Did you know?

The IWMF raised more than five million dollars for WM medical research

Did you know?

The IWMF raised more than 60 support groups in North America and nearly 20 others world-wide

Did you know?

The IWMF has a current worldwide membership of nearly 4,000

Did you know?

IWMF-TALK is a wonderful place to share information and learn from other survivors

Did you know?

Each year 1,500 new cases of Waldenstrom's macroglobulinemia are diagnosed in the USA

Did you know?

Volunteers at the IWMF Telephone Lifeline are waiting to share their experiences with you

Did you know?

You can order DVD recordings of past WM Educational Forums online or by mail

Did you know?

All IWMF programs and services are funded by WM survivors, caregivers, friends, and family

Biology and Treatment Options

NCCN Clinical Practice Guidelines in Oncology for Waldenstrom's Macroglobulinemia/Lymphoplasmacytic Lymphoma (Version 1.2014)

The NCCN is a non-profit alliance of 23 cancer centers in the U.S. whose goal is to improve the quality and effectiveness of care provided to cancer patients.  Every year or so, they provide updated guidelines based on the most current and up-to-date diagnosis and treatment guidelines that are available.  The 2014 guidelines include two major changes that may potentially impact the care of patients with Waldenstrom’s Macroglobulinemia. First, MYD88 L265P testing was added and has the potential to help pathologists and clinicians make the diagnosis of WM. Secondly, the ibrutinib drug was added as a recommended therapy for patients with relapsed/refractory (previously treated) WM.  The newest guidelines for WM/LPL can be found at  Clinical Practice Guidelines for WM (NOTE: you'll have to create an account to view the document)Link provided with permission from the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) for Waldenström’s Macroglobulinemia/Lymphoplasmacytic Lymphoma V.1.2014. © 2014 National Comprehensive Cancer Network, Inc. All rights reserved. To view the most recent and complete version of the guideline, go online to www.nccn.org. NATIONAL COMPREHENSIVE CANCER NETWORK®, NCCN®, NCCN GUIDELINES®, and all other NCCN Content are trademarks owned by the National Comprehensive Cancer Network, Inc.


Treatment recommendations for patients with WM and related disorders: IWWM-7 consensus (August, 2014)


The IWMF sponsors ain International Workshop on WM (IWWM) that is held every other year in a different location of the world.  At this workshop, noted WM researchers worldwide gather together to discuss clinical and research findings, and, from time to time, to arrive at a consensus regarding diagnosis and treatment for WM.  This article presents treatment recommendations that resulted from the IWWM-7 proceedings that took place in August, 2012.


Meletios A. Dimopoulos, Efstathios Kastritis, Roger G. Owen, Robert A. Kyle, et al. "Treatment Recommendations for patients with Waldenstrom macroglobulinemia (WM) and related idisorders: IWWM-7 consensus." Blood. Volume 124, issue 9 (28 August, 2014); pp. 1404-1411.  Also available online.





A review of what is currently known (in 2013/2014) about WM, it's biology and treatment, with a summary of novel agents that are becoming available.


Ilyas Sahin, Houry Leblebjian, Steven P. Treon, and Irene M. Ghobrial, from Dana Farber. "Waldenstrom macroglobulinemia: From Biology to Treatment." (article provided with permission of Dr. Ghobrial).  Published in Expert Rev Hematol. 2014 Jan 3.




A fairly "technical" discussion of the biology behind WM, that presents important concepts that contribute towards getting to an understanding what makes WM "tick".


Hunter, Zachary (and Treon, Stephen) , et al from Dana Farber. "The Genomic Landscape of Waldenstrom's Macroglobulinemia is Characterized by Highly Rercurring MYD88 and WHIM-like CXCR4 Mutations, and Small Somatic Deletions Associated with B-cell Lymphomagenesis." (article provided with permission of the author).


Note: this study was funded in part with the generous support of the IWMF.


Click on the link below for a webcast presentation of Waldenstrom's Macroglobulinemia Biology and Treatment Options by  Eva Kimby, M.D., Ph.D.,  Karolinska Institute, Stockholm, Sweden.


Webcast - WM Biology and Treatment Options Presented by Dr. Eva Kimby, Karolinska Institute


This presentation was caputured during a live conference held on October 24, 2009 in New York City at the 14th Annual North American Forum on Lymphoma.


This project was supported through cooperative agreement number 1U58DP1110 from the Centers for Disease Control Prevention. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention.



Treatment guidelines published by Mayo Clinic WM researchers in September, 2010.  In the article below, Mayo Clinic researchers provide their recommendations on timing and choice of therapy.


Ansell, Stephen M., et al.  "Diagnosis and Management of Waldenstrom Macroglobulinemia: Mayo Stratificaton of Macroglobulinemia and Risk-Adapted Therapy (mSMART) Guidelines." Mayo Clinic Proceedings.  Volume 85, Issue 9 (September, 2010): pp. 824-833.  Also available online.  (Article provided with permission of authors.)


NOTE: The mSMART guidelines undergo period review and adjustment as reserchers gain more knowledge about WM.  Please view their mSMART website for updated versions of their recommendations.



Treatment recommendations, published by Dr. Steve Treon of the Dana Farber Cancer Institute in September 2009 in the Blood Journal.  In the article below, Dr. Treon presents his guidelines into how and when WM should be treated.


Treon, Stephen P.  "How I Treat Waldenstrom's Macroglobulinemia." Blood. Vol. 114, Issue 12 (17 Sep 2009); pp. 2375-2385.  Also available online.  (Article provided with permission of the author.)




A downloadable (but not printable) review of the most recent results (as of September, 2010) reported for the use of new combinations and new drugs in patients witn WM at different stages of the disease.


Garcia-Sanz, Ramón and Ocio, Enrique M.  "Novel treatment regimens for Waldenstrom's macroglobulinemia."  Expert Rev. Hematol. 3(3), 339-350 (2010).  (Article provided with permission of Expert Reviews.)



A review of 44 published clinical trials in WM, along with recommendations for new response criteria and definitions of time to event analysis to be used in reporting data from future clinical trials (April, 2010).


Rourke, Meghan, Anderson, Kenneth C., and Ghobrial, Irene M.  "Review of clinical trials conducted in Waldenstrom macroglobulinemia and recommendations for reporting clinical trial responses in these patients".  Leukemia & Lymphoma 2010; 51(10):  1779-92. (Article provided with permission of Irene M. Ghobrial).


A variety of articles on the biology and potential side effects of rituximab (Rituxan) that were published in the journal Seminars in Hematology, Volume 47, Issue 2, April 2010.  (Articles provided with permission of Elsevier/Rightslink Copyright Clearance Center.)


The website chemocare.com is sponsored by the Scott Hamilton CARE Initiative at the Cleveland Clinic Taussig Cancer Center. It lists the most commonly used chemotherapy drugs, along with information about how these drugs are administered and their potential side effects.


A guide to the details behind autologous stem cell collection, storage, and transplantation - including the step-by-step process, with pictures and diagrams.  This document was developed by the European Group for Blood and Marrow Transplantation as a guide for Nurses and Other Allied Health Care Professionals.  


European Group for Bone and Marrow Transplantation.  "Haematopoietic Stem Cell Mobilisation and Apheresis: A Practical Guide for Nurses and Other Allied Health Care Professionals." 2013. 


NOTE: Stem cell collection, storage, and transplantation procedures will vary from country to country, and will change over time.  This document is presented as a guide regarding what one may expect in a given situation.  Please be sure to consult with your health care team as to the appropriate procedure that will fit your particular situation.