I may be able to help you as I have the same diagnosis of lymphoplasmacytic lymphoma.  I was diagnosed 6 years ago.  Another name is Waldenstroms Macoglobulenia.  If you live in the Dallas area, UT Southwestern has a wonderful hemotology/onclology department.  the Leukemia and Lymphoma Society have sponsored some meetings where Dr. Treon with the Bing Institute, (associated with Harvard) is doing research on this type of NHL.  I would be happy to share what I know if you would like to email privately. 

As I understand from following the thread, you have Walenstom's Macrobulinemia, or Lymphoplasmacytic Lymphoma. I have the same diagnosis, and just found out about IMWF, or International Waldenstom's Macrobulinemia Foundation. They are headquartered in Sarasota, Florida, 3932 D  Swift Road  Sarasota, FL 34231-6541. The phone is: 941-927-4963, and the web site is: www.iwmf.com.

I recently found out about them while I was vacationing in Sarasota, and stopped by to check them out. Really nice people, and I left there with 7 or 8 different booklets on Waldentrom's, and a newsletter. They may be able to also give you names of Dr.'s with a special interest, or experience, with Waldenstrom's. I hope this is helpful.

I don't know where you live. In New Jersey at Hackensack Univ. Medical Center, Dr. Andre Goy (pronounced gwa) is an internationally known lymphoma expert and researcher. He would be someone to definitely contact. The hospital's main number is 201-992-2000 or 5000, if one doesn't work try the other. They can give you his private line and someone from his staff will talk to you. Judy