LGL Leukemia - Living from transfusion to transfusion

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LGL Leukemia - Living from transfusion to transfusion

by IOWAGIRL on Tue Apr 08, 2008 12:00 AM

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Hi there... My friend Beth is 35 and has been battling LGL Leukemia for several years.  It went away for abotu two years after a year of oral chemo, and then it came back about three months ago.  They put her back on the oral chemo but she can't keep her hemoglobin up.  A normal person is a 16... her oncologist tries to keep her around a 9 through weekly transfusions.  On Friday she had to get three bags b/c she was down to a 7.  Anyone else going through this?  Do you have any words of wisdom for us?  She is literally living from one blood transfusion to the next... she doesn't even need the weekly checks... she can tell her hemoglobin is really low when she can hear her heart beating in her ears.  It SUCKS! 

RE: LGL Leukemia - Living from transfusion to transfusion

by longbow on Wed Apr 16, 2008 12:00 AM

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Please search the message board, I had that stuff for years and started taking olive leaf extract with wonderful results. I get it from Swanson Health Products and I started to feel better within a few weeks. I take 1500 mg a day. Longbow 

RE: LGL Leukemia - Living from transfusion to transfusion

by Annette_H_3 on Tue Jan 13, 2009 12:00 AM

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On 4/16/2008 longbow wrote:

Please search the message board, I had that stuff for years and started taking olive leaf extract with wonderful results. I get it from Swanson Health Products and I started to feel better within a few weeks. I take 1500 mg a day. Longbow 

I want to thank you for your comments to this website.  I was diagnosed with T-cell LGL in Oct, 2007.  I went on the cyclophosphomide (sp?) and prednisone for 6 months.  While I was on it, I read on this website that you had taken turmeric (or curcummin) and I tried it.  I have been on the turmeric everyday since and the LGL has been in remission for about 9 months.  I still have to be careful around sick people, though.  I still fight infections, but I am not taking anything for the LGL.  I do take shots for Rheumatoid Arthritis (Humira shots).  Just want you to know that we are listening.

 Annette

RE: LGL Leukemia - Living from transfusion to transfusion

by longbow on Sun Mar 15, 2009 12:00 AM

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Hi, the biggest thing for me was olive leaf extract 1500 mg, C 3000 MG, and COQ10 200 mg. every day, and my joint pain is gone too. I have been benign for four years. God Bless, Longbow  
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