year. I also have two step children from my husbands previous marriage. They are 17 and 21. The 21 lives with us now (as of last week) I am a nurse, majoring in child health and midwifery. However, I don't do alot of nursing now and work in the family business. Fortunately this makes things far more flexible re doctors visits etc. Sharon

My name is Michelle, I was diagnosed with LGL last May 12th-it took over a year to diagnosis me. I live in NH with my husband and we have been married 9 years. We have no children but three cats! I come from a big family so they keep me pretty busy. I work at an anti-poverty agency helping children build literacy skills and I am attending school part-time to get my masters. I only work part-time as full-time was just too much for me. Sarasota-Michelle

My name is Elissa. My 76-year old mother (who lives in Los Angeles) was recently diagnosed with T-cell LGLL. She had hemolytic anemia for a number of years, then was diagnosed with myelodysplasia last fall and then this year with T-cell LGLL. I don't know that those other diagnoses are misdiagnoses; my sense was that they aren't mutually exclusive and that she has all of those disorders. The hemolytic anemia kills red blood cells too fast and my "lay" reading of what has happened is that her bone marrow is wearing out and that the need for her body to produce so many cells led something to mutate, leading to the LGLL.

BassetLover- Sorry to hear about your mother-I am sure that must be hard to hear. Since I have had T-Cell LGL I have been anemic-it is amazing how all of things are interconnected. 76 is a common age to get diagnosed with LGL and T-Cell is one of the slower kinds. What happens is there are different kinds of white cells-good and bad-and in T-Cell LGL- the body makes too many of the bad kind. I hope that your mother is feeling okay! Good Luck!

Thank you Sarasotap. I wish my mother were feeling ok. She had cellulitis in February and while in the hospital lost her ability to walk (really, her ability to stand up on her own...when she is helped up, she can stand for a bit and take a few steps with a walker)...probably in significant part because of "steroid myopathy" resulting from large doses of prednisone which weakened her leg muscles. I had a similar reaction to being on high doses of prednisone when I was hospitalized ten years ago--completely lost the ability of my quadriceps muscles to help me rise. But I was still in my 30s then and once the dosage was lowered I recovered. My mom has been living in a rehab center since Feb, and for the past week was hospitalized because of a urinary tract infection that got out of hand and put her in severe sepsis. She is doing better now, but I worry because while in hospital, she has had three transfusions and feels much better after those. At the rehab, she only goes out to the medical center for transfusions once a week and she gets too weak to want to do her rehab. She's on Cyclosporine and we're hoping that kicks in soon to help her be able to go longer between transfusions.

I live in Los Angeles and was diagnosed in 1998 No children. Married. Two dogs. Would be interested in hearing if there are any heme onc doctors you would recommend at NIH or UCLA/USC/city of hope

bassetlover and stonesc, please see the "specialists in LGL leukemia" thread for the contact info for a UCLA doctor: Dr. Ron Paquette recommended by Dr. Thomas Loughran

DDixon, thanks, I'll look for that. My mother is being treated at UCLA by another member of the hematology/oncology group.

Hi, my name is Karen, and I live in San Diego. I'm 40, and was diagnosed in 2008, and like others here my doctors say the disease process may have actually started 5-10 years prior to that - after reading other posts there seem to be quite a few of us who were diagnosed at a younger age than the norm. I found Dr. Loughran after an on-line search for information, and after writing him for a west coast referral, went to see Dr. Paquette at UCLA. I've seen Dr. P, and he reviewed my pathology report & drew blood to send to Dr. L for the "Tumor Bank", but he really didn't offer me much more insight into the disease, possible treatments or understanding of my symptoms than the young oncologist that originally diagnosed me in San Diego. I got more information from Dr. Deloukina at the City of Hope - I see her once a year in the hopes of being connected to source of cutting edge medicine, although LGL Leukemia is not a specialty there. I'm currently being followed every 3 months by Dr. Alan Saven at Scripps Green Hospital in La Jolla. He's told me that he has 7 other patients with LGL and is in regular communication with Dr. Loughran. In fact, he said he flew one of his patients out to see Dr. L for treatment. I am happy to have found this forum, and will share the information I've learned, and my personal story on the appropriate threads.

