CancerCompass message board discussion started by Debra J. on 5/4/2003 http://www.cancercompass.com/message-board/message/all,564,0.htm Wed, 03 Dec 2008 00:00:00 GMT Wed, 03 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I was just diagnosed with T-cell LGL Leukemia. I have heard this is very rare and have a lot of questions. Debra J. Sun, 04 May 2003 00:00:00 GMT Ran into an old message on a cancer board about t-cell lgl leukemia. Just diagnosed in oct. Linda Linda1 Fri, 28 Jan 2005 00:00:00 GMT I have LGL also. But after doing a little looking the info I found reduced my concerns and have been busy working, Christmas season, and am just beginning to get involved again. Found quite a bit of info just Googling "LGL Leukemia" I am asymptomatic. 64 years old. Like some people on other sites, I have probably had it for 3-4 years but just decided to spend the money (no insurance) to find out why my blood work had been so strange during check ups for several years. I am waiting until I turn 65, medicare, to start any treatment. Just doing a CBC every 2 months to make sure it is staying in the "lazy cancer group." What's your status, LGL wise? Barry Chronart Mon, 07 Feb 2005 00:00:00 GMT I have been on treatment for LGL Leukemia since January '05. I am 41. They say I have had it maybe a couple of years, I suffered from anemia, extreme fatigue, chronic infections, my understanding is that it is supposed to be asymptomatic but I also have ringing in my ears 24/7 and night sweats. I can't seem to find much about it. I was just diagnosed in oct. 04, hopefully I will get more understanding soon. Linda nice to meet you Linda1 Fri, 04 Mar 2005 00:00:00 GMT What are you questions? Here is somthing I posted about 3 weeks ago. Hi I thought I should post this FYI. This is a copy of something I put on a website group. I have a more rare form of T-cell cancer call Large Granular Lymphocyte. It is one of the lazy, indolent or smoldering types (don't you love the vocabulary), with a mean time to death of greater than 10 years. I would be expected to die of some opportunistic infection because my neutrophils keep getting lower and lower (<500 is a problem). The neutrophils are the infection fighting white cells. Due to treatment costs, no insurance and only being 64 so no Medicare yet, and my neutrophil count not being that bad yet (about 800, half of normal) I have been delaying any treatment. I paid the $2,000 to have all the bone marrow tests that confirmed my condition about 4 months ago. I have had low neutophils for about 3 years. But a strange thing has happened while waiting to turn 65 and starting treatment. My last CBC was normal, the first time in three years. Could be an error; I'll wait a month a do it again. But I did experiment, on my own, no doctor involved, by taking an overdose for a few days of curcumin. This is the yellow color in curry that some speculate is the reason there are less leukemia of many types in India. The bottle said don't take more than 5 per day. I took 6 twice a day for 3-4 days and then 2 twice a day for a month. Then got another CBC. This is all very curious to me since I was overworked and stressed out during my Christmas season at work to the point I had a panic attack. To get better under stress is a little amusing. But something has changed and thought it should be reported. An electrical engineer into "efficiency" with a sense of humor about having "indolent" cancer. Barry G, Cotati, CA -- Plan on getting my next CBC next week. There is lots of info on the internet. Here is some stuff. http://cancer.gov/clinicaltrials/ECOG-5998 http://curezone.com/forums/m.asp?f=254&i=2472 http://www.mskcc.org/mskcc/html/5477.cfm http://www.thedoctorslounge.net/oncolounge/forums/ viewtopic.php? p=9025&sid=985e19d5823759a58503a5e596fb1a87#9025 http://www.merck.com/mmhe/sec14/ch179/ch179b.html http://ubb-lls.leukemia-lymphoma.org/cgi-bin/ubbcgi/ forumdisplay.cgi? action=topics&forum=Newly+Diagnosed&number=1 Chronart Sat, 05 Mar 2005 00:00:00 GMT My main questions are about symptoms and what to expect. I have had no success in speaking with some one with this condition. I get extremely fatigued. My ANC is 900. I get mixed signals because sometimes I'm told not to worry about it and than when I take it lightly I'm told to be more careful. I went to see Dr. Laughran at Heshey Medical and he told me to get good care and follow up that infection would be my main concern. I have a very stressful job and work at a hospital (where very nasty germs live) I work with contact isolation patients and my doctors don't seem to be very concerned. I feel vulnerable to this disease but given no direction on how to keep myself healthy given my situation. I think sometimes if I get something it's going