The Waldenstrom's Weekly

June 14, 2024

Volume 4, Issue 24

The IWMF mission statement is to support and educate everyone affected by Waldenstrom’s macroglobulinemia (WM) to improve patient outcomes while advancing the search for a cure.

- Special Announcements -

- Education -

Want to find out how reiki can support your cancer journey? Join Usui Reiki Master Teacher Sharon Rivet to learn more about this holistic healing system. Reiki can help manage pain and stress, strengthen immune system function, and energize the whole body. With Sharon’s guidance, we’ll cultivate a deeper awareness of our own energy through a few reiki exercises selected especially for the WM community. Come with all your reiki questions for Sharon, who was diagnosed with WM in 2018.

New Fatigue Video Resources from BMT InfoNet

The Blood & Marrow Transplant Information Network (BMT InfoNet) has released two new videos on living with chronic fatigue.

What you will learn:

• what causes chronic fatigue
• why it's different from normal fatigue
• how to conserve energy for activities that are important to you
• why too much resting can actually make chronic fatigue worse
• how to build an exercise program to reduce fatigue

Video 1: Living Well after Treatment: Coping with Fatigue

Video 2: Fighting Fatigue: Ways to Save Energy and Build Back Endurance

CancerCare Workshop on Thursday, June 20th

Diffuse Large B-Cell Lymphoma (DLBCL): New Treatment Approaches for Relapsed Refractory DLBCL

Thursday, June 20th, from 1:30 – 2:30PM ET

Registrants can listen in live over the phone or online as a webcast.

Topics Covered

• Overview of Diffuse Large B-Cell Lymphoma (DLBCL), Including Staging and Grading, In the Context of COVID, Seasonal Flu, and RSV
• Current Standard of Care, New & Emerging Treatment Approaches
• Treatment Options for Relapsed Refractory DLBCL, Including Bispecific Antibodies
• Understanding How Bispecific Antibodies Work in the Treatment of Relapsed Refractory DLBCL
• The Role of Clinical Trials: How Research Contributes to Treatment Options
• Tips to Prevent & Manage Treatment Side Effects, Symptoms, Discomfort & Pain
• Talking with Your Health Care Team about Quality-of-Life Concerns
• Guidelines to Prepare for Telehealth/Telemedicine Appointments, Including Technology, Prepared List of Questions & Discussion of OpenNotes
• Questions for the Panel of Experts

- IWMF & FreeWill-

As we look forward to the future of supporting and educating everyone affected by Waldenstrom’s macroglobulinemia (WM) to improve patient outcomes while advancing the search for a cure, we invite you to plan for your own future through our partnership with FreeWill. Using their online estate planning tool, you can create a will or revocable living trust 100% for free and protect the people, communities, and causes you care about.

Gentle Mat Yoga - TODAY at 11:00AM ET

Roll out your mat! This 60-minute, all-levels mat class will move at a gentle pace, with mindful transitions up and down to the floor. Expect to use a range of yoga tools, such as breathing exercises, meditation, and yoga postures. We will leave time for a rest pose at the very end. No yoga experience necessary. Optional: stick around to connect with the WM wellness community after class. Reach out to Ann Grace if you’d like the Zoom invite or recording: anngrace@iwmf.com.

Chair Yoga at 9:00AM on June 19th: Special Time!

Yoga is an ancient mind-body practice that can improve quality of life for those affected by chronic illnesses like cancer. Try this gentle, inclusive yoga practice to stay balanced in mind, body, and spirit. Both seated and standing options available, all levels welcome. Optional: stick around to connect with the WM wellness community after class. Reach out to Ann Grace if you’d like the Zoom invite or recording anngrace@iwmf.com.

Yoga Nidra on Friday, June 21st at 2:00PM ET

Rest is a powerful and much-needed medicine for many of us. Accessing this innate state of relaxation is one of our goals during Yoga Nidra, a guided meditation where we are given cues to release effort and explore the internal mind-scape. In fact, research on Yoga Nidra has shown that it can decrease stress levels, improve sleep quality, elevate well-being, and increase the mindfulness of the participants. Our 30-minute session can be done from bed, the couch, or an infusion chair. Reach out to anngrace@iwmf.com to receive our Zoom invitation and for follow-up recordings.

WM Military Veteran Support Group on June 28th

The IWMF is proud to be hosting a discussion group for WM community members who are military veterans. The meeting will be held on Friday, June 28^th, from 2:00PM – 3:00PM ET via Zoom. Topics for discussion will include sharing experiences, navigating the Veterans Administration, and more. The meeting will be moderated by Ray V., IWMF Volunteer and Vietnam Veteran. 

Register HERE for the meeting.

In Case You Missed It: Sound Meditation for WM

“This was so peaceful! I could feel my breathing slow down within about two minutes.” - Alison W.

Relax to the sound of authentic Himalayan Singing bowls, with gentle verbal guidance and healing chants to further calm the nervous system. 

WM Community Corner

On June 2, Dr. Shayna Sarosiek of Dana-Farber Cancer Institute met with the DC/MD/VA & Philly Support Groups to present Updates on the Management of Waldenstrom Macroglobulinemia. This session is a helpful resource to individuals wanting the latest information in WM treatment, especially those who are newly diagnosed. A special thanks to Dr. Sarosiek for all that she does to serve the WM community.

Bob Perry, WM Ireland Affiliate Leader, was recently featured in the webinar Patient-Centered of Patient Driven? Exploring New Ways of Patient Collaboration.

Waldenstrom's Weekly is a free service to WM community members to share WM related news and events. Click on downloading photos at the top to view all content. For more information, email info@IWMF.com or visit www.IWMF.com