Hello! I am Susan, 45 years old, married with a 6 year old daughter, and diagnosed with T-cell LGL leukemia April 2005. I didn't think my CBC looked right when I was treated for an infection after having my baby, and finally got up the nerve to see a new internal med doc to see if my nutrition training was on track. The doc was methodical and curious and in a few months (after a few more infections) I was sitting in the oncology clinic with sweaty palms. The diagnosis process was chaotic (the nurse told me on the phone, and said it was good news, I just needed to wash my hands and see the doc in 3 weeks!). But with so few answers, I was lucky to get great second and third opinions. Mayo has an expert too! Looking back, I'm glad I didn't get diagnosed when I had a new-born at home. And, all in all, it was good news compared to the many other possibilities. That doesn't make it fun though, does it!

welcome Karen and Susan, can't believe we have 18 members now! Karen, I'm amazed that your San Diego doctor has 7 patients, sounds like you at least lucked out in that respect. Susan, I totally know what you mean - we'd rather that my husband not have LGL leukemia, but compared to most of the other leukemias, we consider ourselves very lucky. Most people we tell freak out on us, assuming that "leukemia" always means aggressive treatment and months or years left to live. -Deirdre

I'm Karen from New Zealand, and my youngest son has just been diagnosed with T-LGL chronic leukemia at age 24. He is in Auckland, where there are only 2-3 people with this illness. Since the end of March 2010, the blood tests, 2 bone marrow biopsies, and CT scan have led to this diagnosis. To start with, the haematologists thought his was the Natural Killer (NK) Cell type, but now the markers indicate T Cell. It is a great shock hearing the term chronic leukemia for the first time. Until last week it was called a chronic lymphproliferative disorder (of the NK Cell type), so we are gradually taking it all in as best we can, not to mention my son. Although he feels well and is able to work full time at his job as an advertising coordinator, he has low platelets and neutrophils, and needs transfusions every 8-10 days to boost haemoglobin to a tolerable level. Thankfully, treatment finally starts this week after he banks some sperm: a low dose chemo (Methotrexate) plus Prednisone, which appears to be an established way to treat this rare disease from my internet research. I am grateful to find this group, read all your messages and feel a sense of hope. -Karen

Karen- I am glad that you have found this group...it has been a wealth of information & hope for us as well. You can read about my husband's diagnosis above & in other discussions, but I wanted to let you know that after some time of initial devastation, we were relieved to find out from the nation's expert that this condition, although chronic, is treatable and at a very high success rate. I pray your son responds well & continues to gain hope for a long future! -Nicole

I'm Wendy from British Columbia, Canada. My son (27 yrs old) was just diagnosed with T-Cell LGL in May 2010 after spending almost a year & a half trying to figure out what was wrong with him. He had low blood counts and enlarged spleen. He has had more blood tests then you can count, three bone marrow tests, scans, xrays, ect. In Canada we have an insurance program called Best Doctors, where you can send medical results and they will review and give opinions. T-cell LGL was one of the possibilities but it did not shown up on any blood/marrow tests. He had his spleen removed in April (it had been enlarged the whole time) and it was through that pathology they diagnosed T-Cell LGL. We have requested another opinion as I have read removing the spleen can trigger higher LGL counts. My son does not have RA and while he does have to go for blood tests every month, he is on no medication. He feels great, he works, is back playing hockey (couldn't play with engorged spleen), running and pretty much doing whatever he wants. Still, Leukemia is such an ugly word.

Thanks for your kind words, nlbl. And Wendy B, your son is really young like mine. Wow, 18 months to diagnose..... My son's CT scan in May showed his spleen enlarged by about 20%, and his liver a bit too, but that was what his haematologist expected and no talk of removing his spleen. He does not have RA either, but is on Methotrexate and Prednisone (has been for 2 weeks now, thankfully so far without any side effects). Like your son, mine feels pretty well and you would never know all this is going on from looking at him. He's just joined a tennis club again and works full time....just getting on with his life. But you are right, now knowing he has chronic leukemia is very scary. -Take care everyone, Karen

My name is Laurie, age 59 and I live in Dallas, Texas. I was diagnosed with T-LGL about 3 weeks ago after a year of infections and severe neutropenia. My oncologist here in Dallas treated the neutropenia with IVIg infusions which seemed to work, although the response was measured in weeks rather than the expected days. Neupogen shots had no effect. My neutropenia would cycle up and down over a span of several months - very low (.3) to normal range, then drop again. Other than the infections, the only sympton I had was severe and prolonged fatigue after the IVig infusions. After 3 cycles, the oncologist referred me to MD Anderson Cancer Center in Houston. The doctor there has diagnosed T-LGL, although he hasn't completely ruled out aplastic anemia. He has put me on a regimen of Cipro and Difluxan to control bacterial and fungal infections and Cyclosporine(modified) for treatment of the cancer itself. I go back to see him in two weeks and will get a chance to ask all the questions I didn't know enough to ask last time.

