Does anyone know anything about T-cell LGL Leukemia?

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.

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
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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_LAodexd3L

Best of Luck and God Bless you,

Mark

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

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.

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

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).

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

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.

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!!