to be to late to attack it. Any suggestions to ease my mind. I'm told this isn't terminal but than I read stuff and it says 10 years, why? Is that from the disease or is that how long it takes for your body to catch something it can't fight? Thanks Linda1 Sun, 06 Mar 2005 00:00:00 GMT Hi Linda S. Since I am asymptomatic and have only had it for a few years I can't be of much help. I have seen messages from people who are younger than me and are having troubles. They mention infections and blood transfusions. I too am occasionally fatigued but it varies a lot and I am not sure it has anthing to do with the LGL I feel that my cortisol levels may have been reset by use of caffeine for too many years. One day I'll play three sets of tennis and still feel great all the rest of the day; the next day I'll take out the garbage an feel exhausted -- weird. I am a believer in experimenting with my hormones (take pregnenolone), doing calorie restriction, and Paleo dieting. If your neutrophils are 900 I'd relax, and just get tested regularly. At 600 you might want to discuss treatment (methotrexate, and others). At 400 i'd find another place to work. If my next blood test comes back like my last one I'll let you know. You might want to try the curcumin then. I have had a couple of colds in the last two years but beat them in good time with no trouble. Yes, some infection is what kills you, like having slow motion AIDS. I find the 10 year thing a little humorous. The average age of getting this is 62, add 10 years and you get 72. Being a male, that means I have lost 6 years on average. I would be a lot more frightened if I had diabetes. Chronart Sun, 06 Mar 2005 00:00:00 GMT I have had this lgl for 12 years and am still going strong, I do everything I can to take care of myself. I have that same ringing in the ears stuff, perspiration and weakness. I am doing better with it today. Please respond if you would like. Mike s. Sat, 09 Apr 2005 00:00:00 GMT Update on Curcumin and Absolute Neutrophils (ANC). After waiting a month and taking very little Curcumin I got a new CBC. This time it looks like my blood work and better than it has looked in some time! The one before this one looked perfect and I was very suspicious of it. I think the philbotomist (spelling) just mixed up my blood with someone elses. The good new is everything is better. My ANC jumped from 800 to 1300. Two other parts of the CBC that were out of tolerance are now normal and three or 4 other readings that were out of tolerance are closer to normal. So now I am going back on the curcumin and waiting two more months. My wife recently had a bad cold, the worst one in years for her, and I didn't get it. Yea. I too have ringing in my ears. Mine changes from day to day and is worse when I am inactive and laying down. Best to you all. Barry G. in Northern California. Chronart Sun, 10 Apr 2005 00:00:00 GMT Dealing with the ears has been my primary complaint along with the fatique. Dr. Loughran had asked me if I had come across with any other LGL sufferers with this complaint. Dr. L. and my local hemetologist don't think it is related. What have you done for the ringing in your head and are you ears full all the time? Mine feel like I just stepped off an airplane. The ENT says it can be related to the blood disorder. How have you dealt with the fatique? I have been very frustrated because my endurance kept going down. I was accustomed to running a few miles daily,workaholic and active everywhere else, I'm trying to look at it as a positive for slowing down but I think guilt gets the best of me. like I should be doing more. Any words of advice would be apppreciated. Thanks, Linda Linda1 Tue, 12 Apr 2005 00:00:00 GMT I've had LGL for 4 years and have been thru all the protocols, and still on prednisone as this is the only thing that keeps my neutrophil count from disappearing. The circumin thing sounds sensable and I just ordered some as well as boswellia. I would like to talk to you as I have other information which may be helpful. Jim M. Jimbo Thu, 28 Apr 2005 00:00:00 GMT My Mother has had LGL for about two years. She is 77 years old. I read your message about the Curcumin and thought, why not. I researched it and purchased a bottle for Mom. I asked her to take it to the dr. with her to make sure it would be okay to take it w/the meds she is already taking, which right now are meds for allergies and depression. But not to ask him if it would help her. The dr. told her not to take it because it may not be FDA approved. This was disappointing to me, I sometimes feel that the dr. thinks if she got better, then he would loose that regular medicare payment. [I know, that's a mean thought but it will not go away.] Seems like it would certainly be worth the