Hi everyone, my name is Alex from Milwaukee, Wisconsin. I am 23 years old. I was given my diagnosis of T-LGL today (July 12), though I suspected that I had this disease for about a year. Currently, I have an enlarged spleen, moderate fatigue, and Rheumatoid-like symptoms. My cell counts are considered "good" at this stage, with only mild neutropenia and T-cell counts around 7300. I am a PhD student studying plant molecular genetics and hormone biochemistry. I'm still not sure what my diagnosis means, or how long I will live, but my spirits are high. I am a scientist and I know that amazing progress can be made in a short period of time. The nature of my career lets me "keep and ear to the ground" in terms of the primary literature out there regarding cancer treatments as well as more information about T-LGL. I will happily post the things I find on this community board if no one else has done so already.

My name is Jessica, My mom was diagnosed about a lil over a year agop. I am 28 and she is 50. It is so hard for me to come to the realization that my mom has cancer. It has been hard watching my mom get weaker and sick and tired and upset all the time. She used to be the most upbeat person. Now she can't work. She is tired a lot and doesnt feel good. The docs said last week that it has gotten a little worse. She currently now is being weened off her meds so she can go to hersheyy cancer center at penn state. I wish there was something I can do for her. Does anyone know if I can give her some of my stem cells or bone marrow? I can't find anywhere to look up that info. And I have no one to talk to about this that knows what it is like. Thanks and I hope everyone and their loved ones are doing better.

Jessica, so sorry about your mother. Sometimes I think it is harder for the people around the patient than for the patient herself. My oncologist did suggest the possibility of a bone marrow transplant at some time in the future. If and when depends on the development of the disease. As I understand it, the process involves heavy chemotherapy at first to kill the cancer cells, then the transplant to replace them with healthy cells. Of course, this depends on finding a suitable donor. If your doctor doesn't mention it, I would certainly ask about it.

welcome Wendy, Karen, Laurie, Alex, and Jessica! It's amazing to me that there are almost 30 of us now, sad that any of us have a reason to be here, but glad that we have each other for support! Jessica, I'm sorry to hear LGL has been so hard on you and your mom. It is certainly a rude shock to get a diagnosis of Cancer, even if it turns out LGL Leukemia isn't as awful as many other forms. As I understand it, treatment for this disease entails using various meds to bring up the neutrophils, meds to reduce the number of large granular lymphocytes, and meds that prevent infection because the immune response is compromised. not sure which does which, but Methotrexate and Prednisone are really common treatments when treatment is necessary. I haven't heard of the use of bone marrow transplants or stem cells for this cancer, but certainly ask her doctor when you get a chance. Does your mom have other diseases that complicate her treatment or symptoms? Other blood disorders and autoimmune disorders seem to commonly occur alongside LGL leukemia. I assume when you say Hershey you mean Dr. Loughlan, who is the respected expert on LGL leukemia. I hope he can suggest some alternate treatments that will help your mom get her disease under control and give her relief from symptoms. I also hope whichever doctor ends up being your mom's primary oncologist is taking every symptom seriously. Symptoms like fatigue and depression can have a really serious effect on quality of life but are so often dismissed as being unimportant, which is extra frustrating for those suffering. -Deirdre

Hi everyone. My name is Pat and I am 62. I was diagnosed 10 yrs ago after being told I was anemic for 4 years. I contracted a cold and became extremely ill which finally prompted my doctor to look for other causes of the anemia. The oncologist was so rattled by the test results he called me and gave me the diagnosis while I was driving home in rush hour traffic. Other than having to be very careful about getting infections I have been healthy for 10 yrs and have not required any treatment for the LGL. It is interesting that in 2002 when I was diagnosed I was told there were only 5 known cases in the US.

Hi Pat, it is nice to hear that for 10 years you have required no treatment. Do you mind if I ask if you have Rheumatoid arthritis?

