The Waldenstrom's Weekly
December 9, 2022
Volume 2, Issue 47
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"I have learned so much from you and your website, and especially from participating in Ann Grace's yoga classes." -G.B. |
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Do you Have Extramedullary Disease?
Please Participate in our Survey
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As if getting WM wasn't rare enough, some patients find that their WM has gone places that were unexpected- Extramedullary (EMD) Disease or "Wandering Waldenstrom's" as we have been calling it. (EMD occurs when WM/LPL cells form tumors outside the bone marrow in the soft tissues, bones, or organs of the body.)
The IWMF recently held an international meeting for WM patients who have been diagnosed with some type of extramedullary involvement of WM.
This is a patient-driven initiative to collect information from folks who have been diagnosed with EMD of the WM/LPL. If that's you, we love it if you could spare a few minutes and complete a very short survey. We are planning a follow-up meeting in the spring and hope to be able to find a speaker who is familiar with these complications.
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Centers for Disease Control and Prevention
COVID-19 Update: Clinical Guidance and Patient Education for Bivalent COVID-19 Vaccines
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Tuesday, December 13, 2022,
2:00 PM – 3:00 PM ET
Webinar Overview:
COVID-19 vaccination provides protection against serious illness and outcomes associated with COVID-19, including emergency department or urgent care visits, hospitalizations, and death. Bivalent COVID-19 vaccines, containing original and Omicron BA.4/5 spike protein components, help restore protection that has waned since previous vaccination.
During this webinar, presenters will discuss updates on bivalent vaccines including the most recent vaccine effectiveness data, the Centers for Disease Control and Prevention’s clinical guidance for bivalent vaccines, and strategies for communicating with patients about COVID-19 vaccination.
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CancerCare Connect Education Workshop
Diffuse Large B-Cell Lymphoma (DLBCL): Treatment Updates
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Wednesday, January 11, 2023
1:30 – 2:30 pm, Eastern Time
Registrants can listen in live over the phone or online as a webcast.
Topics Covered
- Overview of Diffuse Large B-Cell Lymphoma, in the Context of COVID-19 & Omicron Variants
- Staging & Grading
- Current Standard of Care
- Treatment Options for Resistant Disease
- New and Emerging Treatment Approaches
- The Role of Clinical Trials
- How Research Contributes to Treatment Choices
- Tips to Manage Side Effects, Symptoms, Discomfort & Pain
- Key Questions to Ask Your Health Care
- Team about Quality-of-Life Concerns
- Guidelines to Prepare for Telehealth/Telemedicine Appointments, including Technology, Prepared List of Questions & Discussion of the 2021 Care’s Act
- Questions for Our Panel of Experts
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Want to Learn How to Participate in IWMF Patient Discussion Groups? We Need YOU! |
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Feeling unsure about how to join the IWMF CONNECT or Facebook patient discussion groups? We are here to help. We are looking for 9 MORE people to work with Shelly to get connected to the platform(s) of your choosing in December. Contact [email protected] to sign up or for more information.
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Today! Cardio Flow with Ann
Sunday- Yoga Nidra
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Cardio Flow - 45 minutes of Mindful Movement
Physical activity is the number one intervention for cancer-related fatigue. This medium-paced class will feature cardio, strength, and balance training to safely get the heart rate up for those managing WM. Come as you are and have a little fun while you’re at it! Email Michelle at [email protected] right away so you can join today!
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Yoga Nidra with Ann- This Sunday, December 11th!
Ann is inviting those affected by WM to her 30 minute guided relaxation practice. Yoga Nidra meets live on Zoom this Sunday at 4:00pm U.S. ET. Yoga Nidra can reduce stress levels, help you sleep better, and elevate your well-being.
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Helpful Resource: Neuropathy Toolkit
The Zakim Center at Dana-Farber Cancer Institute
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To help you manage symptoms of chemotherapy-induced peripheral neuropathy, the Zakim Center at Dana-Farber Cancer Institute has developed a toolkit of short, self-guided videos. You'll find self-massage, self-acupressure, guided imagery meditation, exercises, and more. In each video, Zakim staff members demonstrate evidence-based techniques and provide practical information to help you alleviate your symptoms.
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Leukemia & Lymphoma Society
Urgent Need Program Available to U.S. Patients
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The Leukemia & Lymphoma Society Urgent Need Program provides eligible patients with assistance for non-medical expenses including rent, mortgage, lodging, utilities, childcare, elder care, food, transportation, car repair, car insurance, phone service, and acute dental work related to treatment. Eligible patients will receive an annual grant of $500. At the end of the 12- month period, your healthcare professional or specialty pharmacy can re-apply on your behalf. The Urgent Need Program continuation is dependent on the availability of funds and the program could be modified or discontinued at any time if funding is limited or no longer available.
Applications are only accepted by members of your healthcare team. Healthcare team members can apply through the online portal, or contact LLS at (877) 557-2672.
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Rick Savoy (Massachusetts) is displaying his new IWMF ornament on his Christmas tree. Thank you Rick for supporting the IWMF! Shop IWMF merchandise HERE!
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Support the IWMF through Amazon Smile |
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This holiday season, you can make a difference for people living with Waldenstrom’s macroglobulinemia with the click of a mouse.
When you sign up for Amazon Smile and choose The International Waldenstrom's Macroglobulinemia Foundation Inc, a percentage of your eligible purchase goes to IWMF at no extra cost to you.
Here’s how to sign up… It’s quick, easy, and free!!!
Sign in with the same account you use for Amazon.com.
Select The International Waldenstrom's Macroglobulinemia Foundation Inc
Happy shopping and thank YOU!
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IWMF is dedicated to supporting and educating everyone affected by WM while advancing the search for a cure. 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 [email protected] or visit www.IWMF.com
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