try as opposed to taking the shots she has to take from time to time because her neurophils are so low. [she had a sore in the bend of her leg which she thought was from her underwear rubbing, the gyno cut it out, said it did not appear to be cancer, he sent it off and it came back cancerous but dr. said it did not reach a dangerous depth. I've read when your immune system is too low, infections can turn cancerous(?), so I worry about that.] I would really like to know when anyone else starts taking the curcumin and their results... Also, have any of your doctors started you on any type of vitiams to raise your immune system? My Mom's dr. has not given her any and I find that to be very strange. Thanks, Jen Jentexas Sat, 30 Apr 2005 00:00:00 GMT Hi Jen, sorry to hear about your mom, My oncologist is very leary about allowing herbal and vitamin therapy, I also have LGL,dx in Oct., I'm only 41 so I prefer natural diet and vitamin therapy as oppossed to the low dose chemo I am currently on. I was told the same thing not FDA approved, not necessary to take vitamins when your body isn't lacking them etc. I get concerned taking the alternative medicines because if I get worse I feel I won't have there full attention. I struggled with my attitude toward the physicans as well but I did get them to open up and share with me their personnal perspective as experts as well as there medical perspective so I could understand better. Best to you and your family Linda Linda1 Sat, 30 Apr 2005 00:00:00 GMT My energy is like yoyo. It has me very confused. One day I will feel great and the next slug-like. I keep trying to figure out why. Somedays it is just the Monday blahs. Other days I think I have a food alergy. Other days I think I may be having an alergy to pollen -- just not nasal. Some days it just feels like and afternoon cafeine crash. Is it related to LGL? Probably 50% because the red blood cells are also damaged and probably are not repairing muscles and supplying oxygen as efficiently. These blood problems means many of us have slightly enlarged liver and spleen. Our bodies are just not as efficient as they were. My tinnitus is best, minimum, when I am active and after being active, played 5 sets of tennis this morning. The worst when I lay down. It is bad when I wake up but goes down after my morning trip to the nautilus room for some exercise. I tried stopping coffee for 10 days to see if it would help, but it didn't seem to have any affect, but I have cut back anyway to try to keep my energy levels off the extreme roller coaster ride. Each of us are different. Good luck on finding what makes you feel best. Barry Chronart Sat, 30 Apr 2005 00:00:00 GMT Hi All, What follows has nothing to do with anyone. It is more of a personel rant that I must get out. There is a problem with the practice of medicine in the U.S. You can never ask the doctor his opinion on anthing. He can't have an opinion. All he can do is follow and suggest reccommended protocols. If a cancer doctors says anthing beside burn, cut and poison he is breaking the law in most states and can be sued. Good doctors are just very empathetic and good at explaining the protocols to the laymen. What is sad is except for the empathy a computer could do a better job. Several years ago researchers discovered you could cure ulcers by taking two antibiotics for a month. It took 5 years before it became a reccommened protocol and doctors were allowed to proscribe the regimine. Ridiculous delay. It is wise to keep your doctor informed of what you are doing, but never ask them for what they can not give -- approval. If they are offended, find a new doctor. You are the boss, all they do is educate and parrot the protocols. 10 years ago my oldest friend was diagnosed with metastized melanoma. He let them cut once, but then went natural. He stopped drinking red wine because alcohol damages your immune system. He quit fighting a law suit. He changed jobs. These lifestyle changes made him much happier which imporved his immune system. He started living for his 5 year old son. He didn't want to miss watching him grow up. He did 20 other things too numerous to mention, like stopping all milk products in his diet. Today we call it the paleo diet. He beat it. He did not use any doctors. There was a CSPAN booknotes by a doctor talking about why the medical doctors are so hamstrung by the system. I wish I could remember the name of his book because you could go to CSPAN's website and watch the streaming video of it. He was GREAT. Rant over. Hope I haven't offended. This is clearly a hot buttom area for me. Best to you and all. Barry G. Chronart Sat, 30 Apr 2005 00:00:00 GMT If you've had LGL for 12 years, what protocols have you been on? Have any of them worked