Hi Wendy, I do not have Rheumatoid Arthritis. I do experience fatigue and some weakness but at 62 I am not sure I can blame that on the LGL.

Thanks Pat. I am only 50 and experience fatigue and some weakness and I don't have LGL :D I have not told my son about this site as I worry that he will read things and start to take on some of the symptons even though they may not be real for him. So far it seems it is the RA that is the worst of it and my son does not have that. He has just put the diagnosis aside and is living life so glad to hear that he may continue to be able to do that for many years to come. Cheers, Wendy

LOL yes I suspect any of the things I am experiencing are old age related (it is so rude). I am glad to hear he is doing well. It took me a couple of years to get past the feeling of fear. Now I just live me life, stay out of crowded places and eat a good diet. I hope everything continues to go well for him

My Gosh, I have been away for a couple of months (enjoying a holiday with my mother and daughter in the UK) I come back and check on things here and look at all the new people we have on board. I too am sorry they are here, but I am so please that we have been able to form some source of support. When we first started out there was so little information and no one to talk to. I welcome each and everyone of you!! After my holiday, I visited my specialist and for the first time I have started to respond to the methotrexate. thankgoodness. I still feel tired on some occasions, but I just adjust my activitiy levels accordingly. Take care everyone Sharon

Greetings and Good Morning, My Name is Christian, I am 34 and have been feeling ill for 4 yrs now. after 4 bone marrow biopsies and splenectomy and every other test you can think of they have only come with a Hypergammaglobulinemia (chronic inflammation) but after the latest bmb they said there was an outside possibility of T cell LGL and sent me to the MAYO Clinic in April for a tcr gene rearrangement, after staying at MAyo for a week the Dr there said My tcr test came back positive for LGL and that I may have had LGL but at the time of the visit i did not because my white blood count was just hovering on the lower end of normal. anyway my dr's here in Denver are having do a methotrexate treatment and so far 2 months into it I am feeling no better and the cbc blood panels are coming back the same. After MAyo visit i was unsure so I emailed Dr Loughran all my records and he concurred with MAyo and advised me to come visit him for further tests but unfortunately i cannot afford to make the trip just yet.

Hello... my husband has LGL. He was diagnosed about 5 years ago. He is now 54 years old. He does not have any symptoms and is monitored every 6 months with CBC. He is also an avid runner and they think he had it years before it was detected and he was running marathons at the time. We were very frightened at first, but life has gone on as usual, so the fear has subsided for the most part. We recently moved to Colorado and he saw a new oncologist who wanted to do another flow cytometry test (waiting for results) and monitor closer, so this has us thinking about it more and about how little information there is on the disorder. I think it is great that this forum is here for support and information. Thanks much.

LimeDelta greetings and welcome - i too am living in Colorado - I Live in Centennial and seeing 2 oncologist one from Sky Ridge Hospital and one from Rocky Mountain Cancer Center. Let me know if you need any information or help.Good Luck and God Bless. PS i was wondering how your husband has felt since moving here, my feeling is that once my wife and I moved to Colorado in 2003, the lack of oxygen advanced my symptoms.

I have just been diagnosed with T-cell LGL leukemia (August) although my hematologist suspects I've had it for 3 years based on my bloodwork. This forum has been the most helpful of all the information we've researched - THANK YOU to all! P.S. We found this link from Diedre's post on the Cancer Survivors Network. Supposedly I am asymptomatic but I disagree. I've been struggling with fatigue (sometimes debilitating), daily headaches (mild to migraines), joint & muscle pain, nausea ... however, I've had fibromyalgia for 20 years and symptoms are similar so it's hard to tell what's what but the fatigue is definitely different and much worse than fibro-fatigue. My blood levels are gradually dropping but WBC, RBC, platelets & Hemoglobin are all either low normal or just barely below normal. My lymphocytes are steadily increasing and neutrophils are decreasing but thankfully not in the danger zone yet! I will post more later about my diagnosis & treatment options on the other threads. Thanks again for this community - I appreciate everyone's information & kind words. Glad to know I'm not alone in my tiredness and confusion.

