Does anyone know anything about T-cell LGL Leukemia?

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Does anyone know anything about T-cell LGL Leukemia?

by Debra_J on Sun May 04, 2003 12:00 AM

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I was just diagnosed with T-cell LGL Leukemia. I have heard this is very rare and have a lot of questions.

Lgl Leukemia

by Linda1 on Fri Jan 28, 2005 12:00 AM

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Ran into an old message on a cancer board about t-cell lgl leukemia. Just diagnosed in oct. Linda

LGL

by Chronart on Mon Feb 07, 2005 12:00 AM

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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

LGL

by Linda1 on Fri Mar 04, 2005 12:00 AM

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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

Lgl t Cell Type

by Chronart on Sat Mar 05, 2005 12:00 AM

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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

Lgl

by Linda1 on Sun Mar 06, 2005 12:00 AM

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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

Lgl t Cell Type

by Chronart on Sun Mar 06, 2005 12:00 AM

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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.

Lgl Leukemia

by Mike_s_3 on Sat Apr 09, 2005 12:00 AM

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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.

Lgl t Cell Type

by Chronart on Sun Apr 10, 2005 12:00 AM

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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.

Ringing in Ears, fullness

by Linda1 on Tue Apr 12, 2005 12:00 AM

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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
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