T-cell large granular lymphocyte leukemia

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T-cell large granular lymphocyte leukemia

by Deac1 on Fri Oct 10, 2008 12:00 AM

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Hi...

I am an African American sixty year old man.  I  have been symphomatic of this disease for at least ten years.  In february of this year I was DX with T-cell LGL.  I have had night sweats, fatigue and dizziness.  I seem to be doing o'kay at this time.  Right now my major concern is what do I have to look forward to my body going through with this disease.  I don't know anyone else with this particular leukemia.  My Dr. is also telling me that African Americans usually have a relatively good prognosis with T-cell LGL. 

RE: T-cell large granular lymphocyte leukemia

by andrewroy on Fri Oct 31, 2008 12:00 AM

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On 10/10/2008 Deac1 wrote:

Hi...

I am an African American sixty year old man.  I  have been symphomatic of this disease for at least ten years.  In february of this year I was DX with T-cell LGL.  I have had night sweats, fatigue and dizziness.  I seem to be doing o'kay at this time.  Right now my major concern is what do I have to look forward to my body going through with this disease.  I don't know anyone else with this particular leukemia.  My Dr. is also telling me that African Americans usually have a relatively good prognosis with T-cell LGL. 


 

I was diagnosed with this cancer approximately 8 years ago.  I was not symptomatic at the time.  I'm now 64.  The doctors have never told me what to expect.  They Just tell me to get to hospital on any sign of infection, fever, etc., and I'll know when things start going south.  Initially my main problem was getting rid of sinus infections related to colds.  I was placed in the hospital two times.  Once when they thought I had pnemonia, and another time when I had a bad fever, they never found out what caused it.  The main problem I've been having in the last few years has been with muscle weakness, especially my legs.  I've always have been very active, and I never though my legs would cause me trouble.  I initially thought it was just being out of shape and old age, but last year during ski season, I knew it was something more.  Blood tests showed that my muscles were inflamed,  My doctor thought that it might be the leukemia kicking up and he tried treating me with some medication for 3 months.  It didn't do much good.  Fortunately the side affects of the medicine weren't too bad.  Other than the muscle weakness, the main difference I notice is excessive fatigue. I have been told by my doctors this type of cancer is very rare.  I also would like to get answers on what to expect, but haven't gotten many.  I suspect the doctors don't want me to start imagining symptoms. Most of the time I'm pretty much in denial about my condition, but the recent muscle problems, have somewhat brought me back to reality.  I woud be interested in knowing wheter you have been experiencing any type of muscle problems, and do they have you on any type of medications.
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