My name is John, I'm 58 hrs old married for 24 hrs with a 20 yr old daughter and a 17 yr old son. My wife is a rnc and works in a nicu unit at doctors hospital in Modesto ca. I was diagnosed with rheumatoid arthritis about 8 months ago. With a lo WBC my rhumatologist sent me to an oncologist done a bone marrow biopsy and was diagnosed with t- cell lcll. I'm taking prednisone an d metotrexate for my ra. My lgll is indolent and being monitored. I quit taking my mess because I drive truck for a living and was getting dizzy spells from my Meds. Then a month ago I got a viral infection, my WBC dropped to 0.7 and plalettes down to 30 thousand. Spent two weeks in the hospital. All because of not taking my meds. My WBC is now up to 3.0 and platlettes up to 160,000. Getting stronger everyday. Am currently on disabilIty and religiously take my meds! I have an appointment at USF med center next month.

Ment to type that my wife is a RNC and works at a neonatal intensive care unit. Thanks.

Spadecoole-I know it is tempting not to take meds because you want to be able to work-I am currently fighting that battle right now. The few times I didn't take my meds I ended up taking several steps back but we need the income. I haven't quite found a balance yet. I just found out we make too much for me to be on SSDI-yet we are in the lower middle class. I think the more attention we bring to this disease hopefully more people will research it.

Sarasotap-thanks for sharing your thoughts. My wife is 12 yrs younger than me and I am fortunate that her health is good without her working and her insurance, I don't know what we would do. I know spending 2 weeks in the hospital really sucked. I'm freaked out about going out in the public and catching something again. I've been reading about eating right and eating certain foods to build up my immune system. Right now my rheumatoid arthritis is my downfall. But I'll keep taking my meds and cross my fingers, and hopefully fight off anymore infections. Thanks for your reply and the best of luck to you. PS how long have you had lgll? And do you have RA?

Spadecoole-I have been diagnosed with LGL since May '09 but after reviewing my medical records I most likely have had it a lot longer-6 or 7 years. I do not have RA-was tested but all of my LGL symptoms have mimicked RA so I totally understand the pain and fatigue. I have eaten healthier as well and tried to be as active as possible-my biggest complaint in that department is I have been on prednisone for a year and half-so I have gained a lot of weight. Without the med though functioning is not possible so I have decided I rather be heavier and more active than thin and stuck at home. LOL! It is funny what becomes important to you when you are diagnosed with something like LGL. I appreciated the small things a LOT more and am grateful for my good days!!!

Hello everyone! I am 36 years old and have been diagnosed with LGL in 2002. I am a young mum (from belgium) of two little kids (5 and 2 years old). I would like to point out that there is also another LGL group on yahoo groups wich exists since several years. I posted on this yahoo group 4 years ago a message about “LGL and prenancy” which might be useful for some of you. I am prepared to share my experience of having kids and LGL. I know also that a short article in a scientifical journal have been published about this topic a year after I had my first child (in 2005). I will give you the reference as soon as I can for those interested. Kind regards!!! Candice This message has also been posted in the "Hello" topic, apologies for

Hey everybody, 52, DX at MD Anderson Dallas TX, Nov 2007. However we think I have had this for at least thirty years or more. Live in DeFuniak Springs Florida. Have received the most help from others on the yahoo LGL messageboard.and glad to join your group also. I will try to have the energy to keep up with both sites. Of all, I think the Yahoo site is the easiest to manage and has the most members.

I don't remember finding a yahoo group, and just did a search with no luck, would you please post a link or search terms that would help us find it? Thanks! -Deirdre

here is the link http://health.groups.yahoo.com/group/Large_Granular_Lymphocyte_Leukemia/ kind regards, candice

Hello, my name is Cheri and i was diagnosed with T-Cell LGL in 2009 however by the looks of my blood work i have had this since at least 2006. i am on watch and wait, get check every 3 months, and my only symptoms are fatigue and SOB. i am 56... ive change my eating habits, exercise more , and take a food based supplement that seems to help (along with Co Q10 which really helps with the sob)... i am grateful to have found this site. Thanks Just did my first Century ride with the Leukemia Society... America's Most Beautiful Bike Ride (100 Miles around Lake Tahoe :) I join this group to encourage me to exercise more and to help raise monies for research

Cheri-would you mind sharing how you have changed your diet (generally) & what supplement you take? My husband wants to meet with a nutritionist soon but hasn't been able to yet. Thanks

I went to a place called Wildwood in Georgia and was detoxed from sugar, meats, and some other junk. I was introduced to a vegan diet (i am not following it very well :)... during my stay there my blood work really improved. it is now within a normal range and i am hoping to keep it there. i struggle with sugars (i love sweets:) ... and occasionally still eat meat but i have leaned towards vegetarianism. i also juice some each week. i added cycling ...which i love (started out having difficultly going 2 miles) and have since done a couple Century rides :) the supplements i take are food based from a company called Mannatech ... you can find them online. i really believe they have been a life saver for me and my husband. i also take co q10 for the shortness of breath... that's it... oh and i try to laugh more :) too! I would love to hear what has worked for others ...