to briong your neutrophils up? I've tried the gamut and am now in a study with the NIH. Jim M. Jimbo Mon, 16 May 2005 00:00:00 GMT Hi, I was diagnosed with LGL leukemia 2 months ago. I am very interested in your insight about fighting diseases with good nutrition. I am trying different herbs and have increased my fruit and vegetable consumption. I feel weak at times and have night sweats very often. I think I have had this disease for a few years because I have had infections that have progressed into more serious ones, and have a low immune system. I have 2 children, ages 10 and 12, and when they catch a bug, I seem to get it, too. I appreciate any advice you can give me. I run about 5 miles a day about 5 days a week, but sometimes I'm so exhausted in the mornings, that I can't get out of bed. This is very frustrating. I feel too tired to work. Any advice will be appreciated. Lori Marchcop Tue, 17 May 2005 00:00:00 GMT Hi All, Well two more months have passed and I just got the results of my latest CBC. My ANC has gotten worse again droping from 1300 to 900. Hard to know how to interpret these swings. Not much has changed. Does my body have a seasonal change as the weather warms up? Has gaining 4-5 pounds had an effect? Took more curcumin and probably a little more caffeine in this two month period. Perhaps a little more exercise lately. Tinnitus may be a little worse but am getting use to it. Diet and suppliments pretty much the same. Don't seem to be more or less depressed. Work stress is low. Sure would be nice to know what caused the jump from 800 to 1300 and then back to 900. Clearly need to be a detective. Persistance. Barry G. Chronart Tue, 17 May 2005 00:00:00 GMT I have had LGL for 4 years, and have gone through all the recommended drugs. Noone is working on LGL because there are only a few of us. You mention you do everything. What is everything? What do you do to keep up your neutrophils count? I keep trying everything that makes sense, but the only thing that keeps my numbers from dissappearing is Prednisone, but I'm about to go off this as after 4 years, this stuff is beginning to affect me adversely. Thanks for any info. Jim Jimbo Mon, 23 May 2005 00:00:00 GMT I am 46 and have recently been diagnosed with LGL I have no symptoms and it was only diagnosed because I was undergoing tests to be a kidney doner. Recently I contracted a bacterial skin infection Impetigo, it could be totally unrelated but I have never had anything like that before. Do you know if there is a link between LGL and these sort of infections? Mike w Tue, 24 May 2005 00:00:00 GMT My twin sister was just diagnosed. She is 51 and as I hear young for this. I sent your message to her. We are going to experiment and will update you. Thank you for your message. It give me hope. Marie Fri, 17 Jun 2005 00:00:00 GMT I have had LGL for fifteen years, since I was 18 (a relative youngster for this disease). I have been on lots of drugs, most which haven't worked. Neupogen has been great to stabilize my neutrophil counts, but I've recently been hospitalized for pneumonia and neutropenia after ten years of being stable on Neupogen. In the two months since my hospitalization, I've had severe fatigue--can't work, can't think straight, can't do much of anything except sit on the couch all day. Am taking prednisone but the doctor is looking at Campath or Ontac (sp?) as other possibilities. I'm off to see Dr. Loughran for the first time next week to see if he has any brilliant ideas. Anyone have experience with Campath or Ontac? Anyone have any suggestions for improving the fatigue? My RBC and Hg levels are normal, so I know it's not that. Thanks, Christine Christinem Wed, 22 Jun 2005 00:00:00 GMT to: Mike S. If you've had LGL for 12 years you must have tried various things to make it liveable. I'm in my 5th year and have run the gammut in drugs and holistic aids. I would be interested in talking with you to share experiences. After the normal protocols I've remained on Prednisone to keep my neutrophil count from disappearing, but just went off this as I'm trying to see if I can manage on my own. Jimbo Thu, 23 Jun 2005 00:00:00 GMT I just read your message and thought I would contact you. I am 38 yrs old with 3 boys under the age of 12. I have crazy fatigue and a spleen that won't stop hurting. Doctors have told me I look super on the cbc's and can't believe I even found out I have this. Well my cbc's are low everything but lymphs, but not low in comparison to someone with "real" problems. Very frustrated, symptoms are all over the place and it is hard to get through some days at the pace I use to. Hope to hear from you, it is nice just to have people you can comiserate with. Liabette Mon, 22 Aug 2005 00:00:00 GMT I have had lgll