Contact

  • 6144 Clark Center Ave.Sarasota, FL 34238
  • Phone: 941-927-4963
  • Fax: 941-927-4467
  • [email protected]

Webcasts

IWMF partner organizations created the following webcasts for people living with Waldenstrom’s macroglobulinemia (WM), their families, partners, caregivers, friends, and health care professionals. These web-based videos provide an easy way to learn about WM from the experts.  Additionally, please note that we have posted the IWMF webinars which can be found under Videos & Presentations.
Please be aware that these webcasts are hosted on IWMF partner websites and that accessing them will require the viewer to leave this page and the IWMF website.

2020 Oncology Learning Network, Blood Bytes, a hematology podcast.
Steven P. Treon, MD, PhD, Director of the Big Center for Waldenstrom’s macroglobulinemia, Dana-Farber Cancer Institute and Professor of Medicine at Harvard Medical School, Boston.Christian Buske, MD, Medical Director at the Comprehensive Cancer Center and the Institute of Experimental Cancer Research at the University Ulm, Germany

Oncology Learning Network has produced a series of hematology podcasts (Blood Bytes), including this one from the experts on rituximab maintenance treatment for Waldenstrom’s macroglobulinemia.
The IWMF appreciates the efforts of Dr. Steven P. Treon, Dr. Christian Buske, and Oncology Learning Network for their time and effort to make this podcast possible.

2020 Oncology Learning Network, Debates and Roundtables video
Steven P. Treon, MD, PhD, Director of the Big Center for Waldenstrom’s macroglobulinemia, Dana-Farber Cancer Institute and Professor of Medicine at Harvard Medical School, Boston.
Christian Buske, MD, Medical Director at the Comprehensive Cancer Center and the Institute of Experimental Cancer Research at the University Ulm, Germany
Marie Jose Kersten, MD, PhD, Professor of Medicine, Amsterdam University Medical Centers, Netherlands
Prof. Judith Trotman, MBChB, FRACP, FRCPA, Concord Cancer Center, Concord Repatriation General Hospital and the University of Sydney, Australia

In this video, an international panel of experts sat down with Oncology Learning Network to discuss the 3 Burton’s tyrosine kinase (BTK) inhibitors active in the treatment of Waldenstrom macroglobulinemia (WM): ibrutinib, acalabrutinib, and zanubrutinib. Dr. Treon, Dr. Buske, Dr. Kersten, and Dr. Trotman explain the data behind each of these drugs, as well as factors a clinician may consider when choosing a BTK inhibitor for a patient, including availability, compliance, need for deeper IGM responses, efficacy, and toxicity. A transcript is included.
The IWMF appreciates the efforts of Dr. Steven P. Treon, Dr. Christian Buske, Dr. Kersten, Dr. Trotman, and Oncology Learning Network for their time and effort to make this video possible.

March 19, 2020 CancerCare Connect® Education Workshop

Panel of Experts:

Steven Treon MD, PhD – Director, Bing Center for Waldenstrom’s Macroglobulinemia, Professor, Harvard Medical School, Dana Farber Cancer Institute
Christian Buske MD – Medical Director, Comprehensive Cancer Centre and Institute of Experimental Cancer Research, University of Ulm, Attending Physician & Professor of Medicine, Medical Department for Internal Medicine III, Hematology/Oncology, University Hospital, Ulm, Germany
Carl Harrington – Chair, IWMF Board of Trustees, The International Waldenstrom’s Macroglobulinemia Foundation
Carolyn Messner DSW, OSW-C, FAPOS, FAOSW – Director of Education and Training, CancerCare

Topics Covered

  • What’s New in the Treatment of WM
  • Symptoms & Signs
  • Front Line Treatment of WM
  • Treatment for Relapsed/Refractory WM
  • Standard of Care & New Treatment Approaches
  • Clinical Trial Updates
  • Managing Symptoms & Side Effects, including Controlling Complications
  • Managing Peripheral Neuropathy
  • Key Questions to Ask Your Health Care Team, including Treatment Follow-Up Care
  • Quality-of-Life Concerns
  • Mapping the Future of WM
  • Questions for Our Panel of Experts

The IWMF appreciates the efforts of Drs. Treon, Buske, Ms. Messner, Mr. Harrington, and CancerCare® for their time and effort to make this program possible.