Hi Cheri, thanks for your interesting post. I too take coq10 and Usana mega antioxidants and vitamins. See my post under the thread "symptoms and other diseases" posted 19 days ago outlining the supplements i'm taking. I am going to juice as well, thanks for mentioning that. good one you with all that cycling! You have inspired me to get out and do some exercise, balanced with not getting too fatigued. Laughing is definately a good tonic! Jo from New Zealand

Yes Jo, Pre DX, I worked at a comedy club for 18 years and truly feel the laughter kept the LGL from progressing faster.

I thought I would post in introductions.. recent update: my neutrophil counts crashed over the holidays, ended up in the ED. Back on prednisone ( High of 100 mg) and 20 mg MTX. everytime we lower the prednisone to 20 mg, my counts start to decline. Next step: replace prednisone with Cytoxan. weekly labs. Below is my post from the "Hello" thread Hello, I live in Seattle. I was dx a year ago with LGL at the same time with stage 1 breast cancer. At the first consultation with my oncologist for breast cancer, he noticed my neutrophils were 700, took a bone marrow sample, and the test confirmed LGL. Then tested for RA, negative. I was told LGL was more of an auto immune disorder discovered by MD researcher at the University of Washington here in Seattle. Symptoms: fatigue, bleeding gums jumped at me. Also over the years, my muscles hurt and just feel funny. I am extremely active, and related the fatigue, muscle weakness to getting older ( 53) and still trying to keep up with skiing, climbing while working. . Chemo (cytoxan and taxotere) wiped out my Ns & neulasta shots did not help. I ended up in the hospital with bacteria pneumonia for several weeks. While there, I had daily shots of neulasta and we played the N count game, I had been at zero-30 for so long, we stopped the chemo treatment and started MTX and prednisone. I took both for 3 months while I had radiation. I am happy my breast cancer trmt is behind me, but my Ns are vacillating: 2400, 1600, then 700 last week, now 1300. It is difficult to tell what is due to LGL, or side effects from Tamoxifen and cancer treatment. My oncologist wants to monitor at this point: he thinks the up and downs could be normal. Thanks for setting up this forum.

Hi everyone It has been awhile since I posted. My husband was diagnosed a little over a year ago with LGL by our local oncologist (in MI) & since then has seen Dr Loughran in PA and a Dr who specializes in LGL at the Mayo Clinic. We have had interesting outcomes - although he was diagnosed with & blood work backed up his initial diagnosis - both Dr Loughran and Mayo have decided that this was a misdiagnosis. The Dr at Mayo mentioned that LGL is currently over-diagnosed since it is difficult to be sure why LGL/Tcells are present for each person. While I totally understand that being wrongly diagnosed will not be the case for most people I thought I'd include this in the discussion in case anyone else wanted to get a second or third opinion just to be sure that LGL is what you are dealing with. We were privileged to be able to do so & are very glad. My husband does have some other health concerns but it was good to be able to confirm or in our case correct the diagnosis.

Very interesting! Good Luck. And thanks for posting. I guess we all need to be prepared for changes in our health and health reports - be it up, down, left, right, diagonal or even curly-Q. Myself, I am feeling the spring time in my health after a mildly difficult winter - I don't want it to end. Just had the neighbors over for dinner, an undertaking I couldn't have imagined some months ago. Even though my neutrophils are down to 200-500, instead of my usual 500-700, I feel better. Is it all in my head? I don't think so, but I wish it could be explained.

I always feel better in the spring, no matter what. However this spring I am having some allergy issues and fighting the respitory problems can be exhausting. I am prepared for the heat of the summer and have my pool up and running so I will be able to exercise.

