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.
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
Jimbo
(Inactive)
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.
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.
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,
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
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
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.
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.
What is your current course of treatment and present neut. levels? Hope you are doing well and wish you the best.