The Waldenstrom's Weekly

June 2, 2023

Volume 3, Issue 19

"The IWMF has been the best resource for me in my WM Journey." -B.T.  

- Treatment -

Survey Opportunity to Help WM Patients in Canada

From the WMFC:

Lymphoma Canada is collecting data on WM patient experiences, and is seeking assistance to reach the largest possible population of WM patients. Your input is vital for process by which Canadian health agencies and provinces determine whether to fund certain treatments for WM. Read more below.

To quote Lymphoma Canada's email:

"Lymphoma Canada is preparing a submission for the Canadian Agency for Drugs and Technologies in Health (CADTH), and the Quebec equivalent INESSS (Institut national d'excellence en santé et services sociaux). This survey provides us with patient input required for the submission. CADTH uses this information to help them make recommendations to the provinces and territories regarding funding for new cancer drugs.

The drug that will soon be reviewed by CADTH/INESSS is Ibrutinib, a BTK inhibitor, as a single agent or in combination with rituximab, for the treatment of relapsed/refractory Waldenstrom's Macroglobulinemia (WM)."

You do not need to live in Canada to complete this survey. You can still participate in this survey if you are a WM patient that has not received this therapy.

BY COMPLETING THIS SURVEY, YOU ARE PART OF THE PROCESS THAT MAY HELP PATIENTS GAIN ACCESS TO THIS TREATMENT IN CANADA.

It should only take between 15-20 minutes of your time.

Thank you for your support.

- Education -

Podcast Available from CancerCare:

Update on COVID for People Living with Cancer

& Their Caregivers

Topics Covered

• How to Protect Yourself & Your Loved Ones from COVID, Omicron & Delta Variants
• COVID Vaccines & Booster Vaccines
• Other Vaccines - Flu, Pneumococcal & Shingles Vaccines
• COVID & People Living with Cancer
• Where to Find Reliable Information Regarding this Pandemic & Its Variants
• How to Protect Yourself, Loved Ones & Children from COVID & Its Variants
• The Increasing Role of Telemedicine/Telehealth Appointments
• How to Prepare for Your Telemedicine/Telehealth Appointments, including Prepared List of Questions, Follow-Up Appointments, Quality-of-Life Concerns & Discussion of OpenNotes
• Working Closely with Your Health Care Team about Your Wishes & Health Care Directives
• Tips to Manage the Practical, Emotional & Financial Stresses Related to COVID, Omicron Variants & Cancer
• Self-Care & Stress Management Tips
• Questions for Our Panel of Experts

The IWMF is proud to have a volunteer-based telephone and e-mail LIFELINE intended to address specific WM questions from our community members. The LIFELINE is staffed by WM patients and caregivers who are willing to share their experiences in specialized areas. These volunteers do not give medical advice or treatment recommendations. However, LIFELINE volunteers have personal, and often extensive, experience on the topic(s) which they support, and they may be able to assist you in accessing better information or to refer you to experts in specific areas.

Check out the LIFELINE directory HERE.

Are you interested in being a LIFELINE volunteer? Contact [email protected].

Next Week: US Military Veteran Discussion Group

Next week, the IWMF will be hosting another sharing session for WM community members who are Veterans on June 7, 2023 at 2:00pm U.S. eastern time. 

The meeting will be moderated by Ray Vance, IWMF Lifeline Volunteer and Vietnam Veteran. For any questions, please contact Michelle Postek at [email protected].

Please register at the button below for the meeting. Once you register, you will receive a confirmation email in your inbox with the Zoom link.