My name is Herman from Sydney, Australia and I am 50 years old (a software developer by profession). On 2 April 2011 I had routine blood tests. Because I turned 50 in October 2010, my GP included haematology test as well. All tests were normal except for the following Haemoglobin (105, normal range 130-180) Neutrophils (0.82, normal range 2.0-7.5) Lymphocytes (5.30, normal range 1.0-4.0) He asked me to have a repeat haemotology test for confirmation and some additional tests. They came back with the same results and with initial diagnosis of large granular lymphocyte leukaemia. I was really shocked and sad because I have 2 young daughters (6.5yo and 2.5yo). I have no symptoms at all and my health was generally very good. My GP sent me to a haemotologist and surprisingly I was booked for 19 May 2011. I had to do thorough blood tests, bone marrow biopsy and ct-scans. On 2 June 2011, the haemotologist confirmed based on the blood tests and bone marrow biopsy I have T-Cell Large Granular Lymphocyte Leukaemia. I started taking 10mg methotrexate every Saturday and having blood tests every Wednesday to monitor the progress and the liver function. Whenever I take methotrexate, I have diarrhoea, discomfort in my bowel and occassional mouth ulcers. So far, there is no improvement in the blood test results: Haemoglobin (varies between 100-109, normal range 130-180) Neutrophils (varies between 0.7-2.1, normal range 2.0-7.5) Lymphocytes (varies between 4.5-5.8, normal range 1.0-4.0)

Nibl - would you mind sharing the name of the doctor at Mayo? thanks

Hi Hermon, welcome to our group! my husband is also a software developer, and our kids are now 4,5 and 7. It's amazing to think my husband's had LGL for 1.5 yrs already. He is lucky that a combination of medications brought his LGL and RA to "remission" in less than 6 months and he's mostly fine now. He resents the side effects of the meds that he still has to take, but it's hard to know whether the diseases/symptoms would return if he stopped taking them. it looks like you've had some results in the right direction even if it's a small change. methotrexate can take a while to take effect, so don't lose hope yet. Are you taking any supplements? Methotrexate depletes folic acid so my husband was prescribed a folic acid and B12 supplement along with a few others related to his rheumatoid arthritis diagnosis. He also takes a prescription called Leucovorin which can help counter the negative effects of Methotrexate. Aside from the side effects of the drugs, were/are you feeling ill at all? I imagine that it's harder to put up with the medications' side effects if it isn't fixing something else really bothersome or obvious. (poor blood counts don't always make you feel bad though you may feel generally better when they improve) It is terrifying to get a leukemia diagnosis, but it turns out to not be like most of other types of leukemia you've heard of. It doesn't come with a survival rate or dramatic treatment, and many of us don't look or act sick most of the time. I hope you feel better soon! Deirdre

Hi Deirdre, thank you for your info and encouragement. I didn't take any supplements at all (wasn't asked to do so). Before having the side effects from Methotrexate, I didn't feel ill at all. The diagnosis was discovered by accident during a routine blood test. I turned 50 in October 2010. So I asked my GP for a thorough blood test in January 2011. I did procrastinate until early April 2011. I have only taken the Methotrexate 9 times, but already suffer from stomach ulcer as a result. I didn't take Methotrexate last Saturday and took Mylanta (for stomach ulcer) instead. My stomach is getting better now. How did your husband cope with the side effects? Did they disappear after a while? I have decided to stop taking Methotrexate and will take Naturopathic medicine instead. Herman

Curious as to how many people on MTX were prescribed folic acid? Prescribing dr didn't mention folic acid. During a hospital stay (kidneys) the admitting dr started hubby on folic acid. 6 weeks later we're being told folic acid supps can confuse the MTX and make it less effective. (I guess depleted folic acid in cancer cells is a good thing...) We confirmed that last bit of info on the MTX pharmaceutical website. My husbands symptoms improved after starting MTX and then after a few weeks of maintenance symptoms starting returning. His labs have been great though, so his dr's are encouraged. Just upp'd his dose, and again there seems to be an improvement in symptoms. Just wondering how many dosage increases we're gonna have to go through. We were also told that LGL very often accompanies another type of cancer. I think I read on here that someone else had breast cancer before being diagnosed with LGL. Thoughts? Thanks!

