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

IWMF Library

The IWMF Torch Quarterly Newsletter

 

The latest Torch newsletter and past issues of the Torch are available by clicking here.

 

IWMF Special Bulletins

 

Summaries of Educational Forum proceedings, issued as IWMF Special Bulletins, can be found by clicking here.

 

IWMF Publications »

Booklets and other publications are published by the IWMF to address many aspects of the disease and to provide the WM patient and caregiver with the information needed to confront the diagnosis of WM, to cope during therapy, and to emerge a survivor. These publications include content that provides answers to basic questions about WM, that explains how to interpret various medical and blood tests, that outlines the intricacies of the immune system, and that discusses options when treatment is called for. Most of these publications are directed to laypersons, and they are revised continually as our knowledge of WM advances.
 
Our publications can be downloaded directly from our website. Several of our more popular ones are also included on CDs that are part of the Info Pak for New Members, the WMF Canada Info Pak, and the Info Pak for Physicians, Nurses, and Other Health Professionals, which are mailed upon request. Our publications are available by clicking here.

 


Papers About WM - by Researchers & Veteran WM Patients »


Blood Tests Explained  DOWNLOAD PDF
Reading your blood tests can be especially confusing and often misleading. We highly recommend that you print out this article and learn to make sense of your blood and laboratory tests. We also recommend that you start plotting your blood values on graph paper, since often absolute values are not as important as their rate of change and trend analysis can best be understood by graphical displays. Compiled and edited by Barb Hauser.


Immunoglobulins Explained
  VIEW ONLINE   DOWNLOAD PDF
The most important factor in WM is the level of a specific protein known as IgM, which is overproduced by malignant B-cells and can cause hyperviscosity syndrome, as well as problems with other blood factors. Other immunoglobulins are also important. This paper by Dr. Guy Sherwood, a WM patient and IWMF member who is also a medical doctor, will explain the differences and functions of these important components of the immune system.


Serum 2 Beta Microglobulin Explained 
VIEW ONLINE   DOWNLOAD PDF
A little understood smaller protein, serum 2 beta microglobulin, is especially relevant since it is one of the best ways to evaluate the extent of the disease and tumor burden. An equally complex differentiation is between light and heavy protein chains, and Dr. Guy Sherwood explains the relevance.


Do Waldenstrom’s Patients Qualify for Social Security Disability Insurance (SSDI) Benefits? VIEW ONLINE

Probably not (since WM is seldom disabling by definition), but if you are truly disabled by your disease and unable to work and support yourself, this article, written by IWMF member and attorney Howard Prestwich, can be shared with your attorney and give you the best chance to be approved for SSDI. Click on VIEW ONLINE then on the Disability Issues (U.S.) heading for additional information.


Glossary of WM related medical terms  VIEW ONLINE
 

Revised REAL Classifications  VIEW ONLINE
If you are dealing with your insurance company or HMO and trying to get payment authorization for treatment, it will help if you use the new revised REAL classification (Revised European-American Classification of Lymphoid Neoplasms) as Lymphoplasmacytic Lymphoma (B-Neoplasms, II.4).

 

 

IWMF Video Presentations »

The IWMF records all the key sessions of the Ed Forums and will soon be making them available on this website.

 

 

International Workshop Proceedings »

For further information about the Workshops and to see abstracts of presentations at each Workshop, go to the Workshop website:http://www.wmworkshop.org


The International Workshops on Waldenstrom's Macroglobulinemia
In the year 2000 the IWMF took the initiative to convene the top WM researchers worldwide to discuss research and treatment issues. The 2000 workshop in Bethesda, Maryland, was the first conference ever dedicated to WM research, even though Dr. Jan G. Waldenström first described the disease in 1944. Since that first “International Workshop on Waldenstrom’s Macroglobulinemia," the IWMF has been a sponsor of the event.

 

The International Workshops continue to provide a unique opportunity for all who conduct research worldwide on the genetic basis, pathogenesis, and treatment of WM to gather together in one place and share their findings. Research publications, authored by the participating WM experts, follow each Workshop. Of primary importance to WM patients and caregivers is the update of current treatment recommendations for WM that is published as a summary report by the consensus panel that meets at the end of each Workshop. Below are several such publications.

 

 

Seventh Workship (IWWM7) - Newport, RI, August 2012

 

Sixth Workship (IWWM6) - Venice, October 2010

  • Summary of abstracts and presentations, compiled by Dr. Guy Sherwood and prepared in layman's terms for IWMF members who do not have a background in medical terminology or research processes: DOWNLOAD PDF / French Translation

 

Fifth Workshop (IWWM5)–Stockholm, October 2008:

  • Summary of abstracts and presentations, compiled by Dr. Guy Sherwood and prepared in layman’s terms for IWMF members who do not have a background in medical terminology or research processes : DOWNLOAD PDF / VIEW ONLINE / French Translation
  • The official “Workshop Update on Treatment Recommendations” and other journal articles were published March 2009 in Clinical Lymphoma and Myeloma.