January 10, 2020 CancerCare® workshop

Panel of Experts:

Jeffrey V. Matous, MD, Myeloma and Plasma Cell Disease Program, Colorado Blood Cancer Institute
Georgie Cusack, MS, RN, AOCNS, Director of Education and Patient Safety, Office of the Clinical Director, National Heart, Lung and Blood Institute, Adjunct Nurse Leader, Nursing research and Translational Science, Clinical Center, National Institutes of Health
Carl Harrington, Chair, IWMF Board of Trustees, International Waldenstrom’s Macroglobulinemia Foundation
Carolyn Messner, DSW, OSW-C, FAPOS, FAOSW, Director of Education and Training, CancerCare®

Topics Covered:

  • Taking on the Role of Caregiving
  • Caring for Your Loved One with Waldenstrom’s Macroglobulinemia (WM)
  • What’s New in the Treatment of WM
  • Tips on Working with the Health Care Team to Manage Your Loved One’s Symptoms, Side Effects & Peripheral Neuropathy
  • Barriers to Adherence: Weekends, Holidays, Vacations, Special Occasions & Birthdays
  • Managing Family, Friends & Traditions
  • Long Distance Caregiving
  • Self-Care Stress Management Tips for Caregivers
  • Questions for Our Panel of Experts

The IWMF appreciates the efforts of Dr. Matous, Ms.Cusack, Ms. Messner, Mr. Harrington,  and and CancerCare® for their time and effort to make this program possible.

2019 Lymphoma & Myeloma Congress, New York (webcast from Oncology Learning Network)

Steven Treon, MD, PhD, FACP, FRCP, Professor of Medicine, Harvard Medical School, Bing Center for Waldenstrom Macroglobulinemia, Dana-Farber Cancer Institute, Boston, MA provided an update on the latest research in the treatment of WM.

Topics Covered:

  • MYD88 gene
  • BTK and HCK are targeted by BTK inhibitors, including ibrutinib and zanubrutinib
  • CXCR4 mutations targeted by antagonist ulocuplumab with ibrutinib
  • BTK inhibitor – acalabrutinib
  • Absence of the MYD88 gene in WM – treatment with protease inhibitor or bendamustine-based therapy, propensity to transform to aggressive lymphomas, such as DLBCL
  • Autologous stem cell transplant

The IWMF appreciates the efforts of Dr. Steven Treon, The Lymphoma & Myeloma Congress, and Oncology Learning Network for their time and effort to make this program possible.

April 10, 2019 CancerCare® workshop

Panel of Experts:

Stephen M. Ansell, MD, PhD, Professor of Medicine, Mayo Clinic College of Medicine, Consultant, Division of Hematology, Department of Internal Medicine, Mayo Clinic
Jorge J. Castillo, MD, Clinical Director, Assistant Professor, Harvard Medical School, Bing Center for Waldenstrom’s Macroglobulinemia, Dana Farber Cancer Institute

Topics Covered:

  • Overview of Waldenstrom’s Macroglobulinemia
  • Symptoms & Signs
  • Front Line Treatment for WM
  • Treatment for Relapsed/Refractory WM
  • Standard of Care & New Treatment Approaches
  • Translating Genomic Findings into New Treatment Opportunities for WM
  • Clinical Trials
  • Managing Symptoms & Side Effects, including Controlling Complications
  • Peripheral Neuropathy
  • Key Questions to Ask Your Health Care Team, including Treatment Follow-Up Care
  • Quality-of-Life Concerns
  • Mapping the Future of WM
  • Questions for Our Panel of Experts

The IWMF appreciates the efforts of Drs. Ansell and Castillo and CancerCare® for their time and effort to make this program possible.

June 27, 2018, CancerCare
Jorge J. Castillo, MD, Bing Center for Waldenstrom’s Macroglobulinemia, Dana-Farber Cancer Institute, Assistant Professor, Harvard Medical School.
Morie Gertz, MD, MACP. Consultant, Division of Hematology, Bone Marrow Transplant Program, Chair Emeritus Internal Medicine, Roland Seidler Jr. Professor Department of Medicine, College of Medicine, Mayo Distinguished Clinician, Mayo Clinic Rochester
Carl Harrington. President, IWMF – The International Waldenstrom’s Macroglobulinemia Foundation
Caroline Edlund, MSW, Online Support Group Program Director, CancerCare

Topics Covered

  • Overview of Waldenstrom’s Macroglobulinemia
  • Symptoms & Signs
  • Front Line Treatment for WM
  • Treatment for Relapsed/Refractory WM
  • Standard of Care & New Treatment Approaches
  • Translating Genomic Findings into New Treatment Opportunities for WM
  • The Role of Clinical Trials
  • Symptom & Side Effect Management, including Reducing Complications
  • Peripheral Neuropathy
  • Communicating with Your Health Care Team about Your Quality-of-Life
  • Mapping the Future of WM
  • Questions for Our Panel of Experts

Over 1,500 WM’ers from around the world tuned into the session to hear Drs. Castillo and Gertz discuss various aspects of WM treatment and symptoms, and respond to their questions. In case you missed it, here is your chance to enjoy this very informative session.

