The Waldenstrom's Weekly

May 26, 2023

Volume 3, Issue 18

"Thank you so much for making the wonderful and soothing chair yoga available to me when I am able to do it.." -J.G.  

- Research -

Lymphoma Coalition: Report Card on Lymphomas

From the Lymphoma Coalition:

The information in this report is largely based on the learnings from the 2022 Lymphoma Coalition Global Patient Survey on Lymphomas and CLL (LC 2022 GPS) which included 4085 patient respondents living with an indolent lymphoma.

This report focuses specifically on the experience of those diagnosed with an indolent lymphoma, and the challenges living with a chronic cancer brings. Despite the existence of defined care pathways and referral processes, patients’ experiences are rarely linear and always unique, which allows space for gaps in support. Through gaining a better understanding of the challenges and issues that patients’ face during each phase of their care, LC hopes to bring awareness to and aid in bridging these gaps.

Thank you to the 885 WM community members who completed the 2022 Lymphoma Coalition Survey!

Paid Research Opportunity:

For Adult Children Caregivers of U.S. WM Patients

The following is an opportunity for children caregivers of Parents with WM in the U.S.: 

Dr. Carma Bylund and Dr. Carla Fisher at the University of Florida are conducting a study of a newly developed online program for cancer caregivers. They invite you to take part in and provide feedback on this self-guided, interactive, video-based program called the Healthy Communication Practice^TM Program. It was designed to support the important work you are doing as you care for your parent with a blood cancer.

You will be compensated for your time and participation. The first 100 participants to complete the pre-program electronic survey, the interactive video program (in two parts, approximately 90 minutes total), and the post-program electronic survey will be sent a $150 Amazon e-gift card. You will receive an additional $45 Amazon e-gift card once you complete a final short survey three months later. 

You are eligible to participate if you meet all of the following requirements: 

• You provide care for a living parent, step-parent, or parent-in-law with a blood cancer
• Your parent has had the diagnosis of a blood cancer for at least 3 months
• Your parent is either a) still in treatment, or b) completed treatment within the past year
• You are an English speaker, 18 years of age or older, and reside in the U.S. 

To participate, or if you have questions, please email the study team at alyssacrowe@ufl.edu.

Recording Available ! Cardio Flow for WM

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!

Helpful Resource: Neuropathy Toolkit

The Zakim Center at Dana-Farber Cancer Institute

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.

WM Community Corner

Peter DeNardis, IWMF Board Chair, wore his IWMF shirt at the Point State Park Fountain in Pittsburgh, PA, US. Pete and his wife Terri take regular 8-mile weekend walks along the rivers in Pittsburgh. Where are YOU wearing your IWMF swag? Send a photo to mpostek@iwmf.com.