for 2 yrs that I know of and have communicated with dr. L , I was wondering how your appt. went? Liabette Mon, 22 Aug 2005 00:00:00 GMT Liabette, I just read your message and I'm having the same problem. My Doctor just said I look great and my cbc report was good. I told her I'm happy about the blood report but I just don't feel good. I have spells of fatigue and now I'm having inflamation in my joints. My Doctor had no answers. I've lost 15#'s since May which I did not need to loose....she said what's with the weight loss??? So I'm very frustrated. I don't know where to find good information on this problem. Nancy Grammers Sun, 11 Sep 2005 00:00:00 GMT My wife was recently diagnosed with LGL Leukemia. I contribute this disease to the medication Arava she was taking for her Rheumatoid Arthritis and we as a family were under a lot of stress, and she was affected most. This medication she is taking is very toxic to her liver and bone marrow. The Doctor is know putting her on Methotrexate; which is more toxic to the body as a whole, especially the liver, bone marrow, intestines, and lungs. I suggest you buy the book by Kevin Trudeau called Natural Cures. There are 12 treatments for cancer that are natural and work, but the FDA is corrupt and does not want you to know about this. My wifes White blood cells were very low from her Arava medication, so I put her on Milk Thistle (Herb) 2x a day and her white blood cell count is back to normal, which helps fight infections and disease. Remember this is your life, and take responsibility for it and others you care for, challenge your Doctors. My wife has a great Doctor, but he does not know everything out there in this world that are natural cures. The FDA does not want you to know about them! I recommend trying Sea Vegg. It is an awesome food nutrition that is just seaweed, with many health benefits. This product I believe in for preventing and curing diseases and illnesses. Nutrition is the most important thing. Stay away from fast food restaurants and restaurants in general, because these foods have lots of chemicals and toxins in them. Exercise is also important, which will definitely boost the immune system. I am not a Doctor, but am very knowledgeable concerning natural cures and how they help prevent disease and illness. If your mother is under stress, I recommend all Vitamin B's to help with Stress and Depression. I hope this helps. I take an antidepressant now, but my goal is to get off all medications and go naturally. Some Drugs, Obesity, and Smoking (Bad Habits) are what is making Americans sick these days. Any questions please reply. Mark Mark_natural_cures Fri, 11 Nov 2005 00:00:00 GMT Hi Debra, I too have been diagnosed with t-cell lgl leukemia and my oncologist told me how rare it is. If you hear of any clinical trials or anything related information on this disease, could you let me know. Or if you would just like to talk about it, I'd be happy to do that too. I haven't received any treatment yet, and have been diagnosed now with this for three years. Sometimes it's so frustrating not knowing how I can help myself. So far, I have been stable with just a vegetarian diet and tons of vitamins. I don't know if it's helping, but it's kept me away from chemo so far. Good luck to you. Signersam Thu, 01 Dec 2005 00:00:00 GMT Was dianosed with LGL Aug 04 at Northwestern(Chicago) and went to Hersey to see Dr. L who confirmed. In Dec 04 when Neut count dropped below 500 Dr. at Northwestern and Dr. L wanted to put me in trial with Prednisone & Methotrexate. I contacted Dr Lamay(has worked with Dr. L) in France and he advised against it(since only manefestation I am suffering is Neutropenia). I decided this in Aug 05 to go to Sloan Kettering and it's been a whole new ballgame. I have been going every month and they have done 3 bone marrows(the other folks never did one) and other cutting edge tests and all is not concluded yet but LGL has been rulled out. They have me on Neulasta which has kept neuts normal until a final course of action is dedcided upon. Beware of herbs(you don't want to mask anything until you know what your dealing with). Curcumin is probably fairly safe but it can thin your blood. Dougsk Sun, 04 Dec 2005 00:00:00 GMT What is your current course of treatment and present neut. levels? Hope you are doing well and wish you the best. Dougsk Sun, 11 Dec 2005 00:00:00 GMT My wife was diagnosed with T-cell LGL over 2 years ago.She is presently being treated at MD Anderson Cancer center in Houston. We tried going to a local cancer center and then we were referred to Baylor Cancer Center in Dallas. We were told that she did not have cancer. I insisted that we get a referrel to MD Anderson. They diagnosed the condition within 2 visits. When