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Recommendation Leukemia & Lymphoma Society

Updated Oct 21, 2010, filed in All Journey Phases, Leukemia
About: The Leukemia & Lymphoma Society (LLS) is the world’s largest voluntary health organization dedicated to funding blood cancer research, education and patient services.
Location: national
Organization: Leukemia & Lymphoma Society
Phone: (800) 955-4572
type: supportive services
tags: financial assistance, support group, helpline, spanish, insurance copay
Hi, I'm Paulette O.

I was diagnosed with Waldenstroms, which is a Non-hodgkins Lymphoma, and have spent several hundred hours doing research on this rare disease. I would like to connect with all other Waldsenstrom sufferers.

  • Sun Feb 23, 2014
Hi, I'm Andree J M.

I have Waldenstroms also and was diagnosed in 2007. My IGM has been stable at around 2700 but my beta2 has been 5 or over. The Docs can’t really explain what that means. I also have multiple enlarging lymph nodes, which is not considered significant, unless they cause problems.
I have not had any treatment other than IV iron for occasional anemia.
I am 77 years old and live in Knoxville, TN.

  • Sat Oct 31, 2015
Hi, I'm Angela M.

Who is your doctor in Knoxville? My father has Waldenstroms. Was diagnosed almost 8 years ago. Have complications now. Believed to be Bing Nell Syndrome. His oncologist is not the easiest to work with. Want to get a second opinion. Thanks!

  • Sat Dec 3, 2016