Hi all, I was diagnosed 5 months ago during a pre-op exam but am currently considered relatively asymptomatic. I get overwhemingly tired sometimes and have hurt a lot for many years now but always thought it was because I was aging-I am 63-and drag around a very problematic foot. I am curious though about something that no one else has mentioned so far.....weight. I have lost 45# in the past year. I have worked at it but weight has never fallen off quite so easily before. Has anyone else noticed this? Also my mother has lymphoma....is this something prevalent in other people's families? I look forward to all the information I can gain from this group. I really feel at a loss as to who to question about symptoms.... thanks

Sorry you are now among our group. Speaking for myself, my weight stays very stable. I can lose weight easily if I try, but I use food for comfort. There is no significant history of cancer in my family, and definitely no blood disorders. In my research I have found that this seems to be completely random - although we are all Caucasian. I have heard that they feel this is a viral initiated disorder which mimics leukemia and therefore is classified as such - but it wouldn't surprise me if in the future they give it an HIV type name. (Not that is AIDS obviously, death rates are barely negligible in this disorder) I liken it to a Fibromyalgia type of disorder - which consequently it has as one of its symptoms. I am 11 mos remission after Campath. My best advice is to keep your body warm - cold seems to hurt me most. It is a chronic, indolent disorder like lupus, and it will remain somewhat dormant in some patients but act up in others. Symptoms range from aches and pains to a variety of anemias. Know your body, know when something isn't right - watch for extreme fatique and breathlessness as a sign to see your doctor for bloodwork. Best to you....

I lost about the same amount of weight within six months.People kept telling me that they thought it was due to stress, but I wasn't stressed.I went to several Dr's and through several tests and none of them could find a problem.I finally found a Dr who went through all the same tests again.My wife mentioned to him one day that I was haveing cramps in my legs.He checked my iron and it was very low, so he put me on iron.I had been told earlier that my iron was low, but the Dr's never had followed up on it.Finallly, after the iron count kept dropping, my Dr sent me to an oncologist, who suspected large grandular t cell leukemia and had a bone marrow biospy done.He was right in his daignosis.I am now gaining some of the weight back.I am on 50 mg of cyclosphosphamide a day and having no side effects.I am doing really well overall.The Dr and nurses are amazed at the progress I have made in 4 months.

I lost 20 lbs. in 6 months. I'm now down 25 lbs. I'm African American. This disease hits us all.

I lost about about 5 kg when I was diagnosed in April/May 2011. I had treatment (and detox) from a naturopath in August 2011 - Febuary 2012. I have regained the weight I lost. BTW, I am Australian of Asian descent.