Dealing with natural killer cell leukeumia

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Dealing with natural killer cell leukeumia

by Grammie27 on Mon May 25, 2009 12:00 AM

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I was diagnosed with aggressive natural killer cell (LGL) leukemia 6 years ago.  My prognosis at that time was less than 2 months.  However, I was considered to have undergone a spontaneous (and extremely rare)remission weeks after the diagnosis and have been essentially asymptomatic since that time.  I am now considered to have a chronic form of NK cell leukemia.

This is a rare leukemia, and I have found no one else with this illness and limited information. Within the past 3 months, my counts and markers have begun to change.

Is there anyone else who has dealt with this leukemia and can provide guidance as I am now facing decisions regarding treatment, etc.  My current oncologist leaves much to be desired.  So I am also searching for a new doctor.

 

 

RE: Dealing with natural killer cell leukeumia

by Heritage_Softail on Mon May 25, 2009 12:00 AM

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Grammie27

Not sure if you looked into the clinical trials but thought I would point it out to you.

http://clinicaltrials.gov/ct2/results?term=NK-cell+leukemia

God Bless

Damon

DX Nov 07 AO Grade 3

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