My name is Tracy and I'm 32 years old. I was diagnosed with T-Cell LGL less than a month ago. My doctors suspect I have been dealing with it since I was around 19 years old. I am currently seeing a hematologist in Toledo, and will probably be seeing a specialist at the Cleveland Clinic in the near future. I really don't have many symptoms beyond my Lymphocytes being high and Neutrophils being low. I have always dealt with fatigue, and being sick frequently, so I'm not sure how much that has to do with the LGL... I have been very frustrated with the lack of info about this illness, and am very excited to find this community!

Hi to everyone, My name is Loredana My Baby Brother, Michael (49 years old) was diagnosed Chronic Large Granular T Cell Leukemia 1 year ago. Looking back at past blood test results I realized that Lymphocytosis was present for at least 6 years before actual diagnosis. I am not sure why none of the doctors ever picked up on this. My research also indicates that it is not uncommon for people with Down’s to develop Leukemia. We live in Botswana (he lives with me) and we would appreciate any information relating to his condition. His hair is thinning and he has had night tremors (not sweats) and shows weight loss. His spleen is not enlarged and the oncologist we visited in Italy says his condition is not serious enough to take anything. Is that possible? Also, he gets gout. We are so isolated from medical civilization so I would appreciate any dietary advice. I am freaking out (obviously) and would like the name of a capable oncologist with good bedside manner in South Africa (preferably Johannesburg or Pretoria area). Anyone? anything? Keep the comments running. Thank you all.

Sorry, Loredana again. I forgot to mention that Michael has Down's Syndrome.

Hello, My name is Sandy. I am 63 years old and live in Madison, Wisconsin. I am a retired special ed. teacher. I was diagnosed in August 2011 after being followed for 11 months for wacky blood test scores found during a pre op. I have hurt for many years and was always told I couldn't have pain in the indicated areas.......led to believe I was just imagining it. In the last year or two I have been a lot more tired but I just assumed age was the cause and I needed to retire. Other than that, I don't have any symptoms and am not being treated. My dr., at the Carbone Cancer Center /University Hospital only has 5 other patients with an LGL diagnosis.....I don't know if I am the only with a T-LGL diagnosis though.(I'm still confused here on LGL vs T-LGL). I look forward to hearing about the other members of this group......

Hello my name is Jenny. I have not been diagnosed with t cell lgl yet but I have a strong suspension that's what I have and I feel I have had this at least 6 years, that's the oldest cbcs I could find. I'm 31 years old and this is what I've gone through so far : I went in to routine blood work about 4 months ago, i was called immediately because my neutrophil anc was. 400, I had monocytosis also. I went back to get the blood work rechecked 5 days later and the anc was up to. 800 then two days after that my counts completely normalized and my anc was 3.4. I was refereed to a hemotologist/oncologist. My counts have gone up and down the whole time they got as low as. 800 to as high as 5.5. But lucky that they haven't been as low as the first time. These fluctuations are always accompanies with monocytsis and my lymphocytes fluctuate as well but not far out of the normal range. I do not get infections often if I do they are mild short lived colds and maybe 1 a year. The tests have included blood flow cytometry bone marrow biopsy w flow cytometry and cytogenetics, a weak positive Ana (1:40) normal blood smear, normal rheumatology tests so no RA, all other bloodwork was normal except when they first found my neutropenia at its lowest my thyroid was way off but has since normalized. The only findings in the bone marrow was a left shift in the meyloid cells which are the cells that make the neutrophils. Dr doesn't know why. She's diagnosed me w chronic benign neutropenia and will keep monitoring me monthly. I don't get the fluctuations or the flow cytometry I figured these tests would have detected lgl my Dr doesn't think I have it but I read the marker for Lgl on flow cytometry is cd3 cd8 CD 57, my flow cytometry test did not include the cd57 marker so it makes me scared it was over looked. But my dr said if lgl was present it often does show up on the cytometry test. So my question to you guys is what did they find in your tests to determine your Dx? What type of flow cytometry did u have and what were your results. I talked to my hemo dr extensively about the possibility of me having this and she said if it was present the flow cytometry and bone marrow biopsy would show something. Also I have had normal abdominal ultrasounds normal CT scan (head and neck onlu) no abnormal rbc or platelet counts. I sometimes get mild night sweats on my chest and upper back nut I'm not drenching sheets and its not all the time. Any advice would be helpful. Thanks

Please excuse all the typos and weird out of place words, I wrote this from my phone.