we first went, hr blood platelet counts were as low as 13,000. They put her on Methotrexate tablets and this got the platelet count up into the 50,000 range. He then took her off of this medication and put her on Cyclosporin. The platelets shot up to 130,000. He wanted to try to taper the medication and when he did the platelets dropped back to 60,000. He increased the dosage again and the labs last week show then to be at 90,000 again. Eat well, take in protein, and live your life. 2mutts Sun, 01 Jan 2006 00:00:00 GMT Scanning this site I ran into your message regarding your wife's improved white cell nos. with milk thistle. I have Lgl and have run the gamut with all the drugs. My main problem is the white cells and neutrophils. Can you give me more info re milk thistle i e. dosage, how taken etc. I'd appreciate any help. thanks, Jim Munson --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- Jimbo Sat, 18 Feb 2006 00:00:00 GMT Dear Jim, My wife has had Reumatoid Arthritis for 9 years. She has been taking a medication called Arava for nearly 7 years. She started feeling tired, fatigued, and other symptoms. It took a while to figure out what happened, but the Arava medication gave her the LGL-Leukemia. Medications that effect the liver are very dangerous. My wifes blood cell count went below 2,000. She was already on milk thistle, but one tablet a day. I raised it to 2 tablets a day and her white blod cell count went up to 10,500, just above normal on her first visit to the Doctor, 10,000 (Normal), and recently 6,000 (Normal). Her arthritis is really bad again and her Doctor has put her on Methotrexate (15 mg/Once per week); and now she is back on the medication she was taken off that gave her the LGL-Leukemia (Go Figure). Milk Thistle is one of the most potent liver protectors on this earth. It helps the immune system, and also rebuilds the liver and its white blood cells. Most medications are very bad for the liver especially immune suppressing drug. My goal is to get her off all the medications she is on and go natural (No Side Effects, and does not hurt the body). Sea Vegg (seaweed) is very good for you to. Do a google search on Sea Vegg. Here are a couple websites I would like for you to view that will help you significantly live a more healthier life, and you will also learn how corrupt the FDA, Government, and Drug Companies are. It take about 3 to 4 weeks to get the full benefit of milk thistle. I would start out taking 2/day (Wal-Mart has it; by Spring Valley and it is well worth the price). Here are the websites below that I feel very confident will help you. I am not a Doctor, but have done a lot of research on natural cures and they are out there for almost every disease and illness; the problem is the FDA does not want us to know about these cures. I hope this helps you out, and you start feeling better. The key to health is Eating right, sleep, exercise, and stress reduction techniques. I do all of these and I am 43 year of age. I have not been sick for nearly 4 years now, and play basketball and softball as good as the youngsters. http://www.ultimate-cancer-breakthroughs.com/index.php?id=23 and http://www.naturalcures.com/?gclid=CM7B3JXEo4MCFQh_LAodexd3Lw Best of Luck and God Bless you, Mark Mark_natural_cures Sat, 18 Feb 2006 00:00:00 GMT 2 muggs: I've tried the works with no success, and have recently gone on cyclosporin with amazing results i e, neutrophil count went from100 to 2300 in two weeks. My question is, "what dosage were you taking?" I started with 200mg twice daily and now, one month later I'm on 125 twice daily. I'm interested in knowing what a maintenance dosage might be. My LGL's main hindrance are low whites and neutrophils. Thanks Jimbo Jimbo Sun, 05 Mar 2006 00:00:00 GMT 41 male. DX 2+ yrs. after 3+ searching. 5 bone marroy biops. and every other test 3+ My cells do not match up w/ any known cancer. DX based on symptoms altho 5 asymtomatic symptoms. Cyclosporin and Methotrexate both unsucessful. symptoms started with low blood counts and night sweats. followed by weight loss, enlarged spleen and liver. Spleen removed 01-05 weighing 5+ lbs. and liver 3X normal size and growing. Most recently loss of appetite and sick stomach when I do eat. More weight loss,evening fevers up to 101.4 and 6+ nose bleeds every day. Chronic fatigue and crummy feeling at all times, depressed, and impotent. Constant infections and phneumonia last May resulting in 5 day hospital stay, two of which in ICU. Oxygen levels low since and not improving. No Arthrits (sp) but told this is major symptom, and no ringing in the ears. Never heard of this one until this site. I do like Dr. Laughren but am not convinced of the DX. However, none other offered after a trip to Nat'l Cancer Inst. and