I am 31 years old with chronic t-cell large granular lymphocytic leukemia and was just wondering if anyone else has the same or something similiar, just wanted to touch base...Thanks, Michelle

 Hi Michelle,

I too was just diagnosed with the same thing. For 1 year my GP has been following my CBC's, without any symptoms, and offering no explanations as to why the low WBC. I finally went to a hemotologist that gave me the diagnosis. I am absolutely healthy, and from everything I read, that unless you exhibit some symptoms, they won't treat you. The irony of this is that my husband, 13 years ago was diagnosed with Chronic Mylogenous leukemia. What are the odds that I too would be diagnosed with leukemia. I do plan to go for another opinion, most probaby to MD Anderson, in Texas, which is where my husband goes once a year to be followed. I now live in Florida, am 52, and in great health. I workout all the time, and maintain a very healthy life style. I am nothing but optomistic about my prognosis. Please let me know how you are and what you are planning to do. Feel free to e-mail me at carensellshomes@aol.com. I look forward to hearing from you.

Regards,

Caren

Hi, I was diagnosed via an immunopheno spin down in 2004.  Oncologist thinks it started about 2000. 

I haven't had any noticeable symptoms other than I had a significant drop in aerobic performance about the time the doctor thinks it occurred.  My running endurance dropped off considerably.  Strength has not been affected, I lift a lot of weight in the gym w/o issues.

My blood values had been pretty stable for the past nearly 5 yrs.  They did another spin down this summer and the test results are noticeably better but not enough that the diagnosis has changed. 

I haven't been given any medication and the oncologist said I won't unless things worse dramatically.  Methotrexate is one of the main meds.  Doctor thinks I will motor along as I am and doesn't expect it to worsen.

One of the problems if you call it that is that this disease is a rare form of leukemia and they don't have enough patients in a single area to do much of a valid study.

My impression and it is just that, an impression, from what I have read is that this T-cell LGL is pretty rough on young kids and perhaps teenagers but far less so on older folks and the older perhaps better.  I'm 62, maybe something good about getting older?  As the other poster said, feel free to email me at DONALDM86@msn.com if you desire more commentary from me.

Best wishes to you.  Don

 Dear Michelle,

It has not been 24 hours since I received a diagnosis of Chronic Lymphocytic Leukemia.

I am still in shock.

Regards, Wlad

I am so sorry to hear that-if you would like to talk my email is sarasotap@comcast.net. 

I was in shock too! I am 31 so this was an odd diagnosis for someone my age. Your symptoms will of course determine if you start treatment or not.

Feel free to email me at sarasotap@comcast.net if you would like to discuss anything!