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  #26  
Old Sat Jan 16, 2021, 08:18 PM
triumphe64 triumphe64 is offline
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Join Date: Feb 2008
Location: Dallas, Texas
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Quote:
Originally Posted by VINCENT View Post
thanks triumph64, i can only imagine why you use that handle
It's a college thing. Did they let you join?
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Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #27  
Old Mon Jan 18, 2021, 02:56 PM
VINCENT VINCENT is offline
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Join Date: Jan 2021
Location: USA
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I thought a Biker thing

Hello triumph64,

I am in and so far I have gained a wealth of information that would normally have taken hours or days to find.
Thank you for checking in and hope all is well with you!
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  #28  
Old Sun Dec 26, 2021, 04:37 PM
LCarrington LCarrington is offline
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Join Date: Dec 2021
Location: Brighton, Colorado
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I Just Joined

Is this the correct forum to discuss LGLL? I have been in one Facebook group but one of the admins has a personal vendetta against me. Looking for a friendlier place for support with this baffling, scary, and largely unknown variety of leukemia. Thank you. Lewis
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  #29  
Old Sun Dec 26, 2021, 07:36 PM
Neil Cuadra Neil Cuadra is offline
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Join Date: Jul 2006
Location: Los Angeles, California
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Originally Posted by LCarrington View Post
Is this the correct forum to discuss LGLL? I have been in one Facebook group but one of the admins has a personal vendetta against me. Looking for a friendlier place for support with this baffling, scary, and largely unknown variety of leukemia. Thank you. Lewis
Welcome, LCarrington.

You're welcome to discuss LGLL with anyone here at Marrowforums. Users here can choose to be anonymous if they want, and you won't find any vendettas, just discussions about diagnosis, treatment, and living with these diseases.

Whether you are facing T-cell or NK-cell LGLL, you might also look for information from the Leukemia & Lymphoma Society. In addition to medical information, they offer local support groups all over the country.

The Colorado Springs Family Support Group meets monthly on the third Tuesday of each month, at 6pm Mountain Time, so the next meeting will be on January 18, 2022. The people who participate there may be facing many different forms of leukemia, so there may or may not be a discussion involving LGLL. The Leukemia & Lymphoma Society may be able to tell you about any LGLL-specific resources they have.
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  #30  
Old Mon Dec 27, 2021, 11:47 AM
triumphe64 triumphe64 is offline
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Join Date: Feb 2008
Location: Dallas, Texas
Posts: 455
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Originally Posted by LCarrington View Post
Is this the correct forum to discuss LGLL? I have been in one Facebook group but one of the admins has a personal vendetta against me. Looking for a friendlier place for support with this baffling, scary, and largely unknown variety of leukemia. Thank you. Lewis
I am familiar with a LGLL FB group and with the admins. I know that one lady is just very careful as to who she lets in because they have been burned in the past. I'm sure they have questions to answer to join. Do you know why she has a vendetta?
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Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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