Fourth Workshop (IWWM4)–Kos, June 2007:

  • Summaries of abstracts and presentations, compiled by Dr. Guy Sherwood, M.D., can be found in the Fall 2007, Winter 2008, and Spring 2008 issues of the IWMF Torch.
  • Journal Article: Update on Treatment Recommendations from the Fourth International Workshop on Waldenström's Macroglobulinemia, Dimopoulos, et al. Journal of Clinical Oncology 2009;  27(1):120-126. Reprinted with permission. Copyright 2008 American Society of Clinical Oncology. All rights reserved. ASCO online resource for cancer patients and survivors can be found at http://www.cancer.net. DOWNLOAD PDF
  • Journal Article: Update on Therapeutic Options in Waldenstrom Macroglobulinemia, Lelieu, Gay, et al. European Journal of Haemotology 2009; 82(1):1-12. DOWNLOAD PDF

Third Workshop (IWWM3)–Paris, October 2004:

  • Journal Article: Update on Treatment Recommendations from the Third International Workshop on Waldenstrom’s Macroglobulinemia, Treon, et al. Blood 2006; 107(9):3442-3446. Epub 2006 Jan 12. DOWNLOAD PDF

Second Workshop (IWWM2)–Athens, September 2002:

  • The publications from this workshop comprised the entire 300+ pages of Seminars in Oncology 2003; 30(2). The doctors at this event came to a consensus on a number of critical points of the disease.
  • Journal Article (abstract only): Prognostic markers and criteria to initiate therapy in Waldenstrom's macroglobulinemia: consensus panel recommendations from the Second International Workshop on Waldenstrom's Macroglobulinemia, Kyle, et al. Seminars in Oncology 2003; 30(2):116-120. Abstract is at: http://www.ncbi.nlm.nih.gov/pubmed/12720119 .
  • A summary of the workshop, presented by Ben Rude (then president of IWMF), can be found in the Winter 2002 edition of the Torch in the President’s Corner article.


First Workshop (IWWM1)–Bethesda, MD, September 2000:

  • This workshop was the first-time conference for those doing research on WM. The doctors and scientists quickly concluded that much work had to be done to develop standard treatments and protocols for the disease. As a result, the group of 21 attendees decided to put more time into WM research and to meet again in the future. The IWMF initiated this Workshop and obtained the assistance of the US National Cancer Institute (NCI) to hold the meeting.
  • A summary of the workshop, presented by Ben Rude (then president of IWMF), can be found in the Fall 2000 edition of the IWMF Torch in the President’s Corner article.

 

Additional References and Readings »

 

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."  Blood, December 23, 2013 (2013-09-525808); article provided with permission of the author.  Note: this study was funded in part with the generous support of the IWMF.

 

About WM and Treatment Options (PDF) (Powerpoint).  Stephen Ansell (Mayo Clinic, Rochester, MN) provided the slides for his presentation at the LRF Ed Forum in New York City on September 24-26, 2013.

 

Novel Treatment Options for WM (PDF) (Powerpoint). Irene Ghobrial (Dana Farber, Boston, MA) provided the slides for her presentation at the LRF Ed Forum in New York City on September 24-26, 2013.

 

Blood morphology and chemistry. If you still want more information on this topic, go to the following pages provided by Dr. John W. Kimball, professor emeritus of biology and immunology at Harvard and Tufts Universities.


Blood: http://www.ultranet.com/~jkimball/BiologyPages/B/Blood.html#lymphocytes
Apoptosis: http://www.ultranet.com/~jkimball/BiologyPages/A/Apoptosis.html
Cholesterol: http://www.ultranet.com/~jkimball/BiologyPages/C/Cholesterol.html
Bone Marrow Transplants: http://www.ultranet.com/~jkimball/BiologyPages/M/MarrowTransplants.html


The Lymphoma Research Foundation has much good information available at http://www.lymphoma.org/.

 

Are you sure this is Waldenstrom macroglobulinemia? In this article, Dr. Irene Ghobrial presents a comprehensive summary of the current understanding (as of 2012) of the symptoms and manifestations of Waldenstrom macroglobulinemia.  Ghobrial, Irene M. "Are you sure this is Waldenstrom macroglobulinemia?" ASH Education Book December 8, 2012 vol. 2012 no. 1 586-594. (Article provided with permission of the author.)

 

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, Steven 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 reported for the use of new combinations and new drigs in patients with 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 National Comprehensive Cancer Network (NCCN) Clinical Practice Guidelines for WMpublished August, 2012 (version 2.2013), provide statements of evidence and consensus regarding currently accepted approaches to treatment.  The NCCN is a non-profit alliance of 21 cancer centers in the U.S. whose goal is to improve the quality and effectiveness of cancer provided to cancer patients. 

 

The US National Cancer Institute's Waldenstrom's Macroglobulinemia Family Study Newsletter, dated Spring 2010, provides a summary of the study activities and scientific findings based on data from 116 families (567 people in total)

 

Survivorship: It’s difficult to continue to function as we did pre-diagnosis, and it is tempting to "become our disease" and dwell on the dangers and disabilities we do now or may yet face in the near future. But we have a choice. We can think like victims or think as survivors, and, though it’s really not that simple, how we think and act will make a great difference, maybe even the difference between living well and not surviving. Here are some tools for survivors available from the National Coalition of Cancer Survivorship: http://www.canceradvocacy.org.

  • The Cancer Survival Toolbox™
  • What Cancer Survivors Need to Know About Health Insurance - 1st copy free, additionals $2.00 each
  • Working It Out: Your Employment Rights As A Cancer Survivor - 1st copy free, additionals $2.00 each
  • Teamwork: The Cancer Patient’s Guide To Talking With Your Doctor - 1st copy free, additionals $2.00 each
  • Self-Advocacy: A Cancer Survivor's Handbook - 1st copy free, additionals $2.00 each
  • You Have the Right to be Hopeful - 1st copy free, additionals $2.00 each
  • A Cancer Survivor's Almanac: Charting Your Journey - $3.50 each

Five Wishes For Healthcare Planning.  Five Wishes is a booklet and online resource you can use to let your family and doctors know: who you want to make healthcare decisions if you are unable to; the kind of medical treatment you want or don't want; how comfortable you want to be; how you want people to treat you; and what you want your loved ones to know.  To complete your personalized Five Wishes online and print it, go to Five Wishes online. Or, if you would like a free copy mailed to your home, please email the IWMF Office () with your request.

 

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.