The IWMF appreciates the efforts of Dr. Jorge Castillo, Dr. Morie Gertz, Caroline Edlund, MSW and the CancerCare team for their time and effort to make this program possible.

On February 13, 2018, Dr. Stephen Ansell recorded this lecture for The Leukemia and Lymphoma Society (LLS). The lecture on WM, featuring Dr. Ansell, Professor of Medicine in the Division of Hematology at the Mayo Clinic, Rochester, MN is available at the LLS website(link is external).

This one hour video on WM includes:

  • Who needs treatment at presentation
  • Treatment options for newly diagnosed and relapsed patients
  • Standard treatment options
    • Newly diagnosed patients
    • Relapsed patients

LLS Virtual Lecture Programs offer a convenient opportunity to learn about the latest disease-specific information from medical experts. Dr. Ansell’s pre-recorded presentation on WM will be available to view for approximately 12 – 18 months. You can view the slides with transcript of the lecture(link is external) or view slides alone(link is external).

Support for this program provided by The Leukemia & Lymphoma Society in collaboration with The International Waldenstrom’s Macroglobulinemia Foundation (IWMF).

What's New in WM

Oct 4, 2017, CancerCare
Jorge J. Castillo, MD, Bing Center for Waldenstrom’s Macroglobulinemia, Dana-Farber Cancer Institute, Assistant Professor, Harvard Medical School.
Jeffrey V. Matous, MD. Myeloma and Plasma Cell Diseases Program, Colorado Blood Cancer Institute.
Carl Harrington. President, IWMF – The International Waldenstrom’s Macroglobulinemia Foundation
Sarah Kelly, MSW, Older Adult Program Coordinator, CancerCare

Topics Covered

  • Overview of Waldenstrom’s Macroglobulinemia
  • Symptoms & Signs
  • Front Line Treatment for WM
  • Treatment for Relapsed/Refractory WM
  • Standard of Care & New Treatment Approaches
  • Translating Genomic Findings into New Treatment Opportunities for WM
  • The Role of Clinical Trials
  • Symptom & Side Effect Management, including Reducing Complications
  • Peripheral Neuropathy
  • Communicating with Your Health Care Team about Your Quality of Life
  • Mapping the Future of WM
  • Questions for Our Panel of Experts

Over 1,000 WM’ers from around the world tuned into the session to hear Drs. Castillo and Matous discuss various aspects of WM treatment and symptoms, and respond to their questions. Countries with listeners outside the US include Australia, Belgium, Brazil, Canada, Chile, India, Italy, Finland, Mexico, Netherlands, Norway, Portugal, Thailand, Sweden, United Kingdom and Venezuela. Here’s your chance to enjoy this very informative session.

The IWMF appreciates the efforts of Dr. Jorge Castillo, Dr. Jeffrey Matous, Dr. Carolyn Messner and the CancerCare team for their time and effort to make this program possible.

What's New in WM

2017 Lymphoma Research Foundation (LRF) Annual North American Educational Forum on Lymphoma
Jorge J. Castillo, MD, Bing Center for Waldenstrom Macroglobulinemia, Dana-Farber Cancer Institute, Assistant Professor, Harvard Medical School.

Topics Covered

  • Overview of Waldenstrom’s Macroglobulinemia (WM)
  • Diagnostic criteria
  • Survival-patients with WM are living longer
  • Manifestations of WM
  • NCCN guidelines for initiation of therapy in WM
  • Therapy in WM
  • Genetics and Therapy
  • Novel pathways, novel targets, novel agents
  • Bendamustine, bortezomib, rituximab, ibrutinib are aa few of the treatment options
  • Ongoing trials with novel BTK inhibitors and BCL2 antagonists
  • Planned trials with CD38 and anti CXCR4 monoclonal antibodies

The IWMF appreciates the efforts of Dr. Jorge Castillo and the Lymphoma Research Foundation (LRF) for their time and effort to make this program possible.