pathology sent nation wide and a couple other countries as well. I also have Marfan Syndrome requiring and aortic valve and root repair 20 yrs. ago. INR's have been roller coastering for over a year, causing attempts at natural remeied dangerous. Had shingles 2 years ago resulting in severe nerve damage and take several drugs for that as well. Stress is very high, working & living in residential group home with sick kids constntly, plus dealing with every behavioral issue out there. Stressed too because job stability is becoming a concern due to gradually losing ability to perform duties. are there others out there with fevers, nose bleeds and oters mentioned? Also, most of you sound like your condition has remained more stable longer than mine hve yo been more seiousnd improved? Thanks Amos M. Amos Moses 1 Tue, 14 Mar 2006 00:00:00 GMT Hi I'm Rob I was diagnosed with lgl a few months ago I'm 40. I'm glad I found this place. I'm willing to talk--wish I had answers to all the questions here. Hope to see some posts. I'm on predisone now. I was ill for a long time, and it just kept coming up on me as my neutrophils fell I guess. I'm tired a lot now, not feeling sick but my count fell when my doc tried to back down my predisone. Well not getting into the full discussion of that right now... I've learned already from reading posts and I relate to seeing stuff like people saying they feel tired or their energy level is like a yoyo. Rob Catch22 Sat, 03 Jun 2006 00:00:00 GMT Amos I had fevers and night sweats before I was treated for the lgl. I also had shingles. I had a number of infections in just a short amount of time. That tipped it off that I may have lgl (amoung other things). Catch22 Sat, 03 Jun 2006 00:00:00 GMT Hello, I am a 74 year old white male who was recently diagnosed with T-cell Large Granular Lymphocyte disorder. About 10 years ago in a routine blood workup, the doctor told me I had abnormal red blood cells and to keep watch over them. Doctors have mentioned these abnormal shaped cells for years and no one has put a name to them. This past year I have been fatigued and have a just run down feeling that I attributed to old age, even tho I am active, not overweight, and walk each day. In a routine blood test a month ago, my HGB was 8 where last year same time it was 12.8. A bone marrow biopsy confirmed T-cell LGL. Weekly blood tests confirm that HGB is rapidly decreasing, down to 7 currently. My ANC is just over 1000. Dr. Loughran has a study using Zarnestra, an experimental drug. Has anyone heard of this drug? Anyone using it? Currently I am in week two of Methotrexate with no side effects so far. If blood levels fall lower, hematologist strongly recommends blood transfusions. Is there anyone out there who can advise me about the treatments they are currently using? Thank you for any information you can give me. Edward Ogeezer Thu, 13 Jul 2006 00:00:00 GMT Edward, I am 63 and was diagn. with lgl in April. My hgb had been running between 10 and 12.5 for several years. I have only one kidney and also RA. In April my hgb fell to 5.1. I had never before had a blood transfusion, but I've now had 16 since April of this year. I could not qualify for the test study you mentioned because my creatine level is too high. I'm on 50mg cytoxin and a product called Exjade to get rid of iron over load. I don't know if all of this is working. I'm sick and tired most of the time. I'm also taking prednisone, but I have been for many years for the RA. The first line defense, I'm told, is methotrexate. But the Dr. felt it might be harder on my kidney. Jim h Sun, 16 Jul 2006 00:00:00 GMT Edward, this is Jim h again. I forgot, as I seem to do often, to tell you that I've really not had any choices with regard to the blood transfusions. Without the 16 transfusions or units of blood I would be dead. So I guess I like them just fine!! Jim h Sun, 16 Jul 2006 00:00:00 GMT Jim, Thanks for your response. I will likely be receiving my first transfusion this week. Any tips on what to expect? thanks, Ed Ogeezer Tue, 18 Jul 2006 00:00:00 GMT Ed, I will get a transfusion of 2 units of blood tomorrow. (Wednesday). They will give me 50mg of Benadryl IV and a 650mg Tylenol pill. Both before they start the transfusion. Some Docs only give 25mg of Benadryl and in pill form. I've found that the IV is more effective and that the 50mg tends to put me to sleep. The transfusion of two units takes about 4 or 5 hours depending on the speed they set the pump to. The "OPIS" center I go to is first class and brand new with huge recliner chairs, each station with TV and VCR. But after 5 hours in a chair I'm ready to be done. I've been having to go every two to three weeks since April. With the LGL I've got Pure Red-cell Aplasia. My body is not making any new blood, so I'm really transfusion dependent. I'm usually quite tired the day after the transfusion and somewhat better the second day after. By the thrid day I'm usually pumped up and ready!!! Good luck!!! If you have any questions let me know and let me know how it goes for you. Jim Jim h Tue, 18 Jul 2006 00:00:00 GMT Jim, Thanks again! I appreciate all the info. you have provided about the transfusions. Good luck to you tomorrow! It looks like I have a blood draw on Wednesday and a transfusion on Friday. We'll see. You have definitely given me some things to consider. No one else had mentioned the Benadryl/Tylenol. I will definitely ask the doctor about that. By the way, I found another message group in Yahoo Groups on this topic that is pretty active with postings almost daily. Not sure if you have already seen it or not: http://health.groups.yahoo.com/group/Large_Granular_Lymphocyte_Leukemia/ Thanks again, Ed Ogeezer Tue, 18 Jul 2006 00:00:00 GMT Ed, thank you for the help site address. It was news to me and I joined. By the way, the OPIS center I go to is part of a large major community hosital and I'm told the tylenol and Benadryl are just "normal" protocol. Jim h Tue, 18 Jul 2006 00:00:00 GMT Ed, my 2 unit transfusion seemed to come off without any problems. It took about 4.5 hours. My hgb has gone up to 11.2 from 8.8 and I should be good to go for 2 or 3 weeks. I'm pretty tired tonight but that's normal for me after a transfusion. Good luck to you on your first this Friday. Jim Jim h Wed, 19 Jul 2006 00:00:00 GMT Hi Jim, Well, received two pints last Friday. Felt great for two days then sore throat, fever, cough/cold set in. Wednesday blood level was 8.7 - wish it could have been a bit higher - still no energy, hopefully due to cold. Still taking the Methotrexate orally every Thursday. Definitely will not let level go below 8 next time, will get transfusions then. Any info you can give would be most appreciated - thanks Ed. Geezer Fri, 28 Jul 2006 00:00:00 GMT Ed, I wrote you a note on Yahoo - The one you recommended. I'd start the transfusions at 8.9 - no lower. Much higher energy levels and not nearly as tired. I've had 16 units of blood since mid April this year. Only one time did I have symptoms like the ones you had. The Dr said it could be a reaction the that batch of blood. If you have questions after reading the other web site let me know. Jim Jim h Fri, 28 Jul 2006 00:00:00 GMT Anyone has a problem with low platelates and high white cells with low Neutrophils? Himshi Fri, 28 Jul 2006 00:00:00 GMT Jim, Thanks so much for kind words. I did check and write on other website - very informative. Need to get two more units soon - hate the thought of being transfusion dependent but if that's what it takes, then that's the treatment necessary to get energy and old self back. Ed. Geezer Mon, 31 Jul 2006 00:00:00 GMT Hi Barry.I was diagnosed in Jan 07 with LGL Leukemia. Doctor has said to just monitor it for now by having a blood test every two months. We talked about using Neupogen to bring up the neutrophils if things get worse.  I was wondering how you are doing and if you are still having success with curcumin.  I started to see a Naturopath Doctor and am following her program on strengthening the immune system.  This includes vitamin supplements, botanicals such as astralagus, shiitake mushrooms.  And eating a healthy diet with lots of fruits and vegetables (such as berries, green leafy vegetables, garlic, onions, protein foods). She is also giving acupuncture once a week.  I go back in a month for blood countthanks Dan S. Dan s Wed, 28 Feb 2007 00:00:00 GMT Hello Linda,             How are you doing? I am sorry that you have leukemia. I wish there was something I could say to make it go away.   My name is Irene. Today 11/01/07 my mom was diagnose with LGL leukemia. Her Doctor said this is a very rear type of leukemia. I went on the internet to find out more and came across your message and found that you have very similar symptoms as my mom. I need to know more about this from someone who is going thru this. Please help me  lovehopefaith Thu, 01 Nov 2007 00:00:00 GMT I tend to wonder if a lot of us are misdiagnosed. After two bone marrow biopsys my diagnosis changed from T-PLL to T-LGL. After reading all these messages, I find so many differences between patients. It is not very comforting or encouraging. Unlike most, I have an increasing weakness with bone, joint and muscle pain. Simple tasks have become difficult. Been on cyclorsporine and nulasta shots for 2 months. I feel worse than ever. I worry that LGL is just a catch all DX for what can't be explained by another more familar type of Luekemia. Prayers for all,  TJ tjteresa Mon, 04 Feb 2008 00:00:00 GMT