I have had LGL for 2 years now with a variety of symptoms but none that severe compared to many of you. Recently though I've started vomiting at night, having flu like symptoms and feeling like I have a fever (with chills) but not registering a fever. Is this normal (?) for this disease? When people talk about fevers with leukemia, is this the type of fever they are talking about? I hate running to the dr. for more bloodwork everytime I feel lousy but how do you know when this is the time the symptom was serious? My oncologist doesn't take my complaints very seriously when my numbers are o,k. This disease is so confusing!

I cannot help you. I have not had these problems since being diagnosed last year.

Are you taking Neupogen injections to support your WBC? My doctor explained that it works by mimicing flu to stimulate the bone marrow into producing more cells. I have certainly had aches and general miserable feelings with it, with no fevers. No vomiting. Chills I have frequently but I have those with or without Neupogen. Know what you mean about running to the doctor - every time I get a small pain I think it is the harbinger of something terrible!

No, I'm not taking any injections or any other treatment. Thanks for your response.

My Oncologist pretty much ignores my symptoms also. I GP is great, but I also have the flu like symtoms too often with the chills and night and nausea. I find my self running to my GP more and more often, but my oncologist does not want to do anything as long as my numbers do not drop too low. I guess I should feel lucky but do get pretty tired of feeling sick and having so much bone pain

The only symptoms I have are painful mouth ulcers, since being diagnosed two years ago. I'm trying a new mouthwash which seems to help. I'm due for another blood test in November.

I also have the painful mouth ulcers. It brings on much fatique

I'm using a mouthwash called sodium bicarbonate with mint flavour. I get it over the counter here in Australia for $15 but will ask the doctor if I can have a script it could be cheaper. It probably is only salt and bicarbonate soda, going by the